My Foot Stopped Working: Nothing I Can Do, and, The End of Blogging

The worst is over. Not the A-to-Z Challenge - that's been fun - but the worst of the lung infection. Three times this week I was able to walk downstairs and make myself lunch. Whine about ablism all you want, but I do not handle immobility well. It's my big emotional vulnerability, especially when my body is so taxed that it can't move anymore, while my nerves as so shot that they're begging me to adjust for relief that can't come. I'd say I was a proper mess this time last week.

It got so grim that my neuropathy became unimportant. The loss of feeling hasn't progressed beyond the previous level in my feet for about two months, and there's been no suspicious loss of motor control. After one last set of tests and fruitless meeting with a neurologist, I've given up. Unless I get another sign on the neuropathic front, this is just something I'm going to deal with. In the scope of my medical life, numbness isn't scary. And while the last set of tests were utterly useless, I did get this funny and racially insensitive label from the hospital paperwork:

In case you were wondering: I'm officially not Hispanic.

The A-to-Z Challenge and my recent illnesses have also led me to question my posting habits. I've posted daily for several years now, and this month's theme hasn't done anything unusual to me, other than demand more of my time. As I prepare the next slate of submissions for magazines and agents, that time feels like it's dwindling, especially on those days when I haven't had the strength to lift head from pillow.

So, beloved readers, how would you feel if The Bathroom Monologues finally ceased daily publication? The new routine would remain consistent. I'm thinking of running a Friday Flash every Friday, and something non-fiction every Monday. Twice a week feels more manageable, though it's not set in stone. I'm seriously curious for what readers think about this, and what they want from the blog.

So: what do you want from The Bathroom Monologues?

My Foot Stopped Working: Needles in My Legs

I thought I’d experienced every nerve test. I’ve had sweat tests, blood tests, muscle biopsies, shock tests, tests where they strapped electrodes to me and tossed me onto a treadmill. I have what are likely exaggerated memories of an hour spent in a room with gradually elevating temperature and currents being run through my left arm.

But this “Nerve Shock Test” I got in Fishkill was a new one. The technician stuck needles into the muscle tissue of my legs, then electrified the needles to record nerve reactions. It may be the first time I’ve ever bit my lip to keep from yelling. Didn’t help that the technician was a jerk who talked down to me for the entire test.

What a nice place to be electrocuted.

Then I got off the table and heard exactly what anyone who’s been electrified for their own health wants: “This shows there’s nothing wrong. That’s a good thing.”

A good thing because, according to a glib explanation, it ruled some problems out. It’s probably not Tarsal Tunnel Syndrome. He didn’t even think it was neuropathy, though he didn’t have an alternative to suggest. Now all I had to do was get another neurology appointment to come up with more tests. Recall that last time, the Nurse Practitioner was drawing a blank on what it could be and what to do.

The only good thing I’ve experienced is that the numbness hasn’t spread far. For the last few days I’ve felt it in the ball of my left foot. Otherwise it is located in the toes and periphery, and every time I’ve checked, motor control has been available. Sweet, sweet ability to walk.

I waited two weeks before posting this, just in case. Bruises the size of my thumbs still mark where the needles “probed.”

Eight days after Nerve Shock Test. My leg doesn't look like Jupiter anymore!

My Foot Stopped Working: Neurology Wants to See You

I’m getting better at going to the hospital. I’d rather get better-period, but I’m taking pride in handling how these investigations work. On Friday I saw the Nurse Practitioner at my hospital’s Neurology department. You’d think waiting a month and a half would yield a doctor, but she was very friendly and thorough. She jabbed my feet with pointy sticks, banged on my knees with metal rods and tried to knock me over several times to figure out how much proprioception I still have.

Good news: I have some. Proprioception is the wonderful sense of balance and spatial reasoning. The notion that we only have five senses is a crock.

I need to be electrocuted again?

The sign of my improvement at managing healthcaregivers (perhaps the second-ever three-word portmanteau, after “plainclothesman”) came as she tried to dust me off to blood work. After we got the results, we could schedule a follow-up.

I opened a portfolio and produced the bloodwork from January, when the neuropathy was already going on, complete with disease tests and liver function. She found nothing suspicious in the data and said she’d have to sign me up for a Nerve Conduction Study, where they run electrical current through your nerves to see which are active. Shock tests. They usually took a while to get, but we really needed to know…

I opened my portfolio and handed over the results of the Nerve Conduction Study from January. Ba’am.

Bringing print-outs of records saved me at least two months of waiting between tests, but I still needed an EMG, because for all the data doctors have taken on me, the Nurse Practitioner couldn’t figure out a proper cause. In her experience neuropathy usually results from alcoholism, diabetes or age, none of which apply to me. The “age” one made us both laugh. I believe the only time I’m ever called young anymore is when someone is talking about the health problems I’ve already developed.

Because of two particular nerve groups that appear damaged, her best hypothesis was Tarsal Tunnel Syndrome. It’s like Carpal Tunnel, except focusing on the tibial nerve in your foot. Well, not your foot. Both of my feet.

That it’s in both feet is what baffled her, because such neuropathy and motor control loss is seldom symmetrical without a spinal issue. This sort of malfunction typically hits one foot and might hint at something. It’s something we’ll review after my EMG. She spent a proper half hour fielding my questions, getting down to some crazy theories about non-manifested diabetes and shoe sizes. At the worst, I couldn’t have asked for someone to be more indulgent of my curiosity.

This was also the first hospital visit on the case where someone said it might be all in my head. It was a joke, but it was said.

My Foot Stopped Working: What Chronic Pain Is Like

It strikes me that in some of my earlier neuropathy posts that I’ve neglected to inform people about my basic health. You know that I’m losing feel in my feet and legs, and sporadically lose the ability to move parts of them. Perhaps you don’t know why the numbness was so immediately apparent.

Since age 13, after some catastrophic medical malpractice, I’ve been in constant pain in every part of my body. It’s been so long that I don’t know how not hurting feels, except for this new alternative: not feeling anything at all. The first time that my toes irrevocably went off the grid, I was terribly frustrated. I’m used to navigating with them, and feeling the twinges of pain in their second-from-last joints as the curl, the bellwethers of how putting my foot down in each step will feel, and how sharp the pain will be in my arch and ankle.

Perhaps the best analogy is to remember the last time you had a really bad flu. That deep ache that settled on your flesh and in all your tissues, that made every movement a deliberate labor and reminded you of all those organs you take for granted. Sometimes one part, like my spinal column, hamstrings or kidneys will ache worse, and the chief pain can even be a means of focusing through the disorienting general pain. The worst is when the fog of pain is so great that I can no longer speak or compose full sentences. That general pain is so distracting, because the reports come from so many parts of the body, that my biggest daily problem can be thinking straight. This has been the last two decades of my life.

It's a little tragic that I miss the pain in my feet. I'm too used to it. The human mind is a remarkably adaptive thing, and at present I'm wondering if I could eventually adapt to not feeling anything at all, perhaps over a course of decades.

I learned to deal with chronic pain, since the alternatives were dying or getting hooked on morphine. I know I’m good at dealing with it because most people are surprised to learn there’s much wrong with me. Argue ableism and disableism all you want, but from my teens on, the ability to blend in with relatively healthy has been a source of pride. Often, also a source of protection. The kid who limps and props himself up against walls is a great target for beatings.

Finally seeing the neurologist on Friday. It's been a long month of no leads or answers. Feeling a bit hopeful today.