First I gotta say WOO HOOO!! I have DM (dermatomyositis) and I know that there are only 20,000 adult cases of this in the US. It’s a rare disease and in being so, it goes unnoticed where we want it to be noticed-Mainstream. If a Hollywood-ite holds up a bracelet that says Cure JM the whole world will be asking, what is JM? And the awareness train leaves the tracks. Thank you Johnny Depp. Dermatomyositis is an awful disease, but JM for kids is even worse. I SO appreciate you taking the time to hold that up for the 5,000 kids that suffer with this disease in this country.
Click on the link and go say hi. See if there’s anything you can do to raise awareness of this awful disease.
In this country we have only 20,000 cased of DM (dermatomyositis) in adults. For children that number is much smaller, only 5,000 children in the US have JM (juvenile dermatomyositis).
There is an amazing resource for kid that have DM and their families called Cure Jm Foundation. It was started by parents of children with JM. Here’s a video from Cure JM Foundation that tells about the autoimmune disease for children.
Thanks again for showing your heart to the world. It might make a big difference to these kids.
I’ve been going through an old journal/blog of mine that I had set to private. It was basically a place where I vented to myself (lol) and also as a symptom tracker. It’s weird to read through it, I forgot just how truly awful things were. I’m posting these as I think they might help someone who’s newly ill/diagnosed/trying to get a diagnosis. I really was frustrated, sick, in pain, and flat out tired. I think it’s normal for someone who doesn’t really know what’s going on to have so many negative emotions. It takes time and repetition with those bad symptoms to not panic when you get them, to not be so angry, etc. I don’t buy that expression ‘time heals all wounds’ I think that’s bullshit. Time allows us to have experience with issues so they’re not so big, scary, awful. They become a little less. They still suck. I hope this helps someone out there. You are so not alone.
(I added these in the upper left hand corner of the blog, right next to About Me.)
I’m still sitting out back drinking my coffee and thinking. In a few hours we’ll be heading up north for my last visit with my rheumy before we move. He was my second rheumy and the first doc to really show that he cared. I was SO excited when he said he’d take me on as a patient. When I started infusions it was in his hall. The infusion nurses went on and on about just how awesome he is. I really, really hope that I can find one after the move that comes anywhere near his level of professionalism and kindness. I hope I don’t cry, lol! I guess we’ll see. 🙂
We’re in the process of packing to move across the country. It’s a job that seems undoable to me at the moment. Whatever’s going on in my body makes me really, really unreliable. When I’m standing upright I have an overwhelming need to lay down. Go horizontal no matter if I’m in public or not. Haha! I’ve never laid my body down on the ground while out in public but the awful rush of the feeling of gravity pulling me into the ground is almost unbearable. Have you ever been on a ride, like a roller coaster where the ride is going so fast that you feel the g-force pushing you backwards? That’s what it feels like except it’s pulling me into the ground. sigh. I’m so completely, completely over my body doing all of the weird stuff it does.
One of my specialists tells me it’s CFS/ME the other thinks the DM is becoming active again, albeit very slowly. I guess we’ll see in time if that’s what it is. For right now though, I can get up from a chair without using my hands. That sounds so simple, but it’s the major test with my rheum to check my muscle strength. I can do it!!! I can climb stairs, I can get out of bed, I can walk down stairs which was always harder than climbing them. My muscles, other than being atrophied, are doing what they’re supposed to be doing. I should be celebrating my remission!! But there’s something else going on. How unfair is that?? To be in remission and be sick as hell is supremely unfair. I just keep telling myself ‘your muscles are good. your muscles are good’…it’s my mantra and it’s all about perspective.
Image courtesy of Burly Man, another Myosotis fighter.
Don’t you? 😀 Hate it, hate it, hate it!! But it is what it is. I try to enjoy the good times with every fiber of my being. This disease and the whole process has changed me for sure but I’ve received some really good things from it too. I am aware of time and just how valuable it is. It’s made me appreciate my family and friends more. I tell the people I love that I love them all the time. I probably sound like a broken record but I mean it. Being aware of your own mortality is a little scary but it really does make you appreciate. Everything. I’m very lucky to be here on this earth, complaining about my health. haha!
Whatever is going on in my body will not keep me down. We ARE going to be fully packed and ready to go by the end of the month. I’ve found a new mantra.