It’s May so Myositis Awareness Month has arrived. Myositis is a crazy weird group of diseases, so I guess it makes sense that someone crazy and weird like me should have it! 🤓🥸 I have refractory (a disease or condition that does not respond to treatment) dermatomyositis. Actually, I have Antisynthetase Syndrome, the “umbrella” that my DM falls under. I’m forever thankful to Myositis Support and Understanding for the support, knowledge, research, resources, and did I mention support, during awareness month and all year long.
I have a bit of everything that gets listed as symptoms for Antisynthetase and Dermatomyositis, including dysphagia (trouble swallowing). It is usually mild, but it has become more and more of an issue when I have my bigger flares. I’m lucky that I’ve only ended up with aspiration pneumonia once since my lungs have become re-involved, many patients have it happen more frequently and more severely.
I am now on oxygen and needing to use a wheelchair more and more. My legs are getting weaker and weaker and I’ve decided it’s time to consider looking at a good, lightweight, chair or power scooter to help me be mobile. While getting Rituxan quickly into my journey with Dermatomyositis was a blessing, to say the least for my lungs, my muscles didn’t get the treatment needed and there’s been much irreversible damage done and, with these perplexing, ongoing flares, the damage continues. I feel bad when I see people I haven’t seen in a while because no doubt between the wheelchair, oxygen, and the steroid weight gain that finally caught up with me, it is a shock. I still catch myself in the mirror and see this chick with oxygen and am shocked myself!
I’m tired. I admit that I’m very very tired. It’s been a long 6 years of steadily worsening symptoms, especially pain and weakness, and lung involvement again since last year. I will finally begin Rituxan again in a bit over a week and hopefully, at the very least, my lungs will have a similar result as in 2016/17 and I can get off oxygen AND start reducing the steroids. While I admit to being tired, it is that and so much more for my family. It’s a rollercoaster ride of stress and worry for them that I wish I could help calm them, but I can’t.
Rare diseases suck. Chronic illnesses suck. Chronic pain sucks. Yes kids mama said “sucks”! Lol. But seriously! On the flip side, I’ve met some really amazing people and have learned, with their loving support, to find my voice for self-advocacy and to look inside to do what I can for myself and my family, sorting through what is in my control and what isn’t, and learning to enjoy things in new ways. Find your support, whether online, in person, hybrid, or whatever. For me, it’s been the warmth of Myositis Support and Understanding. The loving, unwavering support never ceases to amaze me and has helped lift me up out of some dark spaces. I’ve gained some amazing friendships; I’ve gained some amazing family.
Linda, thank you for writing this and sharing your Myositis journey and experience so openly and honestly. You are an amazing warrioress and have been hugely supportive to me. I, too, am so hopeful that with starting the Rituxan, you will experience some sustained improvement. And again, thank you for writing and in so doing, helping and supporting us ALL! You rock!
It’s so great to see you writing again, @momluvs4kidz! I am sorry for your struggles, again, and so very hope that Rituxan will once again be a saving grace for your lungs and that your muscle strength improves. These flares seem to weaken us more each time. Thank you for sharing your experiences and for being so willing to help others. So much love to you!
My love is with you right back. I’ve gotten good at seeing where muscle loss has happened…don’t know if that’s a good thing to get good at but here we are 🤷🏻♀️🤭 lol.