Ellen's journey with Polymyositis

Ellen Armour shares her Journey with Polymyositis for Myositis Awareness Month and MSU’s #MyositisLIFE project. 

ellenI have polymyositis [PM], having been diagnosed 24 years ago. The diagnosis was confirmed after six months of testing.

I was working in the fitness field as a personal trainer and a group fitness instructor when I started feeling weak, unable to climb stairs like I normally could. I thought I was over exercising. I was going to start school to become a Physical Therapist, but I had to put my career plans on hold.

When the diagnosis confirmed from a biopsy that it was PM, the doctors thought it might be ALS, my treatments started. Initially, the doctors told me they thought it would burn out because I was in good physical condition. I was an athlete growing up doing gymnastics, cheerleading, softball & even played college softball.

The years passed, with multiple flare-ups, so that this wasn’t the case. My battle had just begun. I was started on a high dose of prednisone and then tapered down. At the time I had just been married to my college sweetheart Stan and we wanted to start a family. We decided to wait five years to see how this disease progressed. I was on a low dose of steroids for five years when I got pregnant with my first child, a son. The pregnancy was the best I had ever felt since being diagnosed but the doctors told me that I would probably have a relapse after the pregnancy. I had a normal birth, went full term & delivered a healthy baby boy, named Thomas.

Unfortunately, the doctors were right. After the delivery I did relapse and was again on a high steroid dosage. I started feeling stronger & became pregnant again with my second child. This pregnancy took its toll on me. There was a lot of issues early on. My baby girl came one month early and was delivered by C-section. I had a healthy baby girl, Samantha, and am blessed to have two children today. This pregnancy left me the weakest I had ever felt.

Ellen's journey with PolymyositisI then started to seek treatments other than prednisone. I got involved with the National Institute of Health [NIH] in Bethesda, MD & was tested for different options. I started treatments such as IVIG as well as other meds, like Methotrexate, Imuran, Cellcept, Antibiotic Therapy, Enbrel, Acthar, etc. The meds would provide some relief and I would bounce back and be able to take care of my children with the help of my husband, my mother and other family members. I wasn’t able to work during this time but I was able to take care of my children. When my children entered Elementary School I started to work again part time. I continued to exercise as I thought that would help me and I loved to stay healthy in my mind and body.

After years of being on long-term steroids, I started to develop side effects, such as osteoporosis, and developed fractures in my spine. I ended up needing two spinal surgeries with the last one a spinal fusion, both very difficult to recover from.

After the last spinal surgery, it seemed I became prone to other issues and had multiple surgeries for kidney stones and other issues that I am still dealing with today. It’s been 24 years and I’m still struggling, unable to work, but I continue to stay as healthy as I can by working out and staying active, trying to keep my muscles and bones strong. It’s a battle but it’s up to me to stay positive and take one day at a time with the hope that one day there will be a cure for this disease.
I am my own advocate, trying to stay current with any new treatments that come out. Currently I am tapering down on the prednisone and I am at 12 mg per day. I am doing Rituxan treatments that started when I became involved in a clinical study at The Hospital for Special Surgery [HSS] in NYC. This treatment jump-started my muscles rebounding, allowing my CPK’s to reach into the 40’s. I still feel that most if my weakness today has been caused by long term steroids (myopathy). I continue my workouts, PT, Massage Therapy, acupuncture & meditation.

I’ve been blessed with a loving & supportive family, two dogs Molly & Hope & friends to get me through the day. I enjoy getting out when the weather is nice, going to the park with my dogs & enjoying beautiful scenery. It makes me feel peaceful. My motto is Hope, Courage, Strength and I try to remember that each and every day.

This is my journey & I’m going to make the best of it!

Author: Ellen Armour


 

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

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