Sclero-what?

At work, I generally always wear gloves. Especially in the colder weather. There is not a time when I don't. My hands would just freeze and stop working. I get a lot of questions, and I never really know how to answer. I typically answer with quick replies and hope they don't ask more questions. Depending on how they ask their question also depends on how I respond. "Why are you wearing gloves?" -- My hands are cold, is usually the easiest question to answer. "Is it really that cold?" -- No, I just feel like wearing gloves for fun. This one I tend to get a bit snippy with, because yes, it really is that cold. Why else would I wear gloves? (I usually just say yes and move on) "Do you have carpal tunnel?" -- No, my hands are just cold "Do you have arthritis?" -- Kind of, a form of it, I guess, typically followed by, "You're too young for arthritis." -- Yes, yes I am. For a long time I just would use the, "my ha...

Sometimes you just have to laugh when trials come upon you. I have lots of funny stories I could tell, but I had to share this. I saw it on a Scleroderma discussion website, where there are also some very helpful discussions that I've found. But this is called, " You Might Be a Scleroderma Patient If.. ." You Might Be A Scleroderma Patient if.... Your skin is tight and shiny on one side of your body, with a crepe, pasty skin texture on the other; Wearing lipstick is impossible as you no longer have lips; You only have to shave one of your legs due to thick skin and hair loss; (this is not a problem I have. I swear my leg hairs grow 10X faster now that I'm unable to bend over and shave them. I went about 2 months without any form of attempted shaving this last time...not a pretty sight!)   Change handed back to you at the store drops thru your hands onto the counter; (Greg knows this, which is why I can't be driving through a fast food drive thru. One time,...

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 have been so lucky to meet people who suffer with Scleroderma, Raynaud's, and other various Auto-immune diseases through Instagram. Totally random, right? But it's been really cool. One of the gals that I've 'met' is a very talented artist. She created some superhero and princess prints that she is selling to help pay for her medical bills. Her etsy shop can be found here: https://www.etsy.com/shop/kcmcreations and her facebook page here: https://www.facebook.com/kcmcreations?ref=profile Yesterday she shared a link to a YouTube video that I wanted to share here. Its so hard to know what the future holds for me with this disease, and it's kind of hard for people to really understand what this disease does to people, so this video was awesome to kind of explain what Scleroderma is, and how it has impacted the lives of a few people. I totally cried because of the familiarity, so be prepared. It's a fantastic video. I'm just going to post a link to the...

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...