Tuesday, February 26, 2013

Multiple Sclerosis...

Yup, I have MS! :)

I was diagnosed in January of 2000 and I have been giving myself shots of Betaseron every other day since then (well, except for when I was trying to get pregnant or actually pregnant) :)

Lots of people ask me what MS is and the easiest way I can explain it is by using the analogy of an extension cord.

The nerve endings in your body are a lot like an extension cord. They carry the messages/electrical "sparks" through them to their intended source to do an intended job like moving your leg, or speaking, etc.

When you have MS, the orange covering on the extension cord wears thin and the messages through your nerve endings start getting lost and either do the wrong thing or do nothing.

Over time, your body heals those thin spots (if you are lucky and have a "good" kind of MS like I do...I have relapsing/remitting). The problem is that each time your body has to heal those nerve endings, you build up scar tissue and that acts like a brick wall for nerve synapses and then things don't heal, which is what causes irreversable damage and loss of motor functions.

You can have "lesions" in several places in your body including your optic nerve, spine, and brain. I'm one of the lucky ones who just has lesions on my brain. Every 2 years, I have an MRI to measure them and see if they have grown.

They have changed a little, but not bad considering that I didn't do my shots very often while Braden was in treatment at the hospital. They make me VERY sick (flu-like symptoms) so I administer my shot right before I go to bed and sleep through most of the worst of it. I do have to take Ibuprofen the next day for extreme headaches and body aches but every other day, I'm good! :)

It's a good trade off. I get to remain mobile and only feel like crap 3-4 days a week as a result. I'll take it!

I have two triggers for my MS, fatigue and heat. I didn't get a lot of sleep while Braden was inpatient for that year and a half, and I didn't want to be sick all night while trying to take care of him so I skipped them a lot. Yea, my neurologist knows and she wasn't pleased but she couldn't blame me. :)

The heat trigger is why I do NOT enjoy summer!!

At all!!

Last summer in Kansas, it was extremely hot and I was in a lot of pain and I was exhausted most days.  It's the first year I've really been that miserable. We detour every day, at least one detour and when it's that hot, we have to detour inside which is a downer. It all works out, but still...frustrates me!

Winter, fall, and spring I'm much more comfortable!

There is the little issue of my balance...it sucks.  Plain and simple. 

I fall frequently and when I tried to go out dancing with some friends, I had a hard time doing Cotton Eyed Joe (which pissed me off) but as long as I don't have to walk a straight line or stand on one leg, I'm pretty much okay!!

Okay...I'm not but I would like to THINK I was...I really have a hard time with my balance and I'm sort of like a weeble...

except I DO fall down!! LOL!!

I only have to visit my neurologist once a year! WAHOOOO!!! :)  That means I'm on the "good" list!

There are a few things that affect me with my MS but for the most part, you wouldn't know I had it!

The way I knew there was something wrong is that I had a band of tightness around my waist, it felt like someone had a great big belt around me and was squeezing it as tightly as they could.

Oh, and...my entire lower body went numb. :) 

I thought it was my back so I went in for an MRI and they told me two things.

1. My spinal column was 90% compressed from a herniated disk and I needed surgery right away. I had surgery 3 days later.


2. There were lesions on my brain that indicated I had MS.

Crap!  I could have done without the second one! :)

Brian and I were dating at the time, and I remember telling him that I would completely understand if he didn't want to sign up for this.

He stayed in the game....  :)  Actually, the first neurologist I had explained what "she" had and what "her" options were to Brian while I was sitting right there. I explained we were dating and I was right there...in the room...and after we walked out of that meeting, I found a new neurologist.

Smooth move Dr. Igit!! :)

Outside of the side effects of Betaseron, the big red welts each shot leaves for about 3 weeks, the nastiness on those hot days, and the fact that my balance completely SUCKS, I'm all good!!

I'm VERY lucky!!

VERY lucky.

My neurologist (who I LOVE) said not to even look at any of the scales that show the stats about what will happen to my mobility in the future, she says I'm going to blow them away.

I'm with her...MS is not going to win!!

HOPE! :)