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.

A reset? The NaNo Dilemma, a podcast/YouTube interview, and some disability philosophy

I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.

I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.

I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.

But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.

If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.

I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.

Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.

And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.

I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.

So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.

I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.

And strengthen writing habits.

The jury is out.

I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.

The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.

The Teenager knows how to bribe both of us.

She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.

There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.

And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.

I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.

I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.

She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.

I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.

Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.

I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.

If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.

Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.

We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.

I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.

Murphy, you’re not going to win: How a great day broke my heart, part 1

Yesterday, I “broke” my dear blind friend Nan out of her independent living facility, her first outing since her bout with Covid-19. I drove up to the door in that convenient wide lane that have under the overhang and lowered the window on her side of the car.

“Hey, Nan,” I shouted. “Your getaway car has arrived.”

She laughed, and since she recently had her first Corona experience, it sure was nice to hear her laugh again.

I had the Spotify ready to go, as Nan loves a good random computer generated playlist, and we pulled off. Her goals were simple.

  1. CVS for vitamin C and Excedrin
  2. Batteries for her clock, 2-4 AAAs
  3. Stop at her old apartment as there was a package for her that was not forwarded
  4. Get some cash at the bank.

Well I told her right off that we had a 40-pack of AAAs somewhere in my house. So that was easy. I then told her I had thought I might take her back to my house for chai, but thought maybe getting out of a building into the sun would be more fun. That we could listen to Spotify in the car with the sunroof open sipping chai.

“That does sound nice,” she said.

“The same theory as taking the dog for a car ride,” I explained.

She laughed when I compared her to the dog, and I pointed out that really we both liked things that the dog would enjoy.

Nan and I headed into CVS, where I found her 200 generic acetaminophen, aspirin and caffeine tablets and 100 chewable vitamin C/rose hips tablets. The original price was $31.00 before tax, but I had carefully set up my CVS app to use some coupons that reduced her total to $20.58.

We drove to my house, got the batteries, and headed to her old apartment building.

“I just thought of something,” she said to me. “How are we going to get in?”

“I suppose you’ll have to tap the lobby door with your cane until someone sees you,” I said.

But there were no parking spots on street, and I pulled into the parking lot.

“Why don’t we just drive down to the back door and see if we see any of your neighbors,” I said.

“Good idea,” Nan agreed.

I saw the maintenance man at the back door. I pulled into the middle of the parking lot and hopped out of the car, escorting Nan as I hollered, “Excuse me, but can you let this vagabond into the building?”

She got her package.

We then got my favorite teller at the bank and almost went to a Dunkin several miles away, forgetting there was one on the other side of the bank.

We remembered in time.

We sat in the car, windows and sun roof open, enjoying the sun, listening to cars and birds and all the mundane sounds Nan had missed when trapped in her room with Covid.

And then, she went home and I talked to my friend Maryann Ignatz. I did all the press stuff I had planned for my business. I thought I deserved a small rest. I went up to my room and cuddled with some fosters, including sweet Jean-Paul Sartre.

The teenager texted that her boss was stopping by later. If you’re a regular here you might recall our “cat foster godmother.”

I decided to go downstairs and clean.

I grabbed my computer, Rosie, the 13″ MacBook Air, last of the Intel processor generation, and my iPhone. Foster cat Khloe has been a member of gen pop lately, free roaming the house because she scared the dog so badly. She can be a little dramatic.

The teenager has a baby gate with a cat door at the top of the stairs. Khloe was walking out the cat door and I went to unlatch the gate and must have tilted my hand just enough that Rosie the Laptop slipped from my fingers and somersaulted all the way down the uncarpeted, hard wood stairs.

When I opened her again, her screen image was splintered.

I have three book projects underway for Parisian Phoenix, and the Easton Book Festival coming up. I’m still wondering how best to pay off the recent ceiling repair…

Now is not the time.

But life is like that. I have to remind myself that we have more appreciation for the things that don’t come easy, that real success is slow.

And then I broke down into hysterics, alone, just me and the dog. And I scrubbed the floor on my hands and knees.

This saga will be continued on Parisian Phoenix’s blog.

Searching for the weird and the yummy

Dunkin’s new pancake minis

The teenager loves pancakes so when Dunkin announced their new pancake minis, I had to buy her a set and get her professional opinion— as a diner waitress (at least for a few more days).

I thought they had a good flavor, though a dry texture. The teenager was not impressed. I think the awkward texture comes from the fact that the tiny pancakes are fortified with protein.

For $2.99, that works out to fifty cents a pancake. I think Dunkin has tastier and more satisfying options at that price point.

Kitu Supercoffee Dark Roast K-cups

I think I have a new favorite coffee. I only paid $1 for my recent prescription at CVS, so I treated myself to a pack of Kitu Supercoffee in dark roast. It was on sale for $6.99 for 10 cups. I love that the flavor and the extra caffeine and vitamins don’t hurt.

Finally, I had to review Hungryroot’s Thanksgiving Bowl featuring their seasoned turkey meatballs that the teenager and I already know we love.

The Sauces N Love cranberry sauce was the right blend of smooth and tangy. The Right Rice medley was quick to prepare and had all the familiar flavor of traditional stuffing. The grains were softer, fluffier and almost had a cakey mouth feel.

I liked both so much I ordered more.