Monday, July 11, 2011

Looking up :)

Today - things are much better!
My mouth pain is gone for some reason, my eyes are better, but my ears are still pretty full of fluid.

I bought a $25 gift certificate for $3 a week or so ago, so we went out tonight to use it. I was able to eat some fried mushrooms and then I had half of a chicken hoagie (with most of the bread pulled off). I am actually hungry again, which almost never happens. It's usually a chore to try and eat, but my calories have been really low for the past week. I'm supposed to be eating 2200, and I am lucky if I hit 1000.

That said, I'm going to take this pain free moment and cook some cabbage soup and try to enjoy it before something goes wrong :D

I have a rheumatologist appointment Wednesday - he's supposed to change my medication but I was doing a bit of research and found out that I'm on HALF the dosage most people are, and then you take into consideration that I'm missing half of my intestine and not absorbing all of that, the 100 mgs I am taking daily compared to 200 normal people take, likely isn't doing anything.

I'm going to ask why I'm only on half the dosage and double check he understands I don't have full absorption of medications.
I believe the next medication of choice was going to be CellCept, but I can't recall for sure.

Sometime this week, I am going to post something I found on Aetna's website showing all of the tests and procedures I've had done since this started. It's mind-boggling, that's for sure!

Saturday, July 9, 2011

So, my mouth is pretty terrible right now.

I dared to venture out and eat something NOT soup and I'm paying for it dearly. My hands are swollen, my mouth is peeling, and my eyes are draining pretty badly.

Guess it's back to won tons for the next week so I can recover.

Ive pretty much only been drinking lattes for 2 days because I could use the milk calories, and because its just SOO soothing.

I've lost more weight, too - 5 more lbs making it 260 total, and 165 since I got sick.