State of Confusion

Oh, Rhupus, how you do torture me with your promises of remission and then sudden flare ups that erupt so violently throughout my body. So, I was feeling pretty good but then all of a sudden I started getting this pain in my back. I can't stand for more than 5 minutes or walk more than 15 feet without the muscles in my lower back coming together in a knot an twisting around the area where my kidneys are and it cripples me. I can't stand up straight. I fold and breath heavily and pray that I find a seat and soon. Most interestingly about this is that the rest of my body feels great ! Its nice not having a lot of pain even if I know that walking or standing can cause some pain. My spine is still causing me some pain but I am not living in the same world of pain. But then here comes my systems . . . all of a sudden I have a fever, the doctor thinks I've had it on-and-off for a while but since most people don't take their temperature everyday I didn't realize it. I've had a fever of around 100.4 for 2 days now . . . but I've felt hot like this for over 2 weeks, even sleeping with the window up. I went from bieng the personwho is always cold to bieng the person who sweats. And I never sweat ! Even back in the day when I was young and ran track, I rare broke into a sweat, it was always one of those things. But now I can sit in one place and just start sweating. I get blood work done every 2 weeks and consistently my white blood cell count is getting higher. So they are looking for infection, although they can't find any at this time. And the fever doesn't seem to wanna break so its just remaining vigilant and getting rest. The upside is that I get all the whole fruit bars I want ! For some reason, I have been having something like acid reflux but much more violent and a lot more like vomiting. The interesting thing is that I've cleaned up my eating . . . I get in at least 6 servings of fruits and veggies everyday and rarely eat fried foods and have cut down on my red meat consumption . . . so it may not be the diet . . . its just sort of waiting and seeing. My rheumatologist is perfecting my complicated cocktail . . . part of that is weaning me from steriods. I can't wait to get rid of the steriods. The doctor thinks they are doing more harm than good. And I really can't take this weight gain or the big ole Barry Bonds head and face thing. Hoping it won't take long for my head and face to go back to normal and that the weaning isn't too much. Sometimes being weaned from steriods can be difficult and there are lots of side effects. But I'll take the side effects of weaning over the side effects of having steroids in my body. On and off throughout this disease I've had crazy violent muscle spasms in my calf . . . and as is par for the course, it has gotten stranger . . . the muscles spasms now start in the front of my leg and are similar to a shinsplint but much more painful because it goes from the foot up the font of the leg almost to the knee . . . never thought much about those muscles until they started waking me up every morning. Of course they don't just exist on their own, the muscles in my calves have to join in so it is charlie horse-a-pa-looza ! and this usually happens for at least 15 minutes but as long as 45 minutes. Oh, wait, I should say, that its in both legs simultaneously. I am enjoying physical therapy. And it seems to be helping. I have been prescribed 6 more weeks which will be 12 weeks of physical therapy and hopefully that will be key to my ability to walk and move consistently. I am also going into the pool on Monday ! It will be wonderful . . . I haven't been in a pool in like 15 years but I'm excited because I am getting healthy - I have to . . . I can't, don't want to and refuse to live like this - trapped by a disease. I told my rheumatologist that I think of my body as a violent place where nothing good happens and that I can't control. She was comforting and is working with me to create the perfect cocktail that will hopefully control all of this . . . Oveall, I feel like I'm positive and in good spirits although sometimes I get down and the pain wears on my psyche. I am definitely in a Season of Healing because I am going through processes of healing and diminished pain whereas before I started treatment it was ongoing pain and misery. I feel confusion because on so many levels I am doing better but on other levels things seem to be getting worse . . . but every morning I wake up, pray, remind myself that it is a process and I'm in the midst of the Season of Healing . . . FORWARD MOTION !