Dermatomyositis

James will be picking up my medicine on his way home from work. Another round of steroids to kick this flare back into hibernation. For anyone with a chronic illness or disease, beginning a round of treatment is like a roller coaster. I'm full of excitement and hope- I know I will feel better, look better, BE better soon. BUT I'm full of skepticism- how long will I feel better, look better, etc. Will I flare again the day after I stop the medication? Will I flare worse or will I crash after the euphoria? Will this be the round I have roid rage and go crazy on those I love? Are the benefits of this treatment worth the side effects on my body? Will this be what eventually kills me? So many questions.

 What I have is called Dermatomyositis. It's defined as a muscle disease characterized by inflammation and a skin rash.( Google image search it right now!!!) Basically I have muscle pain and soreness, mainly targeted in my shoulders/arms and hips, with a dash of skin rash, mainly on my face/neck/hands/elbows. This means that I get tired after brushing my hair just a few strokes, that picking up my 21 pound son is very difficult for me, that going up and down stairs or doing repetitive motions can really cause me to tire quickly. It also means that where ever I go, people are commenting to me on my rash. "Wow girl, you need to wear some sunscreen." "You look really tired today." Or one I got leaving church this past week- "Did you cry through the whole service too? Your face is so red!" What's tricky about my rash is that it's not completely obvious. We've all seen someone with a hideous deformity, and of course we wouldn't dare mention it to them or make fun of them for it. But because my rash is sometimes lessened by make-up or doesn't follow a familiar pattern, most people feel fine to comment on my face pretty regularly. Usually I just shrug it off, or agree with whatever comment they've just made. On the occasion that I say, "Oh, it's just my autoimmune disease", people don't know how to really respond and they feel bad and I hate making people feel bad..... so, I'm still working on my response.

 I'm starting this blog for a few reasons. 1. To bring awareness to a disease that many folks are unfamiliar with 2. To help keep records of my thoughts and feelings as I work through this season of my life 3. To chronicle all of the amazing gifts that God has given me, so I keep my hopes up for what He has in store for me still

 Thanks for following me! I hope we can learn a lot from each other!
 L J