I live with indolent systemic mastocytosis (ISM). I have had it for an exceedingly long time: I was diagnosed 26 years ago. I was on my own with this disease until I was chosen to be a part of a clinical trial. For these last five years, for the first time since my diagnosis I was treated properly. But my time in the trial is now over, and I just got home from my first visit to my new doctor for SM in Alabama.
My first trip to my ISM specialist
I was so nervous meeting my new specialist for the first time. I was also worried about how often he would want me to make the six-hour drive to Alabama from my home in Louisiana. The hotel, gas and food plus the copay amount to see the doctor took quite a bit of money that I just don’t have. (Thankfully, I may qualify for travel grants in the future.)
I stayed at the hotel nearest the hospital, which I chose because they had a shuttle that would take me to all my appointments. That’s a huge plus if you don’t like to drive downtown in big cities, which I do not. I like to drive my car straight to the hotel and not move it again until I am leaving.
Upon arriving for my appointment, I was sent to the lab for bloodwork, then back to the waiting room to wait for my name to be called to see the doctor. It did not take long at all until I was called to an exam room.
When the doctor strolled in, at once all my stress and worry disappeared. He came straight in and just kneeled beside me and started talking. His first words for me were, “Tell me all about yourself. I want to know everything.” Then we moved on to the topic of how I was doing with the medicine and the dosage I was taking.
I knew at once that he had taken the time to read over my medical history because he asked me questions that I would have forgotten to ask and inform him about. I have been to quite a few referral appointments where I knew that they did not even look at the medical history provided by my referring doctors.
He was in no hurry to move on to the next patient. He took his time to really talk to me and learn more about my story and how I finally got my diagnosis after years of searching. We talked about how even today this is still happening to others.
I was also so relieved when he told me that he would like to see me every six months unless I had any sort of complications and needed to come back sooner. I can manage the expense of a trip to Alabama two times a year. I was really thinking they would want me there every three months.
I walked out of my first appointment confident that my clinical trial doctor had made the right decision to send me to Alabama to continue my treatment.
A new search for answers
Since I was going to arrive a day early for my SM appointment, I had called and requested an appointment the evening before with a dermatologist. I have been searching for a diagnosis about a spot on my arm that has been growing for four years. I have already had four biopsies on it, and no one has been able to diagnose it and help me.
The dermatologist I saw there took another two biopsies and told me that they would send them off to experts across the U.S. After she heard about my symptoms and how the sun burns the spot on my arm at once when I step outside, she is leaning toward a connective tissue disorder.
That is all I need: someone else to help fight for answers.
So now I wait for weeks until they can get some information back on the biopsy. Whatever they find I will be strong and make the best out of life like I always have. I am bold and strong willed. And I never back down.
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