After months of experiencing agonizing symptoms and undergoing endless tests, I was officially diagnosed with Antisynthetase Syndrome. It is a rare condition made up of multiple autoimmune diseases. In my case, I have Polymyositis, Interstitial Lung Disease, Mechanic’s Hands, and Reynaud’s Phenomenon. I’ll never forget the thoughts running through my head when I received the diagnosis;
“Will I ever be able to go back to work again?”
“Can I keep going with my studies?”
“Will I be able to hang out with my friends again?”
“I don’t think I can go hiking again”
“Will I be able to ride a bike again?”
“I don’t think I will ever use my paddleboard”
“When will I see my family again?”
This disease came at the worst point of my life. I just started my new job at a school as a paraeducator, and I was studying for my Master’s in Education so I could become a licensed Elementary School teacher. I just moved to a new apartment with my husband and we got ourselves a cat. I was a very active person. I used to go hiking, ride my bike, and just learned how to paddleboard. It seemed like I was finally making sense of my life.
My symptoms started when I came home from work one day. My husband and I were supposed to go to a concert that evening, but I had a fever and just stayed in bed all night. A few days later, I was walking up the steps of a stadium for an ice hockey game and I started feeling out of breath. That night, I struggled to change my clothes. I couldn’t lift my arms and I started to cry. My husband had to help me get changed. I also struggled with getting up from my bed.
I immediately spoke to a doctor and he made me get an x-ray and a couple of blood tests. He said that it was Pneumonia and instructed me to take antibiotics for 5 days. Nothing changed, and my symptoms started to increase, so I went to my primary care doctor and she gave me more blood tests. It turned out that my CK levels were at 14,000, so she referred me to a rheumatologist. I had to take more blood tests, a CT scan, a PFT, an MRI scan, and an EMG in order for the doctors to determine my condition.
It was then I knew my life had to change. I took leave from work and rested at home as much as I could. My husband had to help me with a lot of things like getting things from shelves, lifting me up from the bathtub, and having me hold on to him while we walked (so I wouldn’t fall).
As much as I had to stop doing the active things I normally love doing, I feel very fortunate to have the best support from my friends. I remember being invited to a friend’s house party one night (it was a small gathering), and my symptoms were at their worst. I thought I wouldn’t be able to go but my friend made sure I would feel included. He saved me the best chair in his apartment so I could easily talk to other people and he made me the BEST mocktails. I think it was on this night that I thought to myself… maybe I could still do the things I love?
While my symptoms were slowly improving (thanks, medication!), I was able to continue my studies online, and I started to go out for short walks and they slowly got longer. I started to lift my arms higher and higher before I had a go at sitting down on the floor. I continued my board game nights and the odd movie night with my friends. Finally, when I got the O.K from my pulmonologist to fly again, I jumped at the chance right away! I got to visit my family in Europe. It was during my visit there that I decided to try something… ride a bike. Well, an electric bike. I did it! I got to ride a bike again and it was just great. My husband rode his scooter behind me and checked in on me from time to time to make sure I didn’t fall.
When I flew back home and wanted to make the most of the summer, I started to think to myself “Surely, if I can walk more and ride a bike… then I could paddleboard?”. My husband was very confident and convinced me to go ahead with it. We went with some friends and… they helped me a lot! We had to pump up my paddleboard, carry it to the lake, and then make sure I got on it safely. I’ll never forget that feeling once I got on the lake. That feeling of… “Yeah. I. am. DOING. IT!”. I was standing on the board. I moved the board with the paddle. AND… I even went in for a quick dip (with a vest, of course!).
I know I haven’t had this condition long, but I feel that I wouldn’t have made it this far without the best support from my family, friends, doctors, and the online Myositis community. Without the support, I wouldn’t have believed in myself. I don’t think I would have been able to do the things I have been able to do in the past few months. If you had told me earlier this year that I would be able to walk uphill, get something from a cupboard, lift my arms, sit down on the floor (and get up), fly on a plane, ride a bike, AND paddleboard, I would most likely say… “You must be taking the ****!”
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