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.

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.

Sometimes the bad, and the cold, can be good

Working 10-hour day shifts after a year of second shift has certainly proved challenging (and this weekend will be one of those challenges as we change the clocks in the wee hours of Sunday morning). And I do appreciate the long weekends, but not the 6:30 a.m. start times.

My “weekends” (Thursday, Friday, Saturday) get hectic— usually one day for errands and medical appointments, one day for chores, and (only quasi-joking) one day for cats.

I woke today at 5:30 a.m. in part because my cat Fog seemed to be in the middle of a panic attack, banging on my door and screaming, wondering why I was still in bed. I thought I might snuggle back under the covers when the garbage man rolled up and decided to bang cans and recycling around underneath my bedroom window.

Now that I’m on day shift and normally wake at the ridiculously ungodly hour of 4:45 a.m., 5:30 a.m. is technically sleeping in. And while the garbage man and his predawn ruckus used to piss me off when I went to bed at 2 a.m. after clocking out at midnight, “he” is merely a minor inconvenience now.

But I woke with a strange chill as I crawled out of bed— but I am always cold so I thought nothing of it.

I picked up Nan and 9 a.m. and as we were working in my dining room, I asked, “Are you okay, I’m cold.”

And she confirmed that it was cold but it was okay.

But I said no, that I couldn’t feel my toes and we needed to nudge the heat even though it was approaching 50 degrees outside.

But the thermostat read “56” even though the heat was set at “62.” And I realized that my fuel oil company, Deiter Brothers, had sent me an email that I would receive my automatic delivery fuel drop in the next day or two.

Obviously, we didn’t make it.

We were out of oil.

I confirmed it and called Deiter Brothers and brought Nan out to the sunporch where it was 60 degrees and sunny.

And the dog kept us warm.

After I took Nan home, I did a headcount on our personal and foster cats and sure enough everyone was someplace warm.

I folded some laundry on the porch, now a toasty 64, and the oil man arrived as I sipped a cup of coffee to stay warm.

And much to my surprise— I had enough summer prepaid gallons left to fill the tank. If I didn’t, my locked in rate would have been $2.399 a gallon. Which seems insane compared to the current price of oil.

This is only the second time in the twenty years I’ve lived in this house that automatic delivery let us run out.

So now we’re toasty again— thanks to the oil delivery man priming the furnace and getting us running again.

I shared some good laughs with Nan, got some good animal cuddles and appreciated the sunshine more than I might have otherwise.

Does the pandemic have a fun side?

Sometimes I am reminded of my age— when I think of those summers of my girlhood circa the 1980s, when Pennsylvania experienced temperatures that averaged in the high seventies/low eighties and for about 2 weeks every August a heat wave of around 85 degrees.

It also snowed a lot more, and I can’t say I miss that.

Now I won’t be naive enough to suggest this pandemic has been fun. Some people have gotten seriously ill, others have died. Luckily in my circle, those who contracted Covid-19 survived and none ended up in the hospital.

But as I said in the beginning of the pandemic, the Coronavirus has forced us to look at our health system, our purchasing habits, our supply chains, what we need and what we don’t. I have found a more relaxed pace of life, and while I have lost my job, I have found some inner truths that bring me hope. Perhaps that is where my naïveté lies.

Yesterday, I had a business meeting with my first client as a partner in Thrive Public Relations. Thrive is the brainchild of a friend— who has been searching for someone with media, print and editorial experience to complement his digital marketing, strategy and networking expertise. I have agreed to help him, and hopefully this will lead to some paying work that could help keep me afloat and allow me to rebuild my career portfolio.

I spent much of the last year as a grant writer, and would love to highlight some current public relations work to augment my grant writing potential.

So I was asked to attend a business lunch at Sogo Asian Fusion yesterday in one of my favorite environs, downtown Easton. I thoroughly enjoyed, despite the 95 degree heat, dining on the patio. It felt lovely to build an outfit, put on make up and head into the world.

Then later that evening, my propensity for stress-related binge-eating led to me eating most of a jar of “trail mix” — I put that in quotes because it had walnuts and almonds but was mostly butterscotch and white chocolate chips— that my blind friend Nancy gave me for Christmas. I had it on my desk at work and it was one of my possessions that Mr. Accordion drove to my house.

The teenager doesn’t like almonds. So she gave them all to me.

And then my daughter cornered me. She started reciting old bits from Brian Regan, one of my favorite comedians (from the golden age of the early 1990s, before I graduated high school and Nirvana changed the world).

Finally she got tired of her delivery falling flat and we spent an hour watching Brian Regan clips from YouTube on my phone. I grabbed a Diet Coke and finished the rest of the vanilla vodka from County Seat Spirits.

The teenager’s father, my husband of 20-years whom I separated from last summer, does not like stand-up comedy. But a good stand-up comic (like Regan, or Trevor Noah, or for those who have thicker skin and/or less sensitivities Denis Leary and George Carlin), can lift my darkest spirits. So I love the fact that our daughter inherited my taste in comedy.

And when I got up this morning, as mundane life started to overwhelm me with chores and commitments, Nan called.

The Mighty.com had published her piece on our summer picnic and shared it with Yahoo News. It features me, and the teenager, so I got to enjoy reading about my life.

You can read it here: Nan’s summer picnic article on Yahoo News

So maybe life doesn’t look the same as always, but the simple joys don’t really change.

Wendy’s Breakfast

I called Nan, my blind friend, during the weekend and said, “I have to get out of the house. Do you have time this week for a social visit? I have some customer loyalty coupons and specials for fast food— how do you feel about breakfast at Wendy’s?”

Nan has a pretty standard response to my phone calls.

“Ooooooooo,” she says.

We agreed I would pick her up on Monday at 9 a.m.

The teenager usually doesn’t emerge from her room until after 10 a.m. I decide to surprise Nan with a trip to Family Dollar, too.

I need a notebook for my volunteer role as Communications Director for Aspire To Autonomy, Inc., and for my notes as a partner in Thrive Public Relations.

Part of the fun of going to Nan’s building right now is the massive construction project they have going on. Her building has seven stories and they are removing the bricks on the south-most wall. The scaffolding they have is like an erector set for Godzilla.

Nan gets in my car, and despite the temperature already in the 80s and the humidity above 50%, I don’t have the air conditioning on in the car. The breeze is nice, the sun roof is open and the air conditioning is too cold.

We plot our order via the Wendy’s app— I order a small vanilla Frosty-chino (on special for $1) and the maple bacon chicken croissant (free with any mobile order). I want to try the chicken honey butter biscuit, too, but I can’t pass up free.

Nan orders the traditional sausage, egg and cheese combo. We order it on the standard bun as croissants can be greasy and flat and a biscuit might be crumbly. When you are planning a car picnic with a blind person, ease of handling is the primary concern.

We make hers the combo. We can split the seasoned potatoes and she gets an unsweetened ice tea as her beverage. Like me, Nan doesn’t like sweetened tea.

Our total for breakfast comes to $6.77.

We split the tab.

We drive over to Wendy’s, go through the drive through and discover that the Wendy’s parking lot has a lot of shade. Things we never noticed before the Coronavirus pandemic.

Surprisingly, the croissant is not a traditional croissant. It is square. This pleases me as I hate when fast food restaurants use American style croissants for sandwiches.

Nan’s sandwich appears to have a real egg on it.

I really like having chicken for breakfast as I am not a “breakfast meat” person. The maple bacon fills the whole car with maple scent. Nan finds it too strong. It tastes like table syrup.

Nan and I agree the potatoes are amazing. Nan reported that her sandwich was better than the average fast food breakfast sandwich.

We both think the potatoes are dangerous.

And I dribbled Frosty-cino down my white t-shirt.

We were very pleased with our experience.

Body Privilege

Last week, I wrote my piece “A Somber Thought” randomly as a reflection.

Last night, I reworked it and submitted it to The Mighty.com, a social media site for people with disabilities and their caregivers.

They published it instantly, despite having accepted an earlier piece that may have “died on the vine.” The earlier piece was on what to expect at your next doctor’s visit during Covid.

The current piece on the Mighty has been shared to Yahoo News and Zenith News.

Body reliability is a type of privilege. One you don’t appreciate unless you have yours taken aware or you never had it.

The original post on my blog is here: Disability and Reliability.

The Mighty post is here: Let’s talk about body privilege .

Ask the Yahoo post is here: Yahoo: Let’s Talk about Body Privilege