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.

The Highlight Reel of the Ides of November

It is 6:45 a.m. I went to bed around 11 p.m. last night, after a long conversation with an old friend whom I haven’t had a chance to truly connect with for years (and while we “caught up” last night as if no time had passed, it didn’t feel like the happy reconnection I thought it would), and the dog woke me up at 5 a.m.

At 6:15 a.m., after loading the dishwasher and starting laundry and trying to snuggle dog into a nap with me on the couch, I finally made coffee figuring sleep would not return.

Now, the dog is gently snoring on the other couch.

I definitely would prefer to be a cat versus a dog. The dog seems an anxious and needy creature, where the cat has an attitude and most of them act like they have their shit together.

I haven’t written much this week because my physical and emotional struggles have left me in a survival mode, and upcoming changes at work have me concerned for my long-term success at mastering my cerebral palsy and achieving work/life balance that includes leading Parisian Phoenix Publishing.

And I’m okay with these struggles, they mean I’m human and I’m alive. And I guess I want other people to know that in an age where we “social media” ourselves to death and we’re exposed to worldwide turmoil and glamour, that I’m here with you in the trenches, surviving.

So, Wednesday turned out to be a hard day. We received the official word that starting some time in December, our performance metrics will be judged daily instead of by their weekly average. And that we can miss the daily minimum two days a month. I had already turned up to work crying because of stress in my everyday life. (Which only my friend in the parking lot saw. Speaking of my friend in the parking lot… she needs a nickname as she will play a larger roll in this blog post and hopefully appear more. I think I shall call her Southern Candy, because her roots are in the Southern United States and she likes to pass out hard candy.)

Now, after my neurologist/physiatrist appointment on November 9, (see Is it Time for Botox), I filed for Intermittent Leave from work which would allow me job protection if my work missed increases due to complications from my disability or more doctor’s appointments. I now have a lot of doctor’s appointments. With recent changes at work, I seem to have triggered a couple neuromas in my right foot, which my podiatrist shot with cortisone (See The Stabby Toe and the Challenging Gait), and unbeknownst to me, as I had never had cortisone to me, this transformed my good leg into a second bad leg.

It absolutely removed all my pain, but — and this is probably why my podiatrist asked when I planned on returning to work and seemed satisfied that “tomorrow” would give me adequate time to recover– it made it impossible to control and rely on my right leg as I typically do. BUT I can also say it made me acutely aware of how I use my legs and unfairly make my right leg carry more than its share of the movement burden which is why my right hip has issues.

My left leg “scissors” causing my left knee to pretty much cross in front of my right leg when I walk (and yes, that is as awkward as it sounds) but now my right foot drags, causing my toes to curl under my foot. I have compensated for this change in walking pattern by buying cowboy boots. Not real ones, but ones we sell at work: the Kassy boot by DV by Dolce Vita. (Unboxing on YouTube here.) They allow me to hear my walk, feel my foot, and not step on my toes.

At our weekly meeting, our supervisors announce the metric change. I understand their logic. They plan workloads daily so they should measure results daily, simply put. And as this change rolls out, I’m confident the company will “do the right thing” in implementing it. I’ve been there two years, so they have investment in me as I have investment in them.

On my good days, I average 101% to 103%. But on my bad days, without some extra support that minimizes my physical struggle, I average 95%. So with the weekly average system, I’m still a “fully performing” employee. On a really bad day, which happens ironically about once or twice a month as their new system will allow, I give everything I can and sometimes only hit 85%.

Now, unlike some of my colleagues, I am also on a work roster that has changed shifts twice in the last calendar year. Yes, I have had three different work schedules in the last year: Monday to Friday, 3:30 p.m. to midnight; then Sunday to Wednesday, 6:30 a.m. to 5 p.m.; and Monday to Friday, 6:30 a.m. to 3 p.m. All very different.

Add a neurological condition to that and it’s hard to adapt. When they offered Voluntary Time Off on Wednesday, allowing us to leave three hours early, I took it. My emotional state would best be labeled as frazzled and my right hamstring had started bothering me, probably because it felt like my right leg was a useless tree trunk.

Here is the happy part. The kindness part. The part where the light shines from one person to another. Thursday morning, I get a text from Southern Candy at 5 a.m. “Stop by my car when you get to work.”

She gave me a cat figurine. A cat in frilly dress with pink bloomers, staring into a goldfish bowl that even included a goldfish.

“I know you had a hard day yesterday, and it made me think of you.”

I brought it home and placed it on one of my Parisian Phoenix bookshelves. A place I can see from my workspace at the table and/or when I’m having dinner.

To skip ahead, I’ve been thinking it’s time to record and place a request for permanent accommodations at work. By Friday morning, when one of my colleagues said he’d like to help me out with the easier work but too many people had doctor’s notes, I decided to email my supervisor. So he and I now will try to make that happen. Around the same time, my neurologist’s office called to see if they could move my December 6 appointment to December 9. The times they offered overlap with a preexisting doctor’s appointment I have.

And my intermittent leave needs to be certified by December 9. I returned their call, expressed my regret that those appointments would not work, and asked the person on the phone to please leave a message for the doctor and her nurse that my employer had sent paperwork and that I would have more paperwork and that I would gladly pay any associated fees.

I also wanted to mention I am trying to eliminate inflammatory foods from my diet, but that can wait until I see her. I am wondering if I should request to work with a dietician and get a new set of bloodwork to check not only the standards like iron and cholesterol but also vitamins like B12.

I’ve done really well not stress eating in the ten days since I’ve seen her, eating vegetarian baked beans at work yesterday while my colleagues ate piping hot pizza. My weight is slowly dropping.

I’ve eaten no junk food in the break room, choosing fruit leather and yogurt over Cool Ranch Doritos and fancy fruit snacks. I even reduced my caffeine intake. Yesterday for dinner I made thick egg sandwiches with eggplant, mozzarella and extra sharp cheddar on my favorite multigrain buns and a little chipotle mayo and avocado hot sauce. One for dinner and two to go in the freezer for work lunches this week.

Although I know my perceptions are faulty, I feel like my only success this week has been with Andrew at Apex Training. I got my gym sweatshirt, and the dog immediately jumped on me and coated it with mud so I don’t have a decent selfie… yet. But these guys at the gym have been a lifesaver. Andrew works so hard to meet my needs and come up with innovative exercises to challenge me and train my muscles to cooperate. I did a seated shoulder press this week with 30 lb dumbbells, which ignited my inner strength as my lower body becomes more useless.

I discussed my hamstring troubles and we did some balance exercise yesterday. Andrew thought I was going to stand on the balance trainer and hold a weight on one side to create instability in my stance. Then, he saw me try to stand on the ball. And we opted to practice that first.

Finally, I asked The Teenager to check on Foster Kittens Jean-Paul Sartre and Giorgio in their habitat at Petsmart. I will see them today but it brought my heart joy to see that they are doing fine.