Tuesday, August 25, 2009

rough weekend brings on the bargainning stage

My rough weekends since June have mostly involved emotional upset, and usually over the loss of, well, THE loss.

My health has sorta stabilized since I got back - I'm back to receiving O2 everyday, sleeping in my own bed, having fresh good food (when I have an appetite that is) and resting when I can.

I've been in a little bit of a waiting game. I've been medically approved for that $2600/mth USD drug. We're just waiting for the feds to fund it. What that means is that I don't have to have a catheterization to prove that I have PAH - a test that's required for the application process. I told my cardio-nurse that they would have to figure out a way to allow my 24 year old cath tests as submissable or find another way. I was not, will not have another cath. I'm sure the techniques have improved since the 1980s but if I could avoid it at all costs, I would.

And so, they accepted my 24 year old tests: the first part of the process is in place.

This drug won't actually change anything - she hopes that it will give me more energy for a better quality of life. I told her I wanted to work full-time again (kinda have to) and she of course, shook her head (in the negative). Then the ominous warning came: this won't lengthen anything. Yes I know it won't. But yes, she wanted to make sure I wasn't raising expectations. The heart muscle is dieing, no drug will stop that.

So while I wait for this Mercedes of all drugs, I decided that I need a new career. Yes, with less than 3 years less to live I want to change direction! I don't want to teach anymore. It's not that I don't like it - I love summers off, I love sharing my passion, but I have no energy to stand for hours, talk non-stop for hours, and in some cases schlep other people's canvases. (For mine, I'd do it, for others, I'm tired of it). So I've decided that I will most likely start looking in, yes, the devil's playground: the government.

It's taken a while to come to terms with leaving one of my studio's. Now, I'm ready. I'm willing to leave it. I'm willing to work in an office. It can't be that physically demanding? I'm tired of being economically challenged.


This decision's been sneaking up behind me, but I became more comfortable with it when I had a little "episode" over the weekend. My BP bottomed-out and I passed out. While I was going down, the drama queen in me (that coudn't recognize the newer symptons/signs) wondered if this was it! (I've become pretty good at delineating all sorts of different feelings, signs, symptoms in my body. You have to when doctors want to know if it was a hopy-glycemic shock or a hypo-tensive one.) That last second before I went down I thought, if this is it, it's over in a milisecond. An entire lifetime of love, friendships, heartaches, dreams, gone in one millisecond. It seemed so anticlimactic. Of course I came to and tried to sleep. The Wife slept with one eye open all night just to make sure my heart was still pumping. Apparently I was completely white: no blood circulating.


This made me realize that as brain-numbing as the government is, at least they have benefits. If I can't stop this disease, I sure as hell can support it. I can (with money/benefits) do all that I can to support proper regulation of bloodpressure, accupuncture to support renal fucntion, etc. etc. etc.


Perhaps bargaining has settled in!