Thursday, May 10, 2018

It's Myositis Awareness Month!

Hello there! Happy Myositis Awareness Month! I am doing a fundraiser for Myositis Support and Understanding - my first ever! Every little bit counts towards getting research and legislation that will help those with a Myositis disease! Click here to donate! It's my dream that in my lifetime, people will not know what Myositis is because it isn't a big deal to have, not because it is so rare. ___________________
For those of you who don't know my story, here is a [relatively] quick review! In about 2006, I started to have trouble lifting my arms and walking up stairs. I was working as a hair stylist at the time and assumed that maybe my body just wasn't cut out for a career on my feet. I got a desk job and as the years progressed, I continued to have trouble with stairs and it became difficult to hold my arms up long enough to blow-dry my hair. I assumed I was "getting old", even though I was only in my late 20's. In 2009, I started to notice rough little bumps on my hand and my cuticles got red and irritated. After a scary experience with one dermatologist, I did a little research and found a new doctor. She took one look at my hands and said, "Wow, that looks like dermatomyositis!" She ran to her office and returned with a massive medical book, apologizing for needing to look up the tests to run, but explaining that dermatomyositis (DM) was very rare and not something that she sees every day. She asked me if I had any trouble lifting my arms, or going up stairs and I was shocked. I couldn't believe the two things could be related. The biopsy and blood tests came back a couple of days later and that was it, I was officially diagnosed with DM. The following 2 months were a completely terrifying whirlwind of appointments and tests. And EKG, MRIs, a muscle biopsy, mammogram and an unbelievable amount of blood work. DM has an increased risk of cancer and complications, so all the major ones had to be ruled out. My rheumatologist had me start taking immune-suppressing drugs to control the disease and try to push it into a medically induced remissive state. It was shortly thereafter that I had my first "flare" which eventually pushed me into medical leave from my job. By 2012, I had released my position, and had just got back on track from my flare. I wasn't satisfied with how I felt, though. I wanted more from my body and from my life. I was hired back by my company's "parent" for an at-home position that I still have today and cherish. My DM decided to flare again in 2015 and I was close to being in the hospital. I struggled to walk up the stairs and could barely keep awake for dinner. Massive amounts of Prednisone both saved my life and nearly killed me. I told my rheumatologist that I couldn't take it anymore and needed a better solution. I wanted to look into drug infusions. December of 2015 changed my life! I had my first Rituxan infusion and after months of fighting back with all my might, I finally got the life back that I had been craving since my early 20s. I can workout, walk my dogs, cook meals, run errands, do housework and GOLF! I can live a life that makes me happy and fills up my soul. I still have to make time for rest and recovery. I still have days where my body just doesn't want to go. I still have to modify what I put into my body to keep it happy, but I am living my life. I don't have to spend my days on the couch, wishing that I was able to join my friends, or make it to an event. I have my myositis support groups to thank for helping me through the decision to start Rituxan. I have research to thank for supporting my doctors in their recommendations for me. The combination of drugs that I take is a result of other patient's experiences as well as current information that we have about this disease. Rare diseases struggle to get knowledge passed around to medical professionals around the world. The Myositis Association and Myositis Support and Understanding help to bridge those gaps which helps with correct diagnoses and people getting the help that they need! I'm passionate about Myositis Awareness! Thank you for taking the time to learn a little about my experience and this crazy disease! Thank you, as always for supporting me and my family throughout this journey! XO, Maren

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