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.  

Wednesday, September 14, 2016

From Wonder Woman to just wondering...

It is has been over a month since I have added to this blog.  I haven't really felt like writing much. Some days its because I feel so happy and alive and I am busy doing other things that make me feel sane and whole.  Other days it is just too much effort to make it down the stairs to my computer.

In the past month and a half I have had a spinal tap, had a blood patch to repair the spinal tap, my oldest daughter went off to her first year of college (without me), set up my classroom, my other two kids have started their junior year and freshman year of high school, learned that the spinal tap does not show any evidence of MS, started teaching my new first grade class, starting seeing a therapist to talk about my chronic illness(es), live with an ileostomy, got an appointment to see a neuromuscular neurologist at Columbia, acquired some sort of infection in my leg, had the support of wonderful friends and family, and for the past two days have been so anxious I have been unable to work.  What the F#@k!

My friend Lisa started calling me Wonder Woman when I was home on disability, waiting to have my colectomy.  It stuck.  I embraced it.  I felt it.  Especially right after the surgery.  I felt like there was really nothing I couldn't do.  Don't get me wrong, there were some trying and dark days, but I knew that I would work my way through them and be like Wonder Woman once again.

Then I went back to school.  I love teaching, I am teaching from my wheelchair and I have made accommodations for myself in my classroom in order to teach well.  My desks are spread out a little more, we removed extra tables from my classroom, and most of the things I need access to are now at wheelchair height, not standing height.  I use the handicapped accessible bathroom across the hall, and I am learning to accept help from my colleagues.  My students are helping me, and I will teach them to be more independent.  My friends are hanging things on my walls, and picking up my kids from specials; pushing me up the ramps and picking me up in the morning as I come in; checking in on me and giving me bathroom breaks; sharing lesson plans and so much more.  And then all of a sudden, after a few days I felt like I couldn't get out of bed and drive to work myself.  So Adam started taking me.  And then yesterday, when I got there I just couldn't do it.  I don't really know what it is.  Because as soon as I start teaching I know I would forget about any anxious feeling I had.  Six year olds tend to make you forget.  But I could not make myself go into the classroom.  And today the anxiety I felt from 5:30am on made my physically ill.

So now I am not feeling so Wonder Woman-like, but rather left wondering.  What is it that is preventing me from moving forward?  Why am I stuck?  Is it that I thought I could do it all and I am realizing now that I can't?  I think this is part of it.  Even though I am unwilling to admit it, I thought I could jump back in to this career and calling that I love and be the same type of teacher I was before.  But I can't.  I can't do the same energizers with my kids as I used to because I can't walk and jump around.  I have trouble modelling certain procedures because if I get out of my chair I will fall. It takes me much longer to complete a simple task like taking supplies out of my cabinet or writing Morning Message, because my body doesn't work the way it used to.  My handwriting is different.

Okay.  I have said it.  Out loud in a way.  I AM NOT THE SAME.  I AM NOT THE SAME.  I AM NOT THE SAME.  I am not the same.  Maybe I will be that person again.  But right now, in this moment, I am not.  This makes me sad and frustrated and leaves me feeling hopeless. There, I have said it.  I feel hopeless.  (And there I go crying again.  My goodness!  I never thought I could cry THIS much!  Crying is cathartic, right?)

So I have to figure out how to be the teacher I want to be like this, in this body that I have right now, in this moment of my life.  How can I be the best today, in this moment, in this hour, for this lesson, for this day, for this week, for this month, for this school year?  How do I get back to the place where I feel comfortable going back and asking for help and stop being so pigheadedly independent?  How do I do it?  HOW DO I DO IT?  How do I accept who I am now?  I am wondering...

P.S. After writing all this down (which by the way has taken me over two hours to do), I realize that tomorrow I will be okay.  Weird that I know that already, but today I have said some things out loud to the universe that I have been afraid to say.  But now that I have said them, it isn't so scary anymore.