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 pinky no longer works. I can bend it, but I can't lift it. It just kind of sits there. I told him I was scared that that was going to happen to my other fingers, and he told me the best thing was to just keep exercising my fingers. He said that the more we can prevent now, the better it will be in the long run. He said he could send me to physical therapy, but at this point, if there's stuff I can be doing at home, then I'd rather do that. Of course, I've been too lazy to do it. That needs to change.

The more we talked, the more I can to a realization that this isn't going to go away. Since the beginning I also had that hope that it was going to go away, I just needed time. But even though this was the best appointment that I'd had, I left feeling a bit uneasy. He offered to send a referral down to the U of U if I wanted a second opinion, but honestly, I trust him. I feel like he is giving me the best treatment. Now, of course, if things change drastically, I might consider it. I don't know. At this point, maybe I'm still in a bit of denial about this whole disease. Like I said though, I'm slowly coming to the realization that this thing is real, and I'm going to have to deal with it forever. Oh joy!

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 studies have been performed. These immunosuppressing drugs include methotrexate, cyclosporine, antithymocyte globulin, mycophenolate mofetil (aka Cellcept) and cyclophosphamide. A recent study suggested that methotrexate did not significantly alter the skin score (a measure of skin thickening) compared with placebo (no treatment). Cyclosporine is not completely studied due to reports of renal toxicity. The most promising drugs are mycophenolate mofetil or cyclophosphamide with or without antithymocyte globulin. Unfortunately, there is no placebo-controlled study (i.e., half the patients get the medication and half get a sugar pill) to define their exact role in treating scleroderma, but if used during the active inflammatory phase of the disease, they appear to work.

So there. In basic terms, the way I understand it, my immune system is attacking itself, so by weakening it, we're hoping to prevent the progression of the disease. He did tell me that it can take a while for me to notice any difference, at least 6 months. He started me on 1000 mg, 500 in the am and 500 in the pm. Side effects could include upset stomach and vomiting, which I was quite lucky to experience. I actually called in sick that next Friday. It's been a long time since I've thrown up. It wasn't too bad, but still gross.

Anyway, since I know you all wanted to know about that, he continued me on the Amlodipine, Baby Aspirin, and Omeprazole, then sent me off to do some blood tests. The last time he said that my blood tests showed high levels of inflammation in my muscles, so he was going to do more tests for that.

He also asked if I wanted to get a flu shot. I've never had one before, so I asked him if he recommended it. Since I would be taking the immunosuppressor, he said it would be a good idea. As he was leaving he asked if I'd ever had one, I said, "No, but I don't ever really get sick." Then I paused, and we both laughed, and I said, "Well, until now." Needless to say, I got a flu shot.

I had also been having problems swallowing. I have to chew my food really well so that I don't choke on anything. I mentioned this to him, so he scheduled me to have an endoscopy with Dr. Garg. It was scheduled for Monday, the 28th. I was a bit nervous because I had no idea what to expect. It was done early in the morning, I had to have a driver, and I got to stay home all day! WOOT! They had me change into a gown and slippers, gave me some warm blankets, hooked me up to to their monitors, sprayed some numbing spray in my mouth, then gave me an IV. That was the worst part. Then they gave me the anesthesia, and I was out. It was amazing. I haven't slept that well in a long time. Once I woke up (like a half hour later), Dr. Garg came in and told me that everything looked okay, with a bit of inflammation due to acid reflux. He doubled me omeprazole dosage, and sent me on my way.



I'm glad there was nothing seriously wrong, but then I still wonder why I have such issues swallowing, and why my throat hurts....kind of like with the rest of my body. Everything seems to be fine, but it still hurts. Oh well. Such is this wonderful disease I guess. I really can't complain too much. I could have it a lot worse!

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, affecting blood vessels and internal organs, such as the heart, lungs, and kidneys.

Scleroderma is considered a rheumatic disease and a connective tissue disease. A rheumatic disease refers to a group of conditions characterized by inflammation and/or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects the major substances in the skin, tendons, and bones.

Here is a list of symptoms of scleroderma with the ones I've experienced in bold.

Skin symptoms of scleroderma may include:

• Fingers or toes that turn blue or white in response to hot and cold temperatures (Raynaud's phenomenon)
• Hair loss
• Skin hardness and thickening
• Skin that is darker or lighter than normal
• Stiffness, and tightness skin of fingers, hands, and forearm
• Small white lumps beneath the skin that sometimes ooze a white substance that looks like toothpaste
• Sores (ulcers) on the fingertips or toes
• Tight and mask-like skin on the face

Bone and muscle symptoms may include:

• Joint pain
• Numbness and pain in the feet
• Pain, stiffness, and swelling of fingers and joints
• Wrist pain

Breathing problems may result from scarring in the lungs and can include:

• Dry cough
• Shortness of breath
• Wheezing

Digestive tract problems may include:

• Bloating after meals
• Constipation
• Diarrhea
• Difficulty swallowing
• Esophageal reflux or heartburn
• Problems controlling stools

Awesome right? Okay, so it's broken into two main forms of Scleroderma, {localized} & {systemic}. Here's the difference between the two. (click on image to see it bigger).


Got that? So naturally I have the worse of the two. Systemic. A lot of the symptoms for both are the same, however systemic covers more of the body. Some of those wonderful symptoms are known as CREST.

• Calcinosis. The formation of calcium deposits in the connective tissues, which can be detected by an x-ray. They are typically found on the fingers, hands, face, and trunk and on the skin above the elbows and knees. Painful ulcers may appear if the deposits break through the skin.

• Raynaud's phenomenon. A condition in which the small blood vessels of the hands and/or feet contract in response to cold or anxiety. As the vessels contract, the hands or feet turn white and cold, then blue. As blood flow returns, they become red. Fingertip tissues may suffer damage, leading to ulcers, scars, or gangrene.

• Esophageal dysfunction. Impaired function of the esophagus (the tube connecting the throat and the stomach) that occurs when the smooth muscles in the esophagus lose normal movement. In the upper esophagus, the result can be swallowing difficulties; in the lower esophagus, the problem can cause chronic heartburn or inflammation.

• Sclerodactyly. Thick and tight skin on the fingers, resulting from deposits of excess collagen within skin layers. This condition makes it harder to bend or straighten the fingers, and may also cause skin to appear shiny and darkened, with hair loss.

• Telangiectasias. Small red spots on the hands and face that are caused by the swelling of tiny blood vessels. While these spots are not painful, they can create cosmetic problems.

  The main ones I suffer from are the Raynaud's, Esophageal dysfunction, and sclerodactyly. Love it!

Now, as mentioned above, Systemic scleroderma is broken down into Limited or Diffuse.

Whereas Diffuse is a bit more complicated.
Guess which one I've got. (And no cheating, since I told you in my last post.) But yes, I've got Diffuse Systemic Scleroderma, due to it affecting so much of my body, as well as having all of those awesome symptoms listed.

The damage caused by diffuse scleroderma typically occurs over a few years. After the first three to five years, people with diffuse scleroderma often enter a stable phase lasting for varying lengths of time. During this phase, skin thickness and appearance stay about the same and damage to internal organs progresses little, if at all. Symptoms of scleroderma also subside, which means that joint pain eases, fatigue lessens, and appetite returns.

The skin will gradually begin to change. Less collagen will be made, and the body will get rid of excess collagen. This process, called "softening," tends to occur in reverse order of the thickening process: the last areas thickened are the first to begin softening. For some people, skin returns to normal, while other people are left with thin, fragile skin without hair or sweat glands. More serious damage to the heart, lungs, or kidneys is unlikely to occur, unless previous damage leads to more advanced deterioration.

People with diffuse scleroderma face the most serious long-term outlook if they develop severe kidney, lung, digestive, or heart problems. Fortunately, less than one-third of patients with diffuse scleroderma develop these problems. Early diagnosis and continual and careful monitoring are important factors in this.

So, I guess there is hope that maybe this disease with become stable. It progressed really rapidly from about June-September, and since being on the medication, it has slowed down. Because of the kind I have, they have to monitor my internal organs pretty regularly to make sure nothing goes wrong there.

There is not a known cause for what brings this disease on. Scientists suspect that it comes from several factors, which may include:

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, and what's just a random pain. After talking to me and asking me questions for quite a while, he had me hop up on the bed thingy (not sure what it's called?) and he did just a brief exam. He checked my motion and ability to raise my arms, and tested my strength. Then he asked me to open my mouth so he could look inside, and when I did, he just kind of looked at me, then said, "Is that as wide as you can open it?" I told him yes, and then he told me that he thought that I might have scleroderma.

Now, rewind to almost a year ago (to date). Donna, one of my co-workers, and I would talk a lot about what was happening, because she was also having some random health issues as well. Well, she showed me this text she received from her daughter, who was trying to help her figure out what might be wrong. Donna said it sounded more like what I had, and showed me {an article} about it. I did quite a bit of research on scleroderma, as well as a million other diseases, and always seemed to come back to scleroderma. That article is one of the best ones I've seen about scleroderma as well. It explains what it is, as well as the symptons. But neither Donna or I are doctors, so what do we know really?

I almost laughed when he said that, because it sounded so familiar. He asked if we had any pictures of me before everything happened so he could compare. We got out our phones and showed him some pictures from about 2006 where I was smiling. He said that he noticed a lot of skin tightening (which is one of the main symptoms) around my mouth, eyes, and forehead. That is where the majority of skin tightening and discoloration is that I've noticed, though it is also on my arms as well.


He wanted to do some blood test and a urinalysis, and then he told me he was going to refer me to Dr. Walker, who is a rheumatologist. He called Dr. Walker to let him know about me and to see what specific blood tests he wanted to have done. It was kind of funny because one of the things he said was something like, "You can tell just by looking at her." And then he kind of apologized after. I didn't take offense to it. I know I look different. I know my lips are slowly thinning out and my face is really tight and my smile is stupid. It was just kind of funny.

We ended up going to the hospital to have the tests done, and Dr. Carlson also prescribed me Omeprazole to help with the acid reflux. Holy awesome stuff! It worked that first night. I should have done it sooner. Anyway, after the blood tests I got a call from Dr. Carlson's office saying that the earliest appointment Dr. Walker had wasn't until December, so they were going to talk to him and see if I could get in earlier. I was able to have an appointment scheduled for September 30. Sigh...more waiting, but at least we were going somewhere.

I received the results from my blood tests the next day. They confirmed I did have an auto-immune disease, but that more testing was required to know if it was Scleroderma, or something else.

You know, even though it took a year to get diagnosed, it was kind of a peace of mind to know that this was what it most likely was, and that I had something to research and learn more about. I'll most soon about my thoughts on this disease, and other things, but just want to get these posts out of the way.

I also have to say that Dr. Carlson was the best doctor. He is such a nice person, and I felt like he was legitimately concerned about me. He would ask questions and really tried to get to the root of the problem. I'm so grateful to him, his staff, and my boss for working it out so I could get in to see him. I look forward to having him as my primary doctor for the next however many years I can.