Thursday, October 15, 2015

My One-Year Anniversary: Part 1

Hi folks,

I have to tell you something.  Exactly a year ago today, I was diagnosed with multiple sclerosis.  I apologize if I know you, and you're finding this out for the first time through my blog; but it's one of those things that, while I would have liked to get it out in the open with everybody I'm close to right off the bat, I can't just drop on people randomly at a party or something.

Here's what my day was like last October 15.  I remember it, because it was the worst day ever.  Recently, I've noticed this tendency I'm developing to internalize my feelings.  So, when I'm experiencing something profound, be it positive or negative, I often have a physical response, because I don't otherwise openly admit that I'm feeling what I'm feeling to the extent that I'm feeling it.

Actually, let me go back a little further than 10/15/14.  I had been feeling weird tingling sensations (for lack of a better word) since July.  It had started in my fingers and moved through my arms, legs and feet.  My dad had told me to keep tabs on it, but we didn't do anything about it at first.  Then I got this thing where, when I dipped my chin to my chest, an electric, buzzing sensation shot from my lower back, up my spine and out to my hips and all the way down my legs.  Then I called my dad and said that I'd like to talk to a neurologist about it.

Here's the thing.  I passed the neurologic exam with flying colors.  I was even feeling less tingly by the time I got the exam (a couple days before the 10/15), and I felt a little bad -- like a boy-who-cried-wolf kind of thing.  The neurologist said I seemed ok, but that we should do a neck MRI, just to check (I was having some achiness at the time and she thought it might be a pinched nerve or something).  We seriously thought all was well, but then the neurologist called and said there were some "irregularities" in my neck MRI (cervical spine), and she wanted to get images of my brain and thoracic spine (the rest of the spine).

It was so weird, I looked at the images from my cervical spine, and there were literally these three, blurry little white things that I guess weren't normal.  Looking at it with an untrained eye, I thought, "really?  That means something?"  However, after I did more MRIs, a few blood tests and a lumbar puncture (a.k.a. spinal tap), it was clear that those little white dots (also called "lesions") meant a lot.  We tested for a number of things that the dots could also have meant: celiac, lyme disease, etc...came back negative.  There was something specific they were looking for in my spinal fluid that would confirm that it was MS.  They're called oligoclonal bands.  Google them if you want.

One of the most powerful and scary moments that I remember from those couple of days was when the neurologist showed me my brain scans.  Before she showed me, she said, "the grey is your brain, the black is spinal fluid, and the white is the irregularities."  Then she clicked through all the images, and I just remember thinking, "that's a lot of white..."

"Is that a lot?"  I asked.
"'s not a little," she replied.


So flash forward a couple days.  We were still waiting for the lumbar puncture results to come back, but I had to go back to New Orleans (oh yeah, I was in Maine for all that stuff -- I went home for Fall break).  There was a crazy weather system somewhere, and my connecting flight got cancelled.  I got on a new flight for the next day, and a room for that night in some hotel in Charlotte, NC.

That night, I started getting sick.  The next day, for the first (and only) time, I threw up in a barf bag on the plane.  And it was after we'd landed for God's sake!  So here, I'm getting to that whole, internalizing-feelings-and-then-having-a-physical-response thing.  I had had talks about the potentials of having MS with my parents and Sam and Nellie and Mike (her now husband), who were visiting home that weekend as well.  But we hadn't actually confirmed it yet, remember?  Because we hadn't heard about those oligoclonal bands yet.  That weekend, after I got all the tests done, we went out to our place that we have on an island off the coast of Maine and spent a couple beautiful Fall days playing touch football and reading and hiking and all that.  It was fun, despite potential gloominess back at the hospital.

Anyway, I got a cab from the airport.  I threw up in my water bottle in the cab.  The driver asked me if I wanted to stop and I said, "please just take me home.  I won't get anything on your car I promise."  I got home, stripped off all my clothes, and fell into bed.  I called my mom (because I promised I would when I got home), crying because I just felt so miserable and tired.  I slept for a couple hours.  I woke up, walked to the little corner store by my apartment, bought some gatorade, went back home, and slept for a few more hours.  I was woken up in the late afternoon by my phone ringing.  It was my neurologist (oh, we're at October 15 by now, by the way).  She said the spinal fluid results had come back and the oligoclonal bands were there.  So it was official.

I promise I'm going to write more about this in my next post.  I'm going to talk about the more psychological side of things and the experience of telling people, going to school, symptoms, my doctors, why my blog background is elephants (it's relevant, I swear).  But this is a long post, and there are no pictures, so I feel bad.  I'm also, more soon. I promise.
Here's one picture though...because I need a thumbnail image for the's not my brain; it's the internet's.  I don't think I want you to see my brain.  It would be like seeing me naked or something.

1 comment:

  1. What!? Multiple sclerosis, about which I know about nothing. But now, because of you, I need to learn about it. I already have learned something about MS from your blog. Thank you, Tessa, for bringing us along.