Sclero-what?

The last few months have been pretty ordinary. I’ve had two appointments with Dr. Walker (my rheumy) which both went well. They were just basic, “How are you feeling?” appointments, which is fine since nothing has really been too different. I have really enjoyed working with Dr. Walker. I like his sense of humor, his personality, his knowledge. He’s been really great. He makes me feel comfortable and can joke around with me, yet still be quite caring. I’m glad I didn’t listen to others who told me not to go to him. If I felt like there was something others could do for me that he isn’t already doing, then I would request a referral, but I truly believe that he is doing all he can, and I really appreciate him. I mentioned to Dr. Walker at my October appointment that I wondered if there was anything I could do to build back my strength. He suggested physical therapy, so now I go to physical therapy every once in a while. My first physical therapy experience was interesting. Wel...

Well, I had a big nice post put together and then it got deleted. Hate when that happens. Let's see if I can put it all together again. I had a rheumy appointment on the 3rd. It was pretty basic. He asked how my stomach was feeling to which I replied fine. I mentioned that I have a spot on my leg that goes numb when I'm trying to sleep at night. It will burn and tingle and just go numb. I hate it. It happens when it gets too cold and when I get too hot. It doesn't make sense. My rheumy said that it sounded like meralgia paresthetica. He said he sees it a lot in overweight people, and tells them to wear looser clothes and lose weight. Since those aren't really options for me, he wasn't exactly sure what to do. It really isn't a big deal. Just another annoyance I have to deal with.That was about it, though. Then it was off to run some blood tests and get a chest X-ray to check out my lungs (which came back normal.) Because Scleroderma, ...

The last few weeks have been a bit rough. It's kind of ironic because I was  going to do a post about my mantra, "This is gonna be the best day of my life," and how wonderful everything has been, and then...well, it hasn't exactly been the "best day of my life." Remember how, when you were younger, and you could eat whatever the heck you wanted, as much as you wanted, and it had no affect on you whatsoever? Whether making you gain weight, lose weight, feel sick, it just really had no affect. My junior and senior years of high school, my favorite snack was chocolate milk and Funyuns. I could eat that and be totally fine, and not gain an ounce. Of course it helped that I was super active in athletics, but I very rarely got sick. I could eat loads of ice cream, seriously, bowl after bowl after bowl. It was awesome. Of course when you quit being so active, when you try to do those same things, it has a different affect on you. For the first 7 years after Gre...

The same week I got shingles, I actually had my next appointment with Dr. Walker. By then I was feeling much better compared to the beginning of the week. When he walked in he said, "Really? Shingles?" I should have told him that I blamed him, but I didn't. We just talked for a little, then he had me hop up on that bed thing (seriously, is there a name for that thing?) while he did his exam. When he pulled up my pant leg and saw my shingles he just said, "Oh!" I started laughing and said, "Yeah, I know." He then asked if I had questions. I asked him if this was a set-back in the progression the Cellcept had made, and he didn't seem to think so. I was taken off of the Cellcept by Dr. Carlson, and Dr. Walker just told me to wait until the sores had started scabbing over before going back on it. I have to admit, I was a bit afraid to go back on it because I don't want those dang shingles to come back. But he said that most people don't get t...

I didn't have my next appointment until January 22. I honestly didn't notice much of a difference between the two appointments, health wise. Everything seemed a little worse, but not too huge of a difference. the biggest thing was my weight. The first thing my doctor said to me was, "You're still losing weight." Then proceeded to ask why. I told him it's just a hassle to eat. It really is. I hate it. It takes forever to eat anything, and nothing really sounds good, so I just don't eat. I've dropped below 100 lbs, which is clearly unhealthy, but I really just have a hard time eating. Greg has been so good to try to get me to eat more, and I do try, but it's just so hard. (I'm a total baby, I know, but seriously...give me a break!) After that fun discussion, and him telling me I needed to eat more calories, he asked a few more questions and then did a quick exam. I asked him about my hands as they continue to tighten. I told him that my right...

I had my next appointment with Dr. Walker on the 21st of November. It was good. Just another check to see how I was doing type of a thing. He asked how the Cellcept was working, and I told him fine. He decided to double the dose so I would be taking 2 pills in the morning and 2 in the evening. He asked how the Raynauds was, and I told him about the same. He mentioned a drug that is similar to Viagra (can't remember the name), but he wasn't sure if our insurance would cover it. Then he answered some questions and sent me for more blood tests. It's important to keep testing my blood every so often while I'm on the Cellcept to make sure that it's not killing my kidneys, and to keep my white blood count normal. I'm becoming a pro with the blood giving. When they called with the results, everything was okay, with the exception of the muscle enzymes. Dr. Walker wanted me to start taking 10 mg of Prednisone (Treats inflammation (swelling), severe allergies, compli...

I had my next appointment with my rheumy on October 22. He just asked me how I was doing. Not really much new to tell him, to be honest. He talked to me about the next step of the process which was the medication that he thought would be best for me to try. He told me he wanted to try me on Cellcept. Cellcept is a an immunosuppressive drug, which basically is going to lower my immune system. To put some of my family at ease with this, here is what the John Hopkins Scleroderma Center says about immunosuppressive therapy, The most popular approach to controlling the inflammatory phase of scleroderma is the use of immunosuppressive therapy. The rationale is that an autoimmune process is causing the inflammation and the downstream result is tissue damage and fibrosis. In this model, the fibrosis is an “innocent bystander” that is driven by the cytokines (chemical messengers) produced by the immune system. There are several drugs that are being used, but only a few well designed ...

I met with my rheumatologist on the 30th of September. I was a little nervous going into it, but mostly anxious. I had had a few people in my ward try to talk me out of going to him, because they weren't happy with him (though I never got an explanation why), but I decided I'd go and see what he was like, since he's the only rheumatologist in Logan and the next closest is in Ogden. It was a good appointment. I actually liked the doctor. He has an interesting sense of humor, but the kind that I like. He asked me again the basic, "what's going on" questions that Dr. Carlson asked, and did a basic check of my ears, face, shoulders and skin. He confirmed that it was scleroderma, the diffuse kind. (I'll explain more about that in a different post.) He told me he wanted to do some blood tests, then scheduled some tests to check my lungs and heart to make sure the disease hadn't spread to them. He gave me some more information, and talked a little abou...