more up and down

Monday I woke up feeling much better, but still with the excess fluid issue going on. Knowlton and Kiely are aware and have spoken at length with each other, but when they talk to me... they put it back off on the other doctor. My CREAT turned out to be 2.5 (yay!!!!) and they said the fluid retention was from the high dose steroids. I am to start tapering back down to my normal maintenance level, and they will try anoter immunosuppressant. Last time they did that, I got pneumonia. I have not been able to get down past 40mg of Prednisone due to those damn "nerve attacks." Yesterday, I dropped to 30mg, and they started back up again. I only have a few seconds warning, but if I'm near a chair and sit down fast enough, I can nip them in the bud. Its just when I'm going from place to place and they start... its a nightmare. I can handle the little ones, but when they get going full force... I feel like I'm going to be paralyzed, and then my next thought is... "I'm gonna die." I use the walker all the time now. I dont feel safe without it, as I've fallen 34 times since May 15th. I've got bruises everywhere, and a BIG, nasty bruise on my shin that hurts if you even glance at it. The home health nurse came today for the first of 3 days of IVIG, and as usual.... I am totally wiped out. Thursday and Friday will be repeats of today, and then it will take 4 to 5 days to start feeling better/recover from getting the drug. Mom has been a complete angel... taking care of every need and being so patient and loving. She took me Monday to obtain a wheelchair, so I was not housebound anymore. It was so nice just to be able to go to Walgreen's and shop by myself in the wheelchair, while she did her own shopping. Freedom is everything. I went too long without IVIG that it was getting almost impossible to move around, get out of chairs, etc... I have been doing a lot of crawling (like an animal) from place to placee. I am getting really good at figuring out ways to get myself around without calling for Mom every 2 seconds. Creativity is working in my favor here. Other than all that.... I'm really wanting a Maple Syrup or Vanilla Yankee candle for my room. I dont know why I'm on a Yankee Candle kick... maybe steroids dont just cause food cravings! :)