I have lived with diagnosed indolent systemic mastocytosis (SM) for the last 25 years. Prior to that, I spent at least 10 years undiagnosed, going to doctors trying to find out what was wrong with me. It was a long road filled with many valleys that would sink my spirit. I kept all this to myself and never spoke about how I was feeling or what was going on with my health. Only a select group of close friends and family knew what I was dealing with daily.
Once I was approached to write about my experiences dealing with a rare disease, I completely opened up. Writing about what I have been through and am still dealing with has helped me more than I ever thought possible. I never knew that so many people are dealing with the same thing as me. Things I held inside for so long are now so easy to tell everyone.
I don’t want anyone to feel isolated like I did. I can use all I’ve been through for the good of others. My goal now is to help those who read my stories. This journey I am on has been hard, and if anything I touch on in my writing will help others ease their diagnosis journey or everyday life, then my time spent writing will be worth it.
None of us are alone in this if we choose to search for help. Rare Disease Advisor and SM Companion are helping so many people find answers and other people going through the same everyday experiences. I am so thankful that I get to be a part of this.
We all want the same thing. A cure. In the meantime, we all need to know how to navigate this disease while we wait. It won’t be easy, but together we can share our knowledge and experiences so the road won’t be so rough for those having to travel it.
Over the years I have had problems with doctors not understanding my disease. I have seen doctors who don’t believe me. It took years to find a general practitioner that took the time to understand what I was dealing with. I have the emergency room trained in my hometown, but if I must visit one in another place, they will not listen to me. I do carry paperwork explaining ISM.
I lived on diphenhydramine until I finally found a doctor that specializes in my condition. Now I am on Avapritnib. It has lessened many of my symptoms and I am so thankful that this drug came along. I have very few side effects. I did just recently have to up the dosage because the symptoms that were alleviated were slowly trying to come back.
I have tried hot baths for the pain, which in turn makes me itch so bad it’s trading one symptom for another.
I regularly take ice baths. The cold does not affect my symptoms, and I use the ice baths to strengthen my body and my mind. My dream is to one day be able to go into the icy water in the most beautiful mountain lake. As of right now, it’s ice in the bathtub or in my swimming pool during a Louisiana winter.
Finding strength
I decided a long time ago to never give up hope. To stay strong and live the best life that I can. Life is better now because I am not hiding all alone pretending that nothing is wrong with my health. I am stronger now than I have ever been.
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