Don't expect coherence. But then again, do you ever? Non sequiturs 'm I.
I watched bit and pieces of the VP debate during commercial breaks from Supernatural
. I much preferred SPN. I'm really loving this season. Palin's voice - like Bush's and McCain's - makes me want to throw things at the TV. I even get that way with Obama. But Biden I could listen to. Must be that blue collar calling to me.
I've been sick for the past two days. I think I have a head cold on top of a lupus flare. Much suckage ensued. I've been sleeping a lot, so that's kind of good. Sort of. Except that it means that I'm not keeping up with my end of the chores. I hate feeling irresponsible and slug-like. I felt worse today than the day before, so I'm hoping that it's peaking, and that tomorrow will be much better.
I love my cats, even the ones that aren't really mine. They're actually kind of fun to hang out with.
I do so need a life.
And speaking of which, I had another meeting with my rheumatologist, Dr. Pope, last Monday. The upshot is . . . this is the rest of my life. The tests are all done and loads of stuff have been ruled out. I don't have cancer or diabetes, I do have some brain involvement (incredible shrinking brain!) but it's not terrible and my central nervous system is OK. I don't have MS (yay!), but I do have peripheral nervous system involvement. My heart, lungs, and liver are all OK. My kidney is a bit fubar, but it seems to be stabilizing - not getting better, but not getting worse, either. She thinks that I have Lupus overlapping with Sjögren's Syndrome
. It sounds about right to me. I also think that I have psoriatic arthritis
, but I haven't asked for a specific diagnosis; it just fits with my symptoms.
She doesn't want to see for another six months, just to check in. I still have to have regular blood work, but it's been cut back to once a month instead of every other week. That was probably the best news out of the whole meeting :)
I see the nephrologist, Dr. Vitou, in another few weeks, and I expect that that will be my last big meeting with her, too. She'd ordered a big blood test and 24-hour urine collection for me two weeks after I stopped taking prednisone, so we'll be discussing the outcome of that. Then I get to pepper her with questions about my kidneys. I still don't know if "chronic" in my case means forever but stable or forever with an inevitable slide into complete kidney failure. A nagging question, that. But really, if my tests this time come back with no big changes, I'm guessing that I'll only need to see her twice a year, too.
I have an appointment with an ophthalmologist next week (ten months I've waited!), but I'm not expecting anything nasty to come out of that one. Probably a referral to an optometrist for a new prescription because my vision is going downhill. No real biggie.
So this is it, then. The rest of my life with a chronic illness. I was telling Dar that I don't quite know how to wrap my brain around that yet. After nearly two years of tests and specialists, I think I was hoping way back there in my incredibly shrinking brain that someone was going to fix me. None of this stuff is curable, but still I had that unrealistic hope. Which now is quashed. I was hoping, if not for a cure, then at least a means of putting the symptoms into remission - no more pain, no more fatigue, and I get to be the cranky workaholic that I used to be. Now I just get to be cranky :)
The new challenge, then, is to shape a life out this that is worth living on my terms. I've put off so much because I was waiting for all of the medical outcomes to give me some direction. Well, they're mostly all here now, and all the proverbial cards will be on the table by the end of the month. I'm still hampered by my lack of a permanent work visa, but I'm told that I should have that in another few months. I'm anxious about that, because so much is riding on it. In the meantime, I need to impose some kind of order on my life so I can get a feel for what's possible in the way of work, either volunteer or paid. Yes, feel free to laugh with me - or at me - about that.
I've always wanted changes in my life: new directions, new challenges. The difference is that I usually sought them out, and not the other way around. Time to start coming up with some recipes for lemonade for these lemons plopped down on my lap.
But right now, it's time to sleep. Again. Some more. Some insomnia-filled night I'm gonna look back on this wistfully. I need to remember that :)