Scleroderma Awareness Day 2014

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.