Living with indolent systemic mastocytosis (SM) for the last 25 years diagnosed (and searching for someone to believe my symptoms and help me for years before that), I now live daily with depression, anxiety and stress. I have tried so many medications and meditation, but these feelings are always there. Even while fighting this disease, I used to live an adventurous life — until 2021, when I was surprised with a diagnosis of severe osteoporosis.
When the adventures stopped
Being diagnosed with osteoporosis left a huge void in my life. I was no longer able to do the things I loved to do. Hiking national parks all over the U.S. in cooler temperatures, cave spelunking, rappelling, white water rafting, the list could go on and on. It all had to stop.
My adventurous life first took a huge hit in 2009, when I had to give up flying. My ISM symptoms had progressed to the point that I was unable to get my medical certification, and all those years training and becoming a commercial pilot with my instrument rating were over. It left me with a void that I have not been able to do anything about.
Thank goodness the opportunity to write and advocate for this disease and other rare diseases opened. Putting my words on paper in the hope that I can help someone out there dealing with similar circumstances has helped me immensely. But that void is still there deep inside me, still waiting to be filled.
Diving in to new experiences
I love the water. I swim daily in my pool, not only because that is the only way I can be outside in the Louisiana heat, but also because it’s something I can do that does not hurt my back or carry the danger of causing a fracture.
Last month, my son surprised me with a trip to Florida and took me swimming with dolphins and then snorkeling. Being in the open sea with unknown dangers was exhilarating. Snorkeling in the shallow waters and seeing all the marine life in their natural habitat filled me with so much joy and upped my confidence and hope that there may be something for me out there that I can do.
Then the thought came to mind that learning something new that involves water and adventure would be perfect for me. Learning to scuba dive.
I researched diving while living with osteoporosis, and learned it is possible with safety precautions in place to minimize risk. For instance, heavy equipment can be donned while in the water. Also, no rocky entries off the shore or while underwater. Of course, my doctor has approved this and he is excited for me.
I found a scuba diving center about an hour from me. I meet with them next week, and will hopefully begin my lessons soon. I am thrilled, enthusiastic, and so excited about this new opportunity for adventure that I have been denied for the last four years of my life.
Since learning I had osteoporosis, I have been on injections to help build my bones. There has been improvement. I am hopeful that the injections every six months continue to improve my bone density and that I have more days filled with excitement and adventure ahead.
We all must deal with managing depression and stress — they only make living with a rare disease worse. And we all must find a way that suits who we are as a person. l feel alive again, and I hope that all of you out there reading this will find inspiration to find something new that you can enjoy and live life to the fullest!
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