Sunday, September 25, 2016


Last week I went to Columbia and met with a different neuromuscular neurologist to discuss my issues.  He gave me some possible scenarios on what my problem could be, had me do yet another EMG (this time they stuck a needle in my tongue!  Yes. In. My. Tongue), and did a lot of the same neurological baseline assessments that have been done on me now dozens of times.  It's not that I don't appreciate being able to see another doctor, and having the health insurance to cover such a visit, but I am at the point now that I NEED an answer.  I don't want to wait any longer.  My husband is convinced that this is not the worse case scenario.  He thinks that option #1 is what this is all about - that I had a rare reaction to some of the medications I took for my ulcerative colitis over the past few years, and if I have a treatment called IVig I will get better.  If I had a vote, I would vote for option #1.  

Option #2 is really scary.  It is almost too scary to say out loud.  In fact I have been discouraged to even look into what it all means, because it is that scary.  Except I am the type of person who needs information.  Even if the information scares me, I need to know what to expect.  I need to know what everything means.  So I began to look into option #2.  ALS.  Amyotrophic lateral sclerosis.  Lou Gehrig Disease.  So very scary.  In fact, I would highly recommend NOT googling it.  I don't think I have ALS.  I don't.  I really don't.  But I had to know what it all meant anyway.  I wish I didn't know. I wish I didn't look it up, and webMD, and google, and look at wikepedia.  I wish I didn't know that Stephen Hawking is the person who has lived with it the longest, or listened to Lou Gehrig's speech (even though I have heard it a million times, but now it all has new meaning).  But I did.  So, now I know.  

Yesterday, my right hand started losing more dexterity.  I already had felt as though my clapping was different, and my handwriting was messier,  Yesterday, I kept dropping things.  I couldn't hold onto things the way I normally do.  I was so frustrated and sad, and all I wanted to do was cry and give up. Gillian and I made it out to the diner for a late breakfast.  A person who I don't really know began asking me what was wrong with me, and talking very loudly about my issues. I felt naked.  Like everyone was looking at me.  I felt nauseous and couldn't eat.  I had to get out of there.  Later in the day I began feeling so anxious about being home alone.  I began texting Lisa and she text-talked me off the ledge.  Adam came home, and I cried some more to him.  Then he took me out into the sunshine to see Red Scare perform at their first competition of the year, and the air was cool and crisp, and it smelled like cut grass.  Then we went for a quick dinner, and Adam made me feel happy, and normal, even if it was just for a few hours.  He is good at that.  

Today we went to Ean's baseball games.  The sky was blue and the sun was strong.  In the shade I was chilly, in the sun I was sweating.  I got a sunburn.  But I felt alive.  My right hand isn't as weak as it was yesterday, and things don't seem so "doom and gloom".  Granted, I did take xanax to get through the hard part, but I know that being outside and being around people who know ME (not wheelchair me, or sick me or anxious and crazy me), is really good for me.

All of this rambling just shows me that everything I feel - the good, the anxiety, the scared, the sad, the desperation, the sense of feeling alive - all of it is not forever.  These feelings transition and move. They fluctuate based on where, when, why, and how.  

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