WTF? (or ‘Another Cerebral Palsy aware day.’)

I woke up by my alarm at 4 a.m. yesterday, and for the first time in days, I thought I could actual get out of bed. My body has been heavy with fatigue and a steady post nasal drip. I suppose that might be from closing up the windows with a bird, a dog, and 11 cats in a house desperately in need of a vacuum.

But even so, I laid in bed until about 4:20 cuddling the FURR fosters in my bed: tripod Louise and kitten Jennifer Grey.

I drank two cups of coffee, one Supercoffee and one Dunkin Polar Peppermint.

I even wrote about 500 words on my next Fashion and Fiends novel that I have been struggling with for months.

I was stiff and my back was achy and yesterday I noticed some of that burning in my toe but I thought perhaps I could blame my shoes.

I saw the chiropractor the night prior, the amazing Nicole Jensen of Back in Line Chiropractic and Wellness Center. Nothing really seemed amiss and things were moving well.

Yesterday at the warehouse I performed 97%. So I thought… why not… let’s take one of my baclofen pills to see if looser muscles might mean less stiffness and aches. It was the first time I ever took one in the morning. I’ve taken them in the evening and slowly taken them earlier.

The pill helped. It felt like I could swing my legs again.

The medicine reminded me that I never heard back from the neurologist’s office about the appointment they needed to move and the paperwork I submitted. So I emailed. Now, the portal that allows patients to email medical staff has a strict character count. While in the newspaper business, I had a nickname: the word count goddess. This was in the pre-Twitter days when no one cared about character counts.

I composed a masterful email that addressed all my concerns succinctly, but maintained a polite air. I love this doctor and truly want to make her life as easy as possible.

I performed most of the day at 100%, by my employer’s numbers, which don’t account for our ten minute breaks. Their numbers suggest we do 16.25 units per hour, but don’t change during the hours we have break, which is twice a day. Their default calculation means the computer thinks one unit should take almost 3 minutes 40 seconds. So a ten minute break (and a small amount of time to move to and from a work station) reduces the potential productivity of that hour by about 3 units. So to compensate for that difference, if you wanted to keep every hour equal, the units per hour should be 17.

My first hour, I completed 18. My second hour I only completed 16. Then we had break, (and my neurologist had sent an encouraging email back by that point and her nurse had suggested a time for my next appointment) and I completed 5-6 in the twenty or so minutes before we had a department wide “power hour” in which I completed 19. So by the midpoint of my shift, and even when I clocked out for lunch, I was at exactly 100% with no accommodations for my disability. But by lunch, my ability to bend was decreasing.

I felt like the Tin Man in the Wizard of Oz when he begs Dorothy for oil.

I had a cheerful lunch with my friends, and went back to work, still maintaining the official numbers for 100%. Even by our last break at 1:30, I was still 100%. But I was stiff. And feeling sluggish. So for the first time ever, I took a second baclofen in a day. My doctor suggested up to 3 a day.

My toes were burning at this point, making me wonder if my pain from my two Morton’s neuromas had returned. OR if my toes were rubbing because I forgot my toe separator doo-dad. OR if my toes rubbing (because later I saw and felt the bony, protruding tender spot where it hurts) impacts my posture and triggers the neuroma(s).

If the issue continues, the neurologist wants me to call the podiatrist. I stopped by his office last week to drop off $11.32 in cash for my copay and his office was unexpectedly closed. In the old-fashioned manner, I slipped the envelope in the door.

I worked as hard as I could the remainder of the day, now trailing behind because of my ten-minute break and at 2:30 p.m., 30 minutes from quitting time, the support team brings me the “easy” work and tells me it’s a priority. I end the day one unit away from 100%. One unit.

And somewhere around 2 p.m., the neurologist had called and asked for $30 payment for the form fee for my FMLA paperwork. I apologized and said while I completely would pay the fee, I was at work and didn’t have my wallet on me and I would get back to them before the holiday. I called them at 3:10 p.m. from my car, and was added to a call back list, because the wait time was 40 minutes.

I hope including this much detail might show how difficult it is to pursue medical care and to pursue official accommodations in the workplace. Medical care itself is a labyrinth. Navigating your way to a provider who not only cares but has the knowledge to help, maintaining the patience and persistence to pay the fees and follow the paperwork, and taking responsibility for lifestyle changes that only you can make. I’m fortunate that I can do these things myself. What if my disability prevented that? Would I be treated the same way?

Just throwing that out there.

So now the happiest part of my day— hanging out with my blind friend, poet and essayist Nancy Scott.

She needed to go to the bank and she wanted to go to the Dollar Tree to check out the Christmas decorations. We had a great time roaming the aisles with me describing all the goodies. Nan fell in love with an elf.

I said to Nan, “my leg is not working.”

I meant it off-handedly but I checked my phone later. And sure enough— my walking asymmetry was way off. Normally I fall when the spike hits 10 percent. It was 50 percent.

Hopefully today will go smoother.

Work on the Cortisone Foot and Service Dog Update

The cats woke me up at 3 a.m. today and perhaps it was the cortisone shot but I could not for anything get back to sleep. But when I got up, the foot looked good except for some cute round bruises and I didn’t feel anything but stiff. By 4 a.m. I was drinking coffee and working on my NaNoWriMo word count for the day. And with all these photos I am taking of my feet I am sad and embarrassed that I haven’t had a pedicure since my friend left the business.

I got to work jittery from too much coffee and optimistic that I would slay the day. Until our 9:30 break, I was at 100%. No pain, though occasionally depending how I stood on my foot I could feel pressure or as if a bubble were on the bottom of my foot. By about 12:30 (which is after six-plus hours of standing) I had some ache in the toe but no nerve pain.

But my numbers had fallen to 89%.

You see, recovering from this means I know have to learn how to move my body in an efficient way again. And since I’m exhausted and trying to reclaim my performance, the combination is leading to some jerky movements that are stressing my back.

Meanwhile, my neurologist/physiatrist’s office called. They wanted to move my Friday November 11 appointment to Wednesday November 9. I asked if they wanted the same time. The nurse asked me if I wanted the same time. I told her that it didn’t matter I just needed to inform my employer.

Turns out that the doctor was not scheduled to be in the office that day and planned to come in just to see me. I told the nurse that wasn’t necessary as I had seen my podiatrist and now had a foot full of cortisone which was providing a perfectly adequate temporary solution. She insisted I needed to be seen. So I’m going in at 3:30 after work.

I forgot I had a chiropractor appointment at 3:45 that day so I moved that to Monday, November 14 because I’m not about to call the neurologist back and make her change the time.

They offered early dismissal at work today, so when I went into the system to cancel my time off for November 11, I added paid time to the day I took off yesterday and took the early out. I wanted a nap.

Fosters: Jean-Paul Sartre (almost 4 months), Giorgio (almost six months), and Tripod Louise (five years)

But when I got home…

These guys had other plans. (See photo of cats cuddling on me.) At one point, J-P didn’t realize the hand petting him was mine and he freaked out and attacked my arm as if he were defending my life. Until Louise snarled at him.

And in other news, I received an email from Susquehanna Service Dogs:

“Your application has been reviewed by the Partner Selection Committee, and we have added you to the list for a preliminary interview…”

Another form to have a medical professional fill out, this one attesting to my psychological health.

“… Our preliminary interviews provide an opportunity for you to ask questions as well as a chance for us to get to know you better. It will include two staff members, a volunteer and a demonstration dog that will be used to show you the ways in which an assistance dog can assist in mitigating a person’s disability. The interview will be held at our facility.”

So that’s exciting.

More on the service dog process here.

The Stabby Toe and the Challenging Gait

I have a neurology physiatrist appointment next Friday and I recommended my doctor to my podiatrist, who has a relative with MS.

But this blog post will be about my podiatrist visit.

I mentioned I felt kind of silly going to the doctor for an achy toe when I knew my work life had changed and my hip was giving me trouble. But three years ago I had a blister in this toe that got infected and I have a tendency to ignore things. And I’m trying very hard not to do that.

My doctor always makes me feel like a kid, in a good way. We had a mutual friend who has since passed away and that mutual friend always said that if he had a daughter he would want it to be me. Maybe that’s why this podiatrist always makes me feel like I’m part of the family. Or maybe he’s just a good guy.

I forget that I’m wearing a mask that reads “Fragile: Handle With Care.” And he’s the only person who has ever commented on it.

“So you’re fragile?” he asks.

“I am fragile,” I admit. “And I try to have a sense of humor.”

He pats my shoulder.

And the next thing he does is hand me a strange orange ball with peach fuzz.

“You can have one of these.”

He tells me a story, about a house for sale on Route 611 with what appeared to be orange trees. He stopped and took some fruit, cut it open, planted the seeds, and put what grew in his yard. He thought maybe they were Bergamot oranges, but soon found a real Bergamot and found out that wasn’t it.

It’s a flying dragon bitter orange. And he likes to give them to patients for their aromatic value.

He still has a private practice, so he can do things like pass out oranges.

I explain what’s been going on with my foot, and that my specialist can’t see me until April or maybe next week. He asks me about my other doctor, because he hasn’t heard of her. I end up writing down her name (and he asks me why I carry so many pens and I answer “because I like colors.”

Now, I 100% expected him to tell me that my toes rub and cause inflammation and pain because I walk funny. Which he did. And he reminded me to keep my big toe and my second toe separated. Which I don’t. But he immediately decided what I described was nerve pain and wondered if some of it might be sciatic or stem from a neuroma or both. And a later Google search informed me that this type of pinched nerve/nerve tumor can be caused by the pressure on the foot caused by wearing high heels, or in my case, natural toe walking.

I was skeptical before he did his exam, but I know he knows his stuff so I kept my mouth shut and listened. When you manipulate the foot in certain ways, you can make the neuroma “pop” in a way that the doctor can feel and/or hear. He thought the neurima would be over by my fourth and pinky toe. And he did feel a little something there. But when he flexed my foot to check for a neuroma below my second and third toe, my foot audibly and repeatedly crackled.

This surprised him.

He explained my options: orthotics (which I would like to talk to the other doctor before we change my walk), cortisone shots, or surgery.

I let him give me cortisone shots. I don’t normally like anything that numbs pain because I believe in the value of pain as a communication signal. But, if the shots work, it would give us a chance to see if the neuromas contribute to my body’s way of compensating for my, as the podiatrist put it, “challenging gait.”

He prepped my foot with great care. The needle was long but super fine.

He inserted it in where he expected a small neuroma to be. When the needle struck the neuroma, it pinched and burned. Not for very long, but very distinct.

He noticed me flinch.

“Did that hurt?” he asked.

“It pinched, and if a starburst had a feeling that would be it.”

He nodded. “You definitely have a neuroma.”

The needle continued its work.

“That feels like you stuck that needle right out the other end of my foot,” I said.

And it reminded me of how I described the symptom: It felt like someone stabbed a knife through my toe to the floor.

He did the second location. No pinching/burning feeling. Just three very small little starbursts.

So we shall see.