I have indolent systemic mastocytosis (ISM) and cutaneous mastocytosis (SM), but my diagnoses do do not define me.
Here’s what does: I am a 55-year-old wife, mother and Mimi to six grandkids, with another on the way. My furry best friend and constant companion is my dachshund, named Sergeant. I love the outdoors, traveling, swimming, reading and of course, playing with the grandkids!
Because of my diagnoses, my life has not been easy. There has been a lot of pain and suffering, anxiety and depression. Still, I have had the opportunity to experience life to the fullest. Through it all, I continue to never lose hope and fight a disease that has tried to take everything from me.
My journey to diagnosis
I struggled for years in my early twenties with symptoms no one could diagnose, including extreme bone pain, severe stomach problems, heart palpitations, brain fog and more. In 2000, I became pregnant with my daughter, who turned out to be my saving grace. My pregnancy led to my eventual diagnosis, but it also caused me to lose my self-esteem. I started noticing skin lesions all over me that continued to spread and would never go away.
After giving birth to my daughter, I saw a dermatologist and had a biopsy done. Cutaneous Mastocytosis was the diagnosis. I was then sent to a larger hospital in Louisiana with doctors who had some knowledge of this disease. There, they performed the first of many bone marrow biopsies. Test results revealed I had ISM. Finally, I thought–a diagnosis. Unfortunately, my relief was short-lived.
There was not much information to be found back then on this disease, and even after living with it for over 25 years, I am still learning. I was told all I could do was treat my symptoms, and that is what I did. The skin lesions (uticaria pigmentosa) were horrid. Not only was I miserable with extreme itching, but I was ashamed and embarrassed of how I looked. I had small children, worked full time, and was still trying my best to finish college. All of this took a toll on my body.
Redefining life after diagnosis
I was always active, and I stayed active even when my symptoms worsened. I told myself I was not going to let this disease define me or limit me in any way. So, I pushed forward. and with hard work and dedication. I finished my pilot certification and got my commercial license with instrument rating.
Over the course of my career, I’ve worked as a lineman at a FBO in Louisiana fueling military and commercial aircraft. I also flew executives for a construction company and volunteer missions with a non-profit organization that helped cancer patients get to and from their treatments.
Eventually, it was diabetes that took away my ability to do the job I loved, and I was a grounded pilot. It hurt. I was broken hearted. All that hard work, and it was over too soon. I continued working in positions that would keep me active, and with God providing my strength, grit, perseverance and determination, I carried on for many more years. I ended my career in 2017 not as a pilot, but as a boiler operator.
I injured my back while working, and the test showed degenerative disease in my spine. It took four more years and a trip to MD Anderson where I was given information about a clinical trial. I entered the Pioneer Trial in January 2021 in Salt Lake City, UT. It was there that I was also diagnosed with severe osteoporosis. The ISM had taken its toll on my bones. I immediately was started on Prolia injections to strengthen them. I am still currently in the clinical trial, and the results have been overwhelmingly positive.
Today, I have a purpose again–to tell my story. I want to be the resource for others that I longed for all those years ago.
To those who are struggling with their diagnosis, my advice is this: don’t ever give up. Advocate for your health and well-being. Love who you are and keep hope alive. Don’t let SM or any other disease steal your identity. I continue to push through all the obstacles that life throws at me. I find my strength in God and His Word. There is always a reason to fight and stay strong. Find your purpose and keep living your best life.
