Yummy Pred

I've been in flare now for quite a while, as you know if you've read this blog before and heard me complaining about it.

Last week my rheumie doubled my steroid dosage and told me to call this morning if I didn't feel better. I don't. I've gained four pounds, but I don't feel better.

In fact, I feel like I'm wasting my life away, lying in bed without even wanting to read, mostly thanks to ongoing migraines but partly due to fever and other sx's, too. I don't have the energy to *do* anything, but resent not having accomplished anything at the end of the day, as well. I thought I'd accepted my limitations a long time ago, but when they become more restrictive, I still kick at them.

So I call back today and find out what our next step is. Yet MORE yummy pred? Increasing my chemo dose to what it was when I was first dx'd? (That worked, toxic as it was.) Can't put me back on Plaquenil... so we have limited options. I sure hope my divus doctor thinks of something though, before I lose what's left of my lupie mind. The world is getting tired of my excuses, and I continue to be tired of being tired!

Welcome to flare?

Have a nice day.

Life In Lupusland

Tonight I'm sitting here with about two degrees of fever, a very sore throat, joint aches, and severe fatigue, missing my older son's evening baseball game, and seriously resenting it. Most of my discomfort probably comes from inflammation due to lupus flare, though I almost undoubtedly have a strep throat as well. It doesn't help that my rheumie (rheumatologist) promised to call in an order for antibiotics on Friday and didn't, so while I was looking forward to getting better this long weekend, I have to wait it out until Tuesday to call the office back instead.
Generally, I'm the one who's out there encouraging lupus and other AI patients that there is life after dx (diagnosis, to you who are not professional patients). Admittedly, it's never the same as before you got sick, but you can have a pretty good quality of life, if you take good care of yourself and plan your activities carefully.

Not tonight. One of the insidious things about these diseases is precisely that by definition (chronic, incurable), they don't go away. I've lived with mine for over twenty years now; it's not that I don't know what to expect, or how to cope with them. But just every now and then, I get really sick and tired of being really sick and tired. I want to scream "It's not fair!", pound on the desk, demand a better body from whoever handed them out. I want just one single day of being a normal middle-aged woman -- one day without 13 maintenance medications, a need for at least 12 hours of sleep per night, and pain pills . Would that really fix it? Of course not. But it's appealing as all hell anyway.

I know I'll probably wake up tomorrow morning still feeling crummy, but able to go back to accepting my lot: that flares come and go, and this one will eventually go. That I'm never going to get "well" or even better, because I'm past any hope of remission and my health is gradually deteriorating. That I'll be lucky to raise my kids -- I'm lucky I've already outlived my prognosis twice. That all I can do is the best I can do. That means that I can't commit to anything that would require me to be out past about 7:30 at night, because I cave in and have to go to bed around then. And I will resign myself to those things again and be ok. After all, fighting with the facts is pointless and merely adds to my stress, and we all know that stress causes flare!

Meanwhile, I can't help wanting that one day. Me and every other lupie (lupus patient), I bet.

Have a nice day.