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October 5, 2020 - Its Multiple Sclerosis


    Today I was diagnosed with Multiple Sclerosis. It is both unbelievable and also made total sense. I guess I have and wanted to dismiss MS as a possibility. I felt that because my uncle had MS, that I wouldn't because it is rare. Only 400,000 people in the United States have MS and only 20,000 people are diagnosed each year so it seemed more likely that it was something else.

    Quite honestly, the idea of having MS scared the living daylights out of me. I remember being 8 or 9 years old and going to meet my uncle for the first time. He lived close to 300 miles away from me and it was a 5-hour trip north to see him. I remember my grandmother coaching me and preparing me along the way. When I saw him for the first time the gravity and severity of his disability hit me. I was worried for him and sad that he was unable to move. He died in 1998 shortly after he suffered a 2nd stroke due to complications of multiple sclerosis. Those memories of that visit kept flashing into my mind.

    I wanted to cry and scream but I just sat completely numb full of shock while my mind panicked. I couldn't think of what to ask, what to be concerned about, or how to react. The neurologist didn't offer much sympathy but rather seemed hurried and rushed my appointment. I expressed my concern about my future and he spewed off 2 medication options. He also talked briefly about the JC virus, which I never heard of before, and PML. I assumed the JC virus was rare and unlikely but after my appointment, I went to get tested for it. I didn't get my results right away but come to find out the JC virus was very common and I was positive. 

    All the symptoms, the anxiety, the sudden change in my body day to day - it all made sense now.

    It's so scary. I feel like life has totally screwed me. I would be lying if I said I wasn't terrified that I would end up the same way as my uncle, worse, or in a very similar situation. Just the thought makes me want to cry. What a horrible fate. What a horrible punishment. What hell. What did I do to deserve this? This kind of thing should be meant for the worst of worst kind of people. Not me, I am a good person with good morals and high standards. This completely and strongly is testing my faith in a higher power.

    I'm scared that this is not just going to ruin my life but my husband's too. I am scared for all the challenges it might pose and the difficulty it will bring him. He got a defective wife. How am I supposed to be his rock when I will always be vulnerable both physically and mentally. How am I supposed to keep the promises in the vows I made to him when there will likely be a time when I will depend on him for everything. I don't want to take away from his life. I don't want to be the person in the wheelchair holding him back from everything that could be good in his life. I am sad for my self but I am most sad for him.

    It seems that I have a lot to learn and figure out about this disease. How do you fight something that has no cure? This all feels like a cruel joke and everything feels bleak.



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