So, where was I? Or rather, what part of the story to tell next? This is not a linear tale, if you hadn’t noticed.
It was Tuesday morning that I contacted the folks at Illinois Neurological Institute about being evaluated for MS. That was after the Walgreen’s incident where I had to lift my leg into the car and also after a few casual “Have the doctors ruled out MS yet?” conversations. But it was before I recalled any of the episodes I detailed in Part 1 and Part 2 of this series.
“Before we can see you,” the representative from INI explained, “we’ll need a referral from your primary doctor and all of your records including lab work, scans, exams. We need someone from that office to call us so we can fax them a form to tell them what to fax back to us.”
“Um, OK. So first step is just to have my doctor’s office call you guys?”
Great, I thought. There are about four too many steps for it to happen without my having to micromanage the whole damn process. Fuck. Fuckity fuck.
With the phone to my head, my laptop battery dead, and no paper nearby, I pulled a leg of my pajama pants up and wrote the needed info on my knee.
My primary doctor’s office said she would be out until January 4—which meant a whole week to second-guess myself. Of course, I started immediately.
See, when you’ve seen as many doctors as I have and you’ve suffered through dozens of medical tests that all come back negative, you start to wonder if you’re what’s wrong with you. I asked myself if I was being ridiculous and dramatic for wanting to see MS specialists.
Will it be worth the trouble of getting my records to them, traveling to Peoria, submitting myself to more tests? And what about when all of those tests come back negative? Will it have been worth it then, or will I wish I had just accepted my circumstances?
That’s when I decided to visit MSSociety.org and read some patient stories. They all talked about problems with vision, and I remembered that this was the thing that made me decide not to ask my doctor about MS tests several months back.
I have never had problems with my vision. I know it says that 3% of patients don’t have them, but I still don’t think… Oh. My. Shit.
In the middle of that thought, I remembered that time in 2005 when I was watching TV and there was a hole in my vision. And because I’d linked that moment to my vision-blurring migraines between 2011 and 2013, those memories washed over me too.
What if the start of my decline wasn’t in 2014? What if it goes all the way back to 2005? What if those were episodes of optic neuritis or whatever-the-hell?
From 2011 to 2013, I worked in a gray, dingy warehouse-turned-headquarters for NAPA Balkamp. (Nothing about that job suited me, as it turned out. However, it did help me identify my ideal place to work. That’s something, I guess.)
One day in July 2011, I went to my boss’s office a little unsteady on my feet. “Is it OK if I go home? I’m not feeling well.”
“Whoa, you look pale.” He looked up from his computer. “Are you OK?” I was pretty sure I looked ashen and sick because I was terrified out of my mind about what was happening, but I didn’t want to sound crazy or seem weak.
“Some weird stuff’s going on with my vision. I just want to rest my eyes,” I explained.
After getting my boss’s approval to leave for the day, I called Dan and asked him to pick me up from work. I’d just have to leave my car on the lot overnight. “I’m seeing weird spikey squiggles and parts of my vision are blurry, Dan. I don’t think I can drive.”
He told me he was on his way.
I tried to keep my shit together during the fifteen-minute wait for Dan to arrive, but it took some effort. I had reservations about walking down the stairs and down to the lobby on my own. (That place only looked ADA-compliant from the outside. Inside was a different story, and riding in an elevator wasn’t an option.)
I clung to the railing as I made my way to the ground floor while trying pretty hard not to look like I was clinging to the railing.
Rather than wait in the lobby for Dan to pull up, I went outside and stood in the front parking lot. It was raining, but I didn’t want to go back inside. I just kept thinking that I didn’t want to pass out in front of anyone, because that would be so embarrassing.
I anxiously looked down the road for Dan’s Jeep. How long have I been waiting out here? An hour?
My left arm got tingly from my bicep to my fingertips. I shook it like you’d shake an arm that had fallen asleep, trying to return some blood flow. It didn’t help.
When the vision problems dissipated, they left behind a monster headache. Resting made me feel better, and over the next couple of days I was feeling back to my old self. I didn’t make a doctor’s appointment like years earlier. Instead I did a Google search for something like “squiggly lines in vision.”
I found images like the one above, perfectly depicting what I experienced. Sharp, colorful squiggles and blurry spots that prevented me from reading and writing. All of them on web pages about migraines.
So that’s what happened. A migraine. Whew!
I would have several more of these episodes periodically over the course of a couple of years. When they happened at work, I’d turn my desk lamp off and close my eyes for a few minutes. I even welcomed the squiggles and tingles. How sweet of my body to warn me what was ahead.
I logged the migraines for a while, you know, just in case. But shortly after I moved and began working for my current employer, they stopped. My migraine log was lost in the great moving purge of 2013 when I left Indianapolis and moved to Champaign-Urbana.
Because the migraines stopped, I chalked everything up to no daylight in my cubicle, hating my job, and eye strain. Who wouldn’t get migraines under those circumstances, I reasoned.