This Is How It Went Down...

So I might as well fill you in on my whole story.  It all started about 15 or so years ago, maybe more.  I was young - I'm going to say 14 or 15.  My left leg went "numb". Not numb that I couldn't feel anything, but I don't know how else to explain it. Tingly, less sensation than normal. It was weird.  We (my parents and I) figured I had a pinched nerve in either my neck or my back.  This was no concern, since I'd always had neck/back pain. I went to the chiropractor numerous times, and eventually it went away.  But a year or more later, that numbness came back.  Again I was off to the chiropractor for my pinched nerve, but this time it took a bit longer for it to go away. Mom shuttled me off to the doctor, who had no idea what it was.  The doc referred  me to a neurologist, who told my Mom that maybe it was MS. Mom laughed in his face and said he was crazy. And then that numbness was gone. So were all our thoughts of it.

Then I was fine. For a few years, actually.  From what I remember, everything was good. I was with Jason at this point, and had finished up at SIAST. Then the stress started. Mom was really sick, I was planning a wedding, and working at a new job.  I thought I felt okay, then picked up a pen in my right hand to write on a post-it or something.  My note looked like a 4 year old had written it. What the heck was going on? I wrote like that 4-year-old for a few weeks or so, then everything returned to "normal". 

Fast-forward a few months, to when that damn left leg went numb again. But not just my leg. The left side of my torso went went numb too.  Jason said it was time to go back to the doctor. And a new neurologist.  Yep, my torso being numb was a giant red flag waving in everyone's faces.  Time for a few tests.  I went for an MRI. That wasn't fun.  But being shoved into a teeny cylinder, not being able to move, with loud knocking noises in your ears for a hour wouldn't be fun for anyone. And then the best part was when they pulled me out, shot me up with some kind of IV, and shoved me back in.  More tests.  More fun. 

My test results came back.  And I still didn't have an answer.  My MRI showed lesions on my brain, which could possibly be MS.  But we wouldn't know for sure unless something like this happened again.  So I didn't have an answer to anything at all.  All we had to do was go on with life and hope that was the end of it all.

It wasn't.

A couple more years went by. I was feeling good. We had  9-month-old beautiful baby boy and everything was wonderful. Until I woke up one morning and couldn't feed him a bottle. I could barely get my hand around it.  I knew what I wanted to do but there was barely any strength in my hand. I shook it off, until I went to boil a pot of water and almost spilled it everywhere because I could hardly grip the handle.  I remember looking at my hand and thinking "Close your fingers and hold the stupid thing!" But I couldn't.  My right arm was basically useless. I could move it but had no strength.  I called up the neuro and in we went...

I don't remember the appointment.  I have no idea what he said.  I remember sitting in the car and Jason looking at me, worried and scared. I wondered what his problem was and why was he looking at me like that.  Then I realized what was going on. I had MS. I knew it, after all the weirdness that's been going on, but now it was real.  I sat in the car and cried.  I cried all the way home. And Jason let me cry about it for the rest of the day. Then he told me that it was up to me how I wanted to live my life, and crying and worrying about what "could" happen was not going to be the way we were going to live it. He was right.

I Read Something Today

I read something today that really hit me.  "One of the hardest parts of having MS is that no one knows you’re sick because you don’t look sick."  That is so true. People don't "get" that MS is a disease. It may not have in-your-face symptoms, and no, I sure don't look sick. But I am.

I'm sick in a way that you can't see.  For example, you don't see how tired I am.  Chronic fatigue is the worst, and that's my biggest symptom.  All you might think is that I'm lazy when I am having a nap mid-afternoon. Or that I'm boring because I don't want to go out and would rather just go to bed early and sleep.  If I run myself down, I risk an attack. So sleep is my best defense.

I power through the best that I can. Jason is super understanding and lets me nap when I need to. Same with my kids. They know that Mommy needs her time to lay down and they occupy themselves. 

So today I'm going to start writing. I hope that someone reads my blog, and I hope that I can at least help that someone understand what MS is.

I welcome your comments. Really. And please share with your friends and family!

M