Old Me used to leave the hospital with a piece of gauze and some tape and think, “Geez. That’s kind of overkill for a little speck of blood, isn’t it?”
But Current Me takes chemo. And chemo makes your bone marrow go on vacation. And platelets don’t get made when your bone marrow is on vacation. And platelets are kind of important for stemming bleeding.
Anyway, I got my gauze and bandage and discharge papers after spending yesterday in the ER due to some wicked dehydration. Then Dan drove me home.
I looked down at my hand while climbing out of the car, and something looked off. It took me a second to catch on.
“Gah!” I shrieked. The gauze was soaked and oozing red. I lifted the back of my left hand to Dan’s face.
The ER doctors are always fascinated by my story. Once they find out I have a brain tumor, they check All the Things™.
So I go in asking for IV fluids and they’re all, “Well, just to be safe…”
It’s like asking for an oil change and being talked into adding on the 27-point inspection. The doctor this time ordered a chest x-ray, 6 blood tests, urinalysis, an EKG, and conducted the standard physical examination.
“You dizzy? Have vertigo?” he asked, shining a light in my eyes and watching my pupils.
When I answered affirmatively, he wondered if I knew what he meant by vertigo.
“I have nystagmus,” I replied. “Me and vertigo are like this.” I crossed my index and middle finger.
That piqued his interest. So he had me track his finger with my eyes, and when they fluttered like I promised they would he seemed satisfied.
“Yep. That confirms there’s something wrong in central processing.”
Dan and I thought him a little quirky compared to today’s colder, more aloof doctors. A country doctor in a college town ER.
He was good. I told Dan, “I always prepare to fight for a second bag of fluids. He just offered.”
At home in the recliner I asked Dan to hunt for a clean bandage. He returned with one from the linen closet.
“Let’s just clean that first,” he said noticing the blood that was caking on the back of my hand.
“Ouch.” The pain of him swabbing my hand surprised me a little.
“Sorry,” he said, and then started dabbing at it extra gently. I told him he’d never been anything but good to me but I was still shocked sometimes by how tender he could be.
“Who would keep hurting someone who says ‘ouch’?” he shrugged.
Thought I’d jot this down. Feeling a little better always seems noteworthy.
I walked back to the office to grab my laptop this morning. (It’s Friday and I have no scheduled meetings, so I’m working entirely from the couch today.) As I was walking down the hallway, I noticed my vertigo was better than it had been in weeks, maybe months. I wasn’t strong, and my movements weren’t fluid, but I didn’t have to grab the walls to keep myself from falling.
I immediately tried isolating the reason for the change, so I could repeat the improvement or keep the momentum going. “What did I do differently yesterday?” I asked Dan.
“You had banana instead of pineapple in your smoothie? You went to bed early?”
Yeah. I took my shower early, crashed on the bed like I always do (for at least 30 minutes post-shower) and I never got back up. I even slept all night with the light on. I just couldn’t muster the will to get out of bed and turn it off. Just before 6 a.m. I woke up. Not because I was done sleeping, but because I was so damn hot I couldn’t sleep.
Spending half the day in bed doesn’t exactly seem like a recipe for good health. I dunno.
Probably just me doing what I always do—falling back on the habit of thinking that I have the ability to fix my health problems. That I can do something to change what’s going on, which presumes I did something to cause it in the first place.
The greater likelihood is that I’m getting to the other side of a months-long flare.
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?
Something about sitting in a chair while someone combs out my tangles switches my confessional switch. I told her that Dan and I had recently discussed me going back to a neurologist—someone who specializes in MS—to ask some more questions about ruling it out.
She thought it was a good idea. “Do you remember John W.?”
“Our old neighbor? Sure.”
“He’d come home from work, and walking from the car to the front door, he’d walk just like you do now.”
“Huh, really.” I envisioned him walking up his driveway. I could see the lilted gait, but wasn’t sure if I was recalling actual history or projecting my own walk onto a childhood memory. “I didn’t know he had MS.”
“And you remember me telling you about the wife of one of dad’s cousins that I chatted with at the last family reunion? I was telling her about you. You walk like her too, by the way. She said, ‘that is exactly what happened to me before I was diagnosed.’
“And,” she added, “when I was doing hair at Phyllis’s, I had a client with MS. Some days she could come to the salon, and some days she couldn’t. On the days she couldn’t, I’d go to her house. Anyway, she reached out to grab walls and chairs and things for stability, just like you do.”
She finished up with the scissors and switched on the blow dryer.
I follow a lot of Spoonies and disability activists on Twitter. Last week, someone shared a link to a video of a person with MS walking.
I watched it several times. The hesitation and deliberation in her shuffle. The way she reaches out for the branches as she approaches them. The way it seems like that one leg isn’t so much participating in the act of walking as it is catching up to the rest of her body.
THAT IS ME.
Sometimes people ask me why no one has ordered an MRI yet. I don’t know. Disbelief in my ability to accurately report my symptoms? Blindly trusting my fibromyalgia diagnosis? Money? Insurance?
My primary doctor did refer me to a neurologist last year. He tested my reflexes, then drew numbers on my foot to test for numbness. He smacked a tuning fork and then held it to a couple of areas, asking me if I could feel the vibrations. He watched me walk up and down a hallway.
“Why are you dragging your left foot like that?” the neuro asked me. I shrugged at him. “I don’t know.” At the time it didn’t seem absurd for him to be asking me that question. Now, I’m kicking myself for not retorting, “Why the fuck do you think I’m here, asshole?”
But he wasn’t a native English speaker, and his question might have been something more akin to “Is there something not in your records that would explain this?” Still, he didn’t seem concerned that my answer was “dunno.”
He said they could perform some kind of nerve test (like what they do for carpal tunnel, I can’t remember what it’s called) on my limbs, but that he was 99.9% sure it would come back negative and some people considered it painful. It was up to me if I wanted it.
I put it off for months. When I finally consented to have the testing, it came back negative, just like he thought it would. I considered it another dead end.
Last night I was reading MS patient stories online. Random people keep bringing MS up to me lately, and I can’t get it out of my head. One woman’s story triggered a memory from more than a decade ago.
2005. I was sitting on the couch watching TV when my vision went out, partially. There was a blind spot where an actor’s face should have been. I looked at other things around the room. I blinked. The black hole was still there.
It was freaking me out, so I got up to take a shower as a way of calming my anxiety. The vision loss continued, and I started experiencing a numbness and tingling in my arm. The shower poof felt odd on my forearm. It wasn’t totally numb, but it was not normal.
I was so freaked out by it all that the next morning I made an appointment with my doctor. At the time, I was pretty healthy. I only saw him for the occasional sinus infection or whatever. He didn’t really know me.
He listened to me describe my experience without saying too much. He had a nurse come in and test my blood sugar. Then he asked if there was any chance I could be pregnant and had me pee in a cup.
“Well, you’ve got a bladder infection,” he said. “But you’re not pregnant. I’m going to prescribe an antibiotic.”
He admitted he couldn’t explain the symptoms that had prompted me to make the visit in the first place. All he could offer me was, “I don’t think it’s a stroke.”
The encounter was far from consoling, but after a couple of days the symptoms had gone and I was over the anxiety.
I had pretty much forgotten this entire episode and so hadn’t considered it might be connected to my past two years of pain, fatigue, vertigo, and falls.