My story begins in the early summer of 2011 on a small island in the Pacific, Okinawa, Japan. As a lance corporal (E-3) in the US Marine Corps, I was at peak health at the time. Out of nowhere, I began to experience extreme abdominal pain and bloody stools that lasted for weeks. Eventually, I had enough and sought emergency medical care. I was told that I had waited so long that I had an iron deficiency and they needed to do a colonoscopy.
Long story short, I was diagnosed with ulcerative colitis. Or so they thought.
After a few treatments of steroids and regular daily doses of mesalamine, I began to stabilize but then would have another flare-up. This continued until I was eventually medically separated from the military in August 2013. At home, my journey continued with constant flare-ups and more treatments with steroids for the next 7 years until I finally got a new gastroenterologist.
After countless colonoscopies and multiple steroid treatments, biopsies determined I had abnormally large counts of white blood cells. With this discovery, she referred me to a hematologist to further evaluate my blood levels. He immediately recommended a bone marrow biopsy, which confirmed a diagnosis. I had a rare blood disease without a cure called systemic mastocytosis (SM) with an overlap of hypereosinophilia.
“What the heck is that,” you ask?
SM is when someone’s body overproduces white blood cells. If it goes unnoticed, it can lead to organ damage throughout the body. There are different levels of severity of this disease, with the most severe leading to leukemia.
A unique aspect of this disease is that there is not just one area of the body that it can affect. Side effects can include brain fog, memory loss, anxiety, depression, mood swings, fatigue, joint pain, bone pain, loss of bone mass, enlarged liver, enlarged spleen, enlarged lymph nodes, abdominal pain, hives, rashes, being more susceptible to anaphylaxis, and many more.
Also, certain triggers make living with SM extremely difficult to manage. Some things that trigger flares include changes in temperature, sunlight, exercise, certain foods, stress, and anxiety.
Read more about experimental therapies for SM
Even though there is no immediate cure for this disease, there are ways to make everyday living more comfortable for those who have it. I take a kinase inhibitor to help moderate my white blood cells and an H2 antihistamine to keep my body from breaking out in hives all over. I have read that most people with SM carry an EpiPen® with them in case of an anaphylaxis attack. Knock on wood, I have not yet experienced this.
The fear I have is the possibility that SM will gradually worsen as I age. In the beginning months of being diagnosed, I hoped I had the more moderate type, but as my life goes on I am starting to feel as if I may have a more aggressive form of SM. In order to have a more severe diagnosis of SM, certain findings must be apparent. These include an organ that has been directly affected (my ulcerative colitis); a second blood abnormality (my hypereosinophilia prognosis); a mutation in the c-KIT gene (which I also have); and issues involving the liver (recent tests have shown that I have higher than normal levels involving my liver).
The most common side effect I experience on a daily basis is extreme fatigue. Whether it’s the disease itself, the different medications I am on, or a combination of them all, some days I struggle to do even normal activities. Yes, the bone/joint pains get old and the sensitivity of the elements and my environment can be annoying. But it is the struggle to find the energy to take on the day that has taken the biggest toll on my life.
I was a US Marine who had no problem hiking 15 km with over 100 pounds of gear on and then would go surfing an hour later until the sun crept over the horizon. And yet now I feel as if I am a mere shadow of my former self who has days where I even struggle to get out of bed.
No matter how hard it gets and how many bad days I have, I must be strong. I refuse to let this disease take grasp of my life and dictate what I can and can’t do. It is up to me to keep the drive going and show the people around me that even though there might not be a cure for what I have, I can still beat this.
I am a fighter.