I had several of my fellow Dermatomyositis mom's in my Facebook groups link a story tonight that I wanted to share with you. This video is about a girl with Dermatomyositis, and how her health improved greatly with the help of a therapy dog. This is very sweet, but it also gives you a peek into what life with this disease is like. I have asked Emily to make video's in the past to give people an idea of what it's like. She is still too sensitive about her steroid swelling (puffiness) to want to be captured on film. I hope that one day she will change her mind and help to educate in this way, but for now this girl is helping :) Very exciting! It is hard for me to explain to people why it's worse than "just arthritis". Don't get me wrong- RA is very bad, very serious. But DM is even worse. Not only does it inflame the muscles but it actually causes muscle destruction. Those muscles don't really function anymore and have to be rebuilt if they are allowed to get very bad. It is a very rare disease, and not many doctors have seen it, so it tends to go unnoticed or undiagnosed. This can cause weak muscles in the thighs, upper arms, neck, back, stomach & throat. Yeah- the throat. Some people with DM (mostly in the adult crowd) require a breathing tube and a G-tube for nutrition. As the mother in the video states, it is a systemic disease, meaning that it can affect the internal organs.
And, as an update from her last doctor appointment, our pedi had ordered a CT scan of Emily's sinuses. We saw her on Monday. Em's sinuses are totally stopped up. Sooooo, she has another week left on Clindamycin, when we will switch back to Augmentin. This will mean that from October to the middle of January, she will only have had about a 13 day break from antibiotics. Woot! Crazy, huh? She was only home from the hospital with the staph infection for about a week before her cold, which quickly turned into sinus infection, began. And she only had a 3 day break between rounds before my Sunday call to the doctor. Sometimes the disease is worse than the medicines, but sometimes the medicines make life worse than the disease. It's a balance that's really hard to attain sometimes. I'm just thrilled that they didn't want her to be admitted to the hospital. I figured that after 2 weeks on 2 of the strongest oral antibiotics, still with a fever, and still so congested, that they would want something stronger. I truly feel blessed to be able to spend Christmas at home. (As long as nothing goes wrong between now and then!!!) Prayers are always free and very appreciated!!! We are always very thankful for as many prayers as we can get. They are all that we need. <3 Thank you!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Thursday, December 22, 2011
A link for you & a quick update
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