Wednesday, May 27, 2015

World MS Day - Awareness in a Bottle


In my previous careers, friends and colleagues often remarked on the perpetual smile I wore each and every day.  Morning or night, Monday or Friday, wherever I went, my smile seemed to follow.

Sometimes, I worried my penchant for smiling might actually work against me…perhaps my grin meant I wasn’t that serious about my job, or worse, I was hiding something behind my Nixonesque smirk.

The truth is, I was just happy.  No ulterior motives.  Even in my final year of active employment, when I instituted what I considered “smoke and mirrors” (i.e., doing whatever was required to survive in Corporate America while managing an aggressively spreading chronic disease), I still couldn’t wipe that smile from my face.  To borrow from Popeye, “I yam what I yam!”

That’s not to say I didn’t have my not-so-sunny moments.  Those usually centered on my daily commute…but I do remember one particular office politics pet peeve that always got the best of my spirits --- the “brainstorming meeting”.

I get irritated even writing about it now.   “Brainstorming” and “meeting” are two words that should NEVER be used in the same sentence.  You don’t schedule ideas.  No.  No.  No, no, no.  If I could avoid those meetings, I would.  Sometimes, I would just do my best Don Draper impersonation and just get up and walk out (and yes, I did it with a smile on my face!).
 
 

Having a brainstorming session sounds great, but here’s the reality:  No new ground is covered.  Ever.  Employees say what they think management wants to hear thereby checking the proverbial boxes of “contributing”, “adding value” and “collaborating”.  Added bonus if they achieve all three competencies and create no additional work for themselves.

The best idea will never occur while 10 people are sitting around a table talking about what the best idea should be.  There is no magic in that.  It’s like warming up some store bought “Chips Ahoy” and calling them fresh, out of the oven, home-made cookies.  No!

This brings me to what I’m writing about - “World MS Day”.  That’s today, May 27, 2015. And I’ll be honest, I don’t know how I feel about it.

Do I like that there is a worldwide day dedicated to raising awareness of multiple sclerosis?  I guess so…I certainly appreciate the sentiment. 

On the other hand, May 23rd is “World Turtle Day”, May 25th is “Geek Pride Day” and clear your calendars now because June 21st is “International Yoga Day”.

I have no qualms with geeks or yoga and root for that tortoise every time to take down that obnoxious hare but at what point – when seemingly any and everything has its own “day” - do these 24 hour commemorative periods cease to have any true meaning?

What does “World MS Day” even mean?  I’m pretty sure it’s not a celebration for those of us with MS.  And I had MS yesterday and will still have it tomorrow.  According to the “World MS” website, it is a day to “bring the global MS community together to share stories, raise awareness and campaign with and for everyone affected by multiple sclerosis.”

As with my riff on “brainstorming meetings”, I just don’t see the magic.  I have a hard time writing a meaningful story about living with MS just because there is a specific day dedicated to that.  I know, I’m being obtuse….a lot of people worked hard to create this day for those of us with MS and for that, I am thankful.

And I’m hopeful that, with the help of today, additional money will go to MS research – every dollar matters – and for that, I’m forever indebted.

But to borrow from another cultural reference, “Nobody puts MS <Baby> in the corner”…and I know it’s not intended to be that way, but it kind of feels like it.

I don’t speak for the MS community, just for myself.  But I don’t want a day, a week or even a month.  A ground-breaking idea doesn’t occur at work because you schedule a meeting to discover one.  And I don’t think somebody’s awareness of multiple sclerosis is increased, just because they are told that today it should be.

Read my previous entries.  Keep following my blog, check out what I’m writing for The National MS Society or TheMighty.com…forward and share with others.  Ask me questions, anything and anytime.  I’ll be happy to answer.

No store bought cookies from me, just the real thing.

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

Friday, May 1, 2015

The Check-Up


A few weeks ago, I had my annual MRI done.  I actually wrote about the experience for the National MS Society blog which they will publish later this month.  This week, I had a follow-up with my neurologist to review the results.
The good news is that my dual therapy of Copaxone and IVIG appear to be working!   Although growth/progression has still occurred, it has been at a much slower rate than pre-IVIG therapy.
In January 2011, my neurologist determined I had a more aggressive form of relapsing-remitting MS.  I was experiencing a lot of relapses and an increase in quantity/size of lesions.  He felt IVIG was my best option to fight the progression of my MS.  I wrote about it here.

Over the past four years, I’ve had my fair share of setbacks, but I’m thankful that it is not near the level it was before I medically retired or, as I prefer to say, became a writer!
I’m hopeful that this is the new normal but am at peace with the reality that life with a chronic disease like multiple sclerosis isn’t as simple as that. 

No matter the future progression of my disease, I’m beyond blessed to be surrounded by such loving family and friends.  In the end, that’s all that really matters. 




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