Here's what's been going on:
* I met with my POTS specialist recently. She feels I’m doing so well that she’s putting me on ‘maintenance’. To her, working a few hours a week and doing nothing else is enough for me. Seeing as I can’t do enough to live on my own and support myself, I’m frustrated and don’t think I should be in ‘maintenance mode’ yet. But, that will be something to bring up at my next appointment. (She ushered me out incredibly fast yesterday because she was behind schedule. I’m a bit miffed about the whole thing.)
* I've been seeing a vascular specialist, over an hour away, to try and find the cause of my recurrent purple hand and foot. For no apparent rhyme or reason, my hand and/or foot will turn purple. It started almost a year ago, and happens several times a day regardless of temperature, or anything known to aggravate it. I had many, many tests that revealed some startling things, but that were inconclusive as to why this keeps happening. After everything, what was concluded is that I have something called Primary Acrocyanosis. Which is just a fancy term that says parts of me turn blue with no apparent cause. I have no underlying vascular or cardiac problems (like lupus) and the blue-ness tends to happen on it's own. Basically, my blood vessels spasm and parts of me turn purple. While some POTSies have secondary acrocyanosis (AC in relation to having an underlying disease), as I've had POTS for several years now and this is relatively recent, mine seems to have occurred on it's own. I spent hundreds of dollars, and put an insane amount of stress on my body to find out that I have yet another rare (PAC is extremely rare), incurable condition.
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On the positive side:
* I handled the holidays very well. My POTS was kind to me and I was able to attend two family functions for a short time. I was also able to eat- something that is difficult for me given my constant nausea. I'm very grateful for that.
