Wednesday, May 13, 2015

76 Things: #11 - Diagnosis Day


On May 13, 2008, I was diagnosed with multiple sclerosis.
Technically, I was living with MS well before this date but my relationship status with multiple sclerosis officially became “it’s complicated”, seven years ago today.

I’m not sure how to classify this “anniversary” of mine.  It’s not a sad day…nor is it quite a happy one…perhaps the best way to describe it is a day of remembrance of hearing my diagnosis for the first time on that beautiful day in Rochester, Minnesota.
And so begins my “Seven Year Itch” with MS…and I’ll be honest, he’s constantly crawling under my skin; I can literally feel him tingling throughout the day.   He is always messing with my vision and loves to steal my short-term memory.  Also, if I didn’t know any better, I’d swear he intentionally tries to trip me sometimes.  The guy is such a drag, I barely have energy for anything else during the day.

I could go on and on about what a terrible partner he is; but alas, breaking up with MS isn’t an option.  Maybe in another seven years?

Monday, May 11, 2015

76 Things: #10 - Needlework

During the first three decades of my life, I rarely had any interaction, spent very little time with, had minimal experience with and absolutely no interest in getting to know….needles.
If you ask 100 individuals on the street, “Assume tomorrow you will be diagnosed with a chronic disease.  It will impact your life greatly.  Daily treatment options will be:  1. A daily pill or 2. A daily injection – Which will you choose?”  All 100, in my estimation, would choose option 1.  In fact, any pre-30 year old version of me would probably answer, “For the love of all that is good in this world, I choose daily pill.”
My familiarity with needles quickly changed in the years leading up to my diagnosis.  Drawing blood was a common occurrence.  At The Mayo Clinic, while testing me for multiple sclerosis, they drew spinal fluid.

My spinal tap deserves its own posting…and one day it will receive it.  I will say this; it was – without a doubt - the most painful experience of my life.
Shortly after being diagnosed with MS, I started up on Copaxone.  At the time, it was a daily injection that I gave myself.  Recently, Copaxone began offering a “Three-Times-A-Week” dose, which I happily switched to.  An injection is still required but no longer every day of the week.  I rotate, throughout my body, where I inject myself (primarily, the thighs, hips and stomach area.)

Five years ago, in addition to Copaxone, I began IVIG.  Every four weeks, on two consecutive days, an IV is put into my arm for about five hours as the medicine slowly drips into my system.
By now, I should probably be used to it when I hear “Big Stick” right before the needle enters my arm but honestly I still dread it as much as I did the first time.  So I stare off into the distance, imagining a world without MS or being pricked with a needle on a regular basis.  Sometimes, I hear “Deep Breath” or, “Here We Go”…the preparatory words really don’t matter; they are background music to my alternate universe.

I close the #10 Thing You Might Not Know About (My) MS with an ode/haiku to needles…

Needles, go away

Don’t come back some other day

Yes!  “Big Stick,” no more

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