I grew up a little daredevil. I had a best friend, Paige, who was just like me. She lived across the pasture from my house, and we were always together, tromping through the woods, swimming in creeks and crawling through the water-filled culverts.
As if we weren’t living dangerously enough, when we were about 12 years old, our parents decided we deserved three-wheelers. We drove them as fast as they would go and jumped anything we could find. Occasionally, we’d walk in the house all blood-soaked, and no one even batted an eye. We were just country kids, growing up in Louisiana.
Life was so good; I thought it would last forever. I never thought that one day I’d have to live a less adventurous life, because of a rare disease called indolent systemic mastocytosis (SM).
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
I really don’t know how we survived childhood. To this day, Paige is still my best friend. We’re in our late 50s now. In my heart, I’ve always been a fighter, so even when I was diagnosed with SM at age 31, I continued to seek adventure. I lived like a warrior, raising kids and working hard, while battling SM and its symptoms. I was determined this rare disease wouldn’t beat me.
Stopped in my tracks
Then, in 2021, I was diagnosed with osteoporosis. Four days earlier, I had been in Missouri, exploring a cave system and scaling 60-foot walls with no safety equipment. When I learned about my bones, I became sedentary. I grew afraid. I no longer trusted my body wouldn’t fail me. I feared I’d break a femur or hip. The osteoporosis stopped me. That’s when life really changed.
Researchers highlight osteoporosis as early sign of indolent SM
Once I gave up on this body, it gave up on me. In five short years, my physicality went downhill. Now I can’t go out in the daytime in warmer months, because I’ve developed a heat intolerance. The sun makes me break out in a rash. I have a form of lupus that affects this one spot on my arm. I must keep it covered when I go outside, because it instantly burns and becomes painful when exposed to sunlight. Because SM has weakened my muscles, I’ve had to go to physical therapy several times to get back on track.
With persistence and time, I’ve gotten somewhat better. I follow an exercise program at home during the summer months, and I take walks during the fall and winter months. I’ve worked up to doing short hikes and even exploring cave systems. However, I don’t do any climbing, and I’m careful to avoid slippery areas. I’ll never be who I was before. I miss me like that.
Body awareness and self-advocacy
Through my SM journey, I’ve become a professional patient. What I mean is, I live in this body, and I know what it needs. For instance, when I have a diverticulitis or pancreatitis flare-up, I know to switch to a clear liquid diet immediately and alert my doctor that I need antibiotics. I’ve also learned, somewhat successfully, how to avoid triggers and prevent flare-ups. When they do happen, I barrel through them and keep going, because I know I can.
It took many doctors before I found a wonderful general practitioner who listens to me. And you know what? He agrees I know more about my rare disease and my body than he does, because I live in it!
I hope each of you knows the limits — and the potential — of what your body can do. I pray that each of you finds a diagnosis, and that your diagnosis journey is short. For the ones out there still searching, don’t give up hope. It took me more than 10 years of searching, going from one doctor to the next. You can’t give up.
If you’re mobile, keep going. Get stronger. If you’re sedentary, find something you can do to move your body if you’re able. I’m working on my mobility and getting stronger. I know I’ll never be the old me, but I can be the best me I can be today.
Does that make sense? Yes, it does. What’s the old saying? Mind over matter. I really believe that. God bless you.
