Always Ain't Forever

I am compelled to blog. So much has been going on with me and I am HIGH anxiety right now. Everything bothers, frustrates, angers or appalls me. I need something, not sure what but I need something. I am thinking I need to get away but not sure that its a change of scenary . . . if my issues are internal the change of scenary means nothing . . . but if its just the stress of all that is happening or that I'm going through then the change may do me good. I need to rest . . . but its difficult because I don't like to sit around and do nothing. But it is obvious that I would benefit from a vacation or the opportunity to not feel the stresses of this disease. So since last I blogged I have suffered a fever of over 100 for over 1 week . . . apartenty by infections hide and they could be caused by anything and be anywhere. The lack of an active or agressive immune system is devastating me. Now that the fever is gone, I feel like crap and am in intense pain. The pain that was in my lower back now begins in my lower back and the spreads up into my back and goes onver my left shoulder blade and travels down my left arm and stops around my elbow. Just way too much fun for one person. My rheumatologist is wonderful. . . she doesn't mind my almost daily calls and does all she can to help me. Soon I will be having my back scanned. Hoping that will tell them why its happening. And my spine just hurts . . . I am dealing with so much and although I know its temporary it is taking its toll on my mental and emotional being. I am some sort of roller coaster . . . I cherish the good days and lament over the bad ones. I spend too much time alone . . . for some reason people think that I am always busy but that is not the case . . . I am alone more often than not. Physical therapy has been good to me. There has been signifcant improvement in muscle range and strength, which is part of the reason my back is such a mystery. Unfortunately, I am not able to continue physical therapy right now because I need to rest as much as I can and the pain is, simply put, severe. I can no longer walk more than 15 feet without the pain taking over. I have the best co-workers because they are always willing to help and they look out for me . . . even my boss is kind enough to find out if I need lunch and will go get it for me. I can't deny the blessing of friends and family. I often think that I need to stop whining or even talking about the disease but right now it is all consuming. I am in constant pain . . . its as hard to explain as it is to live with . . . today a friend touched me and it shot pain throughout my entire body. I had to tell her not to touch me and I'm afraid I hurt her feelings. It's hard to explain that the pain never truly goes away . . . I want so much to blog that life is grand and the pain is rare. I want to blog that both diseases are in remission. I want to blog that I am in a good place mentally and emotionally. I want to talk less about my disease and not feel compelled to tell everyone. I've gotten better at telling people the truth about how I feel but now feel guilty that I'm burdening people with my issues. If I've never said it, Rhupus is not your friend. But I am grateful to God for the friends that surround me and pray for me. I am blessed with a circle of support. And I know I'm going to get through this . . . not sure how long it will take or what will happen in the process but I know it won't always be this way . . . As my grandpop would say, Always aint forever.

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 !