My CPK levels were a tad bit high yesterday. But, not that high...so, I'm still saying we're in the normal range ;) I think that Dr. Lowery will continue to let me decrease my prednisone. Shouldn't be too much longer now and I'll be totally off of that stuff. I think I'm going to plan a celebration for the day I take the last one! There really is nothing I like about that drug.
Then, the next step...we're going to try going longer between IVIg infusions. I'm a bit worried about it just b/c I have the attitude of "don't fix something that isn't broken"...I mean, it's working, why mess with it? But, I know that insurance isn't going to keep paying for it without proof that I still need it and the only proof that they will accept is tapering me off and seeing if I become worse. So, we shall see.
I've not been able to make it to the gym much in the last two weeks b/c of medical things, but I'll be getting back to that too. It was going fairly well. Progress was slow, but there was progress none-the-less. :)
Had to have some swallowing tests, and EGD, and some other test...so, we already knew that the muscles of my esophagus had been affected and were causing swallowing difficulty. But, I'm also experiencing some severe reflux. So, now I have ulcers on my esophagus and they need to heal. And, something about my food is not digesting, so it's sitting in my stomach...I guess that is causing the reflux? who knows. But, I have a couple of new medications and need to make some diet changes. But, the list of things to eat, I normally eat anyway, so that shouldn't be too difficult. We shall see.
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