Chrows25 aka Leather Woman

A case of mistaken identity

2012-02-13T20:41:00.000-06:00

My rheumy is really good about taking students, so he had one today who had to interview me first one and so we started off by him wanting to weigh me because I was concerned about weight loss. I couldn't remember ever saying that I was losing weight, but off I went to get weighed. Then I gave him my updated drugs list, so he is looking at my chart and saying, you are taking methhotrexate by injection now when did you change that? Anyway he kept asking me when I had changed this and that and I could see he was totally perplexed. Finally he says "You are Mrs. Espinosa aren't you?" to which I reply No...., poor guy somehow my chart had been put in the wrong place and I had an identity crisis!
Once we had a giggle about that and found my chart things went much better, he was pretty thorough and pleasant. I did get to see my real specialist after they conferred, it turns out he was “in med school” with my GP, helps when your docs all get along.
Anyway he wants me to see if I can try a different med for my Dysthymia or low level depression, as the one I take now is worsening the Sjogrens and may be why my teeth are falling out, so I will see what my GP says. Then he surprised me because I had expressed a bit of concern that my CK (a thing in your blood that shows how much muscle problem you have) I have was not going down enough, so I get to double the dose of my Methotrexate, so I made a face and he asked why, I explained that I would prefer to up the prednisone, then I asked him why he did not do that so he said it is because of the scleroderma and how it could mess with my kidneys a problem with sclero; but he did say if the methotrexate doesn’t help he might let me have a bit more prednisone.
I have to go to a speech therapist to learn to swallow liquids without choking; I wish she would tell me how to get back my old voice.
Anyway Dr. Robinson was laughing and so was I, he said I was weird, I told him I was very glad he had found that out at last.
He is also going to put me in touch with a woman who has tried to have a Sclero support group in Winnipeg, maybe together we can get something going together.
I am really lucky to have doctors who are real people and can share a laugh or two.
Have to get more blood tests of course. Then Sel dropped me off at the dental college, an X-ray showed very small root left, not worth root canal a post and then a crown could fall out anyway! An implant is very expensive, so forget that, a bridge is not cheap either but a tooth on a denture plate is feasible and much cheaper; but first we have to get the root out and there is not much above the gum to pull with?
Sel had to rush off and pick up James from school and then rush back to receive a phone call from Vic Toews an MP who has been helping fund the fixing up of our oldest house in Winnipeg, Barber House.
We are getting a grant; I don’t think I am to say how much yet, but it will pay most of the debts.
Sel spent the morning trying to get two of our neighbours released from the remand centre/jail. They have very little education and no sophistication so are just babes in the wood in the justice system, he is 73 and had to sleep on the floor the first night the bunks were taken, he still doesn’t have his medications. It is complicated to explain, she has FASD and so she doesn’t understand consequences, she is impetuous and often doesn’t learn or remember. In the wonderful way of the inner city, her Mom says, “she is retarded”, none of this politically correct “intellectually challenged” same as here we don’t have “sexually exploited women” we call them “hookers”.
It seems she has breached her bail five times, by not keeping her curfew or seeing a neighbour she is supposed to stay away from, hard as she is a woman of 30+ and he is her best friend, what are needed are some mediation and some recognition of her limited understanding. You could weep at the messes these simple but basically good people get into.
We are off to court tomorrow and we are going to stand bail for them but we are saying “if we see you together we will bust you,” because we can’t lose that money.
One of my favourite bloggers is in hospital, Frank from Portsmouth, England is in the cardiac ward, bored but getting good care.

Males and baseboards?

2012-02-12T21:37:00.000-06:00

The kitchen floor is installed with very little problem, it looks quite splendid, well certainly compared to before. Now I have to remain firm and cruel and insist that the baseboards be replaced, this is something that has been a problem in the past.
Males seem to think the only time that baseboards are necessary is when you have to sell your house and sadly, suddenly as you get ready to leave you see how nice and finished things look with baseboards.
Sel is going to go thru his cookbooks as he has quite a lot and try to send some to the Sally Anne. When I cooked I slavishly followed the recipe and some way or another it was close to disaster. Sel ad libs wildly combining two or three recipes at one time, the downside is that if he wants to repeat a very good recipe of course he can’t remember which ones were in it.
It was Bill’s last breakfast with us, before he heads off to Mexico, he brought blackberries and raspberries to share and we made French toast out of some stale French baguette along with some bacon.
We did drop in to the party last night and it was not too bad, some people I knew so I didn’t have to try and make small talk, I know about their lives so easy to chat. The funniest thing was that Bill was at that party we had no idea he was a friend of the hostess for many years as we have been too, not close friends but we have moved in the same circles.
BC (as in Before Chris), Sel and Bill had dated the same woman, not at the same time, but Sel was seeing her when I so rudely came on the scene, funny coincidences.
I am not a believer in Naturopathy or chiropractic, I think maybe for pain acupuncture may help, but I have never tried it. I have had a bit of chiropractic manipulation but really was not impressed, a brief improvement but no long term benefit.
Well meaning people are so eager to “help” me with their version of natural medicine. I always think it is all natural medicine because all big Pharma makes is made out of earthly products too.
I am such a barbarian I prefer coffee to green and herbal teas; I also delight in every study that finds the benefits of coffee.
Off to see the specialist tomorrow afternoon and then on to the dental college about the tooth that broke off last Thursday, I have to take it with me on the wild possibility it could somehow be cemented back in place.
Time for reading my Kobo now.

RARE DISEASE DAY IS COMING>>>>

2012-02-11T16:55:00.000-06:00

Today, Sel tore up the old laminated floor in the kitchen. WE are going to save it and recycle it out to the old gazebo as its floor is rather ancient, but not in an antique way.
The kitchen subfloor is in very good shape so that is a pleasant surprise, under the baseboards we did discover a few mouse dirts, not surprisng in a house that is 105 years old.
I pulled out my physio guide for doing exercises to strengthen my muscle. I was inspired by reading how a 14 year old with scleroderma, (one of the blogs I follow) is doing his.
I discovered I can do most of the exercises quite well. The problem appears to be that the movements I have to make in real life are not on the print-out.
That would be the one where you lift your leg into the passenger seat in the front. I can lift my leg really quite well up and down while seated,which surprised me, so I tried sticking it out to the side and lifting it into an imaginary car. BIG difference.
So I guess I have a new exercise to do.
Celebrating standing up by myself yesterday evening required peanuts followed by choclates....hmmmm. followed by indigestion and a pound gained on the scale this morning.
I am getting pretty familiar with the different types of Sclero now, within which we all move at our weird and wonderful different ways.
Slowly on the Myositis sites I am gaining knowledge too. There are four major kinds, but again within those groups there is no real conformity.
Some people have very sudden drastic onset, becoming quadraplecic and paraplegic; others are unable to swallow and start starving. Some respond rapidly to treatment and are back to "normal" in 6 months or a year; they are not cured but they are in remission.

I read some who go swimming,run,walk, dance and I am amazed. I wonder will I be able to do this in the future.
My onset was much slower and of course I was diagnosed with the Sclero so I assumed all the muscle problems were part of that, except I couldn't find anyone with the complications I had.
The myositis groups have the whole gamut of the disease. My case is somewhere in the middle, not nearly so bad as some others but it is not responding as fast as some other people. There are so many variables, age for one, not being diagnosed for a long time,who knows.
We have been invited to a party tonight, I'm not good at them and blessed with scabs and a missing front tooth, I am sure will not boost my confidence. There is also the lisping as the missing front tooth provides an air channel I haven't learned to control yet.
Sorry way to much about the diseases again. BUT, this 29th of February is "rare disease day", so I am expecting you all to go forth and pontificate on the wonders of auto immune diseases. Most people will not even know it is "Rare disease day", but you guys will be truly well informed.

Friday evening fun

2012-02-10T17:54:00.000-06:00

Just had a call from my wonderful dental student she says she was the right one to call, she wants me to come in after my appointment with the rheumy on Monday, She says to bring the whole tooth that broke off as sometimes they can glue the thing back on, if not it is probably a bridge. Good thing I didn’t swallow it!
Everybody including myself has remained continent today so we all feel very contented.
Frank my fellow Myositan posted an article on Face book today about David Cameron telling all the lazy old British farts to get back to work and stop expecting young people to support them; does that sound familiar fellow Canadians , David and Steven must be reading the same play book.
I remarked that in 1994 they were begging us to retire so young people could get jobs; also young teachers were less expensive not having pay increases because of seniority etc. In fact I was given a “Golden Handshake” to encourage me to retire. Of course I was very grateful at the time as I was developing some weird kind of arthritis, which may in hindsight have been the very early manifestations of the auto immune attacks waiting in the wings. Now it seems Golden Showers is more in vogue as in “Piss on greedy lazy old people”.
Remember when I used to save Wednesdays to moan about the Disease, Woeful Wednesdays I called them, now it seems as if there is some silly new bit of my organ recital ON a daily basis.
I can't believe what my husband and I are planning to do this evening; Bill a gent from Illinois on one of the myositis sites kindly posted an article about how to get up off the floor when you have poor muscle strength. So we going to spend Friday evening trying out the two methods, I have printed them out. The whole thing will be complicated by the dogs licking my face because "something" is wrong. A precautionary visit to the bathroom in advance will be required as too much laughing is dangerous. We used to go dancing on the weekends, but I never imagined trying to stand up as a planned Friday evening attraction!
Just read an article that Australia is ahead of us all and has already arranged an increase in the age of retirement. They will be slowly phasing in 67 as the age of retirement. We went out to pick up James from school and we stopped at a couple of stores to buy some new flooring for our kithchen, the old laminate is looking very shabby. While we were out somedog had a return of diarrhoea and as Dylan had stopped in to trim Roxy's nails he had the pleasure of clean-up. We found a deep discount on the end of a line of flooring, we both liked it and it was about half what we had expected to pay!

Dog and dental problems...

2012-02-09T20:26:00.000-06:00

Another dog has diarrhoea, but we are not sure which one, the mistake is made while we are out as of course they can’t get outside by themselves.
We went off to see the dermatologist this morning. He was pleased to hear that prednisone and Methotrexate were working on my scleroderma skin. Previously he had tried photo therapy to try and stop the wicked itching. I had to sign a thing up front saying I accepted the risks of skin cancer. So today I had two precancerous spots zapped on my face with his super cold spray, it will cause a scab and then when it falls off the underlying skin should be healthy again, so I will have two big scabs on my face BUT far better than the alternative. Sel really liked my dermatologist and as he is has a large number of “moles” (the skin kind not small digging rodents) he thinks he would like to transfer to my dermy as his is also a cosmetic surgeon and very casual with him. Sel liked how my doctor asked questions and also discussed pros and cons of things with me.
Greeted at home with a touch more diarrhoea, I feel particularly badly as I cannot bend over or stoop to clean it up, so it all falls to Sel. I have to say he is a really great guy and fortunately is as silly about animals as I am.
If I could spare him he would make a far better president than any of those idiots running on the republican ticket. He would be born in the wrong place, it would be the wrong party and he doesn’t have enough money. However would he ever shake up the USA, probably be assassinated in the first week.
Lunch was eventful too; we were eating cheese (mine soy cheese) sandwiches and chatting when I thought what the heck is a stone doing in my bread? It was not a stone it was one of my front teeth not the two teeth right in the middle but one of the ones next to them, it has broken off right at the root, I don’t think it is a crown. Fortunately it doesn’t hurt but I have a really bad smile now. I called my poor student who thought she was done with me and left a message and I hope she can set me up with another student or herself if she has a space.
Between scleroderma and osteoporosis I am in a big battle to keep my teeth, I may get sets of those perfect pearly choppers I have always fancied. Actually on consideration I think I am now under the care of my periodontal lady, so I think I should call that department. It doesn’t look to me that this tooth can be saved, in fact I am not sure how they will extract the root and I think it will have to be a “bridge” tooth.
Sel had an important meeting today. In one of our discussions, we had thought when social workers go into peoples houses why could they not report places that are not within the liveability by-laws; mostly the tenants are petrified to complain as the landlord may kick them out but if the complaint comes from a social worker, it protects the client and improves their clients living conditions. When he first suggested it people were not eager but Sel moved up the departmental ladder and found more interest at the top, so he may get some tenants this help.
With this missing tooth, I am re-thinking the whole face veil isssue, I wouldn't mind one for the next few weeks.

Wednesday posted on Thursday.

2012-02-09T14:02:00.000-06:00

Wednesday: I still have not found yesterday’s long blog; but doubtless it will appear one day. Today has been a day of tidying and organising. We are inclined to be pack-rats, but not close to hoarders, well except in pets.
There is much activity out side our side windows, as a crew has been at work for hours cleaning up the riverbank, after the big floods of the last couple of years a lot of trees were broken of by huge blocks of ice and others were standing in water for too long and it weakened them. I am extremely impressed as our community is often forgotten when it comes to beautification. There is also a safety factor with low hanging branches which can provide shelter for persons up to no good.
Aussie still doing well, I’m trying very hard to be sensible to avoid making my muscles worse and mostly wheeling about in my desk chair to tidy things up. The old shower curtain that we could not find turned up behind my socks basket??? I guess it seemed like a good place at the time. I also discovered that the white cat had been sleeping on my black socks so they have to be washed again as they are covered in her hair.
After Roxy had thrown up three times we sent her home for the night. Then we went shopping, the list looked quite short but the cart filled up very fast, so it was a pretty impressive bill. We dropped off a bag of stuff to the Sally Anne on the way home and Sel noticed a lovely red turtle neck an acrylic so not too itchy which was marked down by one third.
Quite exhausted by the time we got home, so I didn’t even post this blog which I actually finished today Thursday. Read in bed and ate peanuts , very messy!
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LOST BLOG?

2012-02-07T15:47:00.000-06:00

I had written a fairly long blog piece and it has disappeared and I simply can't find it. I am sure it is lurking in my computer somewhere.
I just don't feel like writing it again, so I will upload a couple of pictures.

This is me in the shower; finishing it is on hold now as days are a bit broken up with James coming and going to school.

Here is the dead Kobo, well I guess half dead but we do not have to send it back just a photo of its malfunction; there it is malfunctioning!

Scleroderma: An Unplanned Journey | You and Me Magazine

2012-02-07T13:00:00.001-06:00

I am not sure if this is going to work, but I just read this article and it is a view of scleroderma from the care-givers point of view. I also attempted to read a very learned publication about scleroderma. but I understood about 1% so I will spare you the pain!

\Scleroderma: An Unplanned Journey | You and Me Magazine

A bit of exercise back fires..

2012-02-06T19:28:00.000-06:00

Monday and Sel has two meetings, one at 1pm and another at 3pm, Dylan was able to use some of his banked time to take a day off to pick up Jamie after school, as Sel’s second meeting won’t be over in time.
Aussie doing not badly still very feeble compared to normal, but he is getting around needs a boost to get up on the couch. We have brought in a carpet that was stored in the garage as we felt it would give him more grip, the cats love it and are rolling about on it but Aussie is still lying on the wood floors.
Last night we were reading our Kobos when suddenly half of Sel’s screen went black; nothing we do seems to work, we studied online thru Google, seems to happen to quite a few people, sometimes stores replace with a new Kobo, others just tell you tough, oh right now he is talking to a guy at Kobo, they tried a reset button but no luck with that. It seems the store where it was purchased only has a 30 day replacement policy, but if we send the Kobo to them, they will replace it. This will take two or three weeks. Sel says he can read on his notebook thru this process.
Teresa is holding her own and avoiding fatty foods she sees the doctor tomorrow so I hope some tests will lead to a diagnosis. Her new and fixed computers are still in Winnipeg, our grand-daughter Emily’s boyfriend has come or is coming to town from Thompson so can take them back, Dylan thought Teresa said he was staying with us, that will be fine but I haven’t found him yet!
Change of plans, Sel called to get the correct address for his 3pm meeting and discovered either the time and date had been changed or he had recorded it incorrectly. Good thing he called.
I made a phone call to a fellow Myositan. This will only seem amazing to any of you who know my fear of making phone calls. I got to talk to a message machine. I like them as It means I don’t have to think “Oh it is a bad time or ???”
I am now going to vacuum with the lime green upright cleaner.
Damn, damn, and damn again, I was having a fine old time vacuuming when rip that sore muscle between my butt and the tops of my thighs just felt like it really tore. I am beyond super frustrated. Poor Sel is exasperated because now I have set myself back again. Now I even have trouble as I try to sit down.
Patrick, Emily’s boyfriend is apparently on his way to town but not staying with us, Em probably worried I will be a bad Nanny and scare the poor boy. Dylan is bringing the two lap-tops here so that Patrick can pick them up and take them back to Thompson.
The lap tops are here, but no Patrick so far. I am taking my very sorry and sore behind to bed and I will read my Kobo.

Super-bowl after all

2012-02-05T22:04:00.000-06:00

Sunday now, Aussie was in really bad shape yesterday evening so I volunteered to stay home with him, not as selfless as it sounds, as I really do not enjoy this sort of social occasion. Sel went with his cousin; they are born 3 months apart. Barb is a very interesting woman and has had a variety of experience including being an Anglican nun. She was also one of the first female techs for CBC.
Anyway, I thought I was on a death watch, but the old bugger has pulled thru and is very weak but still able to function, no leg lift to pee but a wide sort of squat, I can sympathise as I have to have rails to get off the toilet!
Bill was here for breakfast, we added hash browns to the menu, Sel having boiled some extra potatoes the other day; they had been in the fridge, but I was able to dice them without setting off a Raynauds attack, so damn unpredictable!
We tried to help Bill to load his new Kobo only to discover that his USB connector is not compatible with our connector the shape of one piece having been changed. This annoys me enormously, at some point I guess agreement was reached about having all the same “plug-ins” for the toaster, the telly and the vacuum cleaner.
Sel and I are not watching the super bowl. I am not even checking out Madonna, I saw a picture of her and she looks very youthful, but she looks less like Madonna, too much cosmetic surgery turned a cute brown boy into a white freak. This I do have to admit was partly due to vitiligo, another autoimmune, that I have a touch of, but the prednisone & methotrexate seem to be reversing that and I am looking far less speckled, it also does not show as much on Caucasian skin. Altho my shade of skin now is much darker than prior to Scleroderma.
Teresa seems to be OK as long as she stays away from any greasy food, but she sees her doctor on Tuesday. Teresa left her dysfunctional lap-top here for Dylan to move stuff to her new computer. After a bit of fiddling about and reading up online, he figured out how to fix the old one. Now she has a brand new one that she probably didn’t need, but until Dyl saw the old machine he couldn’t diagnose the problem.
Barb and Sel came home and had a few more glasses of wine. I had a wicked headache but did not want to take more painkillers, so I listened while picking all those nasty bobbly things that happen on the arms of ones favourite sweaters. Ridiculously I was dreaming this bobble removing as a very useful and safe employment for inmates at correctional institutions. No glamour for a gang-banger there!
Sel is cooking it smells very good.
I think I am going to negotiate taking back vacuuming the apartment, as I can use the upright, it is good exercise and useful. We have strategically placed chairs throughout so that I can sit once discomfort becomes too intense.
Sel decided to watch super bowl so I watched Madonna, amazing lady over 50 now (I think) and in very good shape, I can say with certainty that the good woman does not have scleroderma or any of the myositis family.
Soup was spicy and good!
Realise that in big dog years Aussie and I are about the same age, he might be a bit older. He is still able to get down on the floor and get up, more than I can do. Lot to think about with possible euthanasia in future, but for which one of us….

Mixed Saturday

2012-02-04T18:18:00.000-06:00

Saturday and a pretty lazy one, we slept in.
The bad thing is that our 15 year old dog is showing serious signs of age, he has fallen over outside a couple of times and has trouble getting up. He also seems a bit confused. We’ve seen this happen at around this age with our big dogs in the past, it is a very sudden but sharp decline. The horrible part is deciding when life is a burden for the poor old guy and facing euthanasia as the best choice.
We printed up some flyers for the POWERLINE our safety tip line, we deliver them to the whole neighbourhood, just as a reminder to newcomers and regular residents that we as a neighbourhood, don’t put up with drug dealing and gang hangouts.
Since it is just after the beginning of the month, we listed quite a few piles of mattresses and couches that did not get moved and were left in the back lane. Most poor inner city people move by taxi, so you leave the big stuff behind and ask a church for more furniture. It is usually forthcoming.
Later I have to type up the list of abandoned furniture for the city garbage department who will only pick them up if asked and they are given an exact address. There is no charge in this part of town.
Some people must change their furniture quite often to have so much used stuff to give away, Sel and I reckon we must despite all the pets be really easy on our furniture as it holds up well. Mind you we buy old stuff, not antiques, but old wooden dressers and wooden tables and chairs, the futons are sturdy and the covers washable. It is an eclectic look but I have never enjoyed the matching suites of cheap pressboard stuff that falls apart.
The last night of the New Music Festival was quite nice, but not as exciting as I hoped. I think that the Icelandic temperament must be a bit dour as the music that we heard seems to feel quite melancholic and flat.
Tonight we are off to a Social, this is a prairie thing, it’s a fund raiser dance with a small band or more often a DJ with CDs or some recorded programme of music, later in the evening rolls, bread, cold meats, cheese and pickles are served.
Before Scleroderma and Myositis, Sel and I were quite popular as “ice-breakers” we could be counted on to get up and start the dancing; usually people have to have quite a few drinks before they grace the dance floor. Sel and I fit no proper profile of dancing; we just move how the music tells us, we could almost know how the other would move. Also we loved an empty dance floor as we could make some big moves.
It is super frustrating now as I don’t have the strength to dance.
Very pleasant news is that one of our favourite landlords has bought the five tiny workmen’s cottages; they are all on one title so you have to buy them as a job lot. He does a really fabulous job of fixing places up; he will keep the feel of the places while bringing them up to code. I can’t wait to see them finished as I am sure they will look very quaint. They are very close to our son and daughter’s place it will improve the neighbours for them as Gord sets very high standards for his tenants. Another big apartment block has been renovated by a different landlord and they are looking very nice and the suggested rents also very reasonable.
Our neighbourhood is definitely improving, far less crime and housing improvements. We have a few bad streets with slum landlords so they can’t set standards as they can only rent to pretty rough and ready sorts.
It is time to go and think about supper and what to wear to the social. It’s difficult because I have to stay warm so that means layers of sweaters rather than elegance with plunging necklines is necessary.

Scary health problem, not me for once!

2012-02-03T18:42:00.000-06:00

We had rather a shock yesterday evening, I mentioned our daughter Teresa and her husband were on their way down to Winnipeg. They had to stop in Ashern at the hospital where Teresa was put on a morphine drip for extreme pain somewhere around the lower ribcage. The ER ruled out heart and pancreas but it could be an intestinal blockage or a gall bladder problem. She is picking up her art work and heading straight back to Thompson.
We went to our New Music Festival production as there was nothing useful we could do at that point. “La la la human steps” is an all in one production, the troupe comprised of dancers, musicians, composer choreographer etc. Technically the group was brilliant, but the 85 minute production was seriously boring, Cutting 60 minutes might make it work, I actually fell asleep during the performance, at least I didn’t snore.
It made it very easy not to stay and meet the cast after the performance and come home to see how our daughter was.
Teresa and Blair dropped in just now, they are going to pick up the art work or as much as they can and head back north. Teresa can get a CT scan up there; the doctor from the ER has sent a covering letter and the blood work from her stop in Ashern. She is scared to eat or drink in case it sets off another attack, she is a big girl so she won’t starve, but I did suggest a little water might be good.
Heard from son who is also unwell with gastric problems. Sel has a cold, not a full blown man cold or he may be being extremely stoic. (Oh come on spell check you don’t think stoic as a word well the Oxford dictionary does.) I am beginning to feel like the healthiest around here.

Groundhog Day

2012-02-02T17:15:00.001-06:00

Some groundhogs saw their shadows and some did not; it really doesn’t matter here as we know we have more than 6 weeks coming. Altho this has been such a mild winter with so little snow, such that complaining would be rude.
Good grief we are having more problems with internet and now the phone.
OK the shelf I did not explain where or why we needed a shelf. The shelf raises our computer screens up and we can put pens etc up higher, thus out of reach of the Meth Lab. The reason the screens are up higher is so that the cats can sleep on our desks as they are totally determined to do, merrily shedding hair into my keyboard. I have of course attempted to discourage the cats by pushing and pulling but I fail picking up so the easiest thing was to accommodate the felines.
Oh big news yesterday was that the earth moved very slightly in Winnipeg, we had a very minor earthquake, the epicentre was in Esterhazy Saskatchewan. I was totally unaware of it since it occured at 2.30am, had I registered anything I would have supposed one of the dogs was scratching.
This using a word doc, to write my blog and copying and pasting is working well as I can add stuff as I think of it and it spell checks except where I choose not to take out all my Us in Canadian/English English.
Just came close to a major melt down, tears almost. I was reading an article on coping with myositis and all you can do to help yourself. Swimming for instance would be really good for me, completely impossible because of the Raynaud’s. Going for walks, Raynauds again and wouldn’t get very far, walker not good on snow. Then doing Yoga was suggested, are you kidding me I can’t get up or down from the floor I have no sense of balance, getting in and out of the car is a major workout. It wasn’t a “Why me” feeling because my stock answer to that is “Why not you?” It was more a sense of frustration at how little I can even help myself.
Enough of that!
Teresa and Blair are coming down to the city and our grandson Jesse is playing hockey in Gimli his Mom and Dad ( I think) and Teresa and Blair are going to watch him. Then Teresa and Blair are going to spend Saturday with us. Good luck Jesse; we have tickets to the New Music Festival so I was feeling guilty, and Teresa said “don’t be daft Mom you would freeze”….good point, Ice rinks not the best place for me.
Have just spent half hour on line trying to get phone fixed; funny new world, I do enjoy it tho. I knew that we had a modem for the internet but not that we have one for the phone, it is probably somewhere in the basement , but Sel is out and I am forbidden to go down there if he is not home and even then it is a rare visit.
Now to clean and floss teeth to try and impress students. The sad part is I have had very ugly teeth all my life and I always looked forward to having lovely pearly white dentures. The profs tell me my mouth and lower jaw are so small that it will be very difficult for me to manage dentures especially the lower set.
Back from periodontist, things not so bad but could get worse so she recommends cleaning every 3 months.

Tonight at the New Music Festival they are incorporating dance so that will be very exciting. We were a bit disappointed with yesterday’s four pieces that just didn’t seem to get off the ground they almost could have been muzak.

Up on the net again

2012-02-01T18:26:00.000-06:00

So we are back at half internet, apparently all the changes that were wrought by Shaw either blew up our router or actually made our router obsolete, happily our son knows what needs replacing. He will buy it as he takes James for a birthday shop, we picked up some “guys” on the way home form school yesterday for James, he loves tiny bendable figures and produces long dialogues and activities with them and he happily plays all the parts.
We are also putting some more money in the Birthday Pot for the shopping trip, once kids arrive at the double digits; I have discovered one can waste a lot of money on surprises that turn out to be somewhat undesirable.
You have to hand it to the toy makers, the new “guys” are called “peace-keepers”, thereby circumnavigating Nanny and G’pa’s dislike of war toys particularly GI Joe.
Anyway Sel has custody of the internet today, I did get up on Facebook briefly to explain my sad condition, awful I am unused to his mouse which seems to be a very erratic little creature and the lightest touch with one of my bent fingers, send it into paroxysms of offers to copy, download or whatever.
We went to see “Mrs Warrens profession” last night, GB Shaw has not become dated, the actual situation might be different now, but we still see the same hypocrisy, where we turn a blind eye to where wealthy people’s money comes; blood diamonds, gold slavery, unsafe mines, asbestos for the third world; arms and military machines, sex slaves from Slavic countries, so we do come back to Mrs Warrens profession.
We were going to workout, but today Sel is feeling off colour so we will try for tomorrow, yesterday and today better days for me, ironically. I will continue house cleaning which turned out to be a good workout yesterday.
The periodontal department had a cancellation so I am to go tomorrow, they want me in 15 minutes early to complete a medical history……PEOPLE I am 71 years old this requires at least an hour. However I have written up my medical history and have it on file along with an ever changing medication list, which I have printed out and shall give to them, explaining with bent fingers and 71 years worth we are not squeezing it in to 5 lines.
Now off to have a weird little growth removed from Sel’s knee, I think benign, but annoying.
Returned from great expedition, Sel’s knee was merely looked at today, another appointment needed to remove the thingy. Continued over to Darcy’s ARC to take newspapers in for reuse; no kittens there all adopted, lots of cats and some lovely pups, and a big beautiful dog who made eye contact with me and I felt terrible because I don’t really think I should take on a another big dog. Then returned the battery gloves to Cabellas , no problem. We picked up stuff at Dollarama another non slip mat for the shower and folks you can safely eat roasts and turkey here, I bought a new ”kitchen only” baster and Sel gets to keep the yucky one in his plumbing kit.
Finally we had a veggie delite sub sandwich at Subway, we share a foot long Sel gets all the cheese on his side and the jalapeños too.
I was reading a women’s ‘mag, while waiting for Sel and it mentioned, if you have a friend on chemotherapy that they might feel badly after treatment. A few minutes later I was thinking how well I have felt yesterday and today and that I mustn’t Forget the shot in the behind tonight.
Well Doh? I feel better the days furthest from the shot, I imagined far worse things as a reaction to the chemo; like hanging over the porcelain throne and great suffering, maybe I do react but relatively mildly feeling tired and weak and grungy. Hell, this Methotrexate better be doing something good, I shall study this week to see if there is a pattern to my malaise.
We have undertaken a great shelf project, this is of course the royal we as mostly I sat and watched, I did pick up a whole bunch of paperclips that spilled and this was a challenge, seated and reaching side ways I found it worked. The shelf was of course recycled lumber of an unusual design. I think it was the end board of a kitchen cabinet somewhere sometime.

INTERNET WITHDRAWAL

2012-01-31T17:24:00.000-06:00

The internet has been down all morning, earlier on I checked my emails but suddenly the internet was unavailable, we were madly pulling out connections and plugs but all the usual tricks failed then we learned from someone else that Shaw was down in Winnipeg.
So I have not been able to check Face Book or the Powerline emails. I was meeting someone for lunch, but they did not show at the place, Could be they were trying to message me thru FB or just forgot?
I decided to write my blog but of course I can’t access that either, so I figured I can write it on Microsoft Word then copy and paste it to my blog later. The spell check is out of date as it does not recognise the word blog. I just added it to the dictionary, such power!
So luckily when my lunch date did not materialise I was able to call Sel and he had time to pick me up before his meeting. He is meeting with the mayor and two other people to look at the possibilities of moving the CPR out of the centre of Winnipeg, CPR is willing to relocate and the yards create a big divide between the north of Winnipeg and the south, such big yards are no longer necessary.
If it happened there needs to be a good plan for use and also a study of possible “brown” spots that would have to be cleaned up.
The New Music Festival has been great, we took cushions for the pews on Sunday and the “Deathrave for organ” which was the second half of the performance was wonderfully loud and discordant. They were handing out earplugs for the audience; Sel and I decided we had listened to enough heavy metal that we would be OK. As I said to Sel we were also the last generation that had sex without condoms, the pill dealing with pregnancy issues back then.
I really enjoyed the Deathrave, it was very powerful and an intense blending of music and noise; many people did not like it at all, hey were still complaining on Monday evening. I know if you watch people you are a “voyeur”, but if you listen to other people’s conversations I guess the only word is eavesdropper, I think we need a word like audieur. Sel and I are often audieurs if you are in the row in front of people who speak loudly it is hard not to be. It can be quite entertaining. Huh, the spell check is having a big problem with audieur.
Monday night’s new music was not so challenging, but it was definitely not easy listening; some very young composers with huge skills, Shauna Rolston who takes playing the cello into a whole new realm, she wore a red mini-dress and tights which made the people behind us Tut-tut.
I made it to workout yesterday I did quite well, although it is scary that at one and a half miles an hour my pulse was at 120 which for a 70 year old is in the heart healthy region. But what worried me or really horrified me was that such a slow walk could push my pulse that high.
As today we did not do workout I decided I would do some serious house cleaning, I think I worked up a way bigger sweat then at the gym. The dogs are shedding way less as it is winter, but we have so much dust and I am pretty sure most of it is skin cells.
It is James’ 11th. birthday tomorrow, not sure if there are plans I will have to try and connect with Dylan this evening to find out.
Tonight we have a choice between going to see Mrs. Warren’s profession by George Bernard Shaw; I thought he was just the most wonderful old man when I was a kid I loved to hear him talk or be interviewed; there is also the Jazz tonight so if we can get tickets for the play on Saturday maybe we can go to that and still take in the jazz tonight.
The New music Festival’s venue is at the Art Gallery and so limited space, not too bad as it is chamber music which is not my favourite form of music even modern music.
Sel back from the meeting very positive reception, wow, this could be great.
I think I shall now tidy the second closet in our room to celebrate!
Closet now tidier, internet up again, tickets for Saturday night play $44 each, tonight $26 each , guess we go to the theatre tonight.
Person I went to meet for lunch unwell and had tried to contact me but as internet down, I couldn't read message!

Deathrave for organ

2012-01-29T17:23:00.000-06:00

The music last night was amazing, very modern and somewhat discordant, the last item was called Styx and featured a choir with the orchestra, and a viola soloist; magnificent, crowd gave it a standing ovation.
Tonight we hear "Deathrave for organ", it is in a local church, I have to get there early so we can be on the main floor, balcony stairs a real killer, must remember cushion too, as pews brutal on the bottom.
We had bacon butties for breakfast as our intellectual inspiration was sick, so no Bill.
Actually we listened to a programme on CBC called recivilization; looking at moving out of the industrial age and into whatever age we are in now.
It was all about learning by collaboration and cooperation, not compartmentalisation and competiveness.
It really struck a chord in me as it was about education at first and then about pharmaceutical industries losing financing as so many older drugs go off patent soon and very few ready to earn big bucks, so looking at pooling ideas and studies, WOW what a concept. Also talked about farming out research on space/galaxies to people on line a ten minute tutorial and thousands of enthusiastic people, absolutely overwhelmed them with the response.
It absolutely agrees with some of the huge deficits in many of the dept. of government, everybody with their own silo or fiefdom; we see it in the social services and the police, no sharing of info, excuse usually is confidentiality, bullshit to that,never has there been a generation of people whose lives are as monitored by cameras and data miners on Google etc.

New Music Festival begins

2012-01-28T16:45:00.000-06:00

Tonight is the first evening of the New Music Festival, it is put on every year by the Winnipeg Symphony Orchestra, we will be going each night in the coming week except Tuesday as the performance is in a small venue which is already full. But not so bad because we can go and listen to Mardi jazz at the Franco -Manitoban Centre instead.

I cleaned out one of our closets, it is the one where we hang clothes so the underneath was getting pretty messy as I was just sort of chucking stuff in, Bending over is really hard, there seems to be considerable discomfort between my buttocks and the tops of the back of my thighs, if I bend too far the pain more or less turns into a cramp. I dragged my office chair over to the closet so I didn't have to bend over, this worked well.
Some stuff to go to the Salvation Army and other stuff just packed in better.
I also wanted to put a storage thing in the closet, it is the one I keep all my art supplies in. I used to paint quite a long time ago.I stopped about 2002

Partly I was looking after James every three weeks and also at about the same time I started taking Amytriptyline 25mg., I have always suffered from low level depression, it has a name "dysthymia". The meds work but shut down creative ideas. Since I felt it unlikely I was going to be a great artist, I settled for being more cheerful on a daily basis.
Since the Scleroderma attacked I moved up to 50 mg. a night. Realistically I decided I would not paint again so putting the plastic tower of drawers inside the closet makes sad sense. I think the anti-depressant is keeping me from wallowing in despair, so it is worth the trade in for a lack of creativity.
It is terribly quiet and almost civilised here, Roxy the Meth Lab is over at Dylan and Jackies house for the weekend.
James is at this Dad's house for the next three weeks, and James sees Roxy as his dog, quite possibly Roxy now weighs more than him.

One of the lucky things for me is that my Sclero was late onset, I was a fortunate as I had a great active life until 2009, when I was 68 and I was diagnosed.
Things went downhill pretty fast, but after reading the following that came from the Sclero org.The four persons quoted are serious contenders one from John Hopkins.

Late-onset Systemic Sclerosis
1. Rebecca L. Manno,
2. Fredrick M. Wigley,
3. Allan C. Gelber and
4. Laura K. Hummers

Abstract
Objective Although patients who develop systemic sclerosis (SSc) later in life (≥ 65 yrs) may express the entire clinical spectrum of disease, we hypothesize that patients with late-age onset SSc incur a different risk for specific organ manifestations of disease compared to those with early-age onset SSc.
Methods In total, 2300 patients with SSc were evaluated between 1990 and 2009 and reviewed from a university-based scleroderma center cohort. Demographic profile, SSc subtype, autoantibody status, Medsger severity scores, pulmonary function tests, echocardiography, and right heart catheterization measures were compared between late-age onset vs younger-age onset patients with SSc.
Results Overall, 2084 patients (91%) developed SSc prior to age 65, while 216 (9%) were ≥ 65 years. Late-age onset patients had a significantly higher proportion of anticentromere antibodies (42% vs 27%; p = 0.001) compared to early-age onset patients. Risk of pulmonary hypertension (OR 1.76, 95% CI 1.00, 3.12), muscle weakness (OR 1.85, 95% CI 1.30, 1.64), renal impairment (OR 2.83, 95% CI 1.98, 4.04), and cardiac disease (OR 2.69, 95% CI 1.92, 3.78) was greater among those with late-age onset SSc; although risk of digital ischemia (OR 0.64, 95% CI 0.47, 0.86) was reduced. The cumulative incidence of pulmonary hypertension at 5 years was greater among those with late-age onset SSc (9%) compared to those with early-age onset SSc (2.7%; log-rank, p < 0.001).
Conclusion These findings suggest that older patients with SSc are at greater risk for pulmonary hypertension, renal impairment, cardiac disease, and muscle weakness. Awareness of the distinct risk for specific organ manifestations in SSc, in particular pulmonary hypertension, should guide the care of patients with SSc whose disease begins after age 65.

The good thing is my latest specialist seems to be very aware of checking me out with the lung/heart specialist.
Sorry about all the stats and numbers, I sort of understand it all???

K9 art

2012-01-26T20:58:00.000-06:00

Late night call from my dental student, she had had a cancellation could I come in at 9am this morning, Sel says yes he can drive me there and he will go on to do his workout at the gym.
Sel had his last dental appointment and his mouth is now in good shape, and mine today was my last. It has taken four university years and seven different students working on my mouth to repair the damage of Sjogrens and scleroderma.
I may not be quite finished as I am being sent upstairs to the periodontic level, they will be working at keeping teeth in my head by frequent cleanings and trying to keep my gums from receding any more. I am extremely long in the tooth.
While waiting for Sel to pick me up, I found a pocket watch in a snow drift, it is a modern one, I am trying to think of the best way to find its owner.I think it is more of a novelty thing, but might have sentimental value.
While I was being filled, Sel went and recorded all the back lanes with abandoned furniture and also where there were by-law infractions. I typed them up and sent in 26 complaints. The Garbage will schedule a pick up for the old mattresses and couches and the by-law guys will check for broken rails, windows etc.
Cleaning up an area is the first step to making it safer and friendlier.
So while we were involved in self or community improvements the dreaded Meth Lab Roxy decided to have fun. Foolishly after my shower I left my shampoo etc, on the shower seat. Roxy picked the pretty green bottle of shampoo, she took it on the bed and chewed the top till it popped off. Oh yuck says she tastes disgusting, but fun to paw-paint on the quilt with shampoo.
Strangely on the way home I had decided it was time to wash the bedding, so It really was, the quilt needed no detergent.
Bill came over, he saw his doctor today and Sel and I lectured him as he is having chest pain that wakes him up. His doctor is getting him a heart stress test, and some other tests for the digestive system.
Bill is talking about going off to Mexico first, saying oh the tests will take forever to set up. Not necessarily so, so another small lecture about health before holiday. HMMM!
Thanks to Bill the upstairs wall that divides the long room now is finished, needs a light sand and painting. I am usually the painter, I think I can do it very slowly. Going upstairs will be the worst part!

Dear John letter

2012-01-25T14:31:00.000-06:00

Great day yesterday finished off very well with a great concert of jazz. I also used the shower we taped plastic over the unfinished bits It is seriously awesome!
I wrote to an old friend we met in Mexico, he is old in all senses, being older than me, and a friend for a long time, I think my last letter must have gone astray some years ago, so I have done a mammoth update. I figured I would share the same with the blog as it does kind of give a condensed view of the last few years.

40 Grove Street,
Dear John,
What a lovely surprise, very nice to hear from you particularly with positive news. Your writing is still beautiful. You say you are moving a little more slowly, but I bet you could beat me handily in a foot race!
Actually our neighbour brought your letter to us. You were correct as of the last address from which you heard from us, but there have been many changes since then.
The little house in Cata, Guanajuato has been sold, we were lucky, we did not make money but we broke even and had lots of good holiday time for free, so we are pleased.
Sadly Cata would be completely impossible for me to reach, if the Canadian company that owned the mine would have let us thru we might have been able to keep going.
I am not sure if you have heard about us from Carolyn. In 2009 I was diagnosed with an autoimmune disease called Scleroderma, I had had Sjogrens Syndrome for some years, the auto immune that side lined Venus Williams the tennis player from USA. The auto immune family of diseases have a nasty habit of moving in together, kind of like your worst relations!
Anyway scleroderma is rare, I seem to have the worst kind called Diffuse Systemic Sclerosis, the skin thickens, hands curl over, face becomes a bit like a mask or bad facelift, the mouth shrinks, awful for the dentists!
Beastly thing can get into lungs, kidneys, digestive system; I have a very late onset so I hope that means it moves slower like me.
In February we went to Cuba and met a rheumatologist who treated scleroderma, he told us what he would do if he was treating me. I brought this back to my specialist here and he was not interested. I found a new specialist who agreed with using the Cuban treatment.
We went back to see the Cuban specialist in Oct./Nov. and he helped us pick out medication. The Cuban and Winnipeg specialist both agreed that another auto immune disease had moved in, this one is called Myositis, this is even rarer than the Scleroderma, we use the same medications for both things so that’s good.
So basically I can’t drive or walk very far, I have difficulty getting off a chair/toilet, turning over in bed, picking up a cat. I am a physical wreck but still the same opinionated pain in the butt as always.
Anyway we did live at 44 Grove but it was a two story house narrow steep stairs became impossible. The big house next door was rented to a large family on welfare, we spent one summer saving the six kids from serious damage ranging from drowning and falling off the roof.
Sel and I noticed they seemed to be packing to move and the eldest child brought us the key and said would we give it to the owner after they moved. They had run up an electrical bill of $1,400 running the air conditioning all the time while leaving windows and doors open!!
We went over to inspect, pretty messy but a perfect lay out, the bathroom, bedroom, living room, dining room and kitchen all on one floor, even the laundry in the bathroom. It was perfect for me. So we called the owner to tell her the tenants had skipped and asked if she wanted to sell the house, she said her husband wanted to sell it so we actually agreed on the price (with the advice of our real estate friend) before they decided to sell ! Our real estate friend also helped stock our new garden, he was awesome and we in fact had to divide and give away stuff he had given us as the ground is basically super fertile river bottom mud from ancient floods. We are super lucky with having such good friends.
We moved using a shopping cart and strong son and friends helped. We moved while I still had some strength and faculties, which meant I could paint the place a little slower that usual and help Sel plan the yard/garden, the house is attached to an empty lot and is the house next to the Red River, fortunately there is a permanent dike between the river and us as it did flood badly. The house was built in 1907 a year younger than the other house.
On our last trip to Mexico we brought home two more dogs, one we gave to Dylan, he had just started dating a lovely young woman who is deaf, after an appropriate while she stayed over night. The new dog ate one of her hearing aids. Dylan used the last money in his bank account to buy a new hearing aid, a really worthwhile investment as she is now our daughter in law. However this act did make Annie a bit unpopular so she moved in with us; then the cat lady across the street had to move so we took about a dozen or more cats to the Humane Society, but there were three unadoptable puss-cats we knew would be euthanized, so we managed to get two inside the house, but one was so wild we could not trap her and she was hit by a car we think. Those two cats lived in the basement for over a year, but now they have both come upstairs, Noche is a shaggy black cat his ears were frozen off and half his tail froze and fell off too, but a very affectionate cat. The other is the prettiest Calico, we call her Picasso, she sits around and when she is happy her tongue sticks out.
Recently we seem to have acquired another dog, very small puppy officially Dylan’s dog, but rather naughty puppy who would have to stay in a kennel all day while Dyl and Jackie work , so she stays here and creates havoc. OH the very small puppy is now a really big puppy and still growing, almost bigger than Aussie!
There is a big upstairs to the house, where our granddaughter lived with us while she studied French at the College St. Boniface, which is actually a University, After Emily went back to Thompson, we wondered what to do with the upstairs and a single Mom and son presented themselves in need so they are now upstairs, we trade no rent for cat and dog sitting when we travel.
The kids accuse us of being pet hoarders, it may be true, but we have our own reality show here every day.
With the help of neighbours, the police, and the Public Safety branch we have driven many of the drug dealers out of the neighbourhood gang members rarely seen anymore. Every day I used to send emails to the police and the garbage department, it is actually quite slow lately. More poor but decent families are moving in.
Sel, well he is even more like Don Quixote, there is no windmill too large that he will not tilt at. He is writing articles for the newspaper and also trying to keep our social democratic provincial government from turning into wishy-washy American Liberals. It is awfully depressing as they provide “good government”, but poverty and crime are rampant. I write crazed rants in my blog, that’s like an on-line journal. If he talks about his meetings it is a bit embarrassing as it sounds as if he is name dropping, but he has been around all these people for so many years that he can meet with them.
Sel has been a fantastic support through all of the bloody health problems, he has to put on my socks and help me get my legs in the car. He and our great friend Bill recently took out the bathtub, I couldn’t get in it safely, and they have put in a huge shower.
There have been so many great changes in the neighbourhood. I have always loved the area but as it gets cleaned up it is even better.
The new drugs are good and I no longer need a walker indoors, short walks I use a cane. longer walks a walker; I plan to buy a scooter come the spring so we can go for long “walks” again.
The computer has been my lifeline I have friend s all over the world with scleroderma and now a new bunch of cyber friends with the Myositis groups.
I hope this is not too boring with this litany of ailments; I have learned a lot like patience and believe it or not humility….but not too much of that!
I have not found God or perhaps he has not found me, one wonders if ill health will turn one into a believer, apparently not.
Thanks so much for your letter, I am so glad you now own your property outright, but the recession ate any profits we might have made in Cata too, now it is just the animals that are eating our profits!
A big hug to you; now I have to print this letter, I love computers; they still accept my warped signature on cheques, but no chance of me winning handwriting awards.
Love from Chris and Sel

Wrong Location.

2012-01-24T16:35:00.000-06:00

Funny day, I am wearing purple for Moebius Syndrome. Of course it is not so useful because nobody asks you why you are wearing purple. Really we should have something a bit more striking like wearing your knickers on your head, which might provoke questions or a quick ride to a treatment centre. Not sure of politically correct term here. I used to say in London, "Bloody hell they took me Dad off to the Loony bin again, last night".... true story!
After dressing in purple Sel and I went to Raber Gloves at 560 McDermott in Winnipeg, a huge glove factory, all hand crafted by people in Manitoba.
Howard Raber met us and showed me three possible mittens. He says mittens are the way to go, keeping fingers together is half the battle, so the first pair were very good double acrylic fur lining with leather exterior, the second pair had an elastic wrist but hard to get crooked hands inside, then the last pair were gauntlets, very good sealing space from sleeve to mitt, but not so furry inside.
Howard Raber knew what Raynauds and Scleroderma were, don't know if he researched after I wrote or just knew.
Anyway there was a picture on the foyer wall of this guy who looked just like Dylan, even Sel agreed, so cheeky like I asked who the good looking guy was because he looked so much like our son. He said that was me many fewer pounds and much more hair ago! Howard was born in 1960 so technically I could be his Mom! Our own dear oldest child is quite rudely turning 50 in July, how can this be???
Anyway we bought the first pair of mittens and he wants reports on how they are. It was a balmy -8C today so really not a good test day.
After that we went to a restaurant to meet Sel's sisters and their husbands to celebrate Sel's sister Jackie's birthday which is actually tomorrow but that is dialysis day for her husband, so poor thing will have to groan thru Robbie Burns Day and bagpipes on the radio.
We sat at the restaurant that appeared to be closed for 10 minutes and then we realised the restaurant was part of a chain and we knew of two other locations. We decided to go home to see if there were any messages on the phone.
WE arrive home, Sel runs in and gets a message saying we are at Pony Corral where are you, but still no hint as to which one. Then the phone rings just as we go inside the house, they are at the only Pony Corral we didn't think of, so we rush over and quickly ordered huge brunches, quite prodigious amount of food, only need a light supper later.
Very nice visit a catch up on kids and grandkids.
On Facebook I have found a man who lives in Winnipeg, he has Dermatomyositis, so we have watched each others posts and now have decided to meet, he is from Britain too. Sel would have made this arrangement in one phone call but Keith and I have exchanged phone numbers but neither of us have called the other.
I have Phonephobia, it is a fear of making phone calls, I am even a bit nonplussed when I receive an unexpected one. Strangely Sel hates to answer the phone which is queer as most of the calls are for him, so I answer the phone and Sel makes the calls. Anyway thru Facebook messages, Keith and I have set a day, agreed on a place (not a chain) and now all we have to pin down is the exact hour.
Howard Raber stated something that was so obvious about Raynauds, I am amazed I never thought about it. He said the most important part is keeping the little heat you may have in your hands in the glove. He said quite rightly your hands do not make heat, this is so true, I can be quite hot even sweaty and my hands are still cold and picking up an ice cold drink will provoke an attack of numb white hands.
Sel and I thought we keep the gloves etc in the coldest room by our back door, so they are cold when I put them on, Howard suggested putting one of those scrunch up packages that make heat inside before I put the mitten on; well Doh that makes sense.
I think Mr, Raber gave a very fair price on my mittens, way cheaper than the battery ones, but I am still going to need a string so I keep them safely with me.
Sel off to the Dental hospital today for a filling later we go to listen to Jazz at Franco-Manitoban Centre. We have the largest French Canadian settlement here in Winnipeg, it is one whole district called St. Boniface.Sel and I both spoke some french when we metover 40 years ago, but when we learned Spanish we seemed to forget our French.

MOEBIUS SYNDROME

2012-01-23T21:12:00.000-06:00

I am wearing purple today (Jan 24th) to draw attention to this Rare Disease:
Möbius syndrome (also spelled Moebius) is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Möbius syndrome are born with complete facial paralysis and cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Möbius syndrome have normal intelligence, although their lack of facial expression is sometimes incorrectly taken to be due to dullness or unfriendliness. It is named for Paul Julius Möbius, a neurologist who first described the syndrome in 1888.

Clinical features

Möbius syndrome results from the underdevelopment of the VI and VII cranial nerves. The VI cranial nerve controls lateral eye movement, and the VII cranial nerve controls facial expression. People with Möbius syndrome are born with facial paralysis and the inability to move their eyes laterally. Often, the upper lip is retracted due to muscle shrinkage. Occasionally, the cranial nerves V and VIII are affected. If cranial VIII is affected, the person experiences hearing loss.

It is estimated that there are, on average, 2 to 20 cases of Möbius syndrome per million births. Although its rarity often leads to late diagnosis, infants with this disorder can be identified at birth by a "mask-like" lack of expression that is detectable during crying or laughing and by an inability to suck while nursing because of paresis (palsy) of the sixth and seventh cranial nerves. Also, because a person with Möbius syndrome cannot follow objects by moving their eyes from side to side, they turn their head instead.

Source.
Description above from the Wikipedia article Moebius syndrome, licensed under CC-BY-SA full list of contributors here. Community Pages are not affiliated with, or endorsed by, anyone associated with the topic.

3 men and a shower-pan

2012-01-23T15:52:00.000-06:00

I just spent 10 minutes in the bathroom with 3 men, we were all dressed and studying the joining of the tile wall to the fibre glass shower receptor.
Last night I was researching on Google so I wrote "connecting tile wall to fibre glass shower pan" and clicked on images; the first one up was our Bill in the "space" and our toilet by the bed, Google had picked them up from my blog, I showed Bill today and we both had a good laugh.
Sel and Bill are off now buying supplies suggested by Rick (the third guy) for the final stage of the great shower project.
Frank in Portsmouth and a dermatomyositis journaler had a unexpectedly bad day, went out for a meal and ended up in emergency. Too much ice in his drink brought on an esophageal spasm, which presented like a heart attack. He is fine and back to blog today.
I think I have mentioned the BIG lab cross, we called her a mermaid cross after she tried to swim in the toilet, but now she is just big and crazy so she has been renamed the Meth Lab.
We went to listen to the symphony on Saturday evening, a very liglt programme but fun. When we came home we discovered a bag of garbage in our bedroom , Sel picked it up, but when we were ready for bed we discovered our bed was full of cooked rice. The bag had contained left over Chinese food obtained in a raid upstairs. In order for this to happen the downstairs door has to be left open and the gate on the stairs also left open.
The next day we went to a concert in the afternoon; we were part of The Nicaraguan Children's Fund which Sel, myself and others had run since our return form Nicaragua, with matching funds we have sent about $1,500,000 to various projects, but we have decided to close our group down. We had about $9,000 left in the bank that we gave to a student group building a school in Nicaragua.
When we came home the Meth Lab had taken apart a basket woven from straw, she left not one straw woven, so the floor looked like a stable, definitely a new trend for floor covering.
Today the Meth Lab and Chico decided to play Dodgem Cars with the futon, if they both ran across the floor and jumped on the futon together it moved, the final run moved it thru the wall; just a small hole tho.
How ever did I find the right husband who just shakes his head and laughs like I do. It is a madhouse but very happy and friendly!
Despite having no problem writing down all kinds of mortifying things and sharing with who knows whom, I have trouble phoning people or making arrangements to get together for coffee etc. I hate to make a phone call I always think Oh it's a bad time or maybe they are busy, and once on the phone panic about where to meet and when. This I imagine is why Roger's is not sure I am using my cell phone.
Anyway I have made Facebook contact with a person with Dermatomyositis who lives in Winnipeg, and we are trying to make a plan to have lunch together, we have the same specialist and he likes dogs. We have a day, next Tueday not tomorrow, the one after, now we are working on the place.
Sel called Howard Raber of Raber Gloves, becos of my phonephobia and we are having a "mitten making meeting" tomorrow. Sel hates to answer the phone and I hate to make calls so once again we have a good balance.
Today is Chinese New Year, the year of the dragon, I am a proud metal dragon, when you mix that with a Leo it's no wonder I am such a PITA.

Why can I see all my mistakes as soon as I publish?

The neverending story!

2012-01-21T16:37:00.005-06:00

And so it continues, Sel has patched the hole in the bedroom wall but it will need more mudding and sanding before we can paint it, if we have any of that colour left.It's a pumpkin pie burnt orange colour.After patching the wall, Sel is now putting in the drain for the shower, this entailed draining the whole dowwnstairs sewer plumbing which took quite a while. So we have a toilet in place but no flushing again.You may be saying to yourselves why the heck didn't they hire a professional. The answer is simple we consulted a professional who said it would cost a minimum $10,000, despite the time and annoyance which is minor, we will have spent a little over $1,000 a great improvement over the original estimate.I keep reading about the benefits of aerobic activity, (which apparently includes sex) for ones mental and physical well being. Very, very good for us older types.I find it hard to figure out in my case how I can acheive this. I do the treadmill but at such a pathetic pace I am sure it is not aerobic. Can't get on stationary bikes, Can't do floor exercises, problem getting down to floor and getting up again. Big medecine ball out on that too. Swimming out because of bloody Raynauds, even a hot tub is out because of the sudden change of temperature as you get out.I am wondering if there is a sort of set of pedals that you can do with your hands, I think I could try doing that really fast. I will have to check exercise equipment for difficult people on Google.AHA! I just turned on the water in the shower while Sel sat in the basement and all the water went down the plug-hole so we are making good progress!Blogger is most obstinately refusing to do paragraphs today once again, it won't do spellcheck either so I am pondering moving to a different blog writing space. Everything seemed to be going well here until we had some new upgrade to Blogspot and things have been crazy ever since, a bit like the dreaded timeline on Facebook. Yahoo also upgraded and has been having problems ever since, are we trying to run before we can walk well, electro-technically?

This is Roxy, who we estimate to be about 7 months old, she was a tiny sick little puppy when rescued not much hair and covered in fleas. A couple of good baths and good food and we are al just watching her GROW.She is definitely mostly black labrador but she may have some mastiff because of her big head.She is very affectionate and thinks she should still be a lap dog.She is really Dylan and Jackie's dog but she is such a huge bouncy thing that leaving her caged while they are at work is just too harsh, so we figure she can chase our geriatrics around, and most of our furniture has been antiqued by former pets and grandchildren.

A little OOPS!

2012-01-20T20:40:00.004-06:00

Sorry blogger refuses to make paragraphs today I tried leaving an extra space between paragraphs, but it just sticks all in one huge screed.Still scruffy in Winnipeg, shower progress had an oops! On Wednesday night I had a call from my dental student one of her patients had cancelled, could I be there at 9am in the morning, I checked with my driver and he said yes.We had another interesting evening with our daughter Karen, Sel had to go to a meeting at 7pm, so we decided to have a bowl of soup for supper and then go to Baked Expectations, a desserts only place. It is celebrating it's 25th year in business. They make awesome cheesecakes and amazing tortes, mostly off limits to me because of milk content, but I found a lemon and almond layer thing, quite nice a bit too sweet for the elderly tooth. While Sel was at his meeting Karen and I had a very "deep" converstaion, I can't think of the correct word, we talked about stuff from the past and talked about how in many ways we are very alike, it was just one of those moments when suddenly barriers go down.So up Thursday for the dentist, Bill coming over later to help Sel.Sel did an amazing clean-up while waiting for Bill, even taking the huge shower box down to a metre square pile for the recycling pickup today. It was a deep cleaning of teeth, with a ghastly invention I think they call it the Cavitron, I suggested it was good practice for water boarding. As this little scraper thnig squirts water as it cleans even under your gums, there was a suction thingy but most of the water was going down my throat and I was fighting not to choke!Foolishly I put off using the toilet at the clinic, because when I got home not only had the toilet found it's way into the bedroom again but as the guys lifted the shower into the space they hit the top of the shut off valve to the toilet, a pipe in the wall broke so water was running, happily into the basement mostly. So all the water to the house had to be turned off.It is fortunate that I was a teacher because usually we have great control of the bladder and bowels, you cannot abandon 30 Grade One kids to go to the bathroom.Anyway I did finally go upstairs and pee, but with no flushing solid evidence of my visit would be quite rude.Eventually the pipe was mended it was really not too bad a joint had broken a just needed to be soldered back, but my beloved decided to fix another thing he had wanted to fix for some time. ARRRGH!Anyway once the water was turned on to the upstairs, I dragged myself up the stairs to great relief. I figure going upstairs twice was a day's workout right there!We forgot the Methotrexate derriere shot on Wednesday evening, so had to do it last night, I woke at some time in the night with the metho hangover, a vile headache, but very luckily was able to go back to sleep.Today we went and bought tiles to finish the shower, we have a store called Re-store where they recycle buiding and renovation materials they raise money for Habitat For Humanity, an excellent organisation that works with the future owners and volunteers to build houses for less affluent people. They reuse some things and get end of the line stuff from stores. They would like our old clawfoot tub as they say they sell well, so we will donate it and feel virtuous.IN order to access the pipe in the wall we had to cut away a piece of the bedroom wall, which meant moving one of our computer desks. so the chaos is even greater. I did go thru some of my files and weeded out stuff that was no longer needed.There is a famous glove maker in Winnipeg called Raber Glove. I found it while searching the internet for gloves for Raynauds syndrome, with the very cold weather my hands are turning blue and white. I emailed and Mr. Raber said to call him and he would meet with me to see what could be done. Custom made gloves? WOW!

SHOWER ON HOLD>>>

2012-01-18T12:58:00.000-06:00

Here is Bill yesterday working in the space, he is putting in a bit of a support wall for the fibre glass shower pan, after we get it back in, the guys are hoping it still fits, so am I. After that the drain has to go in then bringing the tile wall down over the shower receptor.
We met Bill when we all lived 750kms. north in Thompson, strangely without knowing we all moved to Winnipeg on the same day. We stopped for gas and there he was moving down.
We had gone out for breakfast every Sunday morning in Thompson and continued the breakfasts down here. At first we went out to eat, but as the prices rose we decided to cook at our house. First we do coffee and talk, mostly about the state of the world, politics, statistics, Bill is very good with the statistics. Strangely we are all quite frugal. We think our families of origin are responsible. Bill was the youngest of three brothers, his family were Presbyterian, Sel was the youngest of three children and his family were United Church, I was the oldest of two and my family were Congregationalists, they merged into the United Church in Canada. All of our parents lived thru the great depression and the 2nd world war, where I lived with rationing of food, clothes etc.
To this day I have a lot of extra blankets and quilts stored for some kind of catastrophy, also boots and shoes.
Bill is probably more frugal than us. He actually is not that fond of dogs except really well behaved ones, none of ours come close to well behaved however they all adore Bill and launch themselves on him competing wildly for his approval. So we have to stick them in the bedroom until they calm down.
Bill and Sel were really busy today, so the great project is on hold.The shower pan is leaning against the cupboard where my jeans reside, also my sweaters, care needed not to spill or sneeze laugh or shout as, this could lead to a difficult situation, the laundry function a mess and replacement pants behind shower. The vanity top is leaning against the dresser so lighter sweaters and shirts also unavailable. Happily the underwear drawer is accessible. Socks are not!
Ablutions are happening in the kitchen, the toilet is back on the big drain but rather rocky, a bit nervous about using it, thank the Dog for the rails which keep it a bit more upright.
I KNOW THIS IS REALLY GOOD AND I WILL BE SUPER HAPPY IN THE END<<<<<<<<<<< but it is so great that this disease has taught me patience!
That does sound a bit Polly-Anna-ish, but as things change in life, you do learn new things about yourself.

Today is our second daughter's birthday and she is spending it in jail!
Actually not as bad as it is sounds, she is a parole officer and is doing a training at the jail.
She is a tiny 4'11" blonde, she is however quite wide and not the person most people think to mess with!

Karen took us out for supper last night and we are taking her out tonight for her birthday, we did Thai food yesterday, not sure where tonight.

Don't miss the bus...

2012-01-16T21:26:00.000-06:00

To help save the economy,the Government will announce
next month that the Immigration Department will start
deporting seniors (instead of illegals) in order to lower Canada Pension, OAP and Medicare costs.

Older people are easier to catch and will
not remember how to get back home.

I started to cry when I thought of you.
Then it dawned on me ... oh, crap ...

I'll see you on the bus!

I love this, my daughter in the north is picking an ice-floe out for us now!

Anyway back to the shower, we have four dogs waiting in the wings for time on the blog.

Out with the toilet again this time parked in front of Sel's desk, don't ask, yes once again the turkey baster was employed.
I can see we are going to be short of guests for Thanksgiving and Christmas.

Not only the toilet had to be removed but the vanity too, which was placed by the bed.
Everything being out of the way, it was time to put the shower receptor in the space. We watched a you tube video of installation of a similar shower and read some questions and answers on line about Kohler shower receptors.

I missed the best shot where they were actually pushing the shower pan back, Sel almost got his fingers caught. So the derriere to the right is Bill's and that's Sel on the left.

So here it is the shower in place, but now it has to come out again, as we have to cut out the new drain placement. Luckily it is not a big change from the tub drain and even better it will not be right up against or over a joist, which was a concern.
We did discover that our bathroom had once been much smaller, the house is now square shaped, but we could see that the bathroom wall was about three feet further out than the original, which also explains why the wood siding is not on that piece, it has plastic siding.
Having a willing carpenter available meant giving up work-out, so I decided to clean windows, the perrenial problem of dog spit when barking and three cats who sneeze a lot.
As well as the windows there are the dreaded mirrorrs around and above the counters in the kitchen. They do reflect back light but they also double show every splash and spill. I have to say that as a workout it was pretty good . I had to take a few time outs for recovery of energy.
On my myositis sites I found another woman who can not pedal a stationery bike, in fact like me she can't even get on one. I have to lift my legs into the car; some days Sel will lean over and haul them in for me.
It is amazing how pleasing it feels to find another person who shares your problems, I don't quite understand why, but I guess I feel less like a wuss!

2012-01-15T18:29:00.000-06:00

Two of our dogs

So this is the old and venerable Aussie, he is 15 years old, deaf, sight failing but bark works fine.
WE adopted Aus in Thompson, we had two other dogs back then and somebody brought us Aus when he was the sweetest little lost puppy,. He had a flea collar so we figured finding his owners would be a snap. Wrong!
Slowly we figured out he had come in to town with a family and became lost and they had to head back to the reserve without him.
He is a husky cross, we think with German Shepherd or some days we think wolf.
We figured out he came from a reserve by a lake when we dewormed him and I tend not to be squeamish but the poor little pup was petrified by what was leaving from his behind,he was running around in terror and I was chasing him with a paper towel, I finally yelled for Sel to help. The two of us were able to remove a humungous tapeworm like none I had ever seen. We dashed over to our vet with the nasty thing in a container, the vet pronounced it to be a tapeworm from eating fish guts. His assistant said he looked like a Split Lake dog.
Aus didn't particularly like us at first, when we walked on the street with him he would try to follow aboriginal people.
He loved the cold and would sit on the very last piece of ice in the yard until it melted. He had an ongoing shouting match with the ravens, it appeared to me mutual as they would "arck" back at him.
Aus produces an incredible amount of soft fur, he does not enjoy being brushed, you can do it if it is done a little bit at a time slowly. I tend to want to get in there and do the whole job.
He has become decidedly imperious with old age and if he wants something he will do one bark every 30 seconds, it is extraordinarily annoying, even more so because Sel seems to be able to sleep thru it!
He was named Aussie, because Sel was convinced with such a name our daughter born in Australia would adopt him. Wisely she declined, we had already given her a sweet furry but feral kitten that lived in her house but was almost never seen.

This is the next oldest dog, we brought him home from Mexico.He was the most emaciated dog I have evr seen pure skin and bones, he could fit thru a 4 inch square hole. He showed up on the driveway above our property in Cata, Guanajuato.We felt sorry for him and started giving him food thru the fence, which was a metal wire fence with four inch square holes.The second morning we looked out and there he was gazing down at us. I said you know he looks like the arch angel Gabriel looking down at us and so he became Gabe. He moved in immediately and never ever made a bathroom type of mistake. He love food, and was so clever to clean a pot he had figured out, you put one foot in it and pin it still while you lick, gnaw to clean it up.
The Mexican vet figured he was about 5 years old, we thought younger but now I think that was about right as he is now an older dog about 12 I would guess.
We had him neutered, this was a complete anathema to our Mexican friends who thought spaying a female made good sense but removing testicles was a terrible thing to do.
Gabe bonded with Aussie,he was really Aussie's dog more than ours to this day whatever Aus does so must Gabe altho sometimes like any older brother Aus won't let him pass or lie where he wants then Gabe begins weeping, it is terribly sad and annoying because sometimes I can't figure out what Aus is forbidding with the dreaded stare.
Iwas going to do all the dogs but this is already pretty long, so we'll save more for tomorrow.

The nearly new shower...and a turkey baster

2012-01-14T21:22:00.000-06:00

Since I have very little use as a renovator these days, I was designated documenter of the great bathroom renovation.
I have downloaded the pictures and resized so apart from getting them in the correct order we should be ready to begin.

This was the before you can see an old clawfoot tub that has been built in.
You can also see the steps, grips and actually you can't see the grab bars on the walls necessary for me to climb in, making it into an old lady version of a Jungle Gym; sadly despite all the handicap aids the climbing into out of the bath was pretty damn scary, especially as my balance which has never been good is downright comical at times now.
Very satisfying to note that sober as a judge lately has not helped. Why the heck do we say "judge" I have known some serious alcoholics who are judges!

Now we have the tiles around the edge chipped away.

There it is the old green clawfoot tub is revealed, we were able to cut between the tiles and remove the plywood to which they had been fastened.

AND there is the toilet which had to moved off its connection so the old tub could be pulled out beside the bed.
Dylan came to me and said we need bailers to empty the toilet, so an old yoghurt tub was found and a smaller soap powder dipper.
I turned my back for a minute and then I saw the turkey baster was ingeniously being used by my love to drain the last drops.
THE TURKEY BASTER???? I guess I can boil with bleach, but there is a yuck factor still.

The old tub is heading for the back door,Dylan at one end, Jackie and Sel at the other. It is a very solid tub. We had to remove the bathroom door to get the tub out of the bathroom and to pass from the bathroom thru the bedroom, then we had to remove the bedroom door so that the tub could journey thru the living room, then out to what we jokingly call the vestibule, it is more of what we call a mud-room in Canada.

One more door had to be removed in order to launch the tub into the back yard.

So there it is the hole where the whole thing had been.
Now to open the box to take out the shower.
We discover that the edge of the shower is broken right at the bottom edge, a piece about 1" X 4" was missing we study the box and see where it had been dropped on a corner.
WHAT TO DO? This one was ordered in for us, to get a new one would take a week or so, I am looking at the toilet in the middle of the bedroom and I am thinking about dragging myself up the stairs every time I have to pee.
Sel and I agree we can fill the spot and cover with a nice trim. We decide to call the store and ask advice. I yell be sure to tell them where the toilet is!
A very pleasant woman dealt with the complaint I had all kinds of pictures showing the damage and the box etc.
Sel said we could keep it and work with it but would like a bit of compensation for the damage. The woman phoned back in a few minutes and offered us $100 off the price. It seemed fair so we went with keeping the damaged one and hiding the flaw.
It really is so funny because we always buy second hand or reduced sale price if we can. Here we were actually buying a top of the line receptor and we end up with a damaged one, it fits in well with the rest of us who are a bit damaged or weird in some way!
HUH! I have tried twice to upload the picture of the slightly damaged shower receptor, I think I may have reached my limit of photo uploading for today.
NO I just checked and blogspot has put two pictures up at the beginning of the story so now I will have to see if I can move at least one down.

Well there it is the slightly damaged shower, with the daft dog Annie helping.
Actually this is a record for downloading, resizing and uploading, even moving the weird formulas which are the photos around. I am super impressed with me.

I have to say today I was walking around really well. No walker inside and no cane. I am definitely feeling more like me. From what I read I am not going to get my whole mojo back, but it is improving, walking twice from the bathroom to the kitchen leaves me looking for a chair, but that is an improvement because just once was enough when we first came home from Cuba.Actually we were able to temporarily replace the toilet and rails; really good as stairs are still killers for me.

Bathtub adrift....

2012-01-13T15:37:00.001-06:00

I just reread yesterday's post. Horror I wrote the wrong there/their/the're after years of teaching the three I failed. If that is the worst of the day no worry at all!The camera has a new battery so we may have pictures of the great bathroom reno. The tub has been cut adrift and all we need now is to temporarily remove the toilet so that we can take out the tub, oh yes a couple of strong guys handy too, this is the real heavy duty cast iron job.The house was built in 1907, where the bathroom is may have been it's original location, but our bedroom which leads into it would have been the kitchen. The kitchen is now in the front room which was probably a parlour or a study.The door to the garage is not shutting and it has a lever handle to help me open it. Unfortunately the large new puppy Roxy has figured this out and with the usual soil shifting in Manitoba, even if we lock it she can nudge it open.They all go bounding outside and ddisappear into the garage , the garage is also used as a deep freeze in the winter where we store food to give to seniors. Many of the supermarkets throw away so much food as it reaches its "best before" date, so we have a great volunteer who picks it up and on Sundays it is sorted and delivered to seniors in our area. I always giggle about this bcecause it says "best before" not poisonous after this date. Growing up in wartime England aged bread was considered to have some anti-biotic properties when it showed blue mould, we had no fridge so all our food was stored at room temperature. Basically if it passed the sniff test you ate it.Frank from Portsmouth read my blog and was a bit surprised by the goings on in the neighbourhood, those of you who have followed for a while and some of you who live here will know that this is an interesting place , it is the oldest part of Winnipeg once with lovely old houses many of which many still stand. It is a thumb like point the Red River runs aroung, left to its own devices it would have formed an ox bow lake, my geography teacher would be proud, her name was Miss Cowmeadow, a poor large womwn in a school full of cruel little girls!Then the other side of the Point began to be industrialized, the old houses became rooming houses and the city allowed a red light district to flourish hidden away from "decent" people, yes decent people whose husbands visited the ladies of the night. After that the drug dealers moved in and we are fighting to get them to move out with our COWs (Citizens On Watch) who report bad stuff to the Powerline, which is our phone number. We have had a couple of broken windows and slashed tires for our efforts.There have been several attempts to clean up the beautiful old area, but it is a constant battle as we are fronted by the worst block of Main Street, four overserving pubs, three or four pawn shops (also known by some as "fences") Medical Clinics and evermore pharmacies this blossoming of pharmacies seems to be fueled by people getting prescriptions for opiate based pills and selling them on the street as a fun drug.Tonight we are going out for supper with friends, I had to do the awful telling them about my allergies, it feels so rude.Basically no shrimps, lobster or crab, those are exciting trips to the hospital level of allergic. The other is an intolerance to all milk products, not just lactose intolerant, this is milk protein intolerance, resulting in much pain and bad guset behaviour as bloating and farting will follow. Last time some friends visited they brought a pizza with shrimp to share, they did call us before coming so Sel was able to ask for a bit of chicken for me instead! I can't remember what I was going to write about before I started writing and deviated all over the place.I am trying to kick myself into going to workout, I hate going and struggling getting clothes off and on. I actually wear my regular clothes , as changing into sweats etc. would take up most of the hour so I mean taking off coat and boots and gloves in the tiny space by each locker!. Gettin my jeans off at bedtime is a big challenge richly patterned with colorful language. I wish I could train one of the dogs to pull the legs. Sel will do it of course, but that seems like cheating!

Distressing day.

2012-01-12T15:35:00.000-06:00

Yesterday turned out to be a stressful day;Iam on three Myositis pages and a gentleman from Portsmouth England has a blog about this struggles with dermatomyositis,he writes about his life in an upbeat gentle way. He was promoting his blog on the pages, it seems that someone did not like this and instead of "talking" to Frank about the concern, they reported his postings as abusive.
If you go up to the Purplish writing that says "view my profile" and click on it it will show the other blogs I follow and Frank's Diary of Dermatomyositis is there. Click on that to read about his daily life.I was plenty mad about it, it was a sneaky way of stopping something that irritated the complainer.
Support for Frank was huge, and other people are attempting to repost the connection from their sites.
The Myositis people are turning out to be as interesting and fun as the sclerodermians.
In the afternoon several of us residents met with members of the police, it was satisfying to put faces with names.
Our sergeant explained how distribution of police is based on statistics, the more reports about a drug house or party house the more likely it is to get attention. It was something that we had heard before, but then when we named two locations as chronically criminal, the police said they get very few reports. The two houses operate 24/7 so we all tend to assume the cops know this so we get sort of tired of reporting it, then they assume we are not worried about them. AAARRRGGGGH!

We did some shopping, it was the first time I had worn the battery gloves. I am seriously UNDERWHELMED by them, fingertips still get cold as most of the heat is in the palm of the hand, the batteries 6 X AA, lasted just over an hour and a half and when they died the gloves were really cold, I had beautiful cyanosed fingers they turned a dirty shade of blue. A couple of them started going dead white so as soon as I came in I put my hands in the kitchen sink under warm water, neat feeling as the fingers start to warm up like a sparkler under your skin.
Me thinks the gloves will be returned.
At about 8pm we noticed the police talking to our neighbours, it turned out their little ten year old girl had disappeared.She and a couple of friends were allegedly lured into a house and given alcohol, this child is tiny too. One of the girls ran a way from the house and told her Mom who alerted the now frantic parents of the missing child. It was amazing how all the neighbours immediately became involved driving around and stopping at houses where friends of the child might live.
We are still not aware of the whole story as each child seems to be spinning a different story. WE have asked the police to investigate the home as I am worried some of our bigger guys may take up a vigilante approach if this messing with little kids continues.
A couple of minutes before midnight the little girl turned up, very cold after hiding in an old car.
Oh their is good news the shower base has turned up and we will pick it up on Saturday, and hopefully the old bathtub will have been moved out.

Indignity

2012-01-10T17:58:00.000-06:00

IS there no indignity that Scleroderma does not share with you, over the last two years my voice has got smaller and it is harder to speak louder, this is great as most of my peers are losing their hearing, (can't do sign hands too bent). Now in order to summon enough voice to call my dogs, my bladder seems to lose some of its control.
One just has to laugh but not too heartily and do a lot of laundry, (of course allergic to liners I tried for this problem) TMI? tuff!
If I bend over to pick up the dust after sweeping I get this fearsome pain from my thigh into my butt, feels like a muscle cramp, now leave little piles of dust after sweeping for poor husband to pick up; big puppy Roxy thinks these are terrific fun to chase around the floor. This one I think goes to polymyositis.
Finally got out of house,took newspapers to Darcy's ARC , a no kill but rather full shelter, I wish I could take a couple more cats.
Went to Sally Anne Thrift Store found a pair of winter boots that work for my weird feet, found a belt that fit on low rise jeans,found a little dragon toy for Roxy. Sel found a pair of runners for schlepping around.
It was seniors day so had a discount too!
Then we went to several outdoor stores looking for battery heated mittens or gloves, problem is that the heat is to the palm of the hand and it is the fingertips that go numb; very nice said I could bring them back if they don't work. No black ones left so I have hunting patterns on them. Really to stop hands going numb who cares what colour?
After thrifty buys at Sally Anne, these were almost $100, so I hope they work.

Even chocolate failed.

2012-01-09T20:52:00.000-06:00

Well now I am grumpy;for once I was going to document the taking out of the bathtub, which is a miracle as I rarely think to do these things.I have 3 pictures but the battery starts suddenly discharging, which is rather annoying. I guess I need a new battery as this one does not seem to be holding a charge.

Sel and I were talking about crime, which incidently is dropping which makes it odd that Mr Harper is pushing tougher jail time etc.
I am all in favour of putting people who are dangerous in jail, murderers, rapists, violent assault, pedophiles, these people need to be kept away from the community.
I would like to find out what most people are in jail for doing. Incarcerating people may not be the answer to crime, it is very expensive and does it really stop
crime?
Among most of my middle class friends having a family member sent to jail would be very embarrassing and shameful.
In the Inner City it really isn't much of a deterrent, many families have friends or relatives in jail.
Our biggest problem that leads to poverty and crime is kids dropping out of school. Last school year 8 children graduated from Grade six an alarmingly low number, any way after half way into Grade 7 four of the kids have dropped out of school.
This is an utter disgrace, what is being done to get these kids back in school? The truancy officer visits , "Child and Family" visits, but then it is just let go.
Kids without an education are going to collect Welfare for life, probably get into crime, probably have babies and use drugs many of the babies will be apprehended and put in a foster home. This all at a huge cost to society, shouldn't we be getting children back into school, giving them a future and saving us a lot of grief and money.
I am afraid that a lot of things that happened today are really not very good. It's complicated semi political stuff; I am super depressed about the political party I support New Democratic Party(NDP) and are in power here right now and have been for almost 10 years.
I am a socialist, the party I support is supposedly sort of social democrat, the longer they have stayed in power the further to the right they have gone.
It would be nice if I could give up caring so much and just enjoy retirement.
Oh email from our daughter in Thompson this morning, apparently the rumour mill took the story of the Unexpected event which I wrote about on Dec.11th a little further and our kids heard that Sel their Dad spent Christmas in jail.
They of course realised it was unfounded as I would have called them. We fall into the "it would be shameful" category.
Altho we have risked being arrested at demonstrations against wars and globalization, but that would be different.
Off to bed to read my Kobo, tried eating chocolate to cheer myself up, it failed. Oh there was a good thing, Jackie came for a visit and brought Roxy down to stay with us for the week, so she can bounce around with our idiots.

Last bath

2012-01-07T21:22:00.000-06:00

Saturday night, the Globe and Mail has been read; as usual I have apoplexy over the ridiculous Style and Travel sections,people who can afford this crap actually live in Toronto?

I had my last shower in the dreaded old claw foot tub actually it had been "built in" with a tile surround but it was still pretty scary to climb in even with grab bars, steps, a rubber mat and a bench.
It pretty much looks necessary to move the toilet to take the old bath tub out.
Once the old tub is out then we check to see if there is any rot from water seeping down, repair as necessary, then wait for the new bottom part of a shower to come in and try to rejoin the tiles to the shower base.
I still say we because two years ago I would have been in there in grotty clothes and ripping and tearing along with Sel. I have always loved working along side him and I used to have terrific stamina too.
Hated going to workout today, but felt very virtuous and pleased with myself after it was done. Sel set the seat on my favourite machine which was way down low again. That was OK as just average cute guys around not the Prince of the gym.
Wrote expressive letter to the police and sent it; trying to swallow my rage about that drunk tank incident but I think it will take a long while.
Since Scleroderma I have been showering about once a week, this is partly because of scary climb, but also because my skin is so dry and I shed like a snowstorm after I bathe.
Also I grew up in England where my RN mother believed that a once a week bath in about two inches of water was more than enough. Since she had to carry the boiling hot water up the stairs to the bath, it was very reasonable. We boiled the water on the stove top in the kitchen;cold water was added upstairs.
James is back to his Mother's home for three weeks, Dylan is working on a bridge out of town all next week, so Roxy may come to stay, it depends on what Jackie wants.
We have eggs and bacon ready for Bill tomorrow and our intellectual breakfast. First I have to take the Fosmax as soon as I get up and wait an hour for black coffee, then another hour til I eat. I am hoping my bones are getting less fragile. It's a bit complicated because, Prednisone thins my skin which is good, but it also thins my bones which is bad, but it also makes my muscles work again; so that is excellent.
Hey another myositis writer reads my blog and made reference to the little patch of fur on my forearm, he suggested it might be the prednisone. In return for muscles I will take all over fur and even a tail, preferably prehensile which would allow me to hang upside down so the blood can get to my poor old hardening brain.
I will settle for a cat's tail which I would swish about when I was mad. Excellent.
Stephen Dawkins has said the thing he really doesn't understand is women,I totally agree, they have always scared me too.

A bully is a bully no matter what he is wearing...

2012-01-06T21:39:00.000-06:00

Who needs TV we have reality theatre right outside our house. We were sitting chatting when a truck came roaring along the dike road beside our house. Suddenly a most incredible noise and the guard rail and the truck disappear towards the river. Fortunately the truck stopped before the water. So we called 911 and 311 had cops, medics, a fire truck and the city truck to watch as they all did their thing..driver OK but staggering about drunk or in shock, don't know, maybe both.

Today we filed a complaint with LERA which is the place you make a request for a review of police behaviour. That was the evening when Sel was basically thrown in the drunk tank for refusing to give the name of our informant when he relayed a message about a kid with a gun. Sel had had a glass of wine and was starting on a second in the living room; he only stepped on the sidewalk to get the badge number of an officer who called him a "fucking liar" at the top of her voice in front of our neighbours.
It is really a farce, the head guy of LERA is an ex cop (can we say stays within the blue line)? Not surprisingly almost no police officers are found guilty of anything.So it really is just a losing formality to do it.
WE also discovered that if a cop says you are drunk, you are drunk even if that is one or two glasses of wine, and you are in a public place as soon as your foot touches the sidewalk.
Also learned other stuff besides having a club, a taser and a gun the officer is always right, if the officer decides to poke you repeatedly in the chest, chest bump you, and or put his/her face within a half inch of yours, YOU MUST NOT TOUCH OR RESTRAIN THE OFFICER NO MATTER HOW GENTLY, YOU CAN AND OFTEN WILL BE CHARGED WITH ASSAULTING A POLICE OFFICER.
Never run away from a police officer this could be construed as avoidance, it could be fatal for you.

I have always been a supporter of the police, but the bully cops screw it up for all of them;but it is the brass promote them. I have heard thru a friend that the new CADETS who are sort of above volunteers but poorly paid, many hope to get into the police force ultimately. However they have to play the racist, sexist, homophobic game to gain admittance to the glorious inner blue circle.

After about five years of encouraging our locals to call the police themselves, I can no longer do this; I no longer trust the police in general. I do know some cops I sort of trust, but when you call 911, you have no idea who will show up.

Eccentric or stand on my head?

2012-01-05T18:00:00.000-06:00

Falling behind in blogging; too much other stuff happening. Tuesday I went to workout at the Duckworth Centre,it's my old university so I get a cut rate.
Managed my plod for 10 minutes at 1.5 miles per hour.
Toddled off to weight machines, not bad until I went to one of my favourite machines and the seat was set really low, however I have discovered adjusting seats etc, requires more finger strength than I have. I decided to use as was,it proved to be a blunder as all went well until I tried to stand up, with the cane and bracing myself every which way, I couldn't stand up. Suddenly I see a hand attached to a gorgeous young man , with a lovely smile he pulled me to my feet. I think he might be on the basketball team, because he was in amazing shape. Sel got to shower next to him and confirmed that he was all over totally well formed.
Yesterday I started some cleaning and tossing stuff. My feet have grown much larger with the Sclero and also I have extreme trouble putting on shoes and boots, so 3 pairs are going out. Just can't put on my own socks still but Sel does this for me.
Then foolishly I decided to try out the new feature on FaceBook called a time line.
Finally I had to Facebook Mark Zuckerberg, (a new friend told me how I could). THE PROBLEM is grave, I was born before time starts on Facebook, the youngest you can be is "born in 1952", now really I had no idea I qualified for the land before time.
I have concluded that the Timeline takes too much time and maybe shares too much information, altho it is hard to imagine who would care either way.
Off to the doctors today Sel has too much wax in his ear (as does Aussie the dog). So we have to add olive oil to soften them both.
I was just getting some refill meds, but my GP decided to get a couple of blood tests and a urinalysis. Blood had to be dragged out of my arm with a syringe, it is always a bit of a problem.
Then the little bottle, I ask for the top to be loosened as I know I can't do it alone.
So in the lady's handicapped stall, love wall bars to drag myself up right. Putting the following delicately is difficult and most sensible people would just not mention it.
Firstly elderly pee does not fall straight, so madly moving the container was required, this was messy. The elderly bowel is also unpredictable, but it was clear it would have it's way, which was fine I had moved the bottle to the top of the toilet paper dispenser, and all was well until I noticed the only paper was not started and would not come out . I searched my purse for Kleenex , but it was obvious this would not suffice so here I am madly scrabbling with weirdly bent fingers, that made access to the toilet paper dispenser awkward and painful.
I was hoping someone would come in and I could beg a few sheets, but nobody came. Then I considered a knickers round the knees bolt into an adjoining toilet; the logistics of this were daunting and hugely embarrassing if caught.
Back to the desperate ripping and clawing at the unforgiving roll in the dispenser, suddenly it loosened and the roll unfurled.
Quite amazing joy.
So I think I have mentioned that I do consider myself somewhat eccentric, and the last story probably confirms it for you!!
When we came home I read that Scleroderma can cause hardening of the brain which can lead to dementia, absolutely swell, so I guess I'll become more eccentric but won't be able to remember that I am.
Apparently pumping enough blood up to the brain is the problem so maybe I should try standing on my head?
This afternoon Dylan came and put a big window in our back door, I do not like doors without windows, I would rather know who is outside. A very unpleasant male who wanted to gain entry to my apartment in Vancouver was deterred when my dog went ballistic at the window. I yelled at the guy I was going to let the dog out and he left at high speed.
Oh yesterday was a big laundry day. I may be putting some incontinent pets up for adoption, NO OF COURSE NOT, it's just fun to tell them that..
My Mom was always threatening to send me to boarding school but since we couldn't afford a fridge I doubted this would happen, but I was never cruel enough to say that.

STATS

2012-01-02T16:12:00.000-06:00

Fiddling about on Google I found this, it's either the incidence or prevalence ( I always forget which is which no matter how many times I look it up) of auto immune disease which shows why most people have never heard of Scleroderma or the Myositis twins Dermatomyostis and polymyositis.
Clearly shows that MS is far more common and so that is partly why we know about it, even Lupus while uncommon is higher in numbers.

On another list I discovered that Menieres Disease is auto-immune my Grandpa on my Mom's side had that. Trying to track some genes in the family that might account for the Immune system screw-ups I have!

•Type 1 diabetes: 1-in-800 (NIAID)
•rheumatoid arthritis: 2.5 million Americans (NWHIC); 1% of US population (NIAMS)
•Autoimmune thyroid diseases: 4 out of 100 women some type of autoimmune thyroid disease
•Graves Disease: 3,048,636 people in the USA 1996 1; 1.3 million people (NWHIC)
•Hashimoto's Thyroiditis: 1,490,371 adults and 205,159 children in the USA 1996 1
•Systemic Lupus Erythematosus: 1.4 million people in the United States, 1 in 85 (NWHIC)
•Multiple Sclerosis: 1-in-700 (NIAID)
•Crohn's disease: 500,000 Americans
•Psoriasis: 5.5 million people in the USA (NIAMS)
•Autoimmune Lymphoproliferative Syndrome: very rare; NIAID mentions 58 individuals
•Sjogren's Syndrome: 1 to 4 million people with Sjogren’s Syndrome (NIAMS)
•Rheumatoid arthritis: 2.5 million Americans (NWHIC); 1% of US population (NIAMS)
•Scleroderma: estimated 300,000 Americans (NWHIC)
•Lupus: 1.4 million people in the United States, 1 in 85 (NWHIC)
•Addison's Disease: 1 in 100,000; 13,335 people in the USA 1996 1
•Guillain-Barre Syndrome: about 1 in 100,000 (NWHIC)
•Immune Thrombocytopenic Purpura: rare.
•Pernicious anemia: 399,455 people in the USA 1996 1
•Myasthenia Gravis: about 5 per 100,000 to 14 per 100,000 (NWHIC)
•Primary biliary cirrhosis: 9,232 people in the USA 1996 1
•Primary Glomerulonephritis: 61,423 people with Primary Glomerulonephritis in the USA 1996 1
•Vitiligo: 2 to 5 million people in the USA (1-2% worldwide); 1,059,560 people in the USA 1996 1
•Autoimmune uveitis: 4,637 people in the USA 1996 1
•Celiac Disease: 1 in 250 Americans estimated rate; actual diagnosis rate is 1 in 4,700 Americans; 1 in 250 in Italy; 1 in 300 in Ireland; 20,000 diagnosed (Reader's Digest Feb 2004)
•Autoimmune Hepatitis: 1,156 people in the USA 1996 1
•Behcet's Disease: rare in the USA; more common in Middle East, Asia, and Japan.
•Ankylosing Spondylitis: 129 of every 100,000 people in the US (Mayo Clinic)
•Dermatomyositis: 13,462 people with polymyositis/dermatomyositis in the USA 1996 1
•Miller Fisher Syndrome: rare
•IgA nephropathy: 61,423 people in the USA 1996 1
•Goodpasture syndrome: rare.
•Temporal arteritis: 200 per 100,000 people over 50.
•Neonatal lupus: very rare
•Aicardi syndrome: rare
•Wegener's granulomatosis: uncommon
•Stiff-Person Syndrome: rare
•more types of Autoimmune diseases...»

2012-01-01T16:56:00.000-06:00

Happy New Year to everybody, last night we stayed home, Sel's cousin came over for a glass of red wine. We were sitting quietly and somebody dark and tall appeared in the porch, without thinking my first reaction was,"Sel if it is a cop don't go out"! However it was not a cop, actually rather far from it, altho one never knows peoples hidden hobbies.
Sel ushered in this tall woman, a rather sexy looking "lady". It was our son in drag, he and Jackie were two party girls, Dyl had waxed his chest the night before and trimmed his dark eyebrows back and with a close shave and some make-up he was a she. He said dancing in heels wasn't too bad, but he found the false nails an absolutely annoying thing, with which I concur. I have never managed to have polish on my nails, never mind stick on nails.
Pets and gardening not a good mix with fancy nails. Also I refuse to have a dish washer, finding them just super annoying, people seem to spend a lot of time semi washing dishes first then I always get into trouble for loading badly when I am at somebody else's home.
Besides which I have five ecologically correct dish washers, no hot water wasted no nasty chemicals, just five tongues and wagging tails.
I do hand wash after this but when people give me the "Euuuwh" response I sometimes say we just put the plates back on the shelf. I had grown up in a house where the only appliance was a small gas-stove,until in my teens when we got a Vacuum cleaner. There was no fridge, no washer or dryer where I grew up.
In fact I was over thirty before I owned a washer'dryer combo, which I consider still to be great luxuries!
So we are now in 2012, an amazing number of people found 2011 to have been a bad year, well especially some "tyrants".
I smile over how many of these despots were first promoted and propped up by the USA, then when they get out of hand or are no longer useful , they yell "Off with their heads".
2011 was good and bad for us, I slipped deeper and deeper into auto-immune hell, while Sel tried to keep all the usual stuff going around the house and change the world. Burn-out a phrase he hates but it does describe the spiral he went into. It was shock for him, but so many people relied on him to solve their problems and suddenly he couldn't.
However some really good things happened my visit with a Cuban rheumatologist in February, who immediately recognised the Myopathic problem (muscle problem)and suggested Prednisone and Methotrexate. My original specialist in Winnipeg just didn't catch the muscle problems so my GP referred me to Dr. Robinson who after a bad start with the first visit the second visit was great, happy to give me prednisone but very cautious about it as most North Americans seem to be.
Today I was accepted into a Myositis support group. It is rarer than scleroderma and comes in various sub groups very much like scleroderma. I am pretty sure it is Polymyositis which articles say can overlap with Sclero, sharing some genetic markers, it gets complicated!
This new diagnosis really helped me understand why altho I shared many problems with my Sclero sisters, none of them seemed to be in as miserable muscle shape as I was.
Is it true that misery loves company or is it pleasant to find people who understand your problems so you don't feel like a whiner. I think being part of a deaf group some of whom are married to hearing partners helps Dylan and Jackie.
Bill in this morning for our mental stimulation and breakfast, Sel made a potato torta, we are still working thru the potatoes we made far too many of for Xmas dinner.

Dylan and Jackie ready to hit the town, he won the prize for the evenings best costume, Jackie was gorgeous in sequins and a wig. I love watching my kids and G'kids having fun.

Hair colouring...

2011-12-30T17:14:00.000-06:00

So I am colouring my hair and I have to wait for 15 minutes while the brown and the grey go blonde. I let my natural colour grow in for a while a few years ago, my darling daughters informed me that it looked like the iron grey one associates with the matron of a female penitentiary (sp?), back to the bottle right away!
I am also trying to cut the hair of the Shih tzu cross, and believe me she is cross, this ordeal does not show the best side of either of us.
We have James and Zach around as Dylan has gone thrift shopping with Jackie, they are going to a costume New Year's Eve party, so Dylan is going in drag and Jackie and friend as naughty school girls. James who loves the thrift store opted out as he said he was going to be totally embarrassed if his Dad had womens clothes on!
Dylan took James and Zack tobogganning. The Prairies are notoriously flat and Winnipeg is no exception, but a smart city move has used the city garbage dumps as the city has sprawled out. They have covered them with soil and sod and turned them into sliding places for kids. They would be totally unsafe to build on but hopefully are not too risky for an afternoon or two sliding.
A friend dropped in,she called first so I was able to warn her about the hair situation, she left her black Yoga pants at home and wore jeans, black is simply not a practical colour in this house, boring grey or beige probably best. I don't like beige or grey much so I tend to just look hairy.
Speaking of hair I have a special little fur patch, no sniggering this is not getting lewd, Scleroderma is supposed to make you lose sweat gland, oil glands and body hair, so what happens here, I have a 4X2 inch patch on my forearm, that is growing fur, soft and cat like, the other arm not the same. I just have to be different.
OK time is up, time to attempt the climb into the bath for a shower. Husband at the ready if I fall.

This is scleroderma...

2011-12-29T21:36:00.000-06:00

This is a picture of my friend Shantae Davenport, she died yesterday aged 33 years old.
I "met" Shantae thru Facebook in 2009 just after I was diagnosed, she had had scleroderma for some time, but she was still a stunningly beautiful young woman.
I don't know how Tae as we called her started her battle.
Typically the first strange thing would have been Raynauds, this is a vascular problem that causes the finger and toes to turn white and blue if they are cold or under stress. It alone can lead to misery with digital ulcers that infect and as a worse case scenario can lead to gangrene and amputation.
Almost everybody with Scleroderma gets Raynauds, but the good news is that many, many people get Raynauds and never develop Scleroderma.
Tae may have noticed her hands becoming swollen and puffy and difficult to move.
Shantae probably felt extreme fatigue that could not be cured by a sleep, in fact many sclero patients have great difficulty sleeping too.
There is also significant pain thru-out the body, muscles, joints all painful.
She would have noticed GERD, which is basically an acid reflux that burns the throat, it can affect your voice too. Most Sclero sufferers get this but we take pills to help and avoid large meals particularly before lying down.
Once Tae's skin started to stiffen on the outside of her body, it was what was happening inside which was worse.
The disease can attack the kidneys, the lungs, the heart; the build up in the skin is collagen a good thing unless your body goes into over production mode.
When it gets in your lungs it causes a fibrosis build up, so that the lungs harden, early on with the stethoscope you can hear the crackle as you breathe.
Saving people with the kidney problem has improved a great deal, the lungs are still problematic.
It can also get into your gastro-intestinal system and the two Facebook friends I made died from this type of complication.
Basically the whole gastric system begins to harden and fails to pass nutrition to the rest of the body, basically starving the patient to death.
Sclero specialists are really quite pleased if you gain weight, as mine said "We love fat girls".
While Tae was losing weight she also developed Vitiligo, not so bad on an old white broad like me, but brutal for a lovely brown model and actress. Vitiligo were white patches that began to spread on her body and face.
Tae was married, but her husband earned too much for her to qualify for Medicaid, but not enough to pay for all the medecines and treatment she needed. Tae said he was having difficulty with the whole disease and was losing himself in video games, so she decided to divorce him, so that she would be eligible for the lowest level of US Health Care.
Everybody who envies the US lifestyle give yourself a damn good shake our Medicare ain't perfect but it is sure a hell of a lot better than the US system.
In the end Tae was fed intravenously but steadily lost weight. I was amazed how long she held out, what an amazing fighter that young lady was.
I am going to post one of the last pictures of Tae, it shocked me when I saw it and I have pondered posting it all day, but I want people to understand a bit about this vile disease that is so unpredictable, follows a different path in almost every patient; one medecine works well for one patient and does absolutely nothing for another.

This is Scleroderma.

Sad News

2011-12-28T23:05:00.000-06:00

One of my first friends on Facebook died today, it was Scleroderma that killed her, destroyed her digestive system so it no longer absorbed food for her, she was kept alive for an amazing length of time with IV feeding. Shantae was very young in her early thirties I think and she was a stunning looking model and actress.
We never heard this amazing person complain.

Well life goes on for the rest of us, I feel guilty and lucky to have lived as long as I have, altho I would like a few more years.

We went to an 80 years old birthday party. Barb is the second wife of the first Canadian principal who hired me. She looks maybe 60, definitely not 80 years old. Ray was my first principal and I was spoiled because he was also the best principal and definitely his staff were a creative and fun bunch.

Now I have friended two guys Frank and Keith with myositis, the dermatomyositis version, there are at least four versions of myositis, I can rule out juvenile myositis, I don't have the reddish purple rash of dermatomyositis but I do have a very itchy slightly raised rash on my inner upper arms, so who knows?
Then there is polymyositis and a nasty one called Inclusion Body Myositis which comes on slowly but steadily.
That has been the pattern of my muscle loss, first big sign, I couldn't ride a bike, bought a second hand tricycle but still couldn't ride it.Then I gradually was able to walk less ,carry less, started to use a walker.
Finally threw a bit of a temper tantrum in a letter to my new scleroderma doc here, tore up the first letter as a bit rude, sent a more polite version and explained that the skin thickening and loss of flexibility was nothing compared to the muscle loss. He called me back in and was awesome with the second visit. Then of course my lovely doc in Cuba, who convinced me to try Prednisone and Methotrexate together. I get my shot in the glutes this evening from my lovely "pain in the butt" husband.
Frank has a blog too so I have to find out how to follow him. Keith the other one actually lives in Winnipeg, a young thing born in the 50s, when he was born I was a naughty little teenager!

NOT NICE

2011-12-27T19:51:00.000-06:00

Today I am not a nice person, I feel grumpy and every thing I try to do hurts or I am to weak to do it. Yelled at my grandson James and his friend Zach, poor kids. Definitely Nasty Nanny here.
Thought I would try to download some ebooks, PHUQUE! Totally lost, went to the FAQ as in "things morons might want to know". Looked hard for a "was this helpful" button , didn't seem to have one, BECAUSE I wanted to say I couldn't even understand the questions, never mind the answers which were a page long and brought to mind even more questions.
I don't think in living memory that as many people came to our front door as today, you'd think we were drug dealers. Schlepping my aching back from here to the front door and back was not helping my generally unattractive disposition.
So I decided to cut the dogs hair she is part Shih Tzu which means she doesn't shed she just gets longer hair, which gets rasta-ish lumps.
But the scissors for cutting the dog's hair were not where they should have been.
A couple of hours later I found them in the middle of the pile of Mega Blocks that are supposed to make a warthog vehicle, it looks daunting!Like a 1,000 piece jigsaw of a grey sky!
Tried to plug in Xmas lights but fingers not strong enough.The flashing sparks of rage from my head looked interesting
Sel on TV again today as there was another Bear-spray incident in a mall, a bit of a crusade we have been involved in for several years.
The date for the arrival of the shower has been moved up to Jan.13th as the computer spit out an earlier date and didn't count in Xmas and New Years.
I was trying to figure out why when for the very rare occasion I got out my camera for the Christmas supper and took about 5 pictures, the battery died.
More FAQ,argggggh!
I want a book that says "Modern Life for Dummies", because I can't operate most of the machines in my house.... TV, DVD, Sirius Radio, vague on stove and microwave.
Oh well I can still operate the washer and dryer and the vacuum cleaner.
My son sort of cheered me up by saying "Mom your face is moving again, there are some wrinkles back and your mouth really smiles again" so it is really exciting to have a mobile face again, at least I will be able to make mean and nasty faces when I am feeling so out of sorts!

Boxing Day

2011-12-26T20:12:00.000-06:00

I just found a blogger in Portsmouth England with one of the myositis nasties, he is in his late sixties so almost as old as I am!
We had a great Christmas day, the meal was awesome,I was totally spoiled and sat like a lady in the La-Z-Boy everybody in good and friendly spirits, I had a couple of glasses of wine despite the methotrexate, but back on the wagon again today.
Our son and his wife Jackie, set off at midnight to be first in line for a Boxing Day sale, they took turns standing in line or sitting in the van, they were first in and got some extra special treatment, bought stuff for themselves and for relations up in Thompson. This is the sort of crazy thing Sel and I would do before all these ridiculous diseases, so it was good to see the old gene pool at work again!
We actually were pretty lazy, Sel not so much as he did some wiring upstairs. I had to lie down for a bit as my abdomen seemed to be having a bit of a problem digesting all the amazing goodies I had eaten yesterday.
I had planned to cut Zarzi's hair as she is looking scruffy, but she was postponed for a day, she hates hair-cuts so no problem there.
No plans for New Year's eve, we were going to do childcare, but James' Mom wants him for that evening.
I am not a big fan of New Year's Eve parties,always seem a bit forced to me. James worried about end of world warning for 2012 so I have found a couple of newspaper reports that say the Mayan glyphs had been read incorrectly and it actually predicts change.
I think we will read our Kobos or maybe watch a movie.

Christmas Shower

2011-12-24T22:51:00.001-06:00

So yesterday we visited many bathroom showrooms and studied catalogues in some big box stores.
Finally we found what we wanted, the bottom part of what could be a three piece shower. But we already have tiling and plumbing in place so we wanted to pull out the old claw foot bath, I nearly fell in face first last time I showered, so now I am really scared of it.
Anyway we are buying just a receptor that will go where the bath was, and we will do a bit of tiling to cover the join.
This is easier AND ecologically correct because we don't waste the already adequate tiles.
This took a lot of plodding about and standing; today I feel as if a large carthorse did the rumba on my back!
If I stand up I fall back down again,looks pretty silly a bit like a Jack in the box?
Anyway it is supposed to arrive Jan 6th but may be slowed a bit by holidays, I am really excited.
Sel also bought me a pretty walking cane which I needed even indoors today.
This evening a light supper, then treats, Baclava,and chocolates.
Dylan and Jackie dropped in and he helped us clip the dogs nails the big ones are too hard for us now, he also did Annie's nails truly it sounded like butchering a small pig to hear her squeal; fortunately the family upstairs were out or they would have called the Humane Society, actually they know we spoil all the pets rotten.
Wrapped the James' presents, turkey is thawing,tomorrow we have to decide whether to peel or just scrub the potatoes I approve the latter as best part is just under skin.
A bit worried as Aussie our oldest dog and pack leader is getting quite old and then there are two other males,a couple of fights yesterday, we do not see that normally, I am wondering if a dominance struggle is happening. We may have to keep the old one separate from the other males for a while.
Well Merry old whatever tomorrow, have fun in your own ways, and I will enjoy myself and my family too.

Granny Grinch

2011-12-21T17:01:00.002-06:00

I sort of liked Christmas as a kid; I liked mixing the Christmas pudding a couple of months before Christmas, every year as I stirred my mother said to make a wish. I wished for the same thing every year, "world peace".
I liked decorating the Christmas tree with the same things each year carefully wrapped and put away, there was a blue glass bird with a white feathery tail, it was my favourite, I wondered if it had survived every year as it was extremely fragile.
I think I continued to enjoy Christmas as the kids were little, mostly symbiotic pleasure in their excitement.
While the grandkids were small I could get into a bit of excitement.
The older I got the less I enjoyed Christmas and saw it as a consumer event.
When I was working as a teacher, I had fun with the kids, but I could never get into many of the things my colleagues loved. The Secret Santa where one drew a name and bought that person a gift, I usually stuck to food type gifts, as my tastes in other stuff were unusual to weird.
The teachers' Christmas party was an ordeal, which I finally started to decline.
I am really not a party animal,being useless at small talk, I usually try and find a resident pet or child to visit with.
Since we retired that was back around 1992,(good grief that is almost 20 years ago) we have really started to minimise Christmas.
I used to send out 40 to 50 Christmas cards, finally I decided that it was silly just to exchange a Xmas card each year. The last year I sent out about 44 cards and received roughly the same number. The next year I sent out none, I received most of the usual ones. The next year I received three cards; I had no idea people kept such careful count of who they received from so that they knew to whom to send a card the following year.
As a family we went from giving presents to everyone, to pulling one name and just buying them a present.
Then we went to kids only; as they got older we just wrote cheques.I can't bear to spend a sum of money on something that is not liked or wanted. With a cheque,it's not personal but it can be something useful or desired. No surprises but I have found many surprises often require great theatrical talent to provide the acceptable feedback.
This year, no cards, we still get some from organizations to which we donate. No Christmas baking, extra fat and sugar not required. I used to watch kids in my class take one bite of a cupcake and throw it away, it was rather sickening. I did buy a small fruit cake with marzipan icing.
Minimum decorating, some lights outside and on the rubber tree. I am still trying to decide if I should bother with ornaments.
We did do Christmas shopping for James and Zack who lives upstairs.
Treats for the cats and dogs and some address tags for the dogs, this creates income for the shelter and gets the dogs back to us if they get out.
WE are planning a Christmas meal but it will be fun and not elegant, I am convinced the more you plan a picture perfect Christmas the more stressful and less fun it is.
So I, Granny Grinch, sit back in my chair and feel relaxed and contented, quite happy not being in the frantic, frenzied ordeal of a modern Commercial Christmas.

Colonialism Continues

2011-12-20T22:16:00.000-06:00

Well the Winnipeg Free Press didn't want to publish my article I guess so I will publish it here.

Colonialism continues…
Our aboriginal population clearly recognises that Colonialism has been at the base of their problems since the British and other Europeans started to move onto their lands.
The residential schools were an enormous error, breaking up families, forbidding the use of the languages, forbidding the old spirituality and insisting on their children becoming Christians. Even worse some of these teachers, priests, nuns and care-givers, indulged themselves in pedophilia. Some resilient children survived these horrors or were lucky enough to have decent adults around them so that at least they were not left with the indelible marks of abuse.
The Colonial system is still alive and well and operating throughout Canada.
Let us not kid ourselves. What was the real point of Reserves? We gave out a comparatively pocket hanky sized piece of land to various groupings of aboriginal people and called them Reserves. Really was this an act of generosity? I think not, it was a great way to keep aboriginals out of sight so we could build “nice” European cities and towns far away.
Furthermore not all aboriginal groupings had a system of Chiefs and band council; since the British found it much easier to deal with a couple of leaders rather than the whole group, whether or not a hereditary Chief was the custom the government would install one.
Then the Colonial system continued the Colonial tradition of paternalism by giving the Chiefs & band Councils money to run their Reserves.
Most of the Reserves had and have no economic base and any small town mayor will tell you without an economic base, it cannot survive. Consequently the good old Colonial monthly welfare cheque was the solution.
Those families still hunting, fishing and trapping watched neighbours who sat at home and did very little get a cheque while they worked in the bush or lakes in very tough conditions; so not surprisingly fewer and fewer chose the harder option.
With the Colonial welfare cheque we created pointless, boring lives for the people and to make things even more depressing they could watch the impossibly high life style shown on TV. Sounds like a recipe for addiction and family dysfunction.
It should be no surprise that far too many aboriginal teens are committing suicide. During the teens almost all youth ponders the meaning of life and wonders what the point of it all is. Teens want to have expectations and hopes for the future. What are they offered? There’s more welfare and very little hope.
A few reserves have some form of economic base and great leadership and these are Reserves where good hopeful lives can be had.
If we saw photos and read stories of places similar to Reserves, especially if they were in a country that was out of western favour right now, what would we call them?
Personally I would think they were “gulags”, cruel horrible places where undesirables were kept; in fact isn’t that exactly what they really are?

Tortiere Pie

2011-12-19T15:34:00.000-06:00

Last night we drove out with Sel's sister Jackie and her husband Carl to visit Sel's other sister Meryth she and her husband Dave live out in a small country town called Carmen.
Dave had cooked Tortiere Pies, it was my first taste, but to many Quebecois they are an important part of Christmas, both of Sel's sisters lived in Montreal at one time.
A pleasant evening was had by all, but quite rightly Dave cut us off after a point saying the "organ recital " should be over and we might be able to find another topic of conversation, It was his birthday and I think he was close to the eldest, so we did tone down the fascinating state of our bodies!
As we arrived home we could hear a young woman screaming on the next street, so we jumped back in the car and found a couple struggling and the young woman was definitely very unhappy, so we said she could come in our car, after more shoving and pushing, she jumped into our car and Sel told the guy we were calling the Police. After the bad experience we were a bit nervous, saying that we would stay in the car, but when the cruiser arrived , there were two young officers who behaved really well, the young lady stayed in the car and we invited the other to take Sel' statement in our house. The young woman asked if we would drive her home rather than go home in the cruiser car, so we did that. The police went over to visit the "boyfriend", then they called us to tell her that they had got her jacket back.
I had written to our local Sergeant saying we were really upset by the treatment we had received and actually felt scared of the police. Today I wrote an email to tell her that we had had a really positive experience.

When we had the OT visitor she had said that our bath-tub was the most dangerous aspect of our living area which is true, so we have decided to pull it out and there are full shower kits on line that you can use to replace the bathtub. So I have several ads in my favourites, after Xmas I think we will plan this change.

Glowing grandson.

2011-12-17T16:37:00.000-06:00

So here I am with the taxi driver who was Yadriana's cousin. Unfortunately you can not see much of the vintage car,they are all maintained beautifully, but the engines are from younger cars usually Japanese and probably Chinese soon. We saw some very nice small Chinese cars down in Cuba.

These are two pictures showing James with his Glo in the dark hair, he was dyed back to dark brown before going back to Mom, a little darker than his real colour, he looked like a little Italian boy.
James comes back across the river today, for 3 weeks with Dad, Christmas eve and morning he will spend with Mom and family then the rest of Christmas over here.
One day someone asked him if it wasn't hard going backwards and forwards. "That's my life and that's the way I like it!" said he.

Email from my Cuban doc about broken rib, recommends same treatment as doc up here, very encouraging news.

Pictures from Cuba trip Oct15 to Nov 15

2011-12-16T22:07:00.000-06:00

Finally I have downloaded my Cuba pictures, a lot of cats,very few people. These three are just shots of the hotel. the first is the foyer and the other two part of the grounds.

Above the absolutely beautiful clean beach, and then a shady corner in the hotel grounds.

Here are a couple of the cats we fed under the table in the restaurant or sometimes we folded up fish in a paper serviette and took it out to them.
Look at the long nose on the orange cat he was so regal, he had an identical brother who felt some strong emotion for me and would claw at me to the point where I had to whack him with the handle end of a table knife! I really wasn't sure if it was love or greed.
The chamber maids were lovely women and they would always twist the towel into some animal or bird

Now I'll find a picture of my rheumatologist and his wife whose speciality is breast problems.

That's Sel with them at a little restaurant where we went for coffee. I am trying to upload a picture of me with the driver of a vintage car, cousin of the female specialist. Seems like it doesn't want to, maybe I have exceeded my daily limit?

Our North Star...

2011-12-14T17:37:00.000-06:00

Excellent news our grandson Jesse, 17 years old has just been asked to join the Norman North Stars; this is really big deal.As a baby Jess would stop crying if he had colic, when sat in front of a hockey game. He had a hockey stick in his hand as soon as he could walk and we have some amazing pictures of him as a toddler in the most outrageous get-ups, his Mom's boots and oven mitts and nothing else except a hockey stick. His Dad is a good player and great coach.
So following the team means a lot more road trips in the future, the family will be here Friday, then two more games in the south on the weekend.

Excellent jazz last night , it was the showcase of the jazz students at the Univ. of Manitoba faculty. They were impressive. The last group from fourth year was amazingly good. There was a young man on the keyboard who was in second year who played with them, no surprise as his skills are extremely good.
Sel and I don't enjoy "scat" singing but one young woman was extremely creative and had lots of personality.

Today we had a visitor, Gwen who is an occupational therapist,there have been improvements with the prednisone, but limited. I knew all about walking, getting into cars, putting on clothing as I do it every day. But some time ago I fell over and could not get up, so I wanted to see if there had been any improvement.
So I asked Sel to wait while I lay on the floor....problem number one it was extremely difficult to get down on the floor and my precious fragile pelvis thudded about two feet to the ground; but hipbones held up. So now the difficult part getting up. After a lot of embarrassing rabbiting about I turned onto my side, but that was it , no getting up possible, I could get to sitting up on the floor, but a pull forward did not work at all as knees were not working so finally poor Sel had to hoist me from behind his arms under my arms.
Rather a mortifying experience; the OT thinks I should continue using my walker because of possible falls, but I have agreed to carry my cell phone so I can call if I fall.
We seem to have installed most of the aides we need, a bar for turning over in bed may help and a hand held shower,probably a walk in shower or even better a wheelchair accessible shower, as despite present improvement it is a progressive disease. Progress is usually positive but in myopathy/myositis progress equals getting worse.
We kept feeling we recognised Gwen and then found out that she had lived up North in Thompson during our time up there, so that is our doctor, our pharmacist, our postie, some neighbours and friends who are also previously Thompsonites.

As a Previously Able Bodied person, I love the CEO of Society of Manitobans with Disabilities term for the masses, "Temporarily Able Bodied people".

Oh while we are on the subject of bodies, if you are foolish enough to drink and drive, please sign your donor card first. There are lots of people who would like to have your lungs, heart, kidneys etc.

FRAGILE?

2011-12-13T15:50:00.000-06:00

Sel and I went to see my new pulmonary specialist, a brusque but very pleasant man. Apparently from just the X-ray things did not look so good. He quietly explained what the future might look like and It was not good. I asked him if he had the results of my CT scan (lungs) Or my echocardiagram (heart, he said he did not have them , I told him where they had been done and he asked a nurse to get the results faxed over immediately. Sel and I went back to thw waiting room and held hands and tried to be very brave. The next patient was being assessed for a lung transplant, younger than me, very scary.
After about twenty minutes we were called back to the doctors office. When said he, it's a good job we got these reports, I thought the worst was nigh; then he said your heart is working perfectly and your lungs are just a bit scarred but not seriously damaged, we need to watch you so come back in six months.
What a roller coaster event our emotions were all over the place; but mostly very happy.
Then we went on to the Scleroderma Clinic and Dr. Robinson's absolutely lovely student Cal assessed me, even Sel liked him!
Despite the Prednisone my ankles are still very swollen, so change of meds, for high blood pressure to less swelling one.
Never in my life have I thought ever of myself as "fragile", but apparently that rib break in a chair defines me as having serious osteoporosis. So a new med to strengthen bones, taken once a week by mouth.
In the evening a special treat off to James' school concert. His new school principal is gorgeous in the personality sense, there was a little bit of regular Christmassy stuff, but most of the programme was Japanese drumming, and African dances and songs; really a pleasant change and the kids looked as if they were having fun.
Bill is here right now and a wall is being built across the big room upstairs, so that if we have visitors they have some privacy from our lodgers upstairs, when they stay as it is presently part of the upstairs kitchen, a bit awkward.

UNEXPECTED EVENT or why people may not trust cops.

2011-12-11T16:32:00.000-06:00

Thursday evening,we planned a meeting of the Powerline exec: basically the three of us who came up with and shared the idea of having a local phone number and email where nervous people could share concerns about our neighourhood.
We have always guaranteed full anonimity as some of our local residents have not had squeaky clean lives and carry less than positive feelings about police.
After the meeting we adjourned for the traditional glass or two of homemade red wine.
After a couple of glasses (I was not drinking actually because of the new meds.)we received a Powerline call. An immigrant family who have some dogs were threatened by three teenagers one of whom showed a gun and said he would shoot their dogs dead. The family who speak little English and were scared of police, talked to their neighbour, a person we know well. This person also will not call the police as her past is less than angelic, however she will call us; despite an imperfect lifestyle, she has a horror of guns, not surprising considering her 13 year old son was shot in the head and died a while ago.
So we called the police at the emergency number as we had been told to do if there was mention of a gun.
The 911 operator was great, taking info, accepting that we would not name names. We did have the probable address of where one of the youth lived.
We were thrilled to see cruiser cars out there within five minutes, we were feeling pretty pleased with our Winnipeg Police.
Suddenly we were surprised to see four police officers in our vey small porch. Sel went out to talk to them, I think he was going to commend them on their quick response.
Suddenly our friend and I could see this was a confrontational situation and Sel was being intimidated, one officer was right up in his face and repeatedly jabbing his finger in Sel's chest. Sel tried to move his finger away gently, the officer then said "you touch my finger again and I'll arrest you for assaulting a police officer".
The officers wanted the name of our contact, Sel refused to give it which has always been our policy, if we broke that rule we would lose many of our COWs (Citizens On Watch).
By this time a number of neighbours were aware of the confrontation and had gathered to watch. The officer at last seemed to accept that we would not give a COWs name.
As well as the 4 officers in the porch there were 2 more outside, so we had 6 officers and 3 cruisers.
Finally the four inside decided to leave, Sel stood on the front step. One of the female officers once she was out on the street, turned and yelled what definitely sounded like "Fucking Liar", unsure what she meant and also thinking that this was behaviour not suitable to an officer, Sel asked her for her badge number, he went down the front steps it was dark so he stepped on the sidewalk to read it. A mistake, she began twitching her shoulder back and forwards, so he could not read it. Suddenly she yelled "can't read it eh? you're intoxicated, I smelt the booze on your breath"; within seconds Sel was in handcuffs still in his slippers without a jacket and was put in one of the cruisers.
My friends and our neighbours were amazed and horrified. Somebody asked what he was being arrested for, the reply was that he was not being arrested he was being taken to the "Drunk tank" for being intoxicated in a public place.
To say I was in shock was an understatement;my brain was frozen, I couldn't remember phone numbers. I called many police numbers in the phone book contiuously BUSY or message machine full. I called a friend who works for the CBC and left a message on his cell phone.
Finally we figured out where the Drunk tank was and decided to take a cab, since our friend had had a drink and I'm not supposed to drive.
A cab came fast and off we went to the Drunk tank. They let us wait in between doors as it was bitterly cold as they processed a young woman.
Then we went in and they said they would bring Sel in a minute. The people there were really nice but when they gave me Sel's belt I just lost it, could not stop laughing, just imagining Sel hanging himself over such a ridiculous thing.
We called a cab and the same guy came back, we felt later he had waited for us, as he shared some information with us about taxi-drivers and the police, not pretty.
The drunk tank said Sel was not intoxicated. Four officers and two cruisers took Sel to the drunk tank; meanwhile a kid was wandering around our area with either a real gun or a convincing fake.
By the time we came home, meds. or not I had a couple of glasses of wine.
The CBC guy came just after we came back from the Drunk tank having just listened to his messages.By an amazing coincidence he was to interview the third in command of the Winnipeg Police, he and we agreed we did not want to make a big public thing about this, but that the officers should be made aware that their behaviour had been inappropriate.
There are no chairs in a Intoxicated person's cell, I guess you could fall off it break something and sue them, or you could beat yourself to death with it or attack someone entering the cell. So poor Sel had to stand while my brain was frozen.

Less frying pan and more coffeee.

2011-12-08T17:04:00.002-06:00

Food for Thought

"The idea that Alzheimer's is entirely genetic and unpreventable is perhaps the greatest misconception about the disease," says Gary Small, M.D., director of the UCLA Center on Aging.

Researchers now know that Alzheimer's, like heart disease and cancer, develops over decades and can be influenced by lifestyle factors including cholesterol, blood pressure, obesity, depression, education, nutrition, sleep and mental, physical and social activity.

The big news:
Mountains of research reveals that simple things you do every day might cut your odds of losing your mind to Alzheimer's.

In search of scientific ways to delay and outlive Alzheimer's and other dementias, I tracked down thousands of studies and interviewed dozens of experts. The results in a new book: 100 Simple Things You Can Do to Prevent Alzheimer's and Age-Related Memory Loss (Little, Brown; $19.99).

Here are 10 strategies I found most surprising.

1. Have coffee.
In an amazing flip-flop, coffee is the new brain tonic. A large European study showed that drinking three to five cups of coffee a day in midlife cut Alzheimer's risk 65% in late life. University of South Florida researcher Gary Arendash credits caffeine: He says it reduces dementia-causing amyloid in animal brains. Others credit coffee's antioxidants. So drink up, Arendash advises, unless your doctor says you shouldn't.

2. Floss.
Oddly, the health of your teeth and gums can help predict dementia. University of Southern California research found that having periodontal disease before age 35 quadrupled the odds of dementia years later. Older people with tooth and gum disease score lower on memory and cognition tests, other studies show. Experts speculate that inflammation in diseased mouths migrates to the brain.

3. *Be a*Googler.
Doing an online search can stimulate your aging brain even more than reading a book, says UCLA's Gary Small, who used brain MRIs to prove it. The biggest surprise: Novice Internet surfers, ages 55 to 78, activated key memory and learning centers in the brain after only a week of Web surfing for an hour a day.

4. Grow new brain cells.
Impossible, scientists used to say. Now it's believed that thousands of brain cells are born daily. The trick is to keep the newborns alive. What works: aerobic exercise (such as a brisk 30-minute walk every day), strenuous mental activity, eating salmon and other fatty fish, and avoiding obesity, chronic stress, sleep deprivation, heavy drinking and vitamin B deficiency.

5. Drink apple juice.
Apple juice can push production of the "memory chemical" acetylcholine; that's the way the popular Alzheimer's drug Aricept works, says Thomas Shea, Ph.D., of the University of Massachusetts. He was surprised that old mice given apple juice did better on learning and memory tests than mice that received water. A dose for humans: 16 ounces, or two to three apples a day.

6. Protect your head.
Blows to the head, even mild ones early in life, increase odds of dementia years later. Pro football players have 19 times the typical rate of memory-related diseases. Alzheimer's is four times more common in elderly who suffer a head injury, Columbia University finds. Accidental falls doubled an older person's odds of dementia five years later in another study. Wear seat belts and helmets, fall-proof your house, and don't take risks.

7. Meditate.
Brain scans show that people who meditate regularly have less cognitive decline and brain shrinkage - a classic sign of Alzheimer's - as they age. Andrew Newberg of the University of Pennsylvania School of Medicine says yoga meditation of 12 minutes a day for two months improved blood flow and cognitive functioning in seniors with memory problems.

8. Take D.
A "severe deficiency" of vitamin D boosts older Americans' risk of cognitive impairment 394%, an alarming study by England's University of Exeter finds. And most Americans lack vitamin D. Experts recommend a daily dose of 800 IU to 2,000 IU of vitamin D3.

9. Fill your brain.
It's called "cognitive reserve." A rich accumulation of life experiences - education, marriage, socializing, a stimulating job, language skills, having a purpose in life, physical activity and mentally demanding leisure activities - makes your brain better able to tolerate plaques and tangles. You can even have significant Alzheimer's pathology and no symptoms of dementia if you have high cognitive reserve, says David Bennett, M.D., of Chicago's Rush University Medical Center.

10. Avoid infection.
Astonishing new evidence ties Alzheimer's to cold sores, gastric ulcers, Lyme disease, pneumonia and the flu. Ruth Itzhaki, Ph.D., of the University of Manchester in England estimates the cold-sore herpes simplex virus is incriminated in 60% of Alzheimer's cases. The theory: Infections trigger excessive beta amyloid "gunk" that kills brain cells. Proof is still lacking, but why not avoid common infections and take appropriate vaccines, antibiotics and antiviral agents?

*What to Drink for Good Memory*

A great way to keep your aging memory sharp and avoid Alzheimer's is to drink the right stuff.

a. Tops: Juice.
A glass of any fruit or vegetable juice three times a week slashed Alzheimer's odds 76% in Vanderbilt University research. Especially protective:blueberry, grape and apple juice, say other studies.

b. Tea:
Only a cup of black or green tea a week cut rates of cognitive decline in older people by 37%, reports the Alzheimer's Association. Only brewed tea works. Skip bottled tea, which is devoid of antioxidants.

c. Caffeine beverages.
Surprisingly, caffeine fights memory loss and Alzheimer's, suggest dozens of studies. Best sources: coffee (one Alzheimer's researcher drinks five cups a day), tea and chocolate. Beware caffeine if you are pregnant, have high blood pressure, insomnia or anxiety.

d. Red wine:
If you drink alcohol, a little red wine is most apt to benefit your aging brain. It's high in antioxidants. Limit it to one daily glass for women, two for men. Excessive alcohol, notably binge drinking, brings on Alzheimer's.

e. Two to avoid: Sugary & soft drinks,
especially those sweetened with high fructose corn syrup. They make lab animals dumb. Water with high copper content also can up your odds of Alzheimer's. Use a water filter that removes excess minerals.

*5 Ways to Save Your Kids from Alzheimer's Now*

Alzheimer's isn't just a disease that starts in old age. What happens to your child's brain seems to have a dramatic impact on his or her likelihood of Alzheimer's many decades later.

Here are five things you can do now to help save your child from Alzheimer's and memory loss later in life, according to the latest research.

1. Prevent head blows:
Insist your child wear a helmet during biking, skating, skiing, baseball, football, hockey, and all contact sports. A major blow as well as tiny repetitive unnoticed concussions can cause damage, leading to memory loss and Alzheimer's years later.

2 Encourage language skills:
A teenage girl who is a superior writer is eight times more likely to escape Alzheimer's in late life than a teen with poor linguistic skills. Teaching young children to be fluent in two or more languages makes them less vulnerable to Alzheimer's.

3. Insist your child go to college: Education is a powerful Alzheimer's deterrent.
The more years of formal schooling, the lower the odds. Most Alzheimer's prone: teenage drop outs. For each year of education, your risk of dementia drops 11%, says a recent University of Cambridge study.

4. Provide stimulation:
Keep your child's brain busy with physical, mental and social activities and novel experiences. All these contribute to a bigger, better functioning brain with more so-called 'cognitive reserve.' High cognitive reserve protects against memory decline and Alzheimer's.

5. Spare the junk food: Lab animals raised on berries, spinach and high omega-3 fish have great memories in old age.
Those overfed sugar, especially high fructose in soft drinks, saturated fat and trans fats become overweight and diabetic, with smaller brains and impaired memories as they age, a prelude to Alzheimer's.

*Excerpted from

Jean Carper's newest book:
"100 Simple Things You Can Do to Prevent Alzheimer's"

I knew my Mom should not have hit me on the head with a frying pan;so if I can't remeber who you are, please feel free to blame her!

ARM CHAIR INJURY

2011-12-07T23:45:00.000-06:00

Oh good grief it looks as if that rib is broken or it's an intercostal muscle tear, leaning over the arm of my chair no less.
The X-ray tech very pleasant and said that short older women often break their ribs, leaning into a chest freezer or cleaning the bath-tub!
However I also learned when a third X-ray was needed that there is not much calcium in my bones and it is hard to see if it is broken or not; the lungs show up rather more solid as they are stiffened with fibrosis.

I was supposed to have a lung function test on the 12 th. but I am being advised to cancel as not being able to take a deep breath will make me show up as half dead!

Meanwhile I had a bit of a shock when I learned I probably will not be able to regain the muscle I lost with this myositis, but may be able to hang on to what is left. However I am off the arm weights till whatever I have done to my chest is better. SHIT.

So we went and bought some Xmas lights to cheer ourselves up.

Another dental session we are nearing the end finally, most things patched up economically and usable for a few more years.

Yesterday late afternoon we met Thomas Mulcair who I hope will be the next leader of the NDP/NPD in Canada, he and his wife are a charming, intelligent and lovely couple, he is fluently bilingual, a good listener a diplomatic man who has principles. I rarely get excited over "candidates" but this man is really a cut above the average and even the better, so we will put some effort behind him.

Time for Nurse Sel my favourite pain in the butt to give me the methotrexate shot.

Winnipeg's drummer boy

2011-12-06T14:48:00.001-06:00

Just a quick blog as I am running out of free time. Sel spent part of day researching rechargabe electric winter boots and mittens they do exist, a company calle Gerbing, manufactures and sells them but mostly in the States.In their promo they mention Raynauds and believe it or not they actually name scleroderma.Wow!
Besides finding electric boots and mitts, I received a message from a couple who have found Viagra to be very helpful in keeping blood flow moving,which helps stop digital ulcers forming; no mention if this produced other benefits; but the complexity of having body parts that are inflexible may thwart other benefits.
Good news James' resource teacher is following up leads for him and at 10pm was online when Dylan e-mailed her about wanting to be included in reports. She had been trying to track down his e-mail so happy connection.
Tonight there is a meeting for one of the leadership hopefuls for the federal NDP; he, Thomas Mulcair will be getting an important endorsement which I can't tell you yet.
Ok I will attempt to share our local drummer boy with you, typical Wpg. teen shorts and runners in the snow!
Winnipeg teen's 'Little Drummer Boy' becomes YouTube hit | CTV News

Audial Processing Delay

2011-12-04T21:58:00.000-06:00

Hmmm? I had hoped that quitting drinking would make a huge improvement to my life, but I still seem to be basically unstable as in fall over easily, terrible memory still, very disappointing.
Yesterdays concert was absolutely wonderful. A fantastic pianist fron Quebec playing an almost unheard of work by an unknown genius, Mathieu he wrote this work in 1960 but it was never played publically until 2008, what a loss, this pianist is on a mission to bring his work to public attention, it is also magnificent music for this brilliant pianist to play. He played an encore a piece of jazz that he had written it was also really excellent. After the intermission we had a great piece by Sibelius, wonderful.
Sometimes when I am listening to the symphony I have such an intense feeling of pleasure I want to share it with everybody, I often think of my daughter in law Jackie and wish she coulld hear it too.

Breakfast with Bill as usual,the Saturday Globe and Mail had been unusually interesting so we were able to discuss a great deal from that, pausing to feel proud that Canadians are notorious counterfiters, so bad that we are going to use a polymer or very thin plastic produced only in Australia to make our new bills.
Since thirteen percent of our bills show traces of cocaine we wondered how the new bills would work for that. Then I also mentioned that if 13% had been up some peoples snout they might have a sprinkling of Staphlococus Aureus a scary bacteria found in many peoples noses where for some reason it does them no harm but it is also really bad to get in your sclero digital ulcers.
I don't think I mentioned our trip to James' parent & teacher interview, Dylan being off repairing a bridge near Dauphin and Jackie still learning of the family learning problem asked me to go with her. It actually worked out really well as Catherine (James' Mom) came with her nice new male friend Loren.
So I had to explain that part of James' problem in school was probably inherited from me, it hit Dylan too, then our two grandsons thru Teresa, skipped Karens children but seems to have found James.
It is called Audial Processing Delay, we hear quite fine, but the process by which the brain understands words heard is slightly delayed. The school resource teacher was terrific and said she would look into the FM system and him seeing an audiologist. It would be great if this will work for him.
I would say "I beg your pardon" to someone and by the time I said it I had figured out what they had said, so in a classroom where there is a huge amount of extraneous chatter , it is even more difficult to process all the info.
I had to accept that I was just stupid and inattentive and lived in my own dreamworld, I don't think it was diagnosable in those days!
Dylan got lots of one on one coaching thru a service no longer available to kids in the city. Teresa our daughter tracked down an audiologist miles away from where she lived and took her sons there. Now there is an FM system,l, the teacher wears a little microphone and our grandchildren wore ear-phones, all you can hear is the teacher.
By the time I went to university as a mature student I had worked out if I sat in the front row directly in front of the prof, it worked fine for me and pleasantly discovered I was a lot smarter than I had thought.
Still to this day I can not decipher the words in songs; my daughters have laughed themselves sick at the completely wrong words I sing to songs they know;so I guess that's why I never became Madonna.

Mundane stuff and then a rant.

2011-12-03T17:58:00.000-06:00

Last night we watched the Winnipeg Contemporary Dancers;interesting programme, the last one was our favourite, but new dance does not tell a cohesive story or even seem to concentrate on one theme or mood, it seems a bit like abstract art, you like it for itself, it doesn't really represent something tangible.
Tonight the symphony, almost always enjoyable, except for Mozart and I think we will give our tickets to the Messiah to someone else, I love the music and the choral bits but really dislike the soloists, trained singing voices have always totally grated on my ears.

I tidied the exterior of the fridge, stuff was retired and the health information package that is for emergency or first responder people was updated. Truly this blog is becoming dangerously mundane.

I shall write an opinion, I think that the Aboriginal system of Reserves is a completely farce. The reserves were develpoed to get rid of aboriginal people, there was no economic base, no future for an economic base, just packing the Indians off and out of sight.
Basically the reserves have become gulags, mostly hideous living conditions, poverty with no expectations for any improvement. Then because there are no jobs except on Band council, the people receive a welfare cheque to live on, jolly nice of us to not let them starve. However living on welfare is horribly boring, nothing to do, no incentives to do anything, is it any wonder that people use alcohol and other drugs to dull the boredom, which of course lead to even more problems.
I would like to see the Reserves become like "cottage" country, where people go in the summer or if they want later retire there. I think that any people who want to relocate to a town or city should be encouraged to do so; better health care, schools and jobs.
All the politically correct rubbish about avoiding assimilation seems incredibly stupid when we see that people are watching American TV, drinking Coke and alcohol eating processed food and living in awful conditions.
There is a tiny problem as the Chiefs and band managers often have an income based on the number of people on reserve; further more almost all the chiefs have a house or home not on reserve; often comfortably in suburbia.
Upgrading reserves is easier said than done houses are often spread far apart which means to put in water and sewerage requires a huge cost for infrastructure,homes on a single street so much less expensive and apartments even more economical.
So there it is, I am mad as hell about building more jails here in Manitoba, somewhere in the future the new jails will be the "residential schools" equivalent for which we just apologised.

Today I reached over the arm of my Lazy-boy and something hurt, it continues to hurt especially when hugged, don't tell me I have broken a rib.
Also the Sclero sisters on Facebook have confirmed that the things that won't heal on my knuckle and ankle bone sound like digital ulcers, and also that the same do not always occur on digits, but anywhere where blood flow is low.
To get totally grossed out Google< Scleroderma, digital ulcers and hit images , but not on a full stomach, pretty yucky. Avoiding getting them infected is very serious business, since we all use our fingers to wipe our behinds, sadly E-coli infection is not uncommoon, so not a good idea to enonomise on toilet paper.
Aren't you glad I shared this with you?

Maybe a yellow Porsche

2011-11-30T21:31:00.000-06:00

WOW, you really do have to be careful of what you wish for! Shortly after I had written my blog yesterday, I receive a text from my lovely daughter in law Jackie saying "I can bring Roxy down tonight"; we were actually in bed so girded ourselves up to greet them in dressing gowns. Jackie pulled rapidly down the road by the big galloping pup.
It is lovely to have her back, the house is good and messy again and she keeps all the others exercised, chasing around. I love when they do the flying hurdles over the back of the futon.
I kept falling asleep at the dentist today,nowadays they put you flat on your back, so it is very relaxing!
Tonight was the last half price Wednesday at the Salvation Army thrift store, the end of an era, so we had to go, found some good bargains;huge long line-up to pay, a gent fortunately with one person between us and him as he talked to her, was one of those scary people who know all about God,right down to amazing details about the extra-terrestial creatures that He drops down on us from time to time.
I was thinking how lucky we were to not be next in line to him as the poor lady tried to come up with appropriate responses;"really" seemed to be her favourite.
Alas when it came for him to pay a certain lack of Godliness appeared he having removed a price tag from a very expensive leather coat trying to insist it was the same price as a much cheaper model. The Sally Anne rule is that no price tag means no sale; a line of about 20 people very patiently watched as a charming and firm sales clerk dealt with him. After he had left we all commended her on her calm and patient manner.
The evening was rounded out by supper at Salisbury house; chili-nips and fries, there goes good eating!
I can eat the fries at Salisbury House, they either cut their own or the ready to go they buy are not packed in whey.
I am allergic or intolerant of the proteins in milk, the casein and the whey. This is not lactose intolerance, there is no med you can take you just have to stop eating all dairy products.
Discovering some fries are packed in whey solved the problem of why some fries gave me bloating and miserable pain.
For years it was thought I must have ulcers and I swear just about every piece of my intestines was examined, so of course I was put on a bland ,milky diet which of course made it all worse.
Finally when our youngest grandson seemed to be having trouble with milk I consulted Dr. Google and discovered a finding from Italian doctors re the milk intolerance.
The piece that fooled everybody was this usually causes diarrhea, but my grandson and I get chronic constipation instead. Lucky little boy seems to have grown out of his intolerance, I am the less lucky 1% of people where it continues into adulthood. I love cheese,blue and the soft French cheeses on a baguette; but the pain is not worth it.
Of course I really don't need it, but a sweet yellow Porsche could be on my wish list! Well you never know it worked last night!

Enough

2011-11-29T17:34:00.000-06:00

It is almost the end of November and the temperature at 5:00pm is 1C, yes that is one degree above freezing;it is quite remarkable. November is usually a fairly cold and miserable month but this year it has been incredibly mild. Climate change is flourishing while the Royal Reform Regime is in complete denial. Four years of this and will any of us recognise Canada, even worse though will there be a Canada or will we be a few more stars on the US flag?
I woke up the other night, finally remembering how to spell "virtuous". My virtue has continued unabated, fourth curtain pinned and hemmed, acrylic version of a feather duster found and I have been flitting about like the good house keeping fairy, dislodging dust and cobwebs that have gathered over the last couple of years as the Myositis has crept up on me.
We have also moved James' toys downstairs and pruned a few that seem to be out-grown.
With James back at his Mom's home we are also bereft of the terrible Roxy pup. I think we will have to put in a request for her as it is downright stodgy now with just the older dogs.
Off to see a play reading tonight, grim subject called "empty" about food banks. The school principal telling me today they are very short of boots and coats for kids in the school, some families living so close to the edge.
We are so lucky, not rich but we have quite enough. Can't think of anything I need for Xmas, I might like a pretty walking cane but I certainly don't need one!

Virtue

2011-11-27T21:18:00.001-06:00

Bill for breakfast, or maybe with breakfast. State of the economy discussed from as many points of view as possible, the decision was that it was a real roulette, very difficult to see how it will all pan out.
Discussion about the Arab spring beginning to look more and more like a Faschist Islamist spring,the old secular dictators may look benign in comparison.
Ah well a third world war will cure the economy and pit the west against the east and everybody can throw their weapons of mass destruction at each other; maybe the Mayans knew about this?
I was shocked to discover that our grandson James has heard about the idea that the world will end in 2012, based on Mayan calendar stopping at 2012; he actually seemed quite scared so I think we will have to look at this carefully and explain that it is not based on any real logic or scientific reason.
I am feeling absolutely incredibly virtuos, I have finally hemmed three of our four golden velvet curtains they were merely pinned before, for about two years,quite awful lack of house pride, the last one not even pinned so I will do that tomorrow.
I cleaned our few bits of silver yesterday, the prednisone is not only helping the muscles but it seems to have unlocked the crippling lethargy.
Bill was consulted today about building a wall, one of the rooms upstairs is very long and it looks as if we will be having a new tenant (Darcy's daughter Meghan) for a while, so it makes sense to divide that room so each of the family can have their own bedroom.
So this afternoon we began to make a new area in the "vestibule" or "mud-room" for James' toys.
Quite possibly Nanny will prune some stuff that seems to be little used. Typical kid I had thought "oh he doesn't play with the pirate ship anymore" and on Thursday the pirATE SHIP WAS BROUGHT oh damn caps, downstairs.
Much entertainment today as a heavy sloppy slippery snowfall turned our frontage into a serious challenge. Our street ends at the street called Rover which is also the dike so to get up onto the road that runs along the dike it is approached by a short steep grade.Our house is right on the corner of Grove and Rover. This little hill is fabulous for kids to play on but it becomes very difficult to navigate in icy weather. We had one big truck that couldn't make it,it ended up heading back towards our fence and ultimately porch. A front end loader came to pull it up, but lost control and slipped down the other side of the dike , which of course is the river bank. Many men and much pondering, then a bob-cat arrived and pulled the truck up before it joined us for breakfast; however the front end loader was seen tearing up the river bank as rather a like mad cockroach it charged the incline again and again.It evetually did make it up and out but left a big mess, very chewed up river bank.
Our Winnipeg Blue Bombers have just lost the Grey Cup, I can't get excited they are just paid players,not Manitobans. I hope our fans behave respectably in Vancouver and don't disgrace themselves.

The UP and the RRR

2011-11-26T17:15:00.001-06:00

Prednisone is helping.
Today, I did the whole track on the treadmill a full quarter of a mile at the amazing speed of 1.1 miles per hour, took over 13 minutes. Did the arm weight machines, there is one that even if I put it on NO weights I can't lift, shoulder muscles are shot which is why combing my hair is hard work! May try the rasta look?
Did I mention being the proud owner of a KOBO,well we had books loaded on Sel's computer to read down in Cuba; however by the time we arrived we had forgotten how to download them on to our Koboes, (do you add an "e" or not)?
So Sel read his books off the Notebook and I dove into literature. The KOBO comes with about 100 books loaded. Sometimes things happen and they are really quite good. I read two Tolstoys, two Dostoyeskys, two Dickens,the Arabian Nights Tales, and a motley selection of children's books like Alice in Wonderland and Little Women.
It was interesting to be reading books about Russians (even tho dated) while we were meeting quite a few Russians at the hotel; meeting is not accurate, seeing is more like it.
I discovered that the Russians and German tourists have a very different comfort zone about staring than Brits or Canadians.
I grant you an old lady with a walker and a stiff face might require a quick second look, but my Mom would have severely clouted me about the head had I ever dared to stare so long at a handicapped person. I tried smiling but that didn't work so I just got used to being stared at.
We discovered that many Russians stayed up drinking much of the night,very melancholy but they are very poor tippers according to the bar staff. French Canadians are way more fun and tip better.
Sel has an article printed in the Wpg. Free Press; we both agreed that "our party" was veering very far to the right and that some criticism was needed. Since neither of us have to rely upon a wage, we can take the chance that Harper's ROYAL REFORM REGIME or the UP (Undemocratic Party) formerly know as the NDP, will not cut our pensions and render us indigent.
Found out nobody can get spell check to work on this blog site, so rather sorry you will have to bear with my unorthodox spelling.

A day of medical procedures

2011-11-24T19:57:00.000-06:00

It started with our son Riel Dylan being dropped off by his wife Jackie to get a kidney stone broken up by a laser.
While we were away about three or four weeks ago Dylan had in one miserable week passed 19 kidney stones, but one stubbornly remained,a 5mm stone which today was blasted. In total he is now up over 120 stones passed.He has had to have an awful lot of morphine and x-rays and CT scans. The specialist is seriously concerned about the amount of radiation he has received; this time Dyl also felt withdrawal from morphine as he came off it after passing the 19 stones.
Recently Sel was found to have some kidney stones that seem to be content just sitting in his kidneys, then in a recent urine analysis that I had it mentioned that calcium oxylate crystals were found, so it looks as if two genes found each other and turned our poor son into a stone factory.
Daughter in law, Jackie is also looking at new hearing aids, which we hope will give her more sound, they also can have other functions added like an attachment that could help her hear the door bell; right now she sees the door-bell when the dogs start jumping about like lunatics.
I finished off the day with an echocardiagram; it was a bit like the recent modelling moments but without bones.It was awesome to watch my own heart beating, all kinds of measurements were taken, sound effects by doppler, OK I don't understand it either but really rather cool whooshing noises. The clean up is messy as my chest, stomach and neck were covered in something very like KY jelly so the probe thingy would move around smoothly.
Having the myositis made the procedure a bit scary as turning over in bed has been very hard for me, and today I was on a very narrow "table"and having to rabbit about to change position could have led to falling off and disgracing myself totally.
No report until all the info is emailed to the person who reads the results at the hospital where the scleroderma clinic is.
Roxy has grown quite a bit since we left for Cuba, she appears to be mostly black lab, but she could have a little German Shepherd too, back then she could just squiggle thru the cat hole in our wall, now she can not get thru, so the clever little thing decides to attack the dry wall and widen the exit,how fortunate that scleroderma has completely cured me of being anything close to house-proud.
Being tee-total now has led to much better spelling in the blog, which is good particularly as I can not figure out how the spell check thing works on the new and improved blog.
I still do plan to download some photos from Cuba, but life just keeps getting in the way.

Really back again

2011-11-23T17:15:00.000-06:00

Daughter was here for a weekend plus, really great talked about so much, family, the world and art.
She arrived with a rubbermaid tote of bones.
I thought my modelling days were over but apparently not as I was featured with bones. Alas the body was not quite up to all the desired poses but we managed a simpler version.
Today back at the gym for the first time since the spring; 11 minutes on the treadmill at 1 mile an hor, it felt like wading thru thick molasses. I have on top of the diffuse Scleroderma, Raynauds and Sjogrens,a muscle problem called myositis; it really seems as if my immune system is stark raving mad and attacking every possible bit of me!
Now taking prednisone that helps quite a bit.I can walk indoors without the walker, I still get tired quickly but it is better.
Out for supper last night, the occasion Sel's sister's 74th birthday, we ate excellent ribs and then went on to listen to jazz, also excellent.
We are "working" on going out more and having a bit more fun!
Saw one of my trusty followers at supper but was whisked to the table by sisters in law who didn't want to have me drop in my tracks.
As well as the prednisone I am getting a shot of Methotrexate in the buttocks once a week, Sel did it well last time. Methotrexate is hard on the liver so I decided to stop drinking alcohol while I was on it, this was much easier than I imagined I just drink water now; low in calories and very cheap!

Back in Canada

2011-11-16T23:17:00.000-06:00

Well the notorious Cuban hacker is back, I have been under grave suspicion as I tried to access my email and Facebook, so I didn't even attempt the blog as the internet is horribly slow, the USA won't allow Cuba to use their satellites so it has to go to Europe and back.
Cuba was fantastic, the prednisone is helping the myositis and I am getting a shot of methotrexate in the butt once a week, and it seems I tolerate it well and there is some skin softening....I will write a longer piece, but for now have to do loads of laundry. Amazing reception from dogs, cats well they have to forgive you first, but the oldest cat sat on my chest this morning and purred loudly for half an hour!

Cuba

2011-10-14T15:32:00.000-05:00

Well we are almost packed and doing house cleaning for the dog sitter, ones own mess never seems as unpleasant as somebody elses.

The Powerline is going to Cuba with us by internet. The phone calls forwarded to the other Powerline.

I may be able to blog down at the hotel but possibly not, so if I go very silent for a while that will be the reason. back to Canada on Nov.15th.

I am on Prednisone now twice a day to try and help muscle problems, only side effect a bit hyper and couldn't get to sleep.

Had all day session at the dental school emergency root canal with a post, maybe a crown when I come back to Canada.

Second daughter in town today, going out for supper with her.

The Model

2011-10-13T22:22:00.000-05:00

MY NOT SO SECRET LIFE AS AN ARTIST’S MODEL……….
It all started when my daughter was about four years old. One day Teresa brought me a drawing of faces on a piece of paper, they were very different. I asked her who the person was; she replied “it’s you Mommy, when you are sad, happy, mad and looking pretty”. It was not hard to figure out which one was the mad one as I appeared rather similar to a rabid werewolf.
The same day I decided if she wanted it I would make sure she was able to go into Fine Arts, it was also the first time I was her model. During her teens my daughter used her own body on occasion setting the timer or getting me to shoot after she had set the scene; these were the days before digital cameras; she wanted this particular set of photos fast so we drove over to a “One Hour “ processing place, it was very cool you could watch you photos being processed; Teresa’s little brother was fascinated by the process and stood watching, we noticed a small crowd gathering, and there was the little brother informing them all, “Look here she comes again, yes that’s my sister naked, but it’s OK she is an artist.” During her years in Fine Arts she had many professional models and we were all able to keep our clothes on.
After university Teresa took a job in Thompson, she found a husband up there, who was also wedded to the north. This meant her artistic career would have to blossom in a remote mining town with little appreciation for the arts. Teresa had brought her sister up to Thompson for a job, she too married, and her husband was a miner and therefore tied to the north.
As grand children arrived, my husband and I went to visit the families; there was a price to pay for the visits. Teresa had discovered that finding females who would pose naked for her just were completely unavailable in a small town. So I became her model for many years, Grandchildren were sent to watch a Disney movie with snacks, while “nanny got naked” and the photography session would begin.
Sometimes the grandchildren came to visit us, at that time we were living in a very tiny farmhouse in the old village of Netley. On one occasion we experienced a couple of days of almost tropical downpour which resulted in very shallow little ponds, the kids headed out at first somewhat dressed but boots and clothes were thrown aside, naturally out came the camera, some really lovely shots of the tiny water sprites came from that, However when drama and blame is needed especially during the teen age years, we were reminded that their lives had been warped by this horrendous experience.
One summer Teresa decided she needed nudes in a water setting; obviously this could not be done at the beaches around town, but the mine’s tailing ponds were very secluded, we figured whatever chemicals there might be would do us no harm in a quick dip. Teresa and I put on easily removable shifts and Grandpa drove the truck. All was fine Teresa photographing me, and I taking pictures of her, Grandpa was roped in for double shots of two water nymphs sporting, As Grandpa had us nicely posed we heard an engine and a truck hove in to view. It was the security patrol and of course we were trespassing.
Trying to pull our shifts back on over very wet bodies and jumping back into our truck at the same time must have been a hilarious sight, we made our getaway and as far as we knew nobody had recognised Teresa. Naturally our son in laws would have been mortified if we had been apprehended.
Teresa is an artist who has never had an official studio, well maybe she does but it is the entire family home. The light in the kitchen was good so the kitchen wall became her favourite painting spot, the children were incredibly good as right behind their stools at the kitchen table large paintings took shape in oils, many times they ate breakfast, lunch and supper with’” Naked Nanny” behind them.
Our photography sessions became enhanced with gold or green lighting black sheets were pinned on the walls and spread on the table to make a sort of seamless background; the kids were warned to stay away and of course the older they became the idea of seeing this in real time was totally unacceptable to them.
In order to save time in the shoots we would both get naked so that we could switch between model and photographer quickly, so I would be pose on the kitchen table with or without props and Teresa trying to get distance would climb up onto the kitchen counter, there she would squat; my daughter is to say the least voluptuous and it was a very intimate pose.
One of the hazards of using your kitchen as a studio were the “cheerios”. Most of the kids ate this breakfast cereal and post photography sessions we often found our butts decorated with the odd cheerio, pressed into the flesh.
Sometimes special poses were required, poses that were not possible for the 60 year old body, in one I had to pose into a corner in a semi squat, my legs would not support this pose so it was agreed that we needed something to raise my behind to the required height, after trial and error it was decided the yellow colander was the exactly correct height. I am not sure that the kids ever found out about this it might have meant that spaghetti would not have been eaten ever again
Things became much easier when Sel and I moved to Thompson as now I had walls and my furniture could be moved so that the light could flood in our bay window for good shots, fortunately most of the neighbours worked and we hoped the others were short sighted.
Operations offered interesting shots and while recovering from the removal of half my thyroid, the gruesome line of staples around my neck with a bunch of overblown peonies is one my favourites.
Teresa and I have a great love of ravens, sadly the beautiful birds do get hit on the highway and once you have proved you didn’t kill them and that no other educational group want the cadaver, you may take your dead raven home. Naturally a dead raven and a naked woman are just made for one another, the raven would be kept bagged in the freezer between shoots; however after several sessions with the temperature changes, I was posed with the raven its wings across my face, when suddenly the dead raven “vomited” all down my naked self, quite an interesting experience.
One very cold fall day with a sprinkle of snow, my daughter arrives with a fish, she was quite delighted with its colours and textures, I began to guess this was not supper. NO it had to be an outside shot and of course I had to be naked, I was told that since it was cold I could keep my pants on; all we needed was my breasts.
Perhaps the deep boreal forest shots were the most challenging with top hats, veils, dead ravens and very live angry ravens commenting loudly about the atrocity they were witnessing. Teresa and I were both slathered in anti mosquito oil and yes I was naked, there are shots of me talking to a dead raven, with raven feathers on my head, or in another wearing several top hats.
And after the photo shoots were completed and the cheerios removed, the paintings followed usually very large and as my darling daughter is a realist, I was portrayed quite accurately. Once completed the works of art were shown in exhibitions. One such exhibition took place in a tiny little town called Snow Lake, my daughter wanted my company to go to the show, I queried what I should wear was it a dress-up occasion or casual, she said sort of in the middle.
Off we went in a bus; just about everybody in Snow Lake must have showed up. In the foyer I noticed people looking at me quite hard sort of as if they thought they knew me.
We went into the exhibition room where I discovered hung three very large oil paintings of me naked. I have no idea why I bothered to wear clothes at all, except Snow Lake in fall is very cool.
Another very cold day my daughter needed to take a photo of one of her large paintings, there was thick snow on the ground. I noticed her dragging the painting out, this was a large nude of me under green light, I used to call it “the jolly green grandma”. Once the painting was set up in front of the house. The camera angle correct, what should come around the corner but the recycling truck with all the guys who worked on it. Since my husband was on the Recycling board I knew them all well, but not that well. There was one red faced Nanny along side the green one.
During some of this time I was also painting and we have on occasions used the same photo of one another but painted in different scenes. What about the sister, my other daughter, she was never a model? No, she was not and explained that she had boundaries as if this made her superior to artist and model that were clearly exhibitionist freaks. But if truth be known she is in one or two pictures, but under the black sheets holding aloft antlers over her clothed daughter’s head and in fact delightful irony, she is under the sheets in a photograph now hanging in the Winnipeg Art Gallery.
At my wake, I would like to have one of the funniest shots shown; I think it is time for the kids to know the truth about the colander.

2011-10-11T23:16:00.000-05:00

Oh whatta day, first off recall for mammogram, so I disrobe and put on the gown "Open to the front please." Done. I do the boob presses with special little cup thingys that depresses them to very skinny OW OW OW!
The I sit almost naked in a small cubicle which increasingly seems for a very long cold time People come and go and I think what the fuck is wrong. Finally I am told you can leave. Great. My breasts are full of scars from biopsies and a breast reduction DD down to B, Scleroderma loves scars you should see some of the cat bites and tin can slices on my fingers now, pretty impressive.
hOME WE GO GRAB A BITE TO EAT AND OFF TO SEE dR. __-- oh I hate accidental caps lock. anyway my second visit with the new sclero specialist was pretty much awesome, I am feeling sorry for his student who had to deal with a reticent Brit and he the specialist is charmingly apologetic.
Anyway he spent about an hour with us. He really was good and did not seem rushed altho I am feeling horribly greedy gobbling up public money.
After all was said and done I really think we understood each other . The muscle problems - myopathy was my major problem as that was going downhill at a gallop.
So we are going to use prednisone, we talked about why methotrexate would not be good, the lung thing, and other drugs that might be better. He said when I come back we would talk about it. I like him and I think he is seriously committed to scleroderma, besides he like his patients a bit fat!
We came home to discover our three pieces of chicken for supper and some vegatables had gone missing and we have NO idea who ate them. Damn weird! So we ate chocolate cake instead.
I have started packing but it is hard to believe how warm it will be, especially as I am almost never hot !
Then there were all the machinations of the board I am on but trying to leave, it feels like a mentally challenged child I am abandoning.
I had the most awful nightmares last night ,I was so damned scared of going to sleep I was doing math or anything that might keep me awake, it worked and I feel asleep after with no nasty returns.
I have ridden a night-mare since I was a little girl.The pills help but sometimes they don't and the old mare takes me for another terrifying ride.

More Pictures

2011-10-08T17:08:00.000-05:00

This is the backyard, we still have flowers in October it is quite amazing.

Now it is working again, this is the second oldest dog about 12 we guess, a starving stray from Mexico, he's a roly-poly boy now, named Gabriel Whitesocks.

This is a fort of autumn leaves being built by James and Zack, under the table on the deck.

It was great the boys wanted to rake up leaves to fill the bags to make the fort, we couldn't miss an oppurtunity like that!

Pictures

2011-10-08T16:46:00.003-05:00

Now it says I can write between pictures and upload another after the writing, so lets see, this one is the front of our house after being painted yellow with aubergine trim.

I think this works, this is our oldest dog Aussie, he is about 14 and a three quarters, deaf as a post but still having fun
Well it did work now I am fighting to upload another picture,but it does not seem to want to do that.So I will post this and try a different posting after.Itried that but it seems to think that's it for pictures today.
I have written the dreaded minutes and done a short article for the Powerline then I wrote a description of the life of an artisit model, I'll probaly post that when I am satisfied with it.

AWARD and recalls

2011-10-05T20:49:00.000-05:00

I have so much to write, the minutes for the seniors group, that are long and rambling, since we are all over 65 on the board I only hope the others have lost as much grey matter as I have and can't remember what we said!
I wrote to my specialist in Cuba.
But I had an email from my new specialist here, following the "second" letter I wrote, the nicer one. He wants to do more blood tests and see me before I go to Cuba.
Did I mention the mammogram I had, rather ouchy? and damn the right breast needs another more in depth look, before I go to Cuba, this is interesting as the wife of the specialist in Cuba is a breast specialist??
So the 11th of October is retests ,the 12th of October is dentist all day, packing in there somewhere.
OOOOh I forgot to mention the "essay" diary of an artist's model that has to be written before I return to Canada, needed for a course my beloved elder daughter is taking.
I have to make myself write the boring old minutes first because the diary of an artists model is hilarious without committing too much hyperbole.
Roxy is doing fabulously well with the toilet training, knows how to sit we are working on "COME".
I have been dreadfully remiss in reading every body elses blogs. Today is a weather record. here in Winnipeg we shit 31C, the highest temperature ever recorded for Oct. 5th, and I didn't get Raynauds once today...BRILLIANT!
Tomorrow we go to the Mayor's office for an award for one of the most successfully accessible buildings of this year our Barber House, and this year I really understand the problems the physically handicapped have.

Nuit Blanche

2011-10-03T22:15:00.001-05:00

If I was a really good person, which sadly I am becoming aware I am not,I would be writing the minutes from a meeting we had last week and if I don't do it soon, I am going to forget what the heck we all said.
And if I was a person with a functioning memory I would have realised I had already written an almost identical post before this!
A wonderful weekend we had.Our daughter Teresa and her husband Blair came down for the Nuit Blanche or White Night, which is a sort of "Open House " for many of the artistic endeavours of Winnipeg.
It really was exciting going to this arty night with the child who I decided when she was four had artistic potential.
The whole show was amazing such a wild assortment of people, a woman who with a welding torch who turned shovels and wheelbarrows into lace, even big old oil tanks had elegant lace worked into their bodies.
Another video of pots and other "layovers" that were completely captivating.
It was great as usual to have our daughter and her husband here, Teresa and I talked a lot as usual too!!
It is quite weird to see your artist/child's work shown in a serious public gallery. The Nuit Blanche is super well attended as all "cultural" things are free.
Our pussy cat Robertson, with crystals in his urine is not doing so well , so we are going to have to get him help before we leave.
Very sad about the Canadian Nobel winner who died a few days before the award, but his work may help many others.
Still trying to chase my medical reports,who imagined this could be difficult?

Nuit Blanche

2011-10-02T21:16:00.000-05:00

Here we go again, for better or worse the most recent letter to my doctor was sent.
Our daughter and her husband Blair came down on Friday evening, Teresa's show had already opened at the Winnipeg Art Gallery; but it was Nuit Blanche (White Night)when most of the Arts related places sort of have an open house with no fees to visit.
It was an amazingly exciting moment to see my little girl's work on display in the provincial gallery amongst a fine calibre of artists.
I announced to myself when she was 4 years old, this child will be an artist.
My second child was also an artist but not in the art galleries, but in her ability to deal with people. It doesn't sound right but she is almost a con artist, she is tremendous at reaching people and seeing their problems in concrete terms they could relate to!
Teresa and her husband Blair came down and we all went off to the Art Gallery for the night of frolic.
The exhibition she was in with four other artists was absolutely awesome, the intracy of all the artists in pursuit of their craft/art was absolutely brilliant.
One woman takes mundane metal objects, a wheel barrow, spades/shovels and turns them into beautiful filigreed works of art, even oil tanks become so pretty it is hard to believe her ability and vision.
There were incredible tapestries, pots and a video that entranced me also from the pot maker.
My son has pink hair and his wife has vivid red hair, it's part fun and part awareness of breast cancer. There is a whole block of Main Street with multi coloured bras slung between power poles also to draw attention to breast cancer.
It is strange ,but not really when you think about our species , but I find myself getting a little bit cranky when I hear so much about breast cancer which is a horrid disease, but I get so tired of the blank stares when I mention my disease, scleroderma.
Time to do a bit of PR for it when we get back from Cuba.
We are having the most amazing weather , we still have not had a killing frost and the garden while somewhat overblown is still pretty, I am going to have to instruct Sel in plant division next spring as we really need to make more space where things have grown very enthusiastically.
Roxy is over at Dylan and Jackie's for the weeekend , but is back tomorrow, she is showing very good understanding of bathroom issues , but alas feels a need to decorate table and chairs with a little carving, this done with puppy teeth.
We had three families move off the street this weekend,we will miss some and others not so much!
Started making lists of stuff to take to Cuba, still chasing my test results, Sel will wade in tomorrow.

Hey Farmdoc, I don't know how this happened but I keep finding stuff that relate to your former blog popping up on my pages. I have no idea how this happens, it's not a problem but sort of odd!?

Re-write

2011-09-29T14:12:00.000-05:00

I still hadn't sent my letter to my new specialist and I am glad; as today he sent me a copy of a letter he had sent my doctor. It was not exactly the way I imagined the feedback, but at least I feel I am a bit more aware of what is going on with my body.
So I had to rethink my letter, so here I go again.....

Dear Dr. R__________
Thank you for forwarding a copy of the letter you sent to Dr. A_____. I had already checked Google about the crackling in the lungs, so I had figured out this was to do with the probable pulmonary fibrosis
I am very loyal by nature and I found it very difficult to ask my GP if she would transfer me to another specialist, I told her that my biggest problem was not getting any feedback so she transferred me to you.
I recognise that anticipation was part of my problem on August 22nd, I imagined myself being able to ask lots of questions. After you told me it was too late for any disease slowing medication and that we would just deal with my various organs as they are affected and pretty much that was it, I must admit I felt pretty devastated. Your letter to Dr. A_______ came today and it was very helpful to get this feedback.
Presently the muscle weakness is extremely frightening; it is progressing so rapidly, such that my husband is thinking we may need a wheelchair ramp by winter. I can’t carry my cat, or more than 3 dinner plates at a time, doing housework is extremely challenging and I try to vacuum sitting down. I have toilet rails and I have great difficulty turning over in bed. Without doubt the myopathy is the worst problem for me personally now.
I wondered if the blood tests showed whether the myopathy was part of the scleroderma or some kind of myositis? Also I am not sure if I should push myself to do more or take it easy. I definitely feel stronger after resting, but sadly not for long.
I will look forward to seeing you in December. I will be visiting Cuba from Oct. 15th to Nov. 15th, there is quite a bit of scleroderma there with a large Afro-Cuban population.
I am sure you know about this already, I found this on www.sclerodermatt.org a drug used to treat cancer may also be effective in diseases that cause scarring of the internal organs or skin, such as pulmonary fibrosis or Scleroderma.
The drug, with the generic name bortezomib, stopped the production of fibrotic proteins in human cells and the development of fibrous scarring in a mouse model of fibrotic disease, according to a new Northwestern Medicine study published in the journal Thorax.

Should you need a “guinea-pig” I checked the side effects and I had to laugh as I seem to have most of them already!
Sincerely
Chris Burrows
Email: chrows25@yahoo.com

Not Peter Pan or Joan of Arc.,

2011-09-28T21:14:00.000-05:00

Jamie is sleeping over tonight as his cough and tonsilitis seem to be better, but still making him a bit miserable. So he and Roxy will sleep over which also works for us as we don't have to wake up so early to get him to school. We will get out clean clothes, the child has clothes in 3 places, his Mom's house and also at his Dad's house, finally at our house. It means he really has to be flexible and can't throw a fit about what he wants to wear!
Fall is here and the dogs are slowing on the moulting which is fantastic. I am sort of getting into a "housework" routine. use the vacuum until legs feel like melting, then sit on old bar-stool to do dishes , try not to drop heavy slippery things, then back to more vacuuming.
I swear there is hardly likely to be a more exciting blog than this!
If extra terrestial powers spoke to me or even guided me, I would be so much more exciting, my life has been interesting,even challenging but I am so grounded in reality it is scary.
I did have fabulous flying dreams as a kid, but was again hopelessly grounded on waking up!

The tooth and the truth

2011-09-27T21:35:00.000-05:00

I still haven't sent my letter to the specialist, I think it needs a more positive finish, after the chopped liver bit!
I received a message from a woman who had been reading my blog, which always comes as surprise to me as there are days I find my life and blog rather boring.
The funniest part was I went to her profile page and there were the blogs she was following, her first blog was about a guy called Jack, who I followed for a while, but gave up on as he so rarely posted. His blog was about voluntary simplicity which is a lifestyle I greatly admire.
Good grief the dentist again today. A root canal on a small front tooth that has been filled many times but was hurting.4/1 is the tooth to be exact.
The thing was to remove the nerve, so my student removed a fair amount of tooth and fillings, but the channel for the nerve could not be found, we could see it on the X-ray but the prof could not find it, finally this enormous microscope was brought in, they were looking into my tooth to try and find the orifice of the canal. I think too many fillings have blocked the canal. So back again next week starting with the microscope to try and find the nerve.
Everybody apologising to every body else,but student lovely and prof deplorably handsome and not surprisingly married!
Sel was interviewed by the Globe and Mail today and a very good article has emerged about crime in our area and the rest of the North End. I will see if I can find the url for it.
OK here it is:

In Point Douglas, fighting crime is everyone’s business
www.theglobeandmail.com

Yesterday I was checking the prices of mobility scooters, really quite inexpensive second hand; I watched a guy riding around on one in the parking lot at the Super Store,he was having fun and it sort of changed my thinking to a more positive attitude.

A letter.

2011-09-25T20:23:00.000-05:00

I think most of you know I was pretty disappointed by my visit to the second specialist, it has been preying on my mind. Finally I decided I needed to say my piece, so I spent most of the afternoon writing/rewriting my letter.

DOB: 07 Aug 1940
Winnipeg, MB
R2W 3K7
Hi Dr. R___________,
August the 22nd was a fairly ordinary summer day, but foolishly it had become a super special day for me.
I had been waiting for this day almost as eagerly as a kid anticipates their birthday; I was to see my new Rheumatology specialist.
August 22nd was the day I was to see you.
I had been seeing my previous specialist since 1998. In 2009 I was diagnosed with scleroderma. Prior to being diagnosed I was scouring the internet and was pretty sure I had scleroderma. He was a man of very few words which I found extremely frustrating. Afterwards I continued to learn as much as possible about the disease.
At my last appointment with my first specialist, he was about to let me go when I said “I think it is time for me to have a lung function test”, he asked if I was having difficulty with my breathing; I replied that I was; so he set up a test for me.
I am very loyal by nature and I found it very difficult to ask my GP if she would transfer me to another specialist, I told her that my biggest problem was not getting any feedback so she transferred me to you.
On August 22nd, I visited the clinic. I was interviewed by a very pleasant young man, who I assume was a student; he asked me many questions prompted by his little book. You came into the room and we exchanged pleasantries. You then attended to your student, both of you listening to my chest. You asked him if he could hear “the crackling”, he could. You showed him something on my eyelids also. You did not discuss the crackling in my lungs with me.
After that you told me it was too late for any disease slowing medication and that we would just deal with my various organs as they screw up and pretty much that was it. I left. No instructions or suggestions, no opportunity for me to ask questions regarding my lack of muscle strength or whether I should exercise or rest.
It took me five minutes on Google as soon as I was at home to find “crackling” was to be heard in pulmonary fibrosis. I learned from the occupational therapist who called the next day that I was diagnosed with severe scleroderma and myopathy. Do we know the cause of the myopathy? Is it just part of my scleroderma or is it one of the myositis groups of disease? Should I try to exercise, recommended in some types of myopathy, but not recommended in some myositis problems?
Presently the myopathy is extremely frightening; it is progressing so rapidly, such that my husband is thinking we may need a wheelchair ramp by winter.
I recognise that my anticipation was part of the problem on August 22nd, imagining myself being able to ask questions, I further recognise hearing my scleroderma was past the point of disease slowing medications shocked me so much that I was unable to ask questions.
I think you were really great with your student, but I did end up feeling like so much chopped liver.
Sincerely
Chris Burrows
Tel # 204-956-4090
Email : chrows25@yahoo.com
**************************************************
But some good news....maybe sign me up for this one?

A drug used to treat cancer may also be effective in diseases that cause scarring of the internal organs or skin, such as pulmonary fibrosis or Scleroderma.

The drug, with the generic name bortezomib, stopped the production of fibrotic proteins in human cells and the development of fibrous scarring in a mouse model of fibrotic disease, according to a new Northwestern Medicine study published in the journal Thorax.

Rough day

2011-09-23T20:24:00.000-05:00

I am not going to write much today, I came as close the end of my tether as I like to be.
It is unbelievebly bizarre to get weaker everyday and not know how to slow the process or be able to find a doctor who seems to care.
I came really close to losing it completely today, wanted to cry but it just won't happen. Don't understand that, Sel declared that we had to sit down and have a glass of wine, then we had a fine entertainment when big fire pumper truck stopped at our hydrant and went into practice. Son called terrified we were on fire.
His house was painted on two sides today looks lovely, maybe the other two sides next year.
OK off to read, lunch with friend tomorrow and symphony, should calm my savage breast.
Yes DB, farmdoc's property is awesome, but a lot of work so probably good to move on sad as that may be to preserve health.

Awesome Buy!

2011-09-21T20:58:00.000-05:00

So a bit cheerier today, fighting back.
Despite emergency attendance at the Dental College because one of my front teeth 4.1 to be exact seems to be infected, so anti-biotics for a week and then a root canal. Oh lucky me!
There are two houses for sale on our street and the prices are much higher than when we first bought here, which is good for the neighbourhood, but not so good for the people who would like to take chance on a great neighbourhood.
The lab /mermaid only had one accident today which is great progress.
The sculptures we bought in Altona arrived today. One is going to be inside and the other outside.
Jackie our daughter in law was taking pictures of houses for sale in the 'hood, she has friends who are looking for an affordable place , it would be so awesome for her if she had deaf friends in the neighbourhood.
Vanity? I hope the root canal is done before I go to Cuba!
Saw the feral kids dealing drugs as we drove to dental hospital, they gave us the finger, but were not there half an hour later!
I found Farmdoc's new blog for the property he is selling in Tasmania, it is truly awesome.If you go to "see my profile " you can find the new blog , it is called "one mile bridge". WOW it is absolutely fantastic. Check it out DB, it is beautiful.
Hey Farmdoc, I don't know how it happened but I have a huge lists of your blogs that have turned up on my blog, NOT a problem , but I have no idea how that happened!!

Shoddy Blogger

2011-09-19T20:24:00.000-05:00

I am becoming a very shoddy blogger. Sadly I am not sure what I am doing that seems to keep me from the blog. I think I am really trying to cut the time I take on the computer each day; I am trying to push myself to do more housework.
Of course everything I do seems to take more time too.
Today I socialised alone, well with a friend (I meant without Sel), we went out together for a late lunch. We worked in the same school, she was the secretary, actually she darn near ran the school. Strangely when I taught I usually felt more kinship with the "support staff" teachers assistants, janitors, office staff. I rarely found other teachers that were interesting or fun.
Bernice and I went to a local diner,
We had the place to ourselves, until some kids came in after school, it really is furnished in chrome and arborite, you expect to see girls with pony tails and felt circular skirts, in 1955 I had both!
The puppy has a huge affinity for water, first she went for a paddle in the toilet, the seat had been left up. Then I heard merry splashing in the kitchen and there she was doing the crawl in the dog water bowl and she had created a mini-tsunami which was approaching the fridge, drop a marble anywhere in this house and you can find out where stuff like water will roll!
So I mopped up a large amount of water, which she thought was terrific fun biting the mop as it worked.
Later this evening she suddenly dragged in the mop and dropped by a puddle she had left, bathroom training not 100% yet. But I am still trying to decide if bringing the mop was coincidental to piddling or if she felt this was the way to deal with a little accident?
Before writing here I did a bit of sleuthing on Google,DEPRESSING, myopathy that's the weakened muscles with my diffuse scleroderma is considered high probability of poor prognosis, this combined with tendon rubs, (got those),appear to be very bad news.
Oh well,I figure I have had my 3 score years and ten, the rest is gravy!
Sel gets very depressed about this I try to hide it from him, but he read over my shoulder this evening, my Mom always said that was a very bad thing to do.
Actually dying is the easy bit,being alone suddenly after a great marriage and friendship is horrible.

ART Tour

2011-09-13T21:38:00.000-05:00

Dentist again today, I saw the mouth pictures...not pretty, I asked her not to post them on Facebook, and the guy that took the photos told me he already had done it! He lies, but it is fun to be around students.
The now affixed toilet rails are a resounding success, the vanity is safe, but I am looking at the space between the rails and I am thinking of some of the generous bottoms I know and wondering how this will work?
I have ordered an angled fork and spoon and a thing that helps you put your socks on; my goodness this sclero is just one fun thing after another.
SATURDAY was a great day, Sel and I had been invited to drive south into rural Manitoba and attend an artists' tour with Sel's sister Meryth and her husband Dave.
First we went to a rock garden, but not the dainty ones in an English garden, but real great big rocks. The guy using rocks has built pathways and bridges of slabs of rock, he mixes great big tree trunks with them and he also works some stones to turn them into small pools of water or others into bird baths, he also makes table tops by polishing the cut surfaces, he has great benches he has hewn out of one solid rock,it is amazing work.
Like many artists he loves to talk about his work, but is the worst salesman, he just does not want to talk about prices, which I think frustrates his wife somewhat.
WE kept liking some of the unworked stones most which were not for sale.
It was rather hard going with Sid my walker as the ground was pretty uneven but with Sel dragging and lifting and me pushing, we made it all the way round.
We decided to break for lunch and Dave wanted to take us to an African restaurant, we thought this a great idea, but then memory dims so we spent a while looking till we met two ladies in motorised wheelchairs who told us where it was. It turned out to be an East Indian Restaurant, but only once a month, the rest of time burgers, soup and sandwiches. The guy was most interesting from Mumbai, told us about languages in India and how each state has its own language but Hindi and English were the two official languages. He told us that in Canada his wife is the boss, but back in India he assumes that role. He has factories in India and goes back four months out of the year to check on them.
There were many artists having shows from their own studios/homes. We wanted to see a guy who made metal sculptures out of found metal objects, he recycles metal stuff he finds at scrap yards in to art. Two appealed to us so we bought them and he will deliver them this week.
After that we went to the Altona sculpture park. It is brilliant, the lay-out is reminiscent of the park in Versailles in France, there are about 15 -20 sculptures and room for many more. It has a great deal of investment from wealthy people in the area.
Blogger has a new and supposedly better way to blog. I much prefer the editing font, but I can't get the spell check to work or the preview, so I am not sure how improved this is!
AH! I got the preview to work, but the spelling check either thinks my spelling is great or doesn't work.

OOOWWWW!

2011-09-12T21:42:00.000-05:00

I was going to write , but I suddenly have a really vicious headache. I bought my toilet rails and I have found where I can order angled cutlery. Right now I would trade my head for a pumpkin so maybe tomorrow?
I did have agreat day on Saturday which I will write about.

The review of Teresa's art

2011-09-11T21:30:00.003-05:00

Murder incorporated

WAG craft exhibition features Manitoba artist whose controversial work upset families of missing, slain women

By: Alison Mayes
Precise: Craft Refined
■Winnipeg Art Gallery, to Jan. 15

The Winnipeg Art Gallery is about to show a work from the same series by a Thompson artist that recently provoked controversy for depicting missing or murdered Manitoba women.

Some family members of missing or murdered women were upset that Winnipeg's Mennonite Heritage Centre Gallery displayed a work from Teresa Burrows' recent series the blue beaver's burden and the disappearance of the shaking tent sisters as part of a juried fine-craft exhibition that ran from June 23 to Aug. 27.

The controversy erupted in the final few days of the exhibition. Burrows' piece included intricate glass beadwork depictions of three women's faces, apparently based on photographs released by police. The women's families complained the work was disrespectful and threatened a protest.

After a provincial official contacted the MHC Gallery, curator Ray Dirks hid the wall-mounted work with a drape for the final three days -- with Burrows' knowledge -- and offered visitors the opportunity to discuss and view it if they wished, said Alf Redekopp, director of the MHC.

The Manitoba Craft Council, which put on the exhibition, said the action raised concerns about censorship and freedom of artistic expression.

Burrows, an award-winning multimedia artist who integrates beadwork, found textiles, animal traps, furs, beaver skulls, caribou antlers and hooves into her provocative pieces, is the only Manitoban featured in the five-artist show Precise: Craft Refined, which opens today at the WAG and runs to Jan. 15.

Her installation piece from the blue beaver series being shown at the WAG is not the same one shown at the MHC Gallery, but includes images of missing or murdered women, as well as animal traps.

Titled stolen: knave of hearts tarts, it includes what appear to be baked tarts, each with a "stolen" woman's eye beaded on it.

"(The piece) calls on all of us to share the burden of grief and devastation borne by the families and friends of these women," said Helen Delacretaz, chief curator of the WAG and curator of the Precise show. "It is a powerful piece that speaks to sorrow, loss, and our connection to these women."

The piece includes a hinged box, inside which the viewer can see a beaded image of a naked woman.

The families of the lost women have not contacted the WAG. Delacretaz said if they were to object, she would invite them to view and discuss the piece, possibly with the artist. "I would facilitate more discussion about it," she said, adding she was not prepared to say whether the WAG would consider removing it.

Burrows, a University of Manitoba fine arts grad, is a former parole officer and addictions counsellor. She is concerned, Delacretaz said, with issues facing marginalized and at-risk women, including aboriginals. She is not aboriginal herself.

Like the other four Canadians showcased in Precise: Craft Refined, Burrows draws on traditional craft materials and techniques, but takes handwork to innovative, surprising and challenging places, the curator said.

The artists' ideas are complex, she noted, while their skills and time commitment are awe-inspiring.

From veteran fibre artist Jane Kidd's unlikely hand-woven tapestries that address oil spills, disappearing polar ice caps and mining, to Burrows' elaborate ceremonial robes that speak to aboriginal women's power and spirituality, the 36 works expand -- even explode -- the definition of craft in the 21st century.

The public can see the show free of charge during Nuit Blanche, the all-night art celebration from 6 p.m. to 6 a.m. on Oct. 1.

"I've been wanting to work with all these artists for a long time," said Delacretaz. The works are on loan from institutions such as the Art Gallery of Nova Scotia and the Alberta Foundation for the Arts, as well as collectors and the artists themselves.

In this age of digital reproduction and computer-assisted art-making, Delacretaz said she wanted to highlight the creators' painstaking, labour-intensive methods. "For each artist, the involvement of the hand is key."

The most in-demand artist in Precise is Korean-born Kye-Yeon Son, who teaches at the Nova Scotia College of Art and Design. Son is this year's winner of the Saidye Bronfman Award, Canada's highest distinction for excellence in craft media.

She makes delicate-looking vessels out of soldered silver wire. Lacking the solidity to hold material things, they are "receptacles of spirits and memories." Their poetic shapes often echo natural forms, such as hoarfrost or blossoms turning toward the sun.

The show also features wheel-thrown vessels by veteran Calgary ceramic artist Greg Payce and metal pieces by Victoria native Cal Lane, a welder-turned-artist who uses an oxyacetylene cutting torch to create delicate, flowery and doily-like patterns in utilitarian objects such as oil tanks, a wheelbarrow or an old gardening shovel.

"She has made the shovel itself be evocative of the beauty it assists with," Delacretaz said.

alison.mayes@freepress.mb.ca

Dreams and visions

2011-09-11T21:06:00.000-05:00

In the bible , people seemed to have visions on a fairly regular basis. I am not sure of the exact definition of a vision, do you have to be awake or can you have them in your sleep.
Actually the way I found Sel was thru a vision, it was way to real for just a dream. Sel and I had dated once but it didn't seem quite right and Sel told me never to kiss him again unless I meant it. Frankly I was stunned, most of the men I had dated couldn't tell or care about the difference.
So we became friends , he baby sat my children who were quite small while I went to typing classes, my children grew to love him, BUT I never learned to type, it was a huge frustration for me. I could see that relatively dumb bunnies could do it and I was worse than hopeless.
Later I took aptitude tests and they waxed amazed at my intelligence quotient...super! but they did test my rapid hand /eye coordination and told me I should never try to be a typist.
Anyway Sel had moved away from Vancouver and was in Winnipeg. One night I had the vision, Sel walked up to me and kissed me, just writing this makes the hair on my arms stand up, it was very pleasant and I suddenly realised that I was probably in love with him.
A number of extraordinary coincidences followed which are beyond easy explanation, but we did get together and it was the best thing that ever happened to me, happily I think for him too.
Anyway last night I had a totally bizarre but super real dream/vision, it was terribly mundane in comparison, right in front of me just floating in the air was an angled spoon I wanted to take hold of it but couldn't and woke up puzzled.
I was eating our intellectual Sunday breakfast with Bill and Sel and as I tried to put scrambled eggs in my mouth, they were spilling all over. I had been chastising myself for becoming a horribly sloppy eater, always spilling things. Suddenly I realised why, I can't bend my wrist to the right angle to put things in my mouth any more.
I just spent on time on Google trying to find a store in Winnipeg where I might buy angled cutlery, very hard to find. I will probably have to order by mail or something, (better than a mail order husband anyway) interesting how one's unconcious mind reaches us in sleep.
I have also come to the conclusion that trying to confine my sclero complaints to one day a week is more or less useless as it is so much a part of my life now, any way I will try to deal with it with as little whining and whingeing as possible.
For example the big excitement after getting Sel to the doctor's office in the morning is buying some toilet rails, second hand of course, another sad hardly used. Better than ripping the sink off the wall!

Dull week

2011-09-09T21:53:00.000-05:00

Good grief last posted on Monday,I am desperately trying to remember what the hell I did all week. My calendar is useless as I don't seem to have much written down, so I guess it was puppy training and an attempt to clean up the house and way too much time fooling around on the computer.
Saw my dental student on Thursday, she had a cancellation so I was able to fill in;her prof really was a bit sharp when he looked in my mouth and said "you need to brush and floss way more". I thought "Fuck you" but I did not say it, then my student pointed out that I had scleroderma and Sjogrens, after that he was very pleasant and helpful, it is a good job I am basically quite quick to forgive or we could have got off to a bad start!
Actually it was hilarious because I had to have some impressions made of my mouth so trying to find a mould that would fit in my mouth was awful, the corners of my mouth are still sore and swollen, finally the prof tried and agreed it was impossible ,so my student had to get a special note to go to the stores and get plastic ones used for kids, they worked just fine, then I had to bite wax to get my bite recorded, then some weird instrument that looked like medieval torture measured the angle of my bite.
Then the funniest bit was photographs of the inside of my mouth had to be taken, using mirrors held in place by my Stephanie, while a recruit was found to take pictures, try not to laugh with mirrors in your mouth and a camera right up against your lips, the two of them were laughing too, but declared them to be excellent, I declined to view them.
However I want you to know that my mouth was presented to the fourth year students as a case study today, what a sense of pride?
I have concluded that if all I can tell you about after a week is my visit to the dentist, my life is becoming a sad affair!
I have a little stick thing that has pincers and I use to pick up stuff I can't reach on the floor, better than the face plants, today I was having so much trouble trying to get my underpants on, then I employed the picker upper to hold the second knicker leg open and what a brilliant thing, it worked. Now I have to see if it will work for socks.
Bill was over today and he did lots of work on carpentry stuff around the outside of the house, Sel was doing some more bits of finishing painting the outside of the house, mostly I was managing the puppy and stripping leaves off the tomatoes, that are wondrous, we have never had a crop like them, we are giving lots away and have tomatoes with everything.
I did waste an hour and a half trying to get back my toolbar today and Dylan dropped in because he phoned as he was coming into town and I begged him to find my Edit button and in maybe two strokes of the keyboard he had it.
Actually I remember I did a fair bit of writing during the week, letters of support and a flyer and reports on our worst streets for the police.
Farmdoc is alive and well selling his sheep farm, but back to good health again. Good news.
Now the silly thing is refusing to publish my post, don't blame it , probably too ashamed of the dullness!

A letter to my friends

2011-09-05T15:17:00.002-05:00

Prior to starting my blog, I used to write a group letter to friends, this is a terribly not British thing to do, Round Robins as they are called in England are rather disdained, blogs may be even worse in Brit eyes so I decided to write a group catch up letter for those who have not read the blog.

GROVE UPDATE: 2011-09-05
Usually I try to make my Grove letters as funny as possible, because almost always I have been able to see the funny side of life, often at the most inappropriate moments. Right now I can actually see a lot of humour in my day to day existence; often it is rather black humour but none the less good for a laugh. I can’t remember when I last wrote a Grove letter. I switched to writing a blog which I find very therapeutic but it does not make for great reading, the minutiae of my life nothing to tweet about.
A quick rundown of the family: one daughter Teresa is dealing with an attack on her art, but she is anticipating a show at the Winnipeg Art Gallery, a new level of her acceptance as an artist. She also is under attack by clothes moths, these are not indigenous to Manitoba, so must have arrived in the true north in a Hudson Bay Blanket she bought on E-bay from the southern USA. Her husband and children feel there is way too much “art stuff” in the house and there is some suspicion of a conspiracy that Blair and the kids may have imported the pests which are eating everything that is fur, skin or natural fibre.
The other daughter Karen is enduring the presence of a “colleague” who appears to hate her job, but likes the salary; consequently she has been moved around to different departments but apparently it is any job that is the problem! Karen finds the parolees far easier and more satisfying to work with! Her husband Barry is approaching the magic number of 30 years worked so he will be eligible for a pension from Inco.
I really want to tell you all about each of the grand-kids but the problem with a Grove letter is that it is usually far too long and if I embark on all my wonderful g’kids it will come close to epic proportions.
Our son Dylan, battles kidney stones on a constant basis and there appears to be no way to prevent them, he is up around100+ passed or busted up inside him, he continues work on the bridges of Manitoba, but is becoming quite familiar with rural hospitals when a stone begins to move. Jackie, Dyl’s wonderful patient wife struggles with his stones, video games and his inclinations to pet hoarding, can’t think where that comes from? There are7cats, 5 dogs and a part time puppy at last census in our home, ridiculous but hugely entertaining.
What of Groveman my fearless crime fighter? Today a neighbour who allegedly deals accused Sel of being a RAT, this is supposed to make us feel really ashamed and scared; so he cheerfully replied “yes he was King Rat and proud of it” Then she accused him of stalking her kids, this apparently because he greets them with a HI or something very intrusive like that and we sit in our porch to drink our coffee, and wine and when her kids have to walk past our house, we apparently watch them!
The life of a crime fighter is quite trying. Generally there is a huge reduction in crime in the area and we have maintained a good mix of people, not the dreaded gentrification yet. We continue to work with the Citizens ON Watch our invisible COWs who call the Powerline when they see criminal activity; we report abandoned junk and the occasional drunk who needs rescuing.
Grove man has added a great deal to his CV, we can now say he is a care giver to a handicapped woman; he is also becoming a great gardener, he has the common weeds figured out so it is only the more obscure weeds that slip past him. His skills as a cook always great are involving lots of veggies.
So who is this handicapped woman? Incredibly me. It is about the worst role I could imagine for myself. From a fiercely independent old woman planning to be cleaning my gutters/eaves troughs in my 80s, this disgusting disease Systemic Sclerosis has made me incredibly dependent, on a par with the kindergarten kids I taught.
I am going to give you a few examples as to how it is destroying my muscles. I can’t carry a cat more than a few steps; if I fall over I can’t get up without help. Dressing is a challenge and takes quite a while, putting on my knickers and socks in the morning a hilarious sight. Walking from my bedroom to the kitchen requires a walker. At the beginning of the summer I could weed sitting in a chair, now that is impossible unless it is a tall weed and then I usually end up pulling the bloody top off which really doesn’t help.
The procedure for a bath is comical, we started with some grab bars which were a great help, then I couldn’t lift my leg high enough so we buy a little set of steps, then I couldn’t stand long enough so we bought a stool to put in the bath. I usually leave the door open so that Sel can hear me if I yell. No bathing allowed if I am home alone.
The toilet is going to have rails soon so I can get off, right now I hang on to the bowl of the vanity, but I worry that I will pull the whole damn thing off the wall, that would be a wild bit of fun as the busted pipes gush everywhere. I have an excellent chair, (a bargain second hand), which has a higher seat and is capable of tipping me off when plugged in, So far no toilet found with this great feature. It is a bit macabre to note that 2nd. hand stuff for the elderly, often advertises “only used 3 times” or even sadder “never used”. I am not allowed to drive anymore, can’t shoulder check and power steering may be not strong enough. The bastard scleroderma is in my lungs I have lost 20% lung function, which is not really bad, nor good.
OK quite enough of this; thank the geeks I have a computer, thank my huge luck (and my great judgement) to have a fantastic husband who so very gently helps me and laughs with me. We have giggled over the fact that this difficulty chose the right players, I am stoic and I can’t believe the level of almost graceful acceptance I manage, well not the knickers putting on that is far from elegant.; my love Groveman however is laid horribly low with a “man-cold”. Any of you who don’t know should be aware that a “man-cold” is a dreadful thing, never endured by women. On the other hand I would have become a completely miserable bitch as a caregiver, feeling hard done by and overwhelmed. I must admit my original standards of house -keeping have just about disappeared. One of my favourite remarks was Sel saying “I never realised how much you did!
We are planning a trip to Cuba, leaving on Oct 15th and back Nov 15th. Darcy who lives upstairs is going to look after the cats and dogs, it’s a symbiotic thing in lieu of rent, her 11 year old son Zack has been a built in playmate for Jamie so inviting Darcy to stay upstairs has really been a “playing it forward” experience. Since Scleroderma is much more common among people with African ancestry, the Cubans are far more aggressive in their treatment of the disease. I have a specialist down there that will help me. Venus Williams the tennis diva has Sjogren’s syndrome which she may have alone or it may be a fore runner of scleroderma. I had Sjogren’s and Raynaud’s before they diagnosed Scleroderma,so if it can hit a beautiful super fit young woman so much, it is not all in our heads.
Oh damn it is way too long as usual; and I have left out so much great stuff. I feel very happy and also privileged to have so many good friends; my cyber friends all over the world help me live with the world’s weirdest disease that makes you look great, no wrinkles, no need for a bra, a slight tan all over and incredible fatigue and weakness. This is a FYI, as we drop out a bit from activism and try to develop a more leisurely pace of life. I don’t do pity or praying very well so if it works for you, thank you.
Really funny thing, I have no finger prints now, but can’t consider a life of crime as a walker makes a lousy getaway vehicle. LOL Chris

A very long but interesting article, decision fatigue

2011-09-02T15:17:00.002-05:00

Three men doing time in Israeli prisons recently appeared before a parole board consisting of a judge, a criminologist and a social worker. The three prisoners had completed at least two-thirds of their sentences, but the parole board granted freedom to only one of them. Guess which one:

The 6th Floor Blog
Why You Need to Sleep On It
By JOHN TIERNEY

Suffering from decision fatigue? You may be expending your finite amount of willpower too early in the day.

Case 1 (heard at 8:50 a.m.): An Arab Israeli serving a 30-month sentence for fraud.

Case 2 (heard at 3:10 p.m.): A Jewish Israeli serving a 16-month sentence for assault.

Case 3 (heard at 4:25 p.m.): An Arab Israeli serving a 30-month sentence for fraud.

There was a pattern to the parole board’s decisions, but it wasn’t related to the men’s ethnic backgrounds, crimes or sentences. It was all about timing, as researchers discovered by analyzing more than 1,100 decisions over the course of a year. Judges, who would hear the prisoners’ appeals and then get advice from the other members of the board, approved parole in about a third of the cases, but the probability of being paroled fluctuated wildly throughout the day. Prisoners who appeared early in the morning received parole about 70 percent of the time, while those who appeared late in the day were paroled less than 10 percent of the time.

The odds favored the prisoner who appeared at 8:50 a.m. — and he did in fact receive parole. But even though the other Arab Israeli prisoner was serving the same sentence for the same crime — fraud — the odds were against him when he appeared (on a different day) at 4:25 in the afternoon. He was denied parole, as was the Jewish Israeli prisoner at 3:10 p.m, whose sentence was shorter than that of the man who was released. They were just asking for parole at the wrong time of day.

There was nothing malicious or even unusual about the judges’ behavior, which was reported earlier this year by Jonathan Levav of Stanford and Shai Danziger of Ben-Gurion University. The judges’ erratic judgment was due to the occupational hazard of being, as George W. Bush once put it, “the decider.” The mental work of ruling on case after case, whatever the individual merits, wore them down. This sort of decision fatigue can make quarterbacks prone to dubious choices late in the game and C.F.O.’s prone to disastrous dalliances late in the evening. It routinely warps the judgment of everyone, executive and nonexecutive, rich and poor — in fact, it can take a special toll on the poor. Yet few people are even aware of it, and researchers are only beginning to understand why it happens and how to counteract it.

Decision fatigue helps explain why ordinarily sensible people get angry at colleagues and families, splurge on clothes, buy junk food at the supermarket and can’t resist the dealer’s offer to rustproof their new car. No matter how rational and high-minded you try to be, you can’t make decision after decision without paying a biological price. It’s different from ordinary physical fatigue — you’re not consciously aware of being tired — but you’re low on mental energy. The more choices you make throughout the day, the harder each one becomes for your brain, and eventually it looks for shortcuts, usually in either of two very different ways. One shortcut is to become reckless: to act impulsively instead of expending the energy to first think through the consequences. (Sure, tweet that photo! What could go wrong?) The other shortcut is the ultimate energy saver: do nothing. Instead of agonizing over decisions, avoid any choice. Ducking a decision often creates bigger problems in the long run, but for the moment, it eases the mental strain. You start to resist any change, any potentially risky move — like releasing a prisoner who might commit a crime. So the fatigued judge on a parole board takes the easy way out, and the prisoner keeps doing time.

Decision fatigue is the newest discovery involving a phenomenon called ego depletion, a term coined by the social psychologist Roy F. Baumeister in homage to a Freudian hypothesis. Freud speculated that the self, or ego, depended on mental activities involving the transfer of energy. He was vague about the details, though, and quite wrong about some of them (like his idea that artists “sublimate” sexual energy into their work, which would imply that adultery should be especially rare at artists’ colonies). Freud’s energy model of the self was generally ignored until the end of the century, when Baumeister began studying mental discipline in a series of experiments, first at Case Western and then at Florida State University.

These experiments demonstrated that there is a finite store of mental energy for exerting self-control. When people fended off the temptation to scarf down M&M’s or freshly baked chocolate-chip cookies, they were then less able to resist other temptations. When they forced themselves to remain stoic during a tearjerker movie, afterward they gave up more quickly on lab tasks requiring self-discipline, like working on a geometry puzzle or squeezing a hand-grip exerciser. Willpower turned out to be more than a folk concept or a metaphor. It really was a form of mental energy that could be exhausted. The experiments confirmed the 19th-century notion of willpower being like a muscle that was fatigued with use, a force that could be conserved by avoiding temptation. To study the process of ego depletion, researchers concentrated initially on acts involving self-control — the kind of self-discipline popularly associated with willpower, like resisting a bowl of ice cream. They weren’t concerned with routine decision-making, like choosing between chocolate and vanilla, a mental process that they assumed was quite distinct and much less strenuous. Intuitively, the chocolate-vanilla choice didn’t appear to require willpower.

But then a postdoctoral fellow, Jean Twenge, started working at Baumeister’s laboratory right after planning her wedding. As Twenge studied the results of the lab’s ego-depletion experiments, she remembered how exhausted she felt the evening she and her fiancé went through the ritual of registering for gifts. Did they want plain white china or something with a pattern? Which brand of knives? How many towels? What kind of sheets? Precisely how many threads per square inch?

“By the end, you could have talked me into anything,” Twenge told her new colleagues. The symptoms sounded familiar to them too, and gave them an idea. A nearby department store was holding a going-out-of-business sale, so researchers from the lab went off to fill their car trunks with simple products — not exactly wedding-quality gifts, but sufficiently appealing to interest college students. When they came to the lab, the students were told they would get to keep one item at the end of the experiment, but first they had to make a series of choices. Would they prefer a pen or a candle? A vanilla-scented candle or an almond-scented one? A candle or a T-shirt? A black T-shirt or a red T-shirt? A control group, meanwhile — let’s call them the nondeciders — spent an equally long period contemplating all these same products without having to make any choices. They were asked just to give their opinion of each product and report how often they had used such a product in the last six months.

Afterward, all the participants were given one of the classic tests of self-control: holding your hand in ice water for as long as you can. The impulse is to pull your hand out, so self-discipline is needed to keep the hand underwater. The deciders gave up much faster; they lasted 28 seconds, less than half the 67-second average of the nondeciders. Making all those choices had apparently sapped their willpower, and it wasn’t an isolated effect. It was confirmed in other experiments testing students after they went through exercises like choosing courses from the college catalog.

For a real-world test of their theory, the lab’s researchers went into that great modern arena of decision making: the suburban mall. They interviewed shoppers about their experiences in the stores that day and then asked them to solve some simple arithmetic problems. The researchers politely asked them to do as many as possible but said they could quit at any time. Sure enough, the shoppers who had already made the most decisions in the stores gave up the quickest on the math problems. When you shop till you drop, your willpower drops, too.

Any decision, whether it’s what pants to buy or whether to start a war, can be broken down into what psychologists call the Rubicon model of action phases, in honor of the river that separated Italy from the Roman province of Gaul. When Caesar reached it in 49 B.C., on his way home after conquering the Gauls, he knew that a general returning to Rome was forbidden to take his legions across the river with him, lest it be considered an invasion of Rome. Waiting on the Gaul side of the river, he was in the “predecisional phase” as he contemplated the risks and benefits of starting a civil war. Then he stopped calculating and crossed the Rubicon, reaching the “postdecisional phase,” which Caesar defined much more felicitously: “The die is cast.”

The whole process could deplete anyone’s willpower, but which phase of the decision-making process was most fatiguing? To find out, Kathleen Vohs, a former colleague of Baumeister’s now at the University of Minnesota, performed an experiment using the self-service Web site of Dell Computers. One group in the experiment carefully studied the advantages and disadvantages of various features available for a computer — the type of screen, the size of the hard drive, etc. — without actually making a final decision on which ones to choose. A second group was given a list of predetermined specifications and told to configure a computer by going through the laborious, step-by-step process of locating the specified features among the arrays of options and then clicking on the right ones. The purpose of this was to duplicate everything that happens in the postdecisional phase, when the choice is implemented. The third group had to figure out for themselves which features they wanted on their computers and go through the process of choosing them; they didn’t simply ponder options (like the first group) or implement others’ choices (like the second group). They had to cast the die, and that turned out to be the most fatiguing task of all. When self-control was measured, they were the one who were most depleted, by far.

The experiment showed that crossing the Rubicon is more tiring than anything that happens on either bank — more mentally fatiguing than sitting on the Gaul side contemplating your options or marching on Rome once you’ve crossed. As a result, someone without Caesar’s willpower is liable to stay put. To a fatigued judge, denying parole seems like the easier call not only because it preserves the status quo and eliminates the risk of a parolee going on a crime spree but also because it leaves more options open: the judge retains the option of paroling the prisoner at a future date without sacrificing the option of keeping him securely in prison right now. Part of the resistance against making decisions comes from our fear of giving up options. The word “decide” shares an etymological root with “homicide,” the Latin word “caedere,” meaning “to cut down” or “to kill,” and that loss looms especially large when decision fatigue sets in.

Once you’re mentally depleted, you become reluctant to make trade-offs, which involve a particularly advanced and taxing form of decision making. In the rest of the animal kingdom, there aren’t a lot of protracted negotiations between predators and prey. To compromise is a complex human ability and therefore one of the first to decline when willpower is depleted. You become what researchers call a cognitive miser, hoarding your energy. If you’re shopping, you’re liable to look at only one dimension, like price: just give me the cheapest. Or you indulge yourself by looking at quality: I want the very best (an especially easy strategy if someone else is paying). Decision fatigue leaves you vulnerable to marketers who know how to time their sales, as Jonathan Levav, the Stanford professor, demonstrated in experiments involving tailored suits and new cars.

The idea for these experiments also happened to come in the preparations for a wedding, a ritual that seems to be the decision-fatigue equivalent of Hell Week. At his fiancée’s suggestion, Levav visited a tailor to have a bespoke suit made and began going through the choices of fabric, type of lining and style of buttons, lapels, cuffs and so forth.

“By the time I got through the third pile of fabric swatches, I wanted to kill myself,” Levav recalls. “I couldn’t tell the choices apart anymore. After a while my only response to the tailor became ‘What do you recommend?’ I just couldn’t take it.”

Levav ended up not buying any kind of bespoke suit (the $2,000 price made that decision easy enough), but he put the experience to use in a pair of experiments conducted with Mark Heitmann, then at Christian-Albrechts University in Germany; Andreas Herrmann, at the University of St. Gallen in Switzerland; and Sheena Iyengar, of Columbia. One involved asking M.B.A. students in Switzerland to choose a bespoke suit; the other was conducted at German car dealerships, where customers ordered options for their new sedans. The car buyers — and these were real customers spending their own money — had to choose, for instance, among 4 styles of gearshift knobs, 13 kinds of wheel rims, 25 configurations of the engine and gearbox and a palette of 56 colors for the interior.

As they started picking features, customers would carefully weigh the choices, but as decision fatigue set in, they would start settling for whatever the default option was. And the more tough choices they encountered early in the process — like going through those 56 colors to choose the precise shade of gray or brown — the quicker people became fatigued and settled for the path of least resistance by taking the default option. By manipulating the order of the car buyers’ choices, the researchers found that the customers would end up settling for different kinds of options, and the average difference totaled more than 1,500 euros per car (about $2,000 at the time). Whether the customers paid a little extra for fancy wheel rims or a lot extra for a more powerful engine depended on when the choice was offered and how much willpower was left in the customer.

Similar results were found in the experiment with custom-made suits: once decision fatigue set in, people tended to settle for the recommended option. When they were confronted early on with the toughest decisions — the ones with the most options, like the 100 fabrics for the suit — they became fatigued more quickly and also reported enjoying the shopping experience less.

Shopping can be especially tiring for the poor, who have to struggle continually with trade-offs. Most of us in America won’t spend a lot of time agonizing over whether we can afford to buy soap, but it can be a depleting choice in rural India. Dean Spears, an economist at Princeton, offered people in 20 villages in Rajasthan in northwestern India the chance to buy a couple of bars of brand-name soap for the equivalent of less than 20 cents. It was a steep discount off the regular price, yet even that sum was a strain for the people in the 10 poorest villages. Whether or not they bought the soap, the act of making the decision left them with less willpower, as measured afterward in a test of how long they could squeeze a hand grip. In the slightly more affluent villages, people’s willpower wasn’t affected significantly. Because they had more money, they didn’t have to spend as much effort weighing the merits of the soap versus, say, food or medicine.

Spears and other researchers argue that this sort of decision fatigue is a major — and hitherto ignored — factor in trapping people in poverty. Because their financial situation forces them to make so many trade-offs, they have less willpower to devote to school, work and other activities that might get them into the middle class. It’s hard to know exactly how important this factor is, but there’s no doubt that willpower is a special problem for poor people. Study after study has shown that low self-control correlates with low income as well as with a host of other problems, including poor achievement in school, divorce, crime, alcoholism and poor health. Lapses in self-control have led to the notion of the “undeserving poor” — epitomized by the image of the welfare mom using food stamps to buy junk food — but Spears urges sympathy for someone who makes decisions all day on a tight budget. In one study, he found that when the poor and the rich go shopping, the poor are much more likely to eat during the shopping trip. This might seem like confirmation of their weak character — after all, they could presumably save money and improve their nutrition by eating meals at home instead of buying ready-to-eat snacks like Cinnabons, which contribute to the higher rate of obesity among the poor. But if a trip to the supermarket induces more decision fatigue in the poor than in the rich — because each purchase requires more mental trade-offs — by the time they reach the cash register, they’ll have less willpower left to resist the Mars bars and Skittles. Not for nothing are these items called impulse purchases.

And this isn’t the only reason that sweet snacks are featured prominently at the cash register, just when shoppers are depleted after all their decisions in the aisles. With their willpower reduced, they’re more likely to yield to any kind of temptation, but they’re especially vulnerable to candy and soda and anything else offering a quick hit of sugar. While supermarkets figured this out a long time ago, only recently did researchers discover why.

The discovery was an accident resulting from a failed experiment at Baumeister’s lab. The researchers set out to test something called the Mardi Gras theory — the notion that you could build up willpower by first indulging yourself in pleasure, the way Mardi Gras feasters do just before the rigors of Lent. In place of a Fat Tuesday breakfast, the chefs in the lab at Florida State whipped up lusciously thick milkshakes for a group of subjects who were resting in between two laboratory tasks requiring willpower. Sure enough, the delicious shakes seemed to strengthen willpower by helping people perform better than expected on the next task. So far, so good. But the experiment also included a control group of people who were fed a tasteless concoction of low-fat dairy glop. It provided them with no pleasure, yet it produced similar improvements in self-control. The Mardi Gras theory looked wrong. Besides tragically removing an excuse for romping down the streets of New Orleans, the result was embarrassing for the researchers. Matthew Gailliot, the graduate student who ran the study, stood looking down at his shoes as he told Baumeister about the fiasco.

Baumeister tried to be optimistic. Maybe the study wasn’t a failure. Something had happened, after all. Even the tasteless glop had done the job, but how? If it wasn’t the pleasure, could it be the calories? At first the idea seemed a bit daft. For decades, psychologists had been studying performance on mental tasks without worrying much about the results being affected by dairy-product consumption. They liked to envision the human mind as a computer, focusing on the way it processed information. In their eagerness to chart the human equivalent of the computer’s chips and circuits, most psychologists neglected one mundane but essential part of the machine: the power supply. The brain, like the rest of the body, derived energy from glucose, the simple sugar manufactured from all kinds of foods. To establish cause and effect, researchers at Baumeister’s lab tried refueling the brain in a series of experiments involving lemonade mixed either with sugar or with a diet sweetener. The sugary lemonade provided a burst of glucose, the effects of which could be observed right away in the lab; the sugarless variety tasted quite similar without providing the same burst of glucose. Again and again, the sugar restored willpower, but the artificial sweetener had no effect. The glucose would at least mitigate the ego depletion and sometimes completely reverse it. The restored willpower improved people’s self-control as well as the quality of their decisions: they resisted irrational bias when making choices, and when asked to make financial decisions, they were more likely to choose the better long-term strategy instead of going for a quick payoff. The ego-depletion effect was even demonstrated with dogs in two studies by Holly Miller and Nathan DeWall at the University of Kentucky. After obeying sit and stay commands for 10 minutes, the dogs performed worse on self-control tests and were also more likely to make the dangerous decision to challenge another dog’s turf. But a dose of glucose restored their willpower.

Despite this series of findings, brain researchers still had some reservations about the glucose connection. Skeptics pointed out that the brain’s overall use of energy remains about the same regardless of what a person is doing, which doesn’t square easily with the notion of depleted energy affecting willpower. Among the skeptics was Todd Heatherton, who worked with Baumeister early in his career and eventually wound up at Dartmouth, where he became a pioneer of what is called social neuroscience: the study of links between brain processes and social behavior. He believed in ego depletion, but he didn’t see how this neural process could be caused simply by variations in glucose levels. To observe the process — and to see if it could be reversed by glucose — he and his colleagues recruited 45 female dieters and recorded images of their brains as they reacted to pictures of food. Next the dieters watched a comedy video while forcing themselves to suppress their laughter — a standard if cruel way to drain mental energy and induce ego depletion. Then they were again shown pictures of food, and the new round of brain scans revealed the effects of ego depletion: more activity in the nucleus accumbens, the brain’s reward center, and a corresponding decrease in the amygdala, which ordinarily helps control impulses. The food’s appeal registered more strongly while impulse control weakened — not a good combination for anyone on a diet. But suppose people in this ego-depleted state got a quick dose of glucose? What would a scan of their brains reveal?

The results of the experiment were announced in January, during Heatherton’s speech accepting the leadership of the Society for Personality and Social Psychology, the world’s largest group of social psychologists. In his presidential address at the annual meeting in San Antonio, Heatherton reported that administering glucose completely reversed the brain changes wrought by depletion — a finding, he said, that thoroughly surprised him. Heatherton’s results did much more than provide additional confirmation that glucose is a vital part of willpower; they helped solve the puzzle over how glucose could work without global changes in the brain’s total energy use. Apparently ego depletion causes activity to rise in some parts of the brain and to decline in others. Your brain does not stop working when glucose is low. It stops doing some things and starts doing others. It responds more strongly to immediate rewards and pays less attention to long-term prospects.

The discoveries about glucose help explain why dieting is a uniquely difficult test of self-control — and why even people with phenomenally strong willpower in the rest of their lives can have such a hard time losing weight. They start out the day with virtuous intentions, resisting croissants at breakfast and dessert at lunch, but each act of resistance further lowers their willpower. As their willpower weakens late in the day, they need to replenish it. But to resupply that energy, they need to give the body glucose. They’re trapped in a nutritional catch-22:

1. In order not to eat, a dieter needs willpower.

2. In order to have willpower, a dieter needs to eat.

As the body uses up glucose, it looks for a quick way to replenish the fuel, leading to a craving for sugar. After performing a lab task requiring self-control, people tend to eat more candy but not other kinds of snacks, like salty, fatty potato chips. The mere expectation of having to exert self-control makes people hunger for sweets. A similar effect helps explain why many women yearn for chocolate and other sugary treats just before menstruation: their bodies are seeking a quick replacement as glucose levels fluctuate. A sugar-filled snack or drink will provide a quick improvement in self-control (that’s why it’s convenient to use in experiments), but it’s just a temporary solution. The problem is that what we identify as sugar doesn’t help as much over the course of the day as the steadier supply of glucose we would get from eating proteins and other more nutritious foods.

The benefits of glucose were unmistakable in the study of the Israeli parole board. In midmorning, usually a little before 10:30, the parole board would take a break, and the judges would be served a sandwich and a piece of fruit. The prisoners who appeared just before the break had only about a 20 percent chance of getting parole, but the ones appearing right after had around a 65 percent chance. The odds dropped again as the morning wore on, and prisoners really didn’t want to appear just before lunch: the chance of getting parole at that time was only 10 percent. After lunch it soared up to 60 percent, but only briefly. Remember that Jewish Israeli prisoner who appeared at 3:10 p.m. and was denied parole from his sentence for assault? He had the misfortune of being the sixth case heard after lunch. But another Jewish Israeli prisoner serving the same sentence for the same crime was lucky enough to appear at 1:27 p.m., the first case after lunch, and he was rewarded with parole. It must have seemed to him like a fine example of the justice system at work, but it probably had more to do with the judge’s glucose levels.

It’s simple enough to imagine reforms for the parole board in Israel — like, say, restricting each judge’s shift to half a day, preferably in the morning, interspersed with frequent breaks for food and rest. But it’s not so obvious what to do with the decision fatigue affecting the rest of society. Even if we could all afford to work half-days, we would still end up depleting our willpower all day long, as Baumeister and his colleagues found when they went into the field in Würzburg in central Germany. The psychologists gave preprogrammed BlackBerrys to more than 200 people going about their daily routines for a week. The phones went off at random intervals, prompting the people to report whether they were currently experiencing some sort of desire or had recently felt a desire. The painstaking study, led by Wilhelm Hofmann, then at the University of Würzburg, collected more than 10,000 momentary reports from morning until midnight.

Desire turned out to be the norm, not the exception. Half the people were feeling some desire when their phones went off — to snack, to goof off, to express their true feelings to their bosses — and another quarter said they had felt a desire in the past half-hour. Many of these desires were ones that the men and women were trying to resist, and the more willpower people expended, the more likely they became to yield to the next temptation that came along. When faced with a new desire that produced some I-want-to-but-I-really-shouldn’t sort of inner conflict, they gave in more readily if they had already fended off earlier temptations, particularly if the new temptation came soon after a previously reported one.

The results suggested that people spend between three and four hours a day resisting desire. Put another way, if you tapped four or five people at any random moment of the day, one of them would be using willpower to resist a desire. The most commonly resisted desires in the phone study were the urges to eat and sleep, followed by the urge for leisure, like taking a break from work by doing a puzzle or playing a game instead of writing a memo. Sexual urges were next on the list of most-resisted desires, a little ahead of urges for other kinds of interactions, like checking Facebook. To ward off temptation, people reported using various strategies. The most popular was to look for a distraction or to undertake a new activity, although sometimes they tried suppressing it directly or simply toughing their way through it. Their success was decidedly mixed. They were pretty good at avoiding sleep, sex and the urge to spend money, but not so good at resisting the lure of television or the Web or the general temptation to relax instead of work.

We have no way of knowing how much our ancestors exercised self-control in the days before BlackBerrys and social psychologists, but it seems likely that many of them were under less ego-depleting strain. When there were fewer decisions, there was less decision fatigue. Today we feel overwhelmed because there are so many choices. Your body may have dutifully reported to work on time, but your mind can escape at any instant. A typical computer user looks at more than three dozen Web sites a day and gets fatigued by the continual decision making — whether to keep working on a project, check out TMZ, follow a link to YouTube or buy something on Amazon. You can do enough damage in a 10-minute online shopping spree to wreck your budget for the rest of the year.

The cumulative effect of these temptations and decisions isn’t intuitively obvious. Virtually no one has a gut-level sense of just how tiring it is to decide. Big decisions, small decisions, they all add up. Choosing what to have for breakfast, where to go on vacation, whom to hire, how much to spend — these all deplete willpower, and there’s no telltale symptom of when that willpower is low. It’s not like getting winded or hitting the wall during a marathon. Ego depletion manifests itself not as one feeling but rather as a propensity to experience everything more intensely. When the brain’s regulatory powers weaken, frustrations seem more irritating than usual. Impulses to eat, drink, spend and say stupid things feel more powerful (and alcohol causes self-control to decline further). Like those dogs in the experiment, ego-depleted humans become more likely to get into needless fights over turf. In making decisions, they take illogical shortcuts and tend to favor short-term gains and delayed costs. Like the depleted parole judges, they become inclined to take the safer, easier option even when that option hurts someone else.

“Good decision making is not a trait of the person, in the sense that it’s always there,” Baumeister says. “It’s a state that fluctuates.” His studies show that people with the best self-control are the ones who structure their lives so as to conserve willpower. They don’t schedule endless back-to-back meetings. They avoid temptations like all-you-can-eat buffets, and they establish habits that eliminate the mental effort of making choices. Instead of deciding every morning whether or not to force themselves to exercise, they set up regular appointments to work out with a friend. Instead of counting on willpower to remain robust all day, they conserve it so that it’s available for emergencies and important decisions.

“Even the wisest people won’t make good choices when they’re not rested and their glucose is low,” Baumeister points out. That’s why the truly wise don’t restructure the company at 4 p.m. They don’t make major commitments during the cocktail hour. And if a decision must be made late in the day, they know not to do it on an empty stomach. “The best decision makers,” Baumeister says, “are the ones who know when not to trust themselves.”

John Tierney (tierneylab@nytimes.com) is a science columnist for The Times. His essay is adapted from a book he wrote with Roy F. Baumeister, “Willpower: Rediscovering the Greatest Human Strength,” which comes out next month.

Editor: Aaron Retica (a.retica-MagGroup@nytimes.com)

A version of this article appeared in print on August 21, 2011, on page MM33 of the Sunday Magazine with the headline: To Choose is to Lose.
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MAJOR MORTIFICATION

2011-09-02T14:09:00.003-05:00

Well I have totally broken all the rules on confining whingeing and whining to Wednesdays, it has been a woeful week. Possibly with crowning incident today.

I had asked Sel if he could bring down a small office chair from upstairs as I figured I could sit on that to do low down house work and move around on it. Darcy from upstairs had brought one down and there it was in the hall/vestibule so Sel brought it in for me. Darcy had put it there to take to the garage because it was broken, there were two, so the good one was still upstairs.

He let's the dogs out and I excited decide to try out the new device. Suddenly the seat bucked and flung me across the room. Slightly bruised but not broken I look at the seat and see all four bolts have fallen out. No problem I think I'll get up and ask Sel to fix it.

No amount of pushing on the floor and pulling on furniture would get me on my feet; at one time I had my chin on the sofa and pushed down with my arms, but to no avail.Sel had come in quickly for something in the hallway so I yelled to which he replied "just a minute love". In the mean time a cat discovering that I had seemed to have become a new ground level fixture curled up on my back.

Then suddenly Sel returns with the dog pack who all fall upon Mom and sniff and kiss/lick me better, poor Sel then sees me and we start the maneuvering to get me upright. This was not helped by fits of giggles on my part, but eventually I returned to the vertical position, really not too bruised to the body but a bit of ego damage.

I had a message on my last post, (thank you DB) about trying to get used to the ultra firm mattress as it might be good for me, I did not read it until after I had given the 'new used' one away; but the weird part is tho my skin is super thick it is very sensitive and lying and leaning on hard things hurts my bony bits, like shoulder blades and elbows.

Also the itching has become seriously intense again, after the possible infections had healed, I decided to go back to the cream on my hard dry parts. I am now pretty sure that I am allergic to that cream as right away I started to itch more and was getting a rash again.

Poor Venus Williams, I hope she gets a remission, but people just can't understand it's not like flu, she won't just get better, an auto immune disease is for life and really are "till death do us part"

Venus

2011-09-01T21:28:00.002-05:00

I was reading the paper today and was really surprised to see Venus Williams has Sjogren's Syndrome; as part of my scleroderma I have it too plus Raynauds, it is good to be thorough with you ailments. Sjogren's is the one that dries out all your damp areas.

The tickets for Cuba are booked, Sel is getting his passport updated. Dylan is booking some time off to care for James while we are gone. We took stuff to the Sally Anne and bought some summery stuff on sale for Cuba. James bought a very cool hat.
Jamie has started mopping up puppy piddles which is really good , but he did balk at poop, luckily she did that all outside today.

After a night on the terribly firm "new to us" mattress, I decided I wanted the softness of my own mattress, we had really only wanted a box-spring anyway, so we put the other mattress back and I found a home for the super firm mattress in an hour in the neighbourhood.

Sel had three meetings yesterday, I went to one with him, but we enjoy days when we have more time for ourselves. A friend called and suggested supper together so we went to Magic Thai, one of our favourites, great food and excellent company.

Truly I am not an inspired writer today. I am dreading the 10th anniversary of
9/11; it will be ghastly. I hear there is already a rather nasty colouring book for US kiddies where they can colour those freedom hating Muslim Fundamentalists and even the "seal" who killed Osama Bin Laden, Osama is portrayed hiding behind his wife's burkha, they can even colour the bullet.

I read a thing recently that made me so sad, it more or less said that killing the Jews had destroyed Europe, because now Europe is full of dirty, lazy Muslims. So much of the spewed out hatred only required changing the word , Muslim for Jew to see the filthy propaganda against Jews in the 30s.

No wonder I like dogs and cats so much, they figure out how to live together in relative peace.

CUBA with or without !

2011-08-30T20:10:00.002-05:00

It's Tuesday, yesterday we bought a second hand mattress and boxspring for $50 which I thought was a deal, they are impeccable from a non-smoking home!
Last night we tried sleeping on them, the boxspring is a tremendous success , I can swing my legs over the side and stand up because it is high enough. However the mattress is super firm and I felt like a pea on a cutting board and woke up several times wondering where I was.
Tonight I shall push for the old mattress, the combination could be perfect!
I was doing a lot of studying on the internet today with regards to Pulmonary fibrosis, which has probably robbed me of 20% of my lungs; now this had me completely bamboozled. Pulmonary fibrosis could be caused by methotrexate but also methotrexate could be used as a treatment; yes you read that correctly.... what is a patient of sclerodermia to think, on top of which my latest specialist said it is too late to try methotrexate, my Cuban specialist says let's get in there and try it!
Checked on line and some of my sclero people are swearing by Metho, others vomiting all day and losing their hair. Welcome to my nightmare!
Roxy trying hard with the bathroom thing, Jamie adores her.
Dylan was in hospital today with his bloody kidney stones, doped up on morphine last night and today , but released tonight and back to work tomorrow.He assured me he would not be using heavy machinery or driving beacuse I think the half life of morphine is quite long.
There's our poor son with an inexplicable health problem, desperately trying to hang on to his job and fighting incredible pain to do so.
I am so lucky that my disease has hit later in life, I don't have to try and teach.
Sel was involved in a meeting today with several levels of gov. trying to figure out how to stop the outrageous prescribing of opiate medecines to any body who wanders in with a cloned, borrowed or stolen card. It's a quick income for unscrupulous doctors; in they come" the patients" suffering incredible Pain "oscar performances" and they get a hefty presciption which is then sold to a drug dealer; it is the tax-payer who ultimately pays for the drugs and all the problems they cause.
We are booked for Cuba on Oct.15th; will be a great holiday with or without hair!!

A Week of Woeful Wednesdays

2011-08-28T21:51:00.003-05:00

I have always thought of Sunday as the last day of the week. Monday is the first day of the week for me.
Last week was a very strange and disturbing week, the more I reflected on it the less pleased I became with the visit with my new specialist.
I am sort of left to just carry on waiting for problems to worsen, no attempt to try to slow the process.

I emailed the specialist in Cuba and by return email, he said he disagreed that it was too late for Methotrexate and he would at least attempt it along with several other drugs to support lung function.
He wants to know the results of the blood tests; actually I would like to know the results of all my blood tests, the MRI and the CT scan. I finally learned the result of the lung test which as I said is 80% of lung function still there.

A lot of the women I am on line with know all the exact figures of their blood tests.I am not sure maybe I look terminally daft.I do tend to become shy at the doctor's office. Some people's blood work is supportive of their diagnosis, others have the disease but the blood tests do not show the expected blood chemistry changes.I would really like to know what the hell is going on in my body.

I was told by the first specialist when there was a strange protein that might indicate a type of blood cancer. but it did not increase after 6 months or a year , so it is just something to monitor.

Our daughter Teresa came down to do a talk in support of her art pieces and move them from one place to another.
Teresa's work is meant as a homage to the missing and murdered women, and also a call to our justice system to find who is wantonly killing our daughters and sisters, we either have a case like Willy Picton who killed 49+ women right under every bodies noses.
If we do not have a serial killer we may have about 40 murderers wandering around, men who feel they have the right to snuff out the life of young women.

At the same time we had guys painting the outside of the house, Teresa and her daughter Emily staying here,Robertson locked in the bathroom for treatment. Jamie here and Roxy being trained very slowly. Friday night Dylan came over to work on Teresa and Emily's new Notebooks for them. It all took way longer than we had hoped, which led to Sel and I having a huge fight late Friday night, I definitely lashed out with all my force, not a pretty sight.

Saturday morning we made up. I was a bit horrified and surprised by some things Sel says I said, but I do not recall saying them.

Today my muscles have been miserably weak and the itching intense.

Sel is looking on line for flights to Cuba, he is going to make sure we at least give the Cuban treatment a trial. It's a bit scary to me as I am not sure how to do this ethically, but then I don't see the new specialist again until December and I will be in Cuba in October to November.

Sorry for all the grief, it really has been a week of Woeful Wednesdays.

Oh I forgot some animal has peed on the bed two nights in a row; not a cat wrong smell, one of the smaller dogs but I have no idea why or which one for sure. Lots of laundry fun.

CBC.ca - Image Gallery - Teresa Burrows

2011-08-28T16:11:00.000-05:00

CBC.ca - Image Gallery - Teresa Burrows

Check list

2011-08-23T14:55:00.002-05:00

After my extreme rage yesterday, I have calmed slightly, altho there will always be a few "What ifs".
Today I had a call from a lovely young woman from Home care; I am going to be getting a visit from an occupational therapist; I was also offered "home care" this would be somebody who came to help with house work.
Heaven forfend that! If somebody was coming to clean I would have to clean up first so as they were not disgusted by the hair balls etc.
The Occ. therapist will evaluate what we could get to make my muscleless life easier. I learned from her that she was told I have severe Scleroderma and MYOPATHY, that is a fancy name for what you already know; my muscles are funting toast.

BUT the funniest part was the check list she had to go thru with me,
1) Were there gangs in the area? So I had to explain about the Powerline Sel and I run and how there were no official gangs operating here.
2) Was it safe on my street? Again had to say very safe, didn't mention that one of our neighbours is a very large reformed gang member who I would always want on my side.
3) Were there any weapons in my house? Again that is a tough one, but no official weapons, a kitchen full of knives and a couple of cast iron frying pans. I have even heard of someone using a telephone to bludgeon someone to death.
4) Was there anybody abusive in the house? Definitely not, say I. True, if you don't regard dog farts as abusive!
5)I had to admit neither of us smoked anything and that smokers who visited had to go outside.
Finally I told her we were "Block Parents" so we have a clean police profile.
WOW, no wonder there are virtually no door to door sales persons these days.

My sclero doc yesterday asked if I had a raised toilet seat and I said that since there were two males in the house that seemed cruel and unusual. I didn't mention the old dog who prefers toilet water couldn't reach over the top of the raised seat.

I think side rails would be better to help me stand up. I have yet to see a design for a toilet similar to the chair I have that will rise up and tip me off?

WELL how do you like that the dictionary on my Blogger does not recognise the word funting!

FUNT

2011-08-22T22:31:00.002-05:00

FUNT, FUNT,FUNT. this is a contraction of my two favourite swear words , the F word AND THE C WORD; I despise myself for using these euphemisms, but I an always more concerned about upsetting my readers than I am dedicated to expressing myself . I went to my brand new specialist. It was not a positive outcome , not his fault . I went in hoping he would put me on the same drug my Cuban specialist said might help. This is called Methotrexate. it supposedly slows this disease, however today I learned that if I had been prescribed this med. at the stage I was diagnosed it would have helped...possibly.... NOW it is far too funting late.
So we are now discussing lung, heart etc specialists and the digestive system is not out of scope.
Th good news is that I have left 80% of lung function, which of course is way better than 20%.
This new guy's speciality is Scleroderma, I wish I had found him sooner; I like him but what the hell do you do with a disease for which there is no cure. This man looks me in the eye and touches my body. He is working with a student , I think the poor lad is Muslim and probably my take on sclero was a bit wild for him. We in talking mentioned My vagina OOOOOps. and I replied Oh you mean the only place where I have thin skin!!!
I am a born again virgin!
This was a totally horrible,very bad day. Jack Layton died; our best hope for progressive government in Canada.
FUNT FUNT FUNT I am drunk and angry, so bloody angry, I don't know how to express my disgust On so many levels, My own funting disease and the loss of our best hope for calm and gentle government if that is possible,
Thanks for putting up with my tantrums; if you are still with me.
BUT let me tell you I love life even if it means a wheel chair, and if my wonderful husband sticks with me , he is awesome altho a huge pain in the arse!
FUNT!

This,that and probably the other

2011-08-21T20:28:00.003-05:00

We spent about two hours today driving around the neighbourhood recording where there was garbage and by-law infractions. I don't think anybody else could read my notes, but I will probably spend a couple of hours tomorrow transcribing them into reports for the by-law and garbage departments of the city.
Not sure if this is caused by delusions of grandeur or social responsibility, but it is the boring reason why you can turn around a neighbourhood, get rid of the garbage and clean up the houses, where poor landlords have let them become slums.
This morning we had the Sunday Intellectual breakfast with Bill, greatly enhanced by the presence of our daughter Karen and Jade our grand-daughter and a friend who stopped in before heading out to Thompson.
We are so terribly lucky to be so impressed by our kids and their partners; Karen without breaking confidentiality kept us entertained by stories from Parole, my little girl is a very smart cookie, she is so very real and I think that is why she can reach people.
Now I have spent the last hour on the phone with my other dear daughter Teresa discussing the world in general and a few people in particular. She and Emily are coming to town on Tuesday, Emily visiting friends and Teresa in town in connection with the art shows she is in around Winnipeg.

Tomorrow is big and scary, I am trying not to hope for too much, I know there is no cure, but I really want to find something which will slow its progress. It being Systemic Sclerosis, so strange that Multiple Sclerosis is a well known disease, whereas Systemic Sclerosis is almost unknown and I think as horrible. ALS is probably even more vile.

OK so what the hell am I babbling about? Tomorrow I go to see the new specialist who has chosen scleroderma as his special field. I am ready to go into any register, to donate samples from my body; life history whatever. In fact when I die they can have the whole body if it is any use. Sadly so few places are researching Scleroderma that few want a cadaver with scleroderma.

After returning from the highway and bridge,Dylan fought the stones in his kidneys, and his wife Jackie had to watch him pour beer down his throat, strangely enough this can sometimes dislodge a stone or get it to settle down.

Dylan and Jackie spared time to help me with my Kobo so that I could download from the public library. I have the Christopher Hitchens Book, "God is not GREAT". so far apart from the fact he is more erudite, I feel as if I might have written the book. I am also part way thru Anne of Green Gables, which of course as a Brit I never read, there is a bizarre interaction between the two books.
This was the thing I loved most about Univ. the interactions between totally different courses.
The "crystal cat" has shown his displeasure by shredding a toilet roll in the bathroom where he is in quarantine.. Robertson is visted by Noche the black cat sometimes, in hopes that Robertson may have left a bit of the delicious wet food, however Noche suffers from bulimia and on his last visit threw up in the can of wet food after it was empty, very tidy, but a bit disgusting.

OK pet lovers are weird!

Burdock, going down.

2011-08-17T18:57:00.003-05:00

Well, I have found online a person with scleroderma in Winnipeg,she is about 20 years younger than me and about 30 lbs. less than me, very tiny. Rotten sclero is all over and thru her, but she sounds amazingly upbeat, but this has not always been helpful as people did not realise how bad her case was until they did some tests and then they were amazed. Sounds a bit like the fuss when I did my last lung function test.
Bill was over today working on the windows, almost finished.
We looked out of the window today and were stunned to see the Burdock being removed, they were doing an excellent job as it had just about taken over the whole river bank, so they were cutting and loading the stuff into a truck. Horrible job for the workers as the seeds or burrs stick to everything. It is alleged that burdock seed was the model for velro.
I didn't get much done today; spent some time in the bathroom with quarantined cat;he is so lovinng and hates being shut in but phantom piddling not attractive.
Our elder daughter found an Emily Mary Osborn on Google who was an artist. My first husband was an Osborn; she is wondering if anybody knows if she is a relation or ancestor. I'll have to check with my ex-sister-in-law, who might have some history of the family.
I finished Huckleberry Finn on my Kobo, I think this is going to work for me, I now have to follow the instructions for downloading books, but holding the Kobo is way easier than a book. and pressing the little button to turn the page much easier than getting my fumble fingers to turn a page.
Supper is ready, so time to go.

WEAK

2011-08-16T15:00:00.003-05:00

Crystal cat is living in the bathroom, while we work on medicating him, we allow other cats in to visit, but we don't want the "Phantom Piddler" striking inappropriately again all over the house.
Canadian flag washed up very nicely!
Anyway in order to keep door knobs easier for me we have put the lever type handle on several rooms including the bathroom. Little smart-arse Chico knows how to open these so he opened the door and let the cat out. When I tried to carry the cat back to the bathroom, I could not carry him,I just wasn't strong enough. I had to put him down after three steps.
I am all out of expletives for this disease.
Excitement today as Jamie is off to the museum with a new neighbour/friend. Zack is off at camp so the timing is great.
James, and Jackie and we are going out for supper to celebrate Jackie's birthday, we are not sure yet where we will go.
The wind is wild today; everything that isn't nailed or tied down is flying.
The lawn-mower fixing store is still closed for family emergency, doesn't sound good.

We no longer have the Canadian Armed Forces we have gone back to the old Royal Navy, Royal Air Force etc. This seems so retrograde and colonial, not sure if they have to change their uniforms as well. Harper's Conservatives idiocy again.

Crystals

2011-08-15T15:26:00.002-05:00

A long time without blogging, sorry. Happily a lack of time as a result of mostly good things.
We had some unexpected visits from friends and Bill our intellectual breakfast partner arrived On Saturday after dropping his brother off at the airport, to help Sel install our new windows upstairs, windows we hope will be eco-kind and stop heat loss.
So we ended up with two days of intelligent discussion as the job was finished after traditional breakfast on Sunday, there is still work to do inside to finish off the windows.
The weather has been amazingly warm and dry. Most people tired of the heat but I still have long sleeves indoors,my body temp. is just on a different range than other people.
Last night we went out for the belated birthday supper and our granddaughter Jade who celebrates her birthday on the 14th was there with her friend, plus Jackie our daughter in law has a birthday on the 16th, We will also go out with Jackie on the 16th as Dylan is out of town, up near Brandon with the bridge crew. James enjoyed his first visit to the Spaghetti Factory,eating most of his supper and my desert which is ice-cream and I can't digest it.
I have been making a concerted attempt to use the computer less; particularly the Scleroderma groups as I think I have learned a great deal, but don't want to wallow.
I did consult one group because on Saturday while the windows were going in upstairs I worked hard on clean up downstairs. This is my new hard which is a joke compared to two years ago. At one point I felt pretty puffed out and sat down, then it felt as if my heart was jumping around either that or I swallowed a jigging hamster. It settled down quite quickly but it did scare me.
So I posted the description and asked what it might be. A couple of replies indicated it was probably Pulmonary Fibrosis, which from the fact that I now have a pulmonary specialist in my future, seems the probable answer.
Today off to the vet again, our little Zarzamora is getting better her tail is almost full wag, and she is doing happy- rolling, she still doesn't trust her ability to jump up on my lap and I am not strong enough to hoist her up so, Sel has to put her on my lap.
Today's visit was with the orange cat, Robertson, he who peed on the Canadian flag has also tried a few other inappropriate piddles,so we were pretty sure he had crystals. Poor fellow has to be caged for a while with special food and he had a shot in the butt , he was totally unimpressed.We have him shut in the bathroom for now, and will be shopping for a bigger cage for night time on line.
Sel is off taking the lawn-mower (the second hand on that still had a warranty) to be fixed. He has just returned stor closed for family emergency.
The Wi-fi front step club is still going strong, with kids turning up with their notebooks and sitting still for a good long time. It's really great, but when it gets cold, I think we will let them inside!
Just received a call from a lady with several cages , so off we go !

over .08

2011-08-12T22:06:00.002-05:00

After a little too much alcohol: I feel so frustrated with life in general. I am sorry to say that despite my belated education and many years of experience of the "world"; if I lived in London (my Home town) I might have been out there in the streets with the rioters.
Really if you want to make yourself heard you have to break the law. I was at the G8 demos in Quebec and we were not news until the Black Block went crazy, crazy old lady, Sel and I went up against them...bricks and Molotov cocktails flying over Sel and my head.
How can we expect the average person /peon /serf to understand what is really happening?
The media and political staff are brilliant at bending and leading to create an image.
How much easier it was when our prime minister often turned up too drunk and carefully threw up to the side to speak.
World leaders are dirty, greedy and corrupt. Where are you leading us?

Over .08

2011-08-12T22:04:00.000-05:00

Feral children.

2011-08-11T19:52:00.003-05:00

Oh good grief I missed woeful Wednesday again; not too much woe today, I arose early for me these days at 7.30am, a dreadful time of day, then I had to leave the house without coffee or jewellery. The lack of coffee was by far the worse!
My tech was pleased as I came braless with no jewellery and just a T-shirt and sweats so I didn't have to gown up (or open as they mostly are) and just slipped into the machine.
Then a pleasant voice told me to breath in and hold my breath several times, then it sort of shifted me back and forth I was pretty good except I couldn't hold my breath for 30 seconds, but she had warned me just to start letting the breath go slowly and it would be OK.
On the way home we stopped in at the Barber House for a coffee and muffin and visit with Rick, the programme manager.
After that we decided to go to the library. We tried a different branch as the one closest to us is seriously inaccessible and as it is a Heritage building hard to change.
Barber House may win something for being extremely accessible we are told.
We were talking to a library tech who was an e-reader enthusiast she has an arthritis and has trouble holding books too.
We decided to go and buy one reader and try it out so we bought a Kobo, it seems reader friendly as far as I have gone. I am going to read one of the 100 classics already loaded into it this evening. With this model we can download from the library, some like Kindle you have to buy books to download.
We are seriously thinking of doing our dog walking club again. A couple of years ago some of us who have dogs walked them in the park to get rid of drug dealers.It worked old ladies and dogs just aren't the right ambience for a serious dealer!
I think the time has come to start on our worst street soon the feral children who deal crack have started to harass people as they walk by. Time for a few little old ladies and their dogs and also walkers if applicable to take to the street.
The poor kids are mostly afflicted by FASD, they do very poorly in school so they drop out; they have almost no impulse control and are very slow to learn anything new. They probably will never have a job and are doomed to welfare, begging, theft or dealing. These abused kids should not celebrate Mother's Day.

Automatic dustpan!

2011-08-09T16:15:00.003-05:00

I got the very cold spray on my forehead something a bit iffy with regards skin cancer. My dermatologist is so lovely and frank, he really treats me as an equal in deciding my treatment. I really enjoy that. He asked if he could check my back and chest, so I said do you want me to take off my T-shirt and he said "yes if I was Ok with that", I reminded myself I am 71 and should behave totally properly so I took my shirt off, he looked and declared me to be safe from pre-cancerous thingies. Amazingly I managed to do this without any smart arse comment, could I be on the verge of maturity?

A very dear friend showed up this afternoon to share some wine and wish me Happy Birthday, he is a most interesting person; Sel and I agreed we always learn something from him, we don't have to agree with each other but we can learn from each other. I asked him for his opinion on a plant I am nurturing, he thinks it is a weed. However it is a sturdy weed and I am now curious as to what it could be? No it is not anything illegal,more like a big bean plant.

Our upstairs person has lent me a marvellous machine it is a vacuum powered dustpan. It is ideal for people with lots of pet hair and we have lots of pet hair!
It is like a small computer tower but it has strong suction so you sweep the dust to it and then turn it on and it sucks up the dirt.

The funny thing is that I can sweep easier than vacuum. while sweeping I can lean on the broom, so I can catch my breath, but bending over to pick the dirt in a dustpan really makes me puff and blow. With this little machine I sweep slowly over to it give it a tap and it quickly sucks up the dirt and stops. I have never seen anything like it, for me it is perfect.

I emailed my brother as his children are in the family home close to the unrest in London, the old street where I used to go shopping with my Mom is all boarded up, but my bro says that his kids were not too worried as between the shopping street and our family home is a steep hill, I never thought of it as steep when I was a kid, it would probably wreck me now, but it is a deterrent to rabble rousers.