A Light in the Dark: My Realities with Dermatomyositis

A Light in the Dark: My Realities with Dermatomyositis

How can I raise awareness if I'm not honest and real about all that comes with dermatomyositis? 3 min


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2 comments, 2 points

(originally written May 18, 2017)

This year has been quite the journey; yes obviously a journey of the physical body but also an incredible journey of the emotional and mental facets of the mind and body.

I still see over and over when my Rheumatologist Dr. Josh pulled his chair close to where I was sitting, after confirming my diagnosis and knowing that I knew the seriousness of this disease, he looked me in the eyes and said:

“It is treatable. It is absolutely treatable.”

Those words were both reassuring and worrisome. Reassuring because he said it so confidently and calmly; worrisome because he felt that he needed to assure me this disease is treatable. I replay that moment so many times in my head, I don’t know why really, I just know it’s stuck on repeat. I guess maybe it’s the fear that still sits inside my heart. No matter how confident I get to feeling about how I’m doing, the fear of relapse is always there.

People die from these diseases (the nasty little myositis family) mainly because each myositis is so rare too many doctors know nothing about them and by the time many patients are finally diagnosed correctly, too much damage has been done. That is why I am desperately asking you to at least read what I post so that you can learn and at least have a bit of familiarity with myositis. You just never know who you might be speaking to that has never heard of it, it might be that someone they know has had these crazy symptoms and is sitting in the hospital getting weaker and weaker, with high muscle enzymes or mysterious rash or shortness of breath–no one can figure it out, then suddenly you remember something you read or saw posted and mention it to them, it could be the info that saves their life or at least maybe gets someone looking for the zebra rather than the horse:

“Doctors are now being trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments”–Myositis Support and Understanding 2017

I’ve been feeling stronger than I’ve felt in well over a year, and it scares me. I don’t like to admit it. I like to remain positive and upbeat; but I don’t feel that I’m being fair to awareness. How can I raise awareness if I’m not honest and real about all that comes with dermatomyositis? I am scared every single day, there I said it. After a year of misdiagnosed pneumonia, not being able to get out of bed, not being able to cut my own food, getting meningitis twice, spending 3 weeks total in the hospital, I guess being scared is an understandable side effect.

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Even on the best days, there is the fear of what the next day might bring. Will all my progress be gone? Will something new decide to join this insane party? I don’t dwell on those things and I’ve gotten better at pushing them back down quickly. Hey at Physical Therapy yesterday I didn’t cry–I didn’t even tear up–when I had a couple setbacks because my knees continue to worsen even as other areas of my body are improving. I announced to my Physical Therapist “I’m growing up, I didn’t cry!”  I’ve learned to embrace what IS good and what is GOING WELL. Still, there are things that get to me. Last week I was walking outside and saw a woman kneeling in her garden, working and digging and weeding and planting. She jumped up, stepped back to look, jumped back down to dig and adjust, jumped back up to admire…you get the picture. I cried when I got home. THAT USED TO BE ME. I can’t say that will be me again, I have to keep myself real and accept that I may never quite have that exact movement ability again. BUT I’ve learned that adaptations are not just useful, they are welcome and OK! I’m learning that accepting my limitations is allowing me to push forward with what I can do. Do I need a wheelchair or a “beep beep” (the crazy electric scooters at the stores) sometimes? Yes I do. And that is okay.

How can I raise awareness if I’m not honest and real about all that comes with dermatomyositis?

My PT Alycia and my OT Chris are amazing, as are the aides at my particular rehab place. I believe that both OT and PT have me at the very least learning how to use what I do have to make the most of every day. Through PT/OT I have learned to accept that sometimes just showing up is a huge accomplishment. It isn’t about how much I do or how fast I do it, it’s about showing up and coming back and trying again and again. Alycia has to remind me now and then that it’s the disease not me that might have me going a bit slower. She’d probably say she has to remind me of that more than now and then, but she probably won’t see this blog entry so I’ll stick with now and then lol!

Please please please share this or as I said, any of the myositis graphics/info I’ve posted. Yes for me but also for who knows who might be helped. Remember, only 5 in 1 million are affected by dermatomyositis. That is only .05% of the population!! Share to make aware.

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Linda Rabinowitz

I'm a mom of 4 kids, diagnosed with Antisynthetase Syndrome/Dermatomyositis in 2016. My kids are all adults now (or so the law says lol!!), but my youngest who is 18 has autism and, while he continues to make incredible strides in independence, there is still a lot he needs compared to most 18yos. I was a stay at home mom for over 20 years until getting divorced. I returned to work in very early 2015, then had to stop in July 2016 as my job was very physically demanding and, being that my wrists would collapse when trying to hold even one shoebox (I worked at New Balance), it was time to stop. Now I'm just trying to find my way in this new world of chronic illness I've been thrown into.

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  1. Thank you. I have DM too and I’m losing strength and it’s infuriating and frightening. I’m frustrated because of the rarity of the disease and how few Doctors know anything about it. Having DM is a constant teaching position as well as an illness.

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