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!

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.

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 down and putting on my socks and shoes, or even clipping my toe nails or shaving my legs. I was able to do it, but it was hard. It was like I had no flexibility. My hips also became stiff and definitely was losing flexibility there.

During this time too, beyond the struggles with whatever it was that I had, I was also extremely stressed and frustrated and really needed my husband to get a job. Obviously this combined with my health was not a good combination, and it definitely made things harder and worse.

As the year went on, I found that I was soon not even able to put my socks and shoes on anymore. I had trouble getting in and out of bed, and once I was in bed, trying to roll over was a joke. I could definitely not roll onto my stomach, and even just rolling to the right was a struggle. I had a hard time lifting my head, and my neck was always sore. I was losing movement in my upper body as well. I couldn't reach much above my head at all, and I can't reach behind me either. Part of that is due to a sharp shooting pain that I get in my rib. If I tried to stretch too far, my rib would remind me that that was not a wise idea. It was so weird, because it never hurt to the touch, just every now and then when I would stretch. I had a very difficult time picking things up off the ground. If I dropped any money at work, I'd have to use my feet to get it to stick up far enough that I could bend over and pick it up. I had to be leaning against something when I did it though. It wasn't fun.

Sleeping was a struggle, due to not being able to roll over, plus my acid reflux was acting up something awful. It was nasty business. And of course lack of sleep never helps anyway.

I was also losing muscle in my upper body. I wish I could take a picture of what my shoulders look like, but that would be inappropriate since I'd have to take my shirt off. I was also getting super weak and tired really fast, and I lost more weight. Greg was good to get me out walking everyday, but I could barely make it around our tiny block before I would get too tired, or my hips/knees/legs/arms would hurt. It really sucked because I was so ready to be done with it all. I had dealt with it for over a year already, I was ready to feel better.

I had quite a few people approach me and ask why I hadn't seen a doctor, or if we needed assistance. Sure, free health insurance would have been awesome, but since that wasn't going to happen, I just would tell them that we were fine, and I was pretty certain Greg was going to get a job with insurance. (He was graduating with his Master's in School Counseling in May 2013). I also felt that if there was truly something wrong...like deathly wrong, I would know, but I didn't feel that sense of, "holy crap, I think I'm going to die from this." Yeah, it totally sucked, but I didn't feel like I was dying.

Luckily, the end of May we found out that Greg got a job here in Logan, and we would be getting insurance. WOOHOO, just not until September, BOO! I can't even tell you, those last four months were the worst! I don't know if it was just the anticipation of FINALLY getting in to see a doctor, or just being sick of dealing with it. Probably a bit of both, but I noticed a real decline in those last four months. Everything got harder, and seemed to be taking a lot longer. Getting ready for work was a chore, and even getting in and out of the bath tub was becoming near impossible (unless I wanted to just plop down and kill my tailbone again.) Eating food still wasn't fun, because nothing tasted good, and my fingers were really getting stiff (along with the rest of my body). I couldn't get up off the futon anymore by myself, so I had to move to the couch that was a bit higher.

I felt like an old lady. I still feel like one. All of these issues are still there, only a little bit worse. My knees hurt, my hands and wrists hurt, my hips hurt, my shoulders and upper torso hurt, I can't stretch above my head and I can't reach things down low. I can't grip very well, and I can no longer play the piano very well.

Like I said, the months leading up to us getting insurance were the worst. I didn't have a doctor yet, and the one that everyone at work had referred me to wasn't taking patients. When I tried to get in with another doctor in the same clinic, I learned that you could only call on Monday mornings, and they only took so many patients, so you had to be early. Well, one day I was talking to my boss, and he was asking about it, and I told him that I wasn't able to get in with Dr. Carlson because he wasn't taking new patients. He asked me if he wanted me to email  him (Dr. Carlson visits my place of work,, so we know him, and Danny has  helped him with stuff as well), so I said sure. Dr. Carlson was awesome and I heard back from his staff within a couple of days. Unfortunately the first opening wasn't until September 24. Another setback, but I took it. At least it was going somewhere. Well, I was talking to my boss again, and he asked me if I had heard back, and I kind of had a meltdown (I cried a LOT during those last few months), and told him I wasn't able to get in until the 24th, but it was okay, because at least I had a doctor, and one that I wanted to go to. Well, the next day I heard from Dr. Carlson's staff letting me know that he wanted to see me on the 5th. I started crying and sent an email to my manager saying, "I don't know if you said anything to Dr. Carlson again, but thank you." It was an answer to our prayers for sure. So now I just had a few weeks left to be able to see a doctor. Man was I excited!