I'm not going to lie. Part of me is still in denial about this disease. I still often wonder how I could really have such a debilitating disease, and other times I think that it's going to go away, and I'm going to back to 'normal,' whatever that is. As I am slowly learning to accept the fact that I do have this disease, I want to share more and more about it and inform others about it. It's quite amazing to me how many people have never heard of Scleroderma. Let's face it, I didn't know it existed either. I want to really share awareness and help raise money for research in hopes that someday we'll be able to find a cure.

June has been Scleroderma Awareness month, and I did a poor job of spreading the word, but today is World Scleroderma Awareness Day, so I'm making it a priority to not only "rock teal" (the color for Scleroderma), but to also spread awareness via facebook, instagram, and through my blog.

Because, by now, you probably know a little about Scleroderma, I'm going to more share my personal experience with having it. For me it helps to see how others are affected, versus what the medical terminology for the disease is. I will throw in a few definitions that I feel best describe it starting with this one that my sweet friend Chanel posted on Instagram.


I want to start with the negative aspects of this disease first, beginning with what this disease has taken from me.

• My independence. I rely heavily on my husband to help me get ready for the day, bathe, do  my hair, get dressed, cook meals, etc. There are a few things I can do by myself, which I still really try to do alone, but in the end, he's the one I have to credit for me not looking homeless.
• My ability to bend, stretch, reach. This is what makes it hard for me to get ready. My arms to not lift above my head, making putting a shirt on difficult, reaching up to comb my hair difficult, bending over to put on pants, socks, or shoes. I have a hard time getting things out of the cupboard (plates, cups, junk food Greg puts on the highest shelf, etc.) If I drop something, I'm basically out of luck unless someone is around, or I have my grabber thing.
• My strength. I am a wuss. I have a hard time lifting my purse, or a gallon of milk. We have to plan it so that there is always milk that is less than half full in order for me to pour my own milk. I can't pick up my little nieces or nephews, and can't hold them for long periods of time.
• My joints and muscles are stiff, sore, and weak. My elbows are at a permanent bend. I can't straighten them. Opposite of that, my knees have a difficult time bending. It makes kneeling or getting on the ground nearly impossible.
• My skin is tight, discolored, and itchy. ITCHY. We'll leave it at that!
• My hands full functionality. Because of the skin tightening and the joints being affected, my hands are starting to curl up and turn into claws. I have a hard time gripping things or picking things up. Playing the piano is hard, and setting a volleyball would hurt like crazy.
• My digestive system is quite messed up. I have a hard time swallowing and digesting food, often resulting in vomiting or just being sick to my stomach. 
• I cough often, and have a very hard time doing so. 
• I'm tired almost constantly. I don't want to do anything once I get home from work, except sit and do nothing, even though inside I really want to go out and have fun.

Wow, the list could honestly go on and on. Scleroderma affects a person in SO many ways it's incredible (but not in a good way ;) And everyone is SO different. I have a few Sclero-sisters, and while we all have very similar symptoms, some the same, we all have something that one struggles with a lot more than others. It's not fair to any of us, but I guess that's life. It is what it is.

But while the negatives often outweigh the positives, here are some positives I've noticed because of this disease.

• I love having my hair brushed by my husband. It just feels so different when someone else does it.
• People often ask if I've been tanning because of the discoloration of my skin. I wish that was the case!
• The skin on my face is tight enough that I don't break out very often. Occasionally I'll get a zit or two, but I rarely break out.
• The strength of my marriage has increased immensely. We have to rely on each other, at least I have to, but my husband has stuck with me through all of this, and we've been blessed because of it.
• My faith in my Lord and Savior, Jesus Christ has increased. I have to rely on Him to make it through. I don't have an option. I've felt his love in numerous ways, and it has strengthened me so much.
• I have met some amazing friends through Instagram because of this disease. Sclero-Sisters. There are some amazing ladies out there, and I've been blessed to get to know them.
• I am a lot more positive than I used to be. I don't freak out as much as I used to over little things. Sure it could be the Prozac, but it's a blessing nonetheless.
• I've seen some amazing acts of kindness from people. There is still good in this world!

Scleroderma is a very invisible disease. Most people will never know who is struggling with it. It's a hard disease, and quite honestly, it sucks! We need a cure for this disease! We need to spread awareness.

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!