Monday, June 14, 2010

So Much for Acceptance

So, the only that's "changing" is my pill dosage....AGAIN.... This is not going to be a positive entry, so if that's what you read for, close the window now.

If you read a few posts ago where I said things were "looking up" and that doc said he was seeing improvements...well you can feel free erase that from your memory. Blood tests show something different. My CK levels are up, which means muscles are damaging at a faster rate, like before, when we thought the process had slowed, but apparently not. Guess that would explain all the aches and pains I've been having, though yet again, denial set in and I tried to blame it on overworking myself.

With CK levels up, it means doc wants me to up dosage on steroid (Prednisone) AND on Cellcept, like A LOT. 20mg of Pred (I'm at 10 right now) and 2000mg of Cellcept (1000 right now). So much for prepping body for babies in 2011. Looks like Lupe's going to have to suck it up and be a 40 year old man with a 5 year old. (Sorry hun)

So, back to 12+ pills a day. I really don't know how I'm going to do this, I barely manage the 7 first thing in the morning. It's really not feasible to stop teaching to pop a few pills, and I can't take them on an empty stomach so I'll always have to wait till lunch at least. Ughh, I just feel like a failure. I know popping pills seems like such an easy thing to do, but along with everything do I SERIOUSLY need another reminder that I'm sick!? (Told you I wasn't going to be positive)

I'm not in acceptance mode today, or denial, I'm in anger and depression. And unfortunately there's not enough wine or cupcakes or pizza in this world that could make it any better. I have failed myself. I was supposed to be off the prednisone by this time, I set a goal, I was trying to reach that goal, and somehow I've only fallen backwards. My outside appearance is defying what's happening on the inside, and no one, not even me realizes it.

Back to the drawing board. Maybe if I could afford a housekeeper or a live-in nurse or a personal assisstant I'd be better at this whole taking care of myself thing, because I'm not super woman, I need some things off my plate. Someone to at least do laundry so I can cook, or someone to organize my pills for me so I can just take them, or someone to walk up to me with a bottle of water a sandwhich and my pill box so I can remember to take them, or someone to cook for me. This is all just too overwhelming. Back to square one, back to feeling miserable side effects, being terrified of the sun, anxiety, insomnia and now, more than ever frustration at feeling completely and utterly like a failure.

Maybe something will change, and I'll feel better next post. But until then, it's popping pills and sleeping till my next doctor's visit in 6weeks, to get more blood drawn to see if I've gotten any "better."

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