When this woman asked for help, she was told by a nurse practitioner that her nearly debilitating symptoms were 'imaginary.' It wasn't until a year later that she finally got an accurate diagnosis.
By Stefani Shea-Akers, as told to Keri Wiginton
My “imaginary” problems progressed quickly. And the following year, after a lot more tests, a doctor diagnosed me with myasthenia gravis .I was a bit of a workaholic in my former life. Things are completely different now. I had to stop teaching because my symptoms are so serious. I’m 40 now, but I lost my academic career in my 30s.
Now I try to savor moments every day. Sometimes I sit in my yard, just watching the birds and leaves. It’s a good form of mindfulness. I started painting again -- I never had spare time for my art when I worked a lot.Plus, I tap into my research and writing background. I use those skills to raise awareness about MG and share stories about my journey through chronic illness.
When I’m not recovering from surgery, I try to stay active and build up my strength. Right now, I’m working on walking longer distances. I do short walks inside my house or outdoors nearly every day. I also stretch regularly, which helps manage some of my chronic pain from injuries.I follow a pretty strict routine each day. I try to eat my meals at the same time. That helps me stay on track with my treatment schedule -- it’s essential to take my medication and infusion at the right time.
I’d never heard of MG when I was diagnosed. And I’m guessing most other people haven’t either. It brings me joy when someone tells me they’ve researched my condition or treatment. I know it means they’ll have a better understanding of what my life is really like.A rare disease diagnosis can be the beginning of a new life. It’s OK to grieve what you’ve lost. But prepare yourself for the changes ahead.
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