Sclero-what?

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 ...

Following what has now come to be know as "the Fall", things changed a bit. I no longer wanted to go anywhere alone. Partly because I felt dizzy still, and mostly because I was afraid of failing again, and not having anyone there. So, now I don't shop alone, or really go anywhere alone, except work. I still have to make sure I stay right next to Greg or the shopping cart, just in case I start to go down. I don't get dizzy so much anymore, but I do have a tendency to stumble, and if I turn to fast, I lose my balance. So, I'd rather be safe than sorry. The next Monday (10.7.13) I had my first test scheduled. It was for an Echocardiogram. I've never had one of those before, and if you haven't either, here is what WebMD says about it, An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the...

The day after my appointment with my rheumatologist, I was supposed to go back to the hospital and get a chest X-ray. They weren't there when I went down to get my blood drawn, so I just figured I'd go after work the next day since I needed to pick up my new meds as well. As I was leaving work, everything felt normal, so I did what I do everyday and went to walk across the parking lot to get in my car. I have no idea what happened next to cause this, but as soon as I stepped off the curb I got this weird sensation and just knew I was going to fall. I took a couple of steps and was going down. Because my reflexes aren't what they used to be, I had no way of stopping myself or adjusting to protect myself, so down I went. I fell on my left side and smacked my head on the pavement. It hurt like crazy, but the thing that scared me most was not knowing how I was going to get up. I haven't been able to get on the ground voluntarily in a very long time, so I knew that whateve...

By now, you're probably wondering just what exactly is Scleroderma. Well, in simple terms (and in a cute typo-graphic)   So, basically, my body has decided that it doesn't like the healthy body tissues in my body, and tries to get rid of them. So much for trying to get in shape and be healthy right? In more in depth terms, this is what eMedTV says about it: Scleroderma is derived from the Greek words "sklerosis," meaning hardness, and "derma," meaning skin. Therefore, it literally means "hard skin." Although it is often referred to as a single disease, it is really a symptom of a group of diseases. This group involves the abnormal growth of connective tissue, which supports the skin and internal organs. Therefore, scleroderma is sometimes used as an umbrella term for these disorders. In some forms of scleroderma, hard, tight skin is the extent of this abnormal process. However, in other forms, the problem goes much deeper...

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...

I had my very first doctor's appointment on September 5. After having to wait so long for the insurance to finally kick in, I was pretty excited to go to the doctor. I took the afternoon off, which was a good thing because I was there for quite a while. They were a bit busy, so I didn't even get in until about an hour after I was scheduled. I didn't even care. The nurses kept apologizing, but seriously. I did not even care.   When I finally got in, the nurse came in and briefly asked me what was going on and did her stuff, then left. Dr. Carlson came in shortly after, and asked to look at my hands. I showed him and he said, "I think I know what's going on." He then proceeded to ask me questions, so I got to start from the beginning and tell him everything. He'd ask me questions every now and then, then continue on. I felt like I got everything out, but it's kind of hard to remember EVERYTHING when you're not really sure what's part of it,...

A couple of weeks ago I was talking to my friend, and I realized that it has been 2 years since this all started. So crazy! Anyway 2013 was a very interesting year. It started out with the freezing cold temperatures. I think in all the years that I've been here in Logan, I've never experienced such freezing temps. You'd think where I'm from Wyoming, I'd basically be immune to that, but no way. It sucked. It sucked pretty bad too because in the mornings at work I have to go to the ATM and get the deposits from the day before. Even just being out there for that five minutes just about killed me! My hands would just hurt, and it would take forever for them to thaw out and become somewhat useable again. So there was that. The pain also continued. My joints became more and more stiff, and my fingers became swollen and more stiff as well. I also noticed a decline in what I was able to do for myself. At the beginning of the year I was having a bit of trouble reaching d...