Tuesday, June 21, 2016

10 Years Ago This Month...

10 years ago in June, MS was already raging within me. It would take a few more months and things getting significantly worse before I would go to the doctor for the first time. But 10 years ago in June, my right leg was quite numb most of the time. It was an often painful, weird feeling. I play horn and when I played with the bell on my leg, it was agonizing. Sometimes it was less of a numb feeling and more of a pins-and-needles, my leg just fell asleep kind of feeling. Sometimes it wasn't just my right leg and foot, but my right arm and hand crashed the party as well. Again, since I play the horn, I noticed this particularly when playing the horn. I convinced myself that I just now had developed an allergy to nickel silver. I started doing research on how I could deal with this new allergy.

I told myself stories about what it could be. Not catastrophizing worst-case kind of stories, but more like, this-is-totally-normal kind of stories.These weird symptoms seemed to come and go a little bit or rather, sometimes be way less or way more intense. I didn't put it together then that heat was a big factor in swinging things to the worse side.

I eventually started to Google these symptoms, but didn't have a whole lot of luck, in part because I struggled to come up with the right search terms. I had enough trouble describing to myself what was going on. I talked to a few horn friends about the supposed allergy thing. It would still be almost 2 months before I told another person the whole story, when I mentioned to my mom in a by-the-way kind of way as I was preparing to hop in the car to drive 12 hours by myself that "My right leg has been numb for a few months now!" I'm sure she really loved how I chose to deliver that one.

By the end of August and beginning of September, things were very different. I was falling down and having a whole lot of difficulty walking. I eventually went to the doctor and I eventually got a diagnosis. But 10 years ago this month, I was living in semi-blissful ignorance. I, of course, wish now that I had gone in sooner and thus gotten on a drug that worked sooner and prevented so much of the awful damage that was done to my brain and spinal cord during this time. The often severe chronic nerve pain I live with to this day - could that have been prevented if I had recognized sooner that a constantly numb leg might be something to deal with? Probably not, but maybe.

But I'm also a little jealous of 10-years-ago me, who (despite my numb leg) had all kinds of dreams and plans that I thought I could achieve. [Current me, of course, still has dreams and plans, too. They've just changed, by necessity. And my belief that I can achieve them is probably not as strong.] That girl who had no idea of the onslaught of financial and insurance related hell that was soon to fall down upon her for probably the rest of her life. The girl who was just a student, halfway through her Master's degree. The girl who was young and healthy and independent.

Anyway, happy sorta-approximate MS anniversary to me! I'll be celebrating the *official* 10 year anniversary in September when I was diagnosed, but if you want to send gifts now, I'm told that the traditional gifts for a 10 year anniversary are tin/aluminum and the modern gifts are diamond jewelry. I'll accept either, just know that if you give me diamond jewelry I'll almost certainly sell it for cash because diamonds are NOT this girl's best friend. ;-) And, of course, I could use that cash to pay my medical bills.

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