Round 12 Day 1!

Yesterday started day one of my IVIG infusions. I was so tired yesterday, that I couldn’t get this post out. 

I can’t believe I’ve been on IVIG for a year now. It was a rough start at first, but the side effects have gotten better. At my last doctor appointment in March, my doctor talked about taking me off the IVIG after  a year. I really hope he doesn’t. It’s really helped me better then any other medication I’ve taken. It’s not perfect, and doesn’t help every symptom or ailment, but it works, and I don’t want to stop. 

I actually think something else is going on with me. Doctor thinks it’s just myopathy, but I believe I might have some sort of muscle disease. Two weeks ago I was in the emergency room, as I was having what I thought was left kidney pain. It hurt so bad, and I resist the emergency room at all cost. They did all kinds of test, but told me it wasn’t my kidneys. My ck level was up, so they gave me two liters of fluids, which brought the level down somewhat, but they think my pain was maybe a muscle strain from going to the gym like the doctor wanted me to. I’ve been going to the gym, just walking on the treadmill slowly for two month now, but I guess exercise isn’t good for me. Trying to get my doctor to believe this isn’t going to be easy, but I’m going to prove it to him. Before I started exercising, my ck level was in the 400’s. In the ER, it was in the 1600’s and came down to the 1100’s after fluids. After this week of IVIG infusions, I’m going to get lab work down, because I have a doctor appointment on June 28th. I’m hoping my ck level has come down, and I can show this to the doctor to prove it was because I was exercising. Not that I want to stop exercising. I really need to lose weight badly. I’ve gained so much wait since being sick, so I enjoyed going to the gym. I don’t know what else I can do to get some exercise, and lose weight without killing myself. Any suggestions?

Three more days this week, then I’m done. A whole year has gone by. I can’t believe it. I’m hoping someday, a better medication will come out for lupus, and put this shit into remission. I’m so tired of lupus ruining my life! 

Have a good week people!


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