I started back to work yesterday. Excited to be headed to a new school, working with a new teacher, seeing new faces (except that mood swings made me all nostalgic for last year and missing my kids :( ). I figured, I'd had the whole summer off, I was ready and willing to be back at work. Sometimes, though, the mind is willing when the body is not. I got home so exhausted I could barely stand up and was (am) still suffering some ill effects.
I am hoping that this is not a vision of the future to how the rest of the school year is going to be. Granted, I did have to start on a new chemo therapy regimen. I already wasn't tolerating the Imuran really well, but with my recent headaches, my jaw freezing up, ankles/knees/legs/feet swelling up, and a recent onset of eye/ear/and nose issues (possibly relating to the MRSA) it was decided that I should INCREASE my dosage from 150mg per day to 200. This is uncommon, from what I understand 150mg is about as high as they like to go. We discussed other chemo options, I think I will flat out refuse Cellcept if it is offered, but my rheumy did broach the subject of Rituxin which has been shown to work well for ANCA associated vasculitis. It is only available through IV, though, can be expensive and has a side effect (uncommon I have been assured) that does something to the brain.
Now, when I said I haven't been tolerating the Imuran that well I mean that it made me really sick. The methotrexate also made me sick, but I find myself skipping doses of my Imuran just to give my stomach a break. I was then given another pill to help ease my stomach, but I do have to go in for an ultrasound as they are worried that I now might need my gallbladder removed. UGH.
I hate going to the doctor and having them add more pills. I wanted to reduce pills again. I don't even get to reduce my Prednisone, unfortunately AND I had to have a blood pressure medication added in. I am up to 8 pills a day. 8! That's without taking any antibiotics or pain medications. I feel like I should rattle when I walk!
The blood pressure meds are the most upsetting though. I have never had high blood pressure in my life, just the opposite. Once I started showing symptoms of the Wegener's (I spelled it right that time!) my bp has been creeping up. Finally, it got to the point where I had to start taking something for it. This makes me feel like I have failed in some way. That I wasn't able to make enough life style changes to help me keep it in control. I worry that people are going to judge me on it. I have gained weight from my meds, and the Pred itself, also contribute to it. It's frustrating. Life sucks right now.
So I'm trying to take my lemons and make them into lemonade (no fancy alcoholic drinks for me, rats) and do the best I can to fight my disease. It may seem like I'm trying to really plug this thing, but if you are in or know someone who is in the Salt Lake City area please let them know about my fundraiser http://www.facebook.com/event.php?eid=182740895131841 It will run Saturday and Sunday, Sept 17th and 18th (if you don't have a fb, send me a message and I can get you more information). Just having people come helps spread awareness which does wonders to help research into causes and hopefully cures. I don't want to spend the rest of my life rattling like a pill bottle when I walk. Please. Think of how my ninja training has suffered.