Even though I live with a systemic mastocytosis (SM), I strive to give hope to others going through the same thing as me. Some days, it’s easier than others, but I give it my all.
I share my medical journey on social media, and I write articles. I am involved with several support groups and just recently started working with Louisiana’s Rare Disease Advisory Council. I wish I could do more to help those who feel all hope is lost.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
Indolent systemic mastocytosis (ISM) has tried its best to take everything from me. My career, health, sanity and the ability to play with my grandchildren. Even holding my newborn granddaughter is hard because of osteoporosis.
Read more about SM signs and symptoms
ISM has destroyed my bones. I am in physical therapy to keep my legs strong because walking feels like I am trudging through mud. But I keep going through the pain. Life must be lived.
Housework must be done a little at a time. I cannot sweep, mop or clean the showers and tubs. Doing laundry is hard; just putting clothes in and out of the washer and dryer takes a toll on my back. I have someone clean my house once a month to help me out. I hate needing help because it hurts my pride.
I must accept it now. If I take things slow and take breaks, I can complete most of what needs to be done. I make myself go on walks now that it’s cooler here in Louisiana. During the summer, I can’t tolerate the heat, which causes flare-ups. I swim daily during the summer to keep my strength up.
Stay strong and fight
But always in the back of my mind is the question, “Why did this happen to me?” It’s not fair. But none of us asked for this. So all we can do is stay strong and fight. I continue to share my story to raise awareness of the rare disease community. My hope is that if one person reads my story, and she can relate, then this is all worth it. It took years before I was open about my ISM.
I never spoke of it. The only time I did was when someone asked me about the urticaria pigmentosa on my skin. I was so embarrassed. I never wore any cute summer clothes because of the way I looked. Since starting treatment on avapritinib, I no longer have that problem. Most of my “spots” have gone away. This was caused by cutaneous mastocytosis, which I also have.
I still have dreams. I am on injections for my osteoporosis and am hopeful that someday my bones will be strong enough so that I can have the back surgery I need. But I won’t stop. Since day one, I have said that this disease won’t beat me, and it hasn’t. I do the things I want to do, just in a unique way now.
I used to love to hike national parks all over the U.S. I would take spontaneous cross-country trips on the open road. Those were the days. Now road trips are hard because of my back.
But I still travel. Recently, I returned from England and Scotland. I just took things slowly and at my own pace. No tour groups. I traveled by train from one destination to another. I felt free, just like I used to feel when I could do anything. In my head, I still can. My body just won’t cooperate.
All of this is to say: “Don’t give up on yourself. Keep the good fight going. Find something that gives you purpose.” I don’t like hearing the words, “I can’t.” I can. It just looks different now.
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