I've been diagnosed with MS for over 20 years. What started off as relapsing remitting eventually turned into secondary progressive MS. In the beginning my diagnosis was uncertain and I had to live with that for several years. The way that I found out that I was diagnosed with MS was painfully.
Far from home, I had some concerning symptoms and paged my then neurologist in the States. While I was in London celebrating my graduate school acceptance with my best friend, the doctor told me over the phone that he thought that my symptoms had progressed into multiple sclerosis and that I should follow-up with him when I returned back to the US. I was 4000 miles away from home with no family in sight. I was on top of the world and suddenly the world I knew had changed forever. I was young and I didn't know anyone who had MS. I didn't know who to turn to or how to navigate this complicated and hugely unpredictable disease. Family and friends talked quietly around me in hushed tones grieving as though it was somehow about them. I found myself for years dancing around other people's emotions trying to make them feel comfortable with my diagnosis.
Here's the good news: after many trials and tribulations I am here to tell my story and am in more control over my condition than I've ever been. While I will talk about this in future blogs, the long and short of it is that I quickly developed an inner circle of people who could be truly supportive and focused the next 20 years on finding the very best professionals in the field to help me better understand how to navigate MS and live life to the fullest. From employment choices, pain management, MS medications to obtaining top-notch rehabilitative care and some very useful equipment, I can honestly say that I have turned over a number of stones that have kept me active and considerably healthy.
A year ago I was in a hospital bed for over a week with pneumonia unable to move one muscle and today I am in an adaptive rowing program rigorously exercising three days a week. The cornerstone to my healthcare has undoubtedly been the relentless care of my neurologist who tried numerous therapies with me until we found the magic combination. Over the past 10 years he brought me from feeling hopeless as I began living life out of a wheelchair to feeling empowered by gently reminding me that I have the power to create change and eventually it sank in.
The takeaway is that there are only so many hours in the day and with a limited amount of energy, we have to make choices about what is most important. Don't let it take you 20 years to develop your winning team.
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