Thursday, September 22, 2016

Why I (sometimes) hate (some) doctors

Specialist doctors seem to think the patients have all the time, energy, and money in the world for them to poke around in my health profile for something new to pin on me. The mere suggestion that there might be something awry in my body sends them scurrying away to book me in for tests and then bill me mucho for the privilege. I've got two specialists at the moment who are determined to find something wrong with my breathing and my heart. This all results from my little adventure in July when I fell and hit my head in the bathroom and was curled up in a cramped position when they finally got me out after 2 hours. I was not breathing normally and was generally not on the same planet with the rest of the world. Within 24 hours I was breathing normally and was back to my normal abilities and personality. The doctor officially in charge of me was amazed at the transformation and almost couldn't believe I was the same person. My friends assured him that this was the real me.

However, the breathing problems have got me sent off for breathing tests (I passed), an exam with a respiratory specialist, who tried his best for me to give him answers to fit his diagnosis (sleep apnea) although I have none of the symptoms. He persists in ignoring the sleep problems that are associated with fibromyalgia and tutt-tutts over me taking sleeping pills. Despite my protestations that I do not have sleep apnea (the late Bear did and I know the symptoms), he's got me signed up for a sleep study. Doesn't he realise that CIDP is at the top of my list of diseases to conquer and I don't have the time or energy to chase ghosts?

I have the same trouble with my cardiologist who is convinced I have a heart problem despite doing lots of tests finding nothing. He wants me now to have an angiogram and I have put him off (the doctor and hospital scheduled it without consulting me) and if he keeps pushing I will insist on waiting till J is here to go with me. I have no symptoms of heart problems.

If they would ever ask about fatigue or pain I would give them a long list of issues but they don't, because I'm too busy denying that I snore. Don't they get that my number one issue right now is regaining my balance so I can walk again? Once that's dealt with I might have the leisure to have my breathing investigated, etc. Each specialist wants to treat his own area as the most important thing to me. And none of them know a thing about fibromyalgia and therefore do not link symptoms to that as cause. FM has a sleep disorder associated with it which is why I take sleeping pills.

Wednesday, September 14, 2016

Life in the slow lane

I never thought my life would come to the imperceptible snail-like pace it has devolved into.  I had so many activities that I was waiting for retirement to indulge in, but I hadn't an inkling (who would?) that my body would pull the rug out from under me and make simple tasks seem like major achievements. Today I took a shower and washed my hair, and wound two hanks of yarn into knittable cakes using my ball winder and swift. That's it. Making a sandwich and heating up a can of clam chowder was dinner. I can shuffle/stumble/stagger around the house without my walker but am super cautious.  I haven't fallen in 3 weeks and would like to increase that to a month at least. Aside from those Everest heights, I read, sleep and watch TV. Oh, and go to an unending stream of doctor and other health related appointments. A thrill a minute here.

To indulge anybody still there who has an interest in my fibre pursuits, I am knitting a pair of socks for Miz B, and about to try some simple lace scarves. I almost have a jacket ready to sew together. I am spinning a Romney and mohair blend that seems to go on forever. I have decided to abandon weaving because there is even less possibility of me being able to get on the floor and tie up the treadles on the loom. As mentioned before I will go back to quilting, and maybe finish the needlepoint project I have been supposedly working on for about 10 years.

I would literally not still be here without my cats.  They love me unconditionally, and anybody who says only dogs do that has never met my two furry children. The Imp turns 12 this month and Max 2 and they have completely different personalities aside from both being Burmese. The Imp is like a limpet who can sense a vacant lap from the other end of the house and immediately fills the void. She is mostly silent, chunky, and polished pewter. Max is long and lanky, full of energy, always hungry, and extremely vocal. Unfortunately, he doesn't have a normal cat-like voice but squeaks like a dog's chew toy. We have long conversations in his squeaky language but I don't know what we are talking about.  He's got beautiful chocolate Burmese colouring, big golden eyes, and a huge purr.  He chews through cords, loves his pet pig, which he is unstuffing, and carries a cat bed around the house, despite it being almost as big as he is.

There. no bee in my bonnet tonight. Just an attempt to let you know what goes on here. I hope there isn't another rare disorder out there with my name on it and that I continue to improve from my immuno globulin infusions. Five more monthly doses and I will be done  Since nobly knows for sure how they work in curing things I have no way of knowing what the next five months will be like.