It's actually surprising to me that it has taken this long for this to happen. I have worried that it may possibly happen many, many times, but yesterday was the first. Here's the backstory...

For the last year or so, I have been extremely bloated all the time. So much so that I have people ask if I'm pregnant at least once a week. My doctor has given me a recommendation to do a colon cleanse, but I have yet to find time to do it. I work M-F, and every other Saturday, and my weekends have been full, so I haven't had time to do it.

I decided to try something more natural, that wouldn't require me to spend time at home, basically living in the bathroom. I found a recipe on Pinterest for an "all natural "secret" detox drink recipe" that should "help bloating, increase energy, speed-up metabolism, stabilize blood sugar and boost your immune system." All things that would be perfect for me.

It called for lemon juice, apple cider vinegar, cinnamon, honey, and water. Simple, right? I mixed it all together having no belief that it would taste good, but certain it could help with the other stuff. Sure enough, totally not delicious, but manageable. I got about five or so sips into it, before remembering why I stopped drinking lemon water a few years ago, when I last tried.

Holy ACID REFLUX! When my acid reflux kicks in, it affects my entire body, making me feel achy, my stomach hurt, and pain all the way up to my head. It's no fun, but tolerable. When I was done with that, Greg decided we should go shopping. I still felt a little sick, but was okay. We went to Hastings, then to Sam's Club. As we started walking through Sam's, I started feeling extremely nauseous. I made Greg slow down quite a bit so I could keep my stomach from tossing it's contents. It worked, and I felt okay.

We then went to the Budge Clinic to get my prescription refilled. I sat in the car while Greg went in to get it. I felt okay, but didn't feel like I needed to vomit or anything.


Our next stop was Lee's, where we had to get our ice cream fix. I don't know what happened between the car and walking into Lee's, but the feeling that I was going to puke came on quite strong, even more so than at Sam's. I knew this time that there wasn't stopping it, so Greg and I went back outside, frantically looking for somewhere I might be able to release my stomach contents. The garbage cans right outside of the doors were covered, and try as I might, couldn't think of any way to make it work, then Greg noticed some open topped garbage cans further down the sidewalk, in a less trafficked area.


I walked as fast as I could down the sidewalk to those cans, trying to keep it all in. Luckily I did okay for the most part, and made it just in time. The only thing I had in my stomach was that lemon water, so it was a quick process. Greg stayed as far away as possible (he's so sweet! ;) haha, and there were not many people that really walked by, for which I was grateful. I was able to vomit in peace, and while I would have preferred to do it at home, I'm grateful for the location of those garbage cans, and for my husband who, even though he wasn't right next to me, stayed close to make sure I was okay.

I always feel better after puking, which is nice, but I was still a bit shocked that it happened in public. I'll have to start carrying around a vomit bag, just in case!


It really is shocking to me that this is the first time it's happened. Especially since I was vomiting so much about 2 years ago. I never had it happen to me in public. There was another incident that happened, but it also was one-time, and that one is less pleasant to talk about!

But with all the awesome side effects of Scleroderma, I've been cautious of being in public. I don't like to shop alone in the event that I drop something, or if I were to trip and fall, or vomit. I'm grateful that this is the first time that Scleroderma has caused such an awesome public display, but I sure hope it doesn't happen again.

Luckily, I don't get embarrassed really anymore, so even when I find myself hovering over a garbage can outside of Lee's Marketplace, I can look up, wipe my face and hands with their hand wipes (thank you for that as well!) and get our ice cream. But the initial panic of what to do is not fun, so, again, Scleroderma, don't let it happen again!

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 Greg and I got married, we ate like crap. Junk food was just part of our diet, and even though I did gain weight, it never really made me sick. The past two years has been a bit different, and especially the last few months and couple of weeks. I have not been fully able to enjoy a meal in quite a while. I mean, look at this super delicious meal we had a couple of weeks ago. I actually was able to eat it all, but then felt the after-effects early the next morning.


It has been so incredibly frustrating the last few weeks. Everything has been making me feel sick to my stomach, and I have been throwing up more than usual. It has made me just want to stop eating all together because I'm so afraid of throwing up, or just being sick. This has caused more weight loss and lack of sleep, which results in me being completely exhausted and always wanting to sleep.

After the meal above made a reappearance, I couldn't go back to sleep, so I decided to stay home from work. I absolutely hate doing that, and I really had a tough time debating what to do.


The night before I had seen this quote, and I had thought about it quite a bit.


For the first 3 years I was at my job, I never once called in sick, even during the year the Scleroderma first started, I didn't call in sick until I fell and hit my head. I feel like I push through every single day. I have to. I don't have an option, but every now and then I do need a good rest, so in keeping this quote in mind, I texted my boss and let him know I wouldn't be in. It was really nice to just sleep in and then watch Psych for a few hours. Much needed.

Unfortunately, the sickness didn't stop there.I continued to feel sick, and threw up a few more times. Once I saw what my weight was getting down to, I asked Greg if he thought I should call the doctor, and he said probably. I never know which doctor to call, but since I felt it was more Scleroderma related I called my Rheumy first. In speaking with the nurse, she asked if I had called my primary care physician (PCP). I felt like she was a little annoyed with me, because she said something about it sounding like a stomach bug. I think I would know the difference, so I decided to call me PCP, even though my Rheumy ended up calling that night.

I schedule an appointment with my PCP for Friday the 6th, and when I went in, he too was concerned about the weight loss. He asked me questions, looked at my file, and told us that I had a Hiatal Hernia. Apparently it was found back in October when I had my Endoscopy. Not that it's super serious, but it would have been nice to know this, and know that that could be part of the problem with my digestive system.


My PCP called my Rheumy just to touch base, and see what the next step should be. It was an interesting conversation to say the least, but I don't want to talk about that. They wanted me to go see my GI and see what he thought we should do. In the meantime Dr. Carlson gave me Reglan to help speed up the digestive process, and also had me set up an appointment to do a Gastric Emptying Study.

I really like both of my doctors, but to be honest, I went away from that appointment feeling a bit uneasy and somewhat scared. Talk of a feeding tube can be a big scary, but I don't know what more I can do. I don't know how to keep the food down. I've tried talking with my angry stomach, but it just doesn't want to listen to me.


The Gastric Emptying Study was quite interesting. I had read bad stuff from people who had done one, but I realize that it was more people who couldn't eat solid foods. Luckily I don't have as big of an issue, so I got all worked up for  nothing. Basically I fasted for a few hours before the study, then I went and they made me some radioactive eggs, and toast with jam. I ate all of it in about 15 minutes, and it wasn't awful! It actually tasted better than some of the other eggs and toast I've had.


After stuffing my face they had me stand in front of their little machine for 2 minutes so it could track the food in my stomach. We had to come back every hour for four hours after that so they could do a two minute picture thingy. It wasn't bad, but made for a long day.



The next day I had an appointment with a Mental Health Counselor. My doctor had kind of recommended it for my 'eating disorder', but figured it would be pretty helpful with everything else as well.


I have to admit, I was quite nervous. I don't like talking to people about myself. I just don't. Plus, it's easier to say, "I'm doing fine" than to dig in and talk about my problems. But I was actually kind of impressed with the doctor. We did talk about some goals for the two weeks until I see him again. I've done okay with those goals, but I've also felt better so it's easier to eat better.

I got the results from the gastric emptying study, but they just said my stomach doesn't empty normal. I went and saw my GI yesterday (June 18). I wasn't sure what to expect. He just kind of explained the Gastroparesis to me (which is quite common in Sclero patients), and ways to help my stomach not hurt as much. I basically am not supposed to eat fruits, vegetables, or fatty foods. I guess I can puree the fruits and veggies (and meats), but that just doesn't sound super delicious. I'm also supposed to eat less, more often.


He wants me to try domperidone instead of reglan, but before I can, I had to get an EKG. That was exciting. Love all these new adventures. We'll see what results I get from that and see if I can go on that other medicine.

I just want to feel better, and be able to eat whatever and not have to worry about the consequences, but unfortunately, I don't think that's going to happen. So here's what I want you to do. Go out and enjoy a nice juicy burger and fries for me!

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!

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!