"But Mom": Two of the most dreadful words in the English language

Monday, March 14, 2011

Multiple Sclerosis Awareness Week

Today marks the fist day of Multiple Sclerosis Awareness Week.  So I thought this week would be a good one to post about my experiences thus far with MS.

Here is a little description from the MS Society's website about what MS is in a nutshell:

Multiple Sclerosis is a auto immune disorder that attacks a persons' central nervous system.  It interrupts the flow of information within the brain, and between the brain and the body. Symptoms range from numbness and tingling to blindness and paralysis. There is NO CURE and only in the last 20 years have treatments been approved by the FDA … there are only 8 disease modifying therapies (first oral one approved late 2010...all other medications are injections). Scientists have only been able to slow the progression of the disease not cure it but we all are working to help make a cure possible!

Sometimes I feel like a walking pharmacy.  Todd and I joke that I am an addict.  I do "shoot up" on a daily basis.  If you would have told me that one day I would have to give myself daily injections, I would have run the other way as fast as I could, screaming all the while.  I was the girl who was unnaturally scared of needles.  

I have a very vivid memory of my 5-year old self walking down this long, dark hallway.  It was raining outside and everything was grey.  Huge windows were on one side of me, bleak tile on the other.  I was headed toward the sound of screaming children and I knew that soon, too soon, I would be joining their ranks.  My mom took me into a small room.  The doctor handed me a little vial of purple liquid and told me it was to prevent polio.  I drank it.  Then, it was shot time.  Three nurses had to hold me down while my legs were assaulted with needles.  It was terrifying.  My mom promised to get me a prize afterward.  I made her keep her promise.  I picked out a white umbrella with mulit-colored polka dots and used it as a cane for the rest of the day.  (Dramatic much?)

Thankfully, having three kids via C-section cured me of my fear of needles.  Still, there is something innately wrong with sticking something sharp into your body.  Who intentionally causes themselves pain...no matter how small...on a daily basis?  It's just madness.  

I have to order my syringes through a specialty pharmacy.  They sent me a sharps container with my first shipment.  A big, red container with a bio-hazard sign plastered right on the front.  I took one look at that and told The Artist that under no circumstances would I allow that thing to be in my home.  Looking at it was truly depressing.  The Artist did some research online and found this nifty little contraption that is about the size of two of my fingers.  It clips the needle off of the syringe so you can safely throw the syringe away.  It is perfectly acceptable.

For the first month or so, I kept saying over and over how I felt like a human pin cushion.  I had bruises all over the place from the injections. It wasn't fun, but I got over it pretty quick.  Now I am just grateful that there is a medication out there for MS with very little side effects.  I've really only had one side effect...but I'll keep you in suspense because that is a whole other post.

The medication has done great things for me.  I am happy to say that any numbness I had has all but vanished.  My last MRI showed that there were no "active" areas of MS degeneration in my brain...The Artist and I breathed a huge sigh of relief with that news.  Now I wear my bruises as a badge of courage.  I'm going to fight MS.  I know that in the long run I'm not going to win, but I will not give up!

1 comment:

  1. I hope in the long run, you DO win. You deserve a few badges, even if they are black and blue. You are a fighter!