Living with indolent systemic mastocytosis (ISM) has its daily challenges. But some days are plain harder than others. Just recently, I have been having bouts with diverticulitis, and for some reason I have not been able to completely recover from it. I am on my third round of antibiotics and am awaiting a colonoscopy when my gut heals enough for the test to be performed.
In the meantime, the gastroenterologist discovered through a CT scan with contrast that my liver is enlarged, so she decided while waiting on the colonoscopy that she would run a test on my liver.
First there was blood work, then a fibro scan. Yesterday, she contacted me to let me know that I had F2 fibrosis of the liver. I was told that I should expect a call from another doctor to schedule an appointment to come in for a consultation to be assessed for nonalcoholic steatohepatitis, or NASH.
Read more about SM signs and symptoms
I did not know anything was wrong with my liver. All my bloodwork has been normal. So this came as a surprise to me. I have never been a drinker. I am slightly overweight with diabetes. I am on so many meds that I cannot keep up with them to battle high blood pressure, diabetes, osteoporosis and ISM and to keep my cholesterol levels down. I am under the care of my family physician, a doctor who treats my bones, a doctor in Utah who treats my ISM, a cardiologist and now a gastroenterologist.
Recently, my ISM symptoms have been getting worse. They have been under control for years now, with only the occasional flare-up. I believe my symptoms have worsened because of the stress of battling diverticulitis. Now I have been thrown a curve ball with my liver problems.
At this point, I feel like I am a puzzle, but my puzzle pieces are scattered all over the place. To put the puzzle together, all the pieces need to be assembled. Each doctor has pieces of information; somehow someone needs all the information to help me figure out what is happening to my body. This would be the only logical way to solve this puzzle. I am at a loss. I do not know where to go from here.
The one thing I do know is that I cannot just give up. This is just another battle that I will fight to beat this disease. My body is tired, and my mental health is struggling. I have always been optimistic, and I still am. My faith is strong, and I get my strength and ability to keep going from God. He has never let me down and never will. He is in control, and I place my hope in Him, even through the pain and suffering. He is the source of all comfort, and I genuinely believe that all the struggles I have faced throughout my lifetime are for me to provide comfort to others.
Sharing my journey with ISM is worth it if I can provide answers, help, comfort, support or give hope to just one person going through something similar. Even on the worst of days, I find joy. While I wait on more tests to be run on me, I will continue to pray that all is well, and I will not let this get me down. I did not want to go to physical therapy this morning, but I got ready and did it anyway. I have so much to live for, and I will fight whatever comes at me with the grit and determination that I have fought with for the last 25-plus years.
