Jan. 11th, 2017

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I figured out part of the passing out deal. Two days ago we stepped the Prednisone from 10 mgs to 5 mgs. I'm on this for another week and then off altogether. So withdrawal symptoms are still clear and present, one of them being vertigo and weakness. With how long I've been on it, it could take another week after I'm at zero, no less, before it all goes away.

But I am sleeping later. My average wake up time is now 4:30 AM. This I can live with. Sometimes symptoms still wake me up (such as at about 1 this morning, in which I rolled out of bed, dashed to the bathroom and nearly passed out while vomiting. THAT was fun.) On one hand and then on the other.

I'll have to get that list for you, Disgruntled Girl. I have leaflets and stuff from various nutritionists, but it's all a scatter of just food names. No real idea on how to put it all together.

I guzzled as much water as my stomach could take yesterday and intend to do the same today, as I'm still experiencing the whole "Whoa there, sit down rightthisfuckingsecond, no matter where you are, or you're going to fall down and hit your head on something." Because that would be my luck. It wouldn't be a graceful fall. I'd chip a tooth or give myself a concussion or something.

I was never a graceful person to begin with. Clumsy and completely lacking the ability to judge where I am in regards to my surroundings. Thanks to the prolific MPDG, though, most people thought it was cute. Lupus? Took me from "adorkable" clumsy to just plain clumsy.

It's amplified a lot of the things that I could get away with before, but now cannot. Whereas I used to brood (all mysterious like), now I'm simply grim. Whereas death as a casual topic of conversation used to be a whimsically morbid trait, now it bothers others, since I was actually close to dying.

Not that I want to be a MPDG. Not anymore. She's too exhausting a trope to even try to pull off. But there were silly traits and quirks I had that are either gone or extremely hard to get to these days. Things that I liked about myself.

Jesse has finally acquiesced to the idea that this disease has changed me, personality wise, and will continue to do so. He no longer goes on about me returning to the bouncy ball of frantic energy that I was when we met. As the months roll by, and I settle more and more into this disease, he says he now sees what I've been seeing - that parts of me inside, perhaps vital and integral parts, even - are changing. For better? Doesn't feel like it. For worse? That seems more like it.

Time will tell. Ten years from now I'll re-read this and see things that I am completely blind to now, while in the middle of all this. Ten years from now I'll re-read this and hear nuances that I'm currently unable to hear, thanks to the insanely high decibel volume my body is screaming at. Ten years from now. As time passes.

I'm counting on it.

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