Scleroderma isn't just a weird word...

This is super delayed because the month is almost over, but June is Scleroderma Awareness Month and June 29^th is Worldwide Scleroderma Awareness Day! So, what does this post have to do with anything and why am I talking about a disease with a super weird name? I was diagnosed with a version of Scleroderma a few years ago and have really made an effort to raise awareness and share information with others. My hope in raising awareness about the disease is to eventually be able to treat it and all of its symptoms so even if you don’t remember much of anything I say, just be sure to support auto-immune disease awareness when it comes your way.

I’m actually really lucky; I don’t have a progressive form of the disease and don’t suffer from any of the severe symptoms it can cause. Mine are more annoying than anything else. If anyone has been with me while I am cold, or even warm and holding a cold beverage, they have seen my hands turn ghost white. This is called Reynauds. Some people have Reynauds phenomenon without having any link to an auto-immune problem. There is a simple blood test that can be done that will show this. After noticing that I was having reoccurring Reynauds sessions with more and more severity, I was prompted to take the test. The test is super weird and confusing (my results were like 6 pages long), but I have a limited version of the disease. What is Scleroderma? It’s basically a sclerosis of the tissue. For whatever reason, people with scleroderma have antibodies attacking their bodies, and while it can be genetic the linking genes are not known. Feel free to Wikipedia or WebMD the disease if you want to be freaked out. I did and it scared the shit out of me.

After being totally freaked out by the internet, a family friend who doubled as a rheumatologist spoke to me and my mom and calmed our nerves. She put me in touch with the amazing team at Seattle Arthritis Clinic, where I have been going since I was diagnosed. They're amazing and made me feel so much better. Im totally fine. I went in and did some testing and went over symptoms – turns out those dry eyes were a little bit more than we had expected. I had chronic dry eye. So much so that I was causing serious damage to my cornea’s and was making it incredibly difficult to see or focus. My eyes hurt all the time, burned, and often times felt sticky. Luckily though, my eye problems and the Reynaud’s are the only symptoms I have. Compared to what I could have, I’ll take it.

My eye condition is probably the most difficult. It’s really high-maintenance with a cocktail of eye drops every day and can change very rapidly. When I got back from my winter in South America, I scheduled a few follow-up appointments. Turns out a ‘sickness’ I had in Chile that completely wiped me out was a flare up of something a little bit more severe called Spondyloarthropathy. My auto-immune system basically overloaded and took me out. Every person displays this differently, but my doctors caught the tail end of my flare up because of my eyes; my eye pressure had sky rocketed and I could be causing severe damage to my corneas. So, I got to spend a couple hundo on eye drops that month and pray that the flare up never happened again. My eyes have steadily gotten worse and worse; I am incredibly light sensitive (especially on ‘bad’ days), and always need my eye drops with me. While limited damage has been done to my eyes, my doctors and I closely monitor my condition and recently decided to put eye plugs in. It was so weird sounding but after the initial pain of putting them in it has seemed to really help day to day. Only thing is, my eyes don’t drain so now everyone knows when I get teary eyed at a Disney movie. Oh, the price we pay…

The Reynauds is also incredibly annoying and at times really painful. Reynauds is a session where your body basically reacts to a temperature change or shock by mimicking hypothermia. I was put on Blood Pressure medication last year to help reduce the vassal constrictions and their severity and have tried really hard to cut caffeine out of my diet (not so successful at that one, though). The winters are incredibly hard with Reynauds, but I do my best with hand and feet warms, socks, lots of jackets and layers, and a good attitude. Simple things can become really painful and the longer the Reynauds lasts, the more it hurts. I actually suffered some Frostbite/toe-bang while ice climbing this winter, which was a true testament to how cold I get and how quickly. My toenail has still not grown back completely! People also notice the creepy white on my hands all the time (the feet is on the bottom and not as visible - it just looks like I haven't learned to walk or run correctly when I have it). I was on a plane flying somewhere and once we landed I went to get my overhead baggage and a guy gasped and pointed at my hands and exclaimed something was wrong with me, as if to alert me. Perhaps a tad too annoyed, I looked down, let out a little shriek, and looked at him and said, 'just kidding, I know. Thanks though.'

I try to balance all of these things with normal life andmust say I do a damn good job at it. All of my symptoms are manageable and only impact my comfort at times. But that is nothing new to a girl who had four shoulder surgeries by the age of 23. Like I said, nothing is super limiting, I just have to monitor stuff a little bit more than I might normally. My doctors have been an incredibly good resource, as has the Scleroderma community. You can learn more information at www.scleroderma.orgor by visiting their Facebook page! Scleroderma and diseases like it are becoming increasingly more common, so join with me as we raise awareness for more benefits, insurance coverage, treatment and a cure!