World Scleroderma Day: June 29, 2014

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World Scleroderma Day. The day where my social media feed blows up with cute memes, and small pictures reminding people of the day, and foundations make an attempt to have the word spread about this….excuse the humor….extremely HARD disease. I’ve been dealing with Scleroderma for a few years now (a few…you know, like almost a decade…), and the changes have been fast, and sometimes fierce. I don’t get any presents or prizes on this day though. I do get decreasing lung and pulmonary function, excessive body and joint pain, tightening skin, over-productive scar tissue build-up, chronic pleurisy, flares from food, flares from pollutants, flares from stress, skin issues, flares from over-doing it, swollen joints, insomnia, and the sudden and complicated stomach bullshit, almost every day. Not to mention all the meds I take, have taken, or that have tried to kill me. Or all the horrific, completely life altering and debilitating side effects from said meds that come and go like the sunrise every day. But you know what? It’s not just me that lives through this every day.

Scleroderma effects hundreds of people all over the world, every day. With every one long drawn out diagnosis and process, there are up to seven unreported or misdiagnosed cases! This is one of the major autoimmune diseases that is sneaking up on many people in America, with no understood or confirmed reason. (I tend to side with environmental exposures, diet, and heredity.) Those who have these more severe autoimmune disease, and especially those like myself with “layered” diseases, are at a much greater chance to develop cancer of any type and at any time during their lives. So, treatment seems vital, right?

What’s worse? Even with “Obamacare,” people (also like myself) are still falling through the gaps, and being asked to cough up $1k in monthly premiums for insurance that doesn’t even cover the procedures needed to be completed!! I’ve heard that what your state does in this mess also really matters… Well, my state is an asshole, I guess, so I’m still stuck. Now would be a GREAT time to make a million dollar novel….

What do you know about Systemic Scleroderma? I bet you know I hate it! HA! Some people have Scleroderma on the outside of their bodies, on their skin. It’s more visible to see, and often has red patches, or very dry, very tightly pulled skin. They may have other skin disorders, too. For those who have this on the inside, (also like myself) my organs fight with layers and layers of scar tissue to function. Pulmonary fibrosis happens when the tissues build up on my lungs and heart. These same tissues pile up on other organs, in joints, and in random places throughout the body. The prognosis of Scleroderma is a steady decline, forever. There are medicines that can help ease symptoms, and in some cases, ease flares thusly decreasing build up, but, for the most part, Scleroderma becomes your life partner.

What can you do? What can you take away? You can know that by spreading the word people learn. When people learn, they understand. So, help spread the word. This disease is hard enough by itself, but trying to get the word out about it seems to be even harder! Donate to the Scleroderma Foundation or other causes that support studies on autoimmune diseases and their progression. Most of all, support your friends who deal with things like this. Don’t make them feel alone.

And guess what? —>