Information and inspiration for scleroderma patients and caregivers. Serving people in Illinois, Wisconsin and Indiana.
Scleroderma, oh scleroderma (GRRR), let’s just say we have an interesting relationship. I can finally say now, that it is what I WAS. I mean, don’t get me wrong, I still carry this disease with me every day but let’s just say I’ve come a LONG way from where I began 13 years ago.
When I was diagnosed, I had just married my high school sweetheart and was looking forward to our new life together. All of a sudden our world completely changed; it was seriously like someone had swung up a stop sign and smacked me right in the face with it. For the next SEVEN years of my life I was miserable. I was ill and I lost who I was.
Like any autoimmune disease I was exhausted. Not only was the scleroderma kicking my butt, the medication had me completely turned upside down. By the time I was 25 I’d lost most of my independence. My hands significantly crippled. My entire body was so tight it was hard to just move around doing daily tasks. I remember one Saturday specifically my husband, Mike, left for the races. I was heading out later in the day and it didn’t dawn on me that he had never helped me put my socks and shoes on before he left. So I tried putting my socks on. I sat on the edge of the bed and struggled for what felt like hours, my whole body hurt trying to reach my feet. I cried and sat, then tried again and struggled and sat, then I just sat and sobbed. I couldn’t take care of myself. It was heartbreaking, almost like a part of who I was died. I had to accept this new sick person; I had to accept being dependent on others and to accept the changes it was making to my body; internally & externally.
Every three weeks for several years I spent many long days getting IV infusions and blood transfusions because my body couldn’t keep healthy counts that are vital to live. Now, when I think back it just seems so crazy to me how we take our bodies for granted. We just expect them to do ALL the things they are supposed to do at all the right times. Crazy, isn’t it?
THIRTY rolled around…wow, were did that come from? It was the point in my life that I was told I couldn’t have children because I was too ill. This was TOTAL heartbreak on an entire new level! It completely devastated me. Mike was so supportive through everything – my rock and my one true love. Not only did he take care of me but let’s face it, his future was forever changed too. Although he assured me many times that it was okay, a big part of me always felt guilty for taking that away from him.
Little did I know that 30 was going to be a BIG year for me! It was the year I asked myself just WHAT in the heck is going on here? In the last seven years I had battled this horrible disease, my mom suddenly passed away and I was told my future dreams are no longer possible. To say my life was a hot mess was a total understatement.
You guys, I just wasn’t having it. I HAD to turn my life around. I HAD to live it. I’m ONLY 30!! I want to enjoy life and have all the things I ever wanted.
So, I set some pretty huge goals for myself. I realized that I could never cure myself from scleroderma but I knew deep down that there were things I could do to get as healthy as I could control. So, okay guys, are you ready for it? I bought a treadmill! Yes, me! The one who couldn’t even put her own socks on. My goal was to be a runner someday, so every night I walked on this treadmill. Before I knew it I was jogging-3 miles! By the time I was 32 I was a runner- tada! I was running 4+ miles at a 9-10 minute mile…say what?? I was eating healthy & cut out processed foods. Don’t ask me how or why but I went into a “sort of remission.”
Guess what? You’ll never guess! Shortly after I turned 35 I had a precious baby girl. Gahhh!! I’m tearing up right now! Emily is the name of my little miracle. My pregnancy was closely watched but was healthy, normal and very exciting! She was born healthy and continues to be a healthy sweet little two year old. Although I still have scleroderma and deal with struggles each day, I am counting my blessings by continuing to be healthy. Pushing myself each day to be in a POSITIVE state of mind has allowed me to make amazing strides.
Last year I became a fitness coach and I’m in the best health I’ve EVER been! I continue to eat clean and workout every day; I’d also totally be lying if I didn’t say, heck yes I struggle to workout some days. Heck yes I have to modify moves and take it slower – but becoming active and overall healthy about the things I can control has literally changed my ENTIRE life! Now I’m very passionate about coaching and helping other people change their lives to get healthy too – how amazing is that?! If you want it bad enough, you CAN do it! You really can!
I have everything I ever wanted. Well… I do carry scleroderma with me and I could definitely do without that. The one difference about it now though is I don’t let it define me. Yes, it’s what I have but it’s not WHO I am anymore.
It may sound cliché but life is truly amazing; it really is. Sometimes it’s sucky but it has made me a fighter, a strong person, a better person, an amazing mama and wife and I’ve learned to appreciate every moment. We are all blessed in our own way; you need to fight to find yourself. Only then will you always see the beauty in everything – good and bad.