You must being doing fine!!!

You must be doing fine!!!

This image represents my determination, stubbornness, and desperation for something normal and happy in my #MyositisLife.1 min


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This image shows the mountain bike trail I rode, on Sept 20th, my first time back on the trails since my diagnosis of Dermatomyositis in May. I used to ride trails twice this distance, on MUCH harder trails. Mountain biking is a full-body workout…but Mountain biking (MTB) is my happy place – and I won’t have this disease take that away from me. This ride was hard; mentally, physically and emotionally. If you have myositis, you know the reasons why. Others don’t.

Myositis patients, donate plasma

I am always cautious about sharing these victories with even my small support team – much less the “general” folks in my life; because then they start thinking, “oh! she’s all better!!” and saying things like, “I am glad you are all better” or “she must be making it (the disease) out worse then it is if she can go ride a mountain bike.”

What this image represents is my determination, stubbornness, and desperation for something normal and happy in my #MyositisLife.

You must being doing fine!!!

Sept 20, 2019 - First time back on the Mountain Bike Trails since diagnosis (May 21, 2019)

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Anne Carlo

I was diagnosed on May 21st with Dermatomyositis - oddly, my initial symptoms did not present any of the familiar rashes; although I do get a bit of the cuticle issues now as well as the "shawl" rash. But I started with the excruciating muscle fatigue... This has been dark, alarming, shocking, frightening, challenging and life-changing for me. A big part of my happiness is being able to move in this world! working out with my trainer, mountain biking (i rode hard every weekend!), hiking, explore Manhattan every May for my birthday….just always moving…makes me happy and fulfilled. And all of that came crashing down like a house of cards. My 2019 timeline: February 25th – I had my annual physical with my internist and primary care doctor, and all was fine; I felt GREAT.March 1st – forearms hurting a lot…felt like carpel maybe…but never had that before and my ergonomics are fine. Wrote it off. March 5th – I had a session with my personal trainer and my quads were quitting. I couldn’t even do a standard back squat. March 7th – I went back to my Doctor reporting on this muscle pain. Lots of blood tests. ...and my CPK levels are ALARMING. He refers me to a rheumatologist. Over the next three months, I worked with a neurologist and with the rheumatologist for evaluations: MRI done on my upper left shoulder and arm (that showed uniform, inflammatory myopathy), EMG - the neurologists were almost alarmed; it showed an insane amount of activity when the muscle should have been "at rest." Biopsy - left deltoid muscle. The pathologist rendered a diagnosis of Dermatomyositis based on that biopsy. The biopsy is the final, conclusive test. I have a scar. During the evaluation (March, April, May), nothing helped with the pain….i was prescribed Meloxicam (prescription level Tylenol) but after a week, that didn’t put a DENT and I didn’t want to take a drug that wasn’t working. I did find ways to cope…manage…but it hurt to move. I would do something for 5 minutes and have to stop for 10. There were mornings I wasn’t sure I’d get out of bed; Swinging my legs over hurt or sometimes I couldn’t bring them over. Sitting up hurt. I couldn’t write, or type without excruciating pain in my upper body and forearms.TODAY, With an official diagnosis, I began a treatment plan on May 21st; I take 7.5 MG prednisone every day,...that is down from 40MG!!  And I take .6ml methotrexate every week. I still have some things to manage and cope with, and I am learning some limits, but I am eager to see how far I can get back to normal. I never wanted a new normal; I want my old normal. I f-ing hate new normal though...

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  1. Wow, well done! Your story is similar to mine – diagnosed in June and had incredible pain and weakness. I’m so impressed that you are managing to move more for your own health and happiness. I still can’t manage more than a 15 minute walk but every day I hope that with rest, and good food, and sleep, and meds, I am moving back towards being well again…keep fighting!

  2. @annecarlo There are times I find myself intentionally not doing something because of what others might think – that because I can walk with my cane one day, I am fine and all better. I am working on trying to not do that anymore and just live my life. Good for you though for getting out and doing something you love and miss. Keep at it!

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