Wednesday, November 23, 2011

Long Time No Write

It's been a LONG time since I just over a year. It's not that I haven't had anything to say. It's just that certain people were telling me what TO SAY and what I SHOULD and SHOULDN'T say on this space and I found it difficult to have my own voice with that kind of malarky going on. Hopefully, those voices have quieted down now and this space can be what it is intended to be...a place to work out the wranglings of learning to live with a creative Self inside an incurable illness and the changes that this brings to life.

What IS different between this time last year and now is that I've had a full year of rest. This time last year, I was diagnosed with Addison's Disease on top of Mastocytosis. For those of us unfamilair with Addison's Disease, it's basically when your adrenal glands (your 'fight or flight' glands) stop working. They stop producing Cortisol, a much needed hormone that governs inflammation response in the body so that it stops your body's joints from hurting, for example. Cortisol also plays a pivotol role in things like vomitting too because when my cortisol levels are too low I puke a lot. A LOT. It bites. It must govern body temperature too because since I started on Cortisol I've not been as cold as I used to be. This time last year I was driving my husband mental by turning the heat up to 22 degrees at the farmhouse and STILL being cold. Thankfully, those days are over. I can now keep mostly warm. As long as I keep a steady stream of Cortisol pumping through this body.

I don't like the idea of being steroid dependent the rest of my life. Quite frankly, it does my head in. As if I don't take enough medication for Mastocytosis. My Immunologist, who had wanted to put me on steroids for some time anyway, thought the Addison's diagnosis was a stroke of sheer brilliance. To his mind, being on steroids helps with the Masto. situation too. So I take 20 mgs of Cortisol in the mornings and 10 mgs in the afternoon. Unless I am under some duress or stress, then I have been told by my Internist, to double that dose.

Since the last time I blogged on here, we have also Winnipeg, the center of Canada. The climate is MUCH dryer than that of Ontario and is proving to be much more hospitable for my mast cells. I've heard this same sort of report from people in Arizona, only their reports are warmer. I wish I could say that I've been without reactions or anaphylaxis since we've moved here, but that simply is not the case. But my joints don't hurt with nearly as much fiercity. They still hurt, badly, but less so. My sinuses aren't so runny or clogged (either) and I need less Reactine. Mind you, I've had more nosebleeds, as have my children. Welcome to a dryer climate.

One of the challenges I face currently is putting together a health care team of the the calibre that I had in Ontario. I had a brilliant Family Doctor in Parry Sound; a great Immunologist in Toronto and a fabulous Internist in Parry Sound. Until this morning, I had had awful luck with Doctors in Manitoba...the only Doctor I had gotten to see being uninterested in Mastocytosis and unwilling to learn about it and not pretending about it either. However, this morning, that light shifted and I found a new family Doctor willing to take on my healthcare challenges AND willing to look after my children too AND he was nice. He thinks I need an Immunologist ASAP and an Endocrinologist. I am to get some bloodwork done asap and go back and see him next week to discuss my medication and actual needs with him without my children present. I got a great vibe from him. He didn't pretend to know about Mastocytosis (but knows about Addisons!) but is willing to learn. And more importantly, he didn't treat me like a crazy woman.

We've moved into a smaller, easier to manage home in Winnipeg. I've had a tough time adjusting to this smaller home but my husband's logic and reason has won me has his space saving solutions and this cozy little pad of ours. I've had to admit that he is right...THIS WAS THE RIGHT ANSWER. I can no longer manage to clean a big house or look after one. This is just the right size. I am no longer overwhelmed by what I can't accomplish but feel good by what I can get done because it doesn't overburden me AND we are all comfortable in this space. We've had to downsize a LOT of things and stuff in our lives to get here, but it was worth the effort. Our space is no longer overwhelmed when I'm too sick to get out of bed to deal with it. And when I'm well enought to deal with it, it's great too! There's no more feeling like a total failure when I'm too sick to deal with it all. We just wait for a better day and embrace it when it happens. :) I think we've finally figured out how to be graceful under pressure.

1 comment:

Anaphylaxing said...

So glad you're back and hanging in there! Love your blog!