My roomie is going to see her new doctor tomorrow. Please pray that the doctor will have some good new ideas to help Devon!
This weekend has been pretty tough. I am so tired that I literally could not get up for most of yesterday and today! Last night, my friend had to help me to the bathroom to brush my teeth - he held me up, because my joints are so weak I kept falling! Haha! I did feel rather vindicated when I heard the rain last night - the changing weather definitely makes my joints worse. Today I "streamed" the church service and then slept on and off most of the day - I am so so tired, and I welcome any time I can get to sleep! It felt great. I'm reviving tonight, which is good! I'm hoping that the weakness and tiredness is from cutting back so much on steroids, in which case I should feel a lot stronger tomorrow or Tuesday. Hopefully most of the joint stuff is from the weather and will also improve tomorrow. I'm still struggling off and on with blockages, which hurt, but they've been resolving after a few hours. I figured out that continuing to eat helps them resolve more quickly. Now if only I could figure out what is causing them...
Twitchy is not doing well. With pouchitis, if an antibiotic is going to work, then you are supposed to see improvement within 72 hours. I increased the antibiotics on Wednesday... c'mom, antibiotics, you can do it!! Kill those little germs! The theory is that my screwy immune system is reacting to the presence of normal bacteria by attacking Twitchy and my joints! So if they can wipe out the bacteria that are triggering my hyper-sensitive immune system, hopefully my body will settle down and stop attacking itself. I forgot to mention that the mainstay of pouchitis treatment is these special probiotics called VSL#3 - but they can't be used effectively until I've had surgery #2. That's one of the treatments they want to do, one of the reasons they want me to do the next surgery.