I was diagnosed with indolent systemic mastocytosis (SM) in 2000 after almost a decade of searching for answers. When I was diagnosed, all I was told was the name of the disease and that it could not be cured — that all you could do was treat the symptoms and hope it didn’t turn into mast cell leukemia.
Read more about SM testing and diagnosis
My children were just babies when I was given this news. I was scared for them. The thought of them not having a mother growing up haunted me daily. It would continue to haunt me for the next 20 years. I was always worried that I would get worse. I hid the worry and the pain. I continued to pursue a career and work. I worked hard. I had it in my head that if I worked hard physical jobs and kept mentally focused, I could keep going.
I worked as a pilot, ramp agent (I can refuel any military, civilian or commercial aircraft), boiler operator at a paper mill and certified water and wastewater operator.
All these career choices kept me on my toes with my health. My body can’t tolerate heat, smells, and stress. These are my flareup triggers. But I fought through and worked hard. I ended up in the ER so many times after a shift at the airport or the paper mill. Often, I needed a diphenhydramine IV push. This was about all that could calm my symptoms when oral diphenhydramine could not take care of my flareups. I went often enough that the ER in my hometown now always knows how to manage me. It’s when I need to go somewhere else, they don’t listen to me.
It worked for 17 years, until I hurt my back. Symptoms started progressing and I eventually found out I had severe osteoporosis. It was then that I had to give up working, and applied for disability. It took two years and an attorney, but they granted me disability.
Disability doesn’t mean giving up the fight
I am thankful for this, don’t get me wrong. But it makes me sad at the same time. I was such an active person. Now I struggle to walk without pain. My legs feel like I am trudging through mud and my back is always hurting. Since I’ve been out of the workforce, I can’t tolerate any heat now. The only way I can go outside in the summer is to immediately get into a cool car or my swimming pool.
I wanted to write about obtaining disability due to ISM. It’s possible. It took a while, and all my medical records from all my doctors and hospitals. They did deny me twice, so I got the attorney and went to court. The judge gave me her decision at once. She said she did not understand why I was denied in the first place. It was such a relief.
I did go through bouts of depression, and still do. I am anxious. I miss my active lifestyle. I do have my writing now and that keeps my mind preoccupied. I have seven grandchildren to love and watch grow up. I still worry that my disease will progress beyond ISM to a more aggressive type, but I try my best not to worry about that. Sometimes the intrusive thoughts just get me down. It’s tough being in pain all the time.
It’s also hard watching my symptoms get worse. I am on Avapritnib and have been doing good on the 25 mg dose for almost four years. But recently they had to increase my dose to 50 mg. I just started on the increased dose, so I am hopeful that it will help keep my symptoms alleviated. The worst ones anyway. I have always had extreme bone pain, gastrointestinal problems, brain fog and horrid skin itching. I recently found out that my spleen and liver are enlarged, and if you read about this disease, you’ll learn these can be a sign of progression. I try not to give myself more to worry about, but sometimes it just can’t be helped.
We just all need to keep moving. Keep our chins up and fight this disease with all we have. I get my strength from the good Lord and He is always with me. He made me tough and hardheaded for a reason. So I could fight this!
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