Today is the day The Teenager planned to work on the downstairs bathroom, installing a new floor and finishing the paint. Our fellow cat foster has agreed to help her with this project, which is very kind of her. Originally, The Teen had off today, but at the last minute her boss added some clients to her roster.
So, as I write this, I have a belly full of pleasant Middle Eastern food after going to Allentown with M to visit the restaurant Damascus, which was once the establishment of our college peers whose parents emigrated from Syria.
My washer, dryer, toilet and floor have been removed from the downstairs bathroom and I have a burning, burning toe.
Where to begin…
I think the logical start might be our meal.
We arrived and inquired about the history of the restaurant, only to learn that the cousins who lived down the hall from me in college did indeed come from the family who founded and operated Damascus for 25 years.
We also learned that the family sold the restaurant about 7 years ago, but they still made amazing food.
I ordered the falafel sandwich and M ordered the garlic labneh, hummus and zaatar/oil.
My falafel came in a tight cylinder of pita, stuffed with crisp lettuce, hot peppers, tomato and dripping with tahini. It was lovely brown and crusty (in the good way) on the outside of the falafel, but soft and flavorful on the inside. They put a few hot peppers on, just enough to give the tahini some zing but not too many, protecting the flavor integrity of the falafel.
The hummus was smooth. The labneh creamy and rich with garlic. And as M loved to point out, the zaatar had the sumac he loves.
After our lunch, we shared some of the most photographic baklava I’ve ever seen and sipped Turkish coffee. I don’t know about you, but I love a strong Turkish coffee so rich it almost reminds one of chocolate. I didn’t add sugar, preferring to alternate bites of the succulent, picture-perfect baklava with the coffee.
The man behind us explained to his date in detail how they make baklava which involved lots of repetition of “they crush pistachios” and “they layer phyllo dough and honey” over and over and over.
M and I talked for a while sipping coffee in tiny cups and then drove to the Parkland area to see the new mosque under construction a friend had told him about when they met overseas.
On the drive home, my damn toe started burning again, so badly that I could not wait to get home and rip off my socks and remove my new toe separator. I believe I mentioned yesterday I bought each variety of toe separator available at my local CVS: the gel separator, the bunion wrap with toe separator and the gel toe protector.
My toe no longer looks inflamed, but the skin is still painfully tender and red with skin peeling all around.
I decided to wear gel separator with the bunion rap today. The gel separator felt much thicker than my normal toe separator cushion from the podiatrist. I really liked the wrap, but I really think the gel separator might have put too much pressure on the toe.
My traveling companion M is in town so I stopped very briefly to say hi. He’s staying at a hotel between Sheetz and Wawa, and he’s never been to either, so I have a Pennsylvanian duty to educate him.
His hotel has a few artisanal touches in an otherwise uninteresting and rather lackluster environment.
I received a message from M last night while I was at Barnes & Noble at the Noble Quills poetry open mic where Darrell was featuring. (See YouTube video below.)
My most-exhausting-work week ended with a few lessons. I noticed that no pair of shoes I own will alleviate the foot pain I am experiencing, though experimenting with different tape/toe separator arrangements I can select the type of pain I prefer to experience. With this in mind, I have purchase three different varieties of toe separators from CVS today. ($22 worth of merchandise that I got for $15 and I paid with my HSA debit card.) I achieved 101%, 101%, 94% and 100%.
I had my follow-up with the neurologist-physiatrist today. The Baclofen appears to help my stiffness, and though I do experience a weird jerky stiffness at the end of the day after I sit and then get up, I have not fallen and I seem to move easier. She filled out my accommodations paperwork… so hopefully I will get a share of the easier work. I offered several ideas of how to provide easy accommodations. (I shared the same letter with my doctor and Stitch Fix.) The doctor remarked that my gait had noticeably improved and I think she laughed when I told her I preferred walking in cowboy boots because of the sound and the feel. (She was wearing a mask, so I can’t be sure.) She also seemed to make a quiet noise of approval upon the mention of a service dog.
I had an hour between appointments and in that time, I hung out with The Teenager’s dog (F. Bean Barker). It was Festive Friday at work so I wore my favorite “Fleece Navidad” Christmas sweater.
I then met with my therapist. He was one of three people who served as references for my service dog application and because I mentioned I had a therapist on my medical team, they sent him a psychiatric evaluation to fill out. He wanted to review it with me, because he wasn’t sure of the weight of his role in the whole process. He was much relieved to hear that I had had the in-person interview last week (read more about that here) and that I had received the email an hour earlier stating that my home visit and canine therapeutic evaluation would be scheduled early in the new year.
So I said I would approach the paperwork as if they just wanted to know if I was stable enough to care for myself and the dog.
By the time I returned home from that appointment, the UPS man had left a special package on my doorstep. It was Larry Sceurman’s debut novella, The Death of Big Butch. And some other books from Parisian Phoenix Publishing. As is my custom, I did an unboxing on film.
The Teenager and I did some chores around the house and loaded up the car with the dog and the books and made deliveries: to the author (where books were signed) and to people anticipating the release. And, because Larry lives near a 7-Eleven, the teenager needed to stop for a Mountain Dew Slurpee.
She happens to have one of her new sweaters on from her latest fix.
And the joy of bringing Larry his books warmed my Grinchy heart.
And watching Larry decide how to sign his books, debating which of his signatures should be his author-specific nomenclature, also had an impact. I’m proud of his book. I’m proud of the product the Parisian Phoenix team made– and I’m told the effort and the quality of the book are more than Larry had ever expected to see from his stories. After all, when he pitched his stories to me, Larry had figured he had a short story anthology to offer the world.
And poor Larry, I told him he had a novella in Big Butch, and still had enough stories for the anthology, and that one of the longer anchor stories in the anthology really should be a full length novel. He’s stuck with me for a while.
Barbara gave us some cut-out cookies. Buttery, not thick not thin, with a lemony or vanilla-y hint of something so scrumptious. Roll-otts as my Pennsylvania Dutch in-laws would say.
Larry and Barbara also gave me a large bag of cat toys, which we gave to foster Khloe for right now. She’s protecting them and sleeping with them like a dragon hoarding treasure.
Maybe I’m naive or egotistical, but I really love the craft model of publishing I’m creating– including my authors in every stage of the process and creating a book we all believe in, from the author to the publisher, the artists to the designer. I never thought publishing could empower, but I’m learning so much that I never realized I wanted to explore. Talents always feel better when you share them.
Good morning. It’s Thursday morning as I write this. I have hit more than 100% at work all week. I’m exhausted and behind at chores at home which appears to be my natural state these days. On top of that, we have no caffeinated beverages in our breakroom at work due to a countertop upgrade. I think we’re all about to mutiny.
Yesterday, The Teenager did a Dunkin run for our lunch break and made me and several of my friends very happy. Today, we all pledged to bring Thermoses.
I called my podiatrist on Monday and left a message with his answering service. According to the service, they should have returned to the office Tuesday afternoon, but I have not received a call.
I have been experimenting with shoes and toe arrangements. This had yielded less pain in my foot. I have found using the toe separator between my big toe and the next toe and taping both toes together has decreased the workload of the troublesome toe. My data might be too preliminary.
The pain from the neuroma only acts up about twice a day now. When exactly depends on which shoes I wear. And what type of pain the rest of my body experiences also connects to the shoes. Do I want generic foot pain? Hip pain?
Big Butch officially releases tomorrow. The print copies have left the printer, Amazon (and probably Barnes & Noble) will accept preorders, and the ebook is live on Kindle.
My diet has been a mix of trash and veganism, thereby counteracting the recent weight loss I had when I initiated eliminating potentially inflammatory foods from my diet.
This weekend I hope to edit the Parisian Phoenix website and take kittens/cats to the adoption meet-and-greet, while the Teenager works on the downstairs bathroom project.
Tomorrow is my big appointment with my absolutely amazing neurologist/physiatrist where she will fill out my official work accommodations form. Speaking of which, the hospital just billed me a second time for the intermittent leave paperwork I asked her to file.
And I still haven’t rescheduled last week’s chiropractor appointment.
Oh… and the Teen got a fix yesterday. Unboxing here.
Saturday (December 3, 2022) was International Day of Persons with Disabilities.
Coincidentally, today I am watching Hulu and catching up on ABC’s The Good Doctor. I started losing interest in the show when the characters starting experiencing once-in-a-lifetime traumatic events every season. The show seems to have become surgeons trying to save each others’ lives instead of the patients.
The main premise of the show is that Dr. Sean Murphy is on the autism spectrum and uses some special effects to show the audience how his mind works (which reminds me of the early seasons of House MD when they relied on special effects to show what was happening inside the patient, but more bookish).
Sean leads what I think everyone would agree is a normal life. And his journey to fit in and live that normal life is central to the program. Did the creators/writers make him a doctor so that people’s lives rely on him? Or is it to show that this is an amazing use of his unique mind?
SMALL SPOILER AHEAD
Regardless, the writers place his social struggles amid these high stakes events that really don’t depict ordinary life. In the current season, Sean’s supervisor Audrey Lim finds herself lucky to be alive but in a wheelchair. The initial quandary about this is Sean’s role in the surgery that left her paralyzed.
The first couple episode of the season address Lim’s adjustments to life in a chair, and this includes her trying everything she can think of to return to her life as a stellar surgeon at the hospital. And she does. And even while achieving these milestones, she is angry and dealing with disability grief. I would also venture to say that at some points she almost says she’d rather be dead than living this disabled life.
Now I’m on episode 4 or 5 of season 3, and now the team thinks they can find another surgery to cure Lim.
Why does Lim have to be fixed?
Once again, the mainstream media is showing us that disability must be fixed. I was so impressed with Lim’s balance of frustration and determination to regain her prestige as a surgeon. I don’t want to see her fixed.
I guess we’ll see where it goes.
But I also wonder what young people who rely on wheelchairs and other mobility devices would feel if Lim walks again. If a gifted medical professional can’t feel whole and productive without her legs, what does that say about the value of disabled lives? What young person needs to see representation of someone accepting their new abilities?
The euphoria of today is wearing off after miles of traffic, construction zones in the rain, and accident after accident at the roadside.
I got up with my 4 a.m. alarm after an uneasy night of sleep, primarily because I knew I was driving down to Susquehanna Service Dogs’ new training facility about 75 miles away. Alone, as the Teenager had clients. Which made her very unhappy because DOGS.
Took a shower. Drank some coffee. Even did some work on my novel, Road Trip, the next volume in the Fashion and Fiends series.
Went to work. Only performed about 89% despite getting the refixes. My toe was burning, my neuroma pain was back at between a 6-8 and my hip was uncomfortable, feeling like it didn’t want to bend. I didn’t want to take my Baclofen, because even though I have had success taking it in the morning… it felt like tempting fate in a bad way to take a muscle relaxer before a solo road trip on a rainy day.
I opted to wear my Kassy Boot by DV/Dolce Vita from Stitch Fix. I agonized a bit over which shoes to wear. Did I wear my work shoes so I could walk as I do in flat soled Vans? I decided on my cowboy boots because it shows how I walk in public. And I can always take my shoes off.
The drive to the facility was boring thanks to the rain. I had hoped to stop for coffee once I got my bearings near them, but I had forgotten how much nothing there is in the area around the Rt. 78/81 split.
When I arrived, a service-dog-in-training came to greet me, as a test of his interaction and focus with new people around. I was told to pet him only when he successfully remained in his “sit” after his trainer told him to “stay.”
We tried three times, but each time he stood. So we didn’t get much petting done.
I read some of my book, made some notes in my journal and willed myself not to look so red. I got very nervous when the candidate before me seemed much older than I am and had a cane. Of course, my immediate thought was, “I’m not disabled enough to be here.”
I got to meet the woman I have been working with so far, but at this stage of the process I will now be working with someone new. The interview team included a volunteer, a handler, the administrator in charge of dog training and the person who I will be partnering with for the next stages of the process.
Today allowed them to ask me questions about my condition, what I think a dog could do for me, about me in general and I got to work with an ambassador service dog. She showed me all the tasks she could do and I got to walk with her using different techniques: just a leash, a soft strap, a stiff mobility harness and a leathery mobility harness that is softer for me to hold but more snug on the dog.
They videotaped me walking, with shoes and without, with the dog and without. The dog was such a goof and a show-off. I think she knows her job is to make people at ease and happy as much as it is to show people what a dog can do. The staff and volunteers complimented my boots.
The drive down took 90 minutes, but the drive home took almost three hours. But you know what? It was an amazing experience. To work with a trained, experienced dog and get a feel for the people– paid and volunteer– that do this incredible work.
A dog is an incredible commitment, but I also see how much the dog can do and what a valuable relationship a service dog and handler team can have. I’m so glad to have had the opportunity, and if the day comes that Susquehanna Service Dogs can place a dog with me, I’d be very grateful.
Fosters kitten Jennifer Grey and tripod Louise woke me up at 2 a.m. to play “let’s compete for attention.” Now I love these two cats, and even in the middle of the night I don’t mind giving some half-asleep snuggles. But this went on for at least a half an hour as they each crept closer to me, until Louise was in a ball in my armpit and Jennifer was on my chest.
The Teenager needed to take her car to Kelly Nissan for major repairs. So she drove me to work and kept my car and Southern Candy agreed to bring me home, meet the menagerie and have dinner with us. I’d been looking forward to it. I even bought a chicken. A cute little organic chicken that was the size of a Cornish hen but a chicken nonetheless.
Work was work… I was actually doing okay and hitting my numbers. I took a Baclofen at 6 a.m. and that seemed to loosen everything. The other people stationed around me made me feel a little out-of-place, but that’s fine, especially since one of the people on my roster was delivering work and I got a refix cart. Which is the work that is easier for me to do. And most of my carts were medium, not 1X or 2X like usual. And then around 9 a.m. it started.
The internet started going down. And it looked pretty random. A station beside me. Two stations in front of me. But not me. Half a row over there. So they started having half the people fold and box and those with a working computer scan– except even then I only got about 5 boxes and still had to QC out of the cart.
At ten a.m., the powers that be at work called Voluntary Time Off. I said I would stay, as I felt good and Southern Candy usually tries not to take VTO, but her computer was down and in her department, things weren’t moving as smoothly as ours were so they were destined to run out of work. We left around 10:30, which would at least solve one problem: I would be home when Kelly Nissan called with the Teenager’s car and I would have more flexibility to get her to the dealership.
Southern Candy meets everyone. The elusive Louise makes an appearance. Foster Khloe, our Bean dog and the crazy Goffins cockatoo Nala immediately love her and the Teenager demonstrates probably a full 30 minutes of Bean dog’s tricks.
Kelly Nissan calls. The teenager’s Rogue will need another day in the Service Department. They offer her a loaner. She asks if she can drive a loaner at her age, figuring the policies are similar to rental cars. They assure her that she only has to be 21, and she’s 21….
Um, she tells them, I’m 18.
Oh, they say.
I guess they’re not used to 18-year-olds dropping off cars for $2,000 in repairs.
Kelly Nissan gave me the loaner. Now any dealership worth its salt will lend you a car better than yours to entice you to buy. And one of my dream cars is a Nissan Z. They aren’t going to lend you a Z, but I used to have a Nissan Altima with all the bells and whistles and the big 3.5 liter engine. That’s the car to which I compared all the cars I test drove when I bought my Jetta turbo. I hoped they would lend me a 2022 Rogue, which would be the same car but a decade newer than what the Teenager brought it for repairs.
They brought me a 2023 Altima. I got a little tingle when I heard Altima, but to my disappointment (but meeting my expectation), it was the base model. It handled fine, drive smoothly, felt like I was in a fighter jet cockpit instead of a car. But it had no real power. No sunroof. No heated seats. And it was grey.
They had given me a perfectly boring car.
The back-up camera has better resolution than a lot of televisions, and the warning beeps for parallel parking are annoying.
Once I return home, Southern Candy and I start the chicken. It’s 3 p.m. and the chicken should take 45 minutes to roast. Unless it’s still frozen in the middle. The chicken still has its neck. Southern Candy points this out and I try to cut it but all it does is make her laugh. She tries. She’d not getting anywhere either.\
So we ask Chef Google.
Together we de-neck the chicken. Makes me miss my vegetarian days.
Chicken in the oven, my neurologist-physiatrist calls. She’s filling out my intermittent leave paperwork and wanted my input. I mentioned I have the outside firm’s analysis of my job, and that I planned to give them to her for the upcoming accommodations paperwork. She says she’d like to have those, so I run upstairs and scan them.
I also show them to Southern Candy as we are on the same roster at work and we all technically could be assigned to do any jobs in outbound.
We check the chicken, it needs more time.
The partnership specialist at Susquehanna Service Dogs calls. They have a last minute cancellation for an in-person interview on Wednesday. Can I make it? I ask Southern Candy and the Teenager: Do I want the slot? Work prefers 48 hours notice for requested time off. And this would require a half day as the agency is 90 minutes away. And I’m not sure I have paid time left.
“How bad do you want it?” Southern Candy asks.
“Badly,” I said.
I accept the interview and email my supervisor.
We check the chicken. It needs a little more time. It’s 4 p.m.
The teenager mentions Chinese food. Southern Candy makes a yummy noise. But she tells my daughter we have chicken right here.
“It’s fine,” I said. “We can have the chicken tomorrow. Or pick on it cold.”
We order $50 in Chinese food. We eat like kings.
Then, Southern Candy and I say our goodbyes and I head to the gym. Where Andrew puts me through a core workout. I gave it everything, as I always try to do, but those side planks were murder on a belly full of Chinese food.
I went to bed exhausted– and had to type this blog entry in the morning, which I rarely do.
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.
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.
I don’t have the energy and the endurance that I once did. I can no longer drive myself to clean the house in a frenzy or bake all my bread from scratch.
I’ve gotten older.
My… constitution?… does not maintain consistency. Whereas it used to be my moods that swung, now my body’s functionality waxes and wanes.
So far today I have:
Folded laundry, and done another load
Did the hand wash dishes
Cleaned most of the stuff off the corner table
Had a glass of water, and a glass of iced tea
Cleaned the cat boxes in my room
Fed the bird
Vacuumed
And made amazing vegan flautas with Hungryroot cashew cheddar
I started Five Days at Memorial on Apple TV while I hung out with the dog.
And made great strides cuddling foster Jennifer Grey.
FURR Foster Jennifer Grey
With my walking being so unstable, I’m extra proud to announce that Friday night I squatted 135 lbs.
I started taking the Baclofen my neurologist prescribed and we’ll see if that makes walking easier.
And I’ve been sleeping 9-10 hours a night over the last few days so hopefully that also means my body is getting some recovery time.
Last but not least, I’ve been trying really hard to reduce sugars, refined carbohydrates and processed foods from my diet to test if that will lower the amount of inflammation in my body.
Angel Ackerman 