In the last few months, I made a promise to myself to be kinder to my body and give it more rest when my cerebral palsy-related issues flare. That was part of my logic in filing for intermittent leave, so I could feel less guilty about calling out. Because while I don’t call off often, and while I have a legit disability, I am after all American and consumed with a drive to push myself past pain and perform at all costs.
So the fact that I laid in bed for an hour this morning contemplating the benefits and the detrimental effects of not going to work, and still called out is a big deal to me. Being a good employee is a big deal to me.
But as soon as I posted my last blog entry, Anatomy of a Sick Day, I checked my personal email only to receive an email from my very nice claims administrator for the absence management company hired by Stitch Fix to handle leaves.
My sick day was being approved only as a courtesy as I had already used up my leave time for the year. I had a medical appointment in early November which launched this whole journey (Is it Time for Botox… in my Hips?) and followed up on a visit with the podiatrist where I was diagnosed with two Morton’s Neuroma (The Stabby Toe and The Challenging Gait).
I have had two falls since early November, and significant work changes throughout the fall. My right side has taken a lot of abuse in all of these falls and changes, and my toe still burns more than it should.
But somehow, despite have a neurological condition that has changed my bone and tendon structure, made it difficult for me to walk, and left me with muscles in my lower body that never relax, the absence management company approved my leave for up to three hours twice a year.
SIX HOURS A YEAR.
How is that helpful?!?!?!?
I reviewed the initial letters and paperwork and found that my very, very helpful and talented neurologist wrote that I should have leave for 1-2 episodes per year of an undermined length. She physically wrote in her own handwriting “undetermined” and explained that my cerebral palsy made me an increased fall risk.
And they decided that the only leave I needed was for regular twice-a-year visits to my neurologist. Why would I pay $30 per form to have special leave for two appointments per year?!?!?
To settle my nerves– because even after I wrote back to them that she requested leave for episodes not appointments they would not budge and said my only recourse was to have more paperwork completed, at my expense– I called my blind friend, Nan. Nan has a lifelong history of advocating for oneself and at this point even she is frustrated and exhausted by the constant mental gymnastics it takes to get the most basic attention.
She moved to a retirement community in September, since as a blind person she will lose her independence if she relocates at a period of time when she no longer can re-learn a setting. She told me how she asked an administrator to read her the activities calendar. The administrator read her one week. And told her to call for help getting more info.
At this point, it’s been almost six months. Nan’s rent is significant, and it would have taken 5-10 more minutes for the administrator to go ahead and finish the month. Yes, Nan can call someone to update her on the day’s activities, but as someone who never neglected to point out the accommodations she would need, shouldn’t some of this help be automatic by now?
Anyway, I’m going to download the medical forms and start filling them out myself, and see if my PCP will just sign them.
The Teenager received her remaining Freestyle packages from Stitch Fix yesterday– one from the warehouse in Indiana and one from the warehouse scheduled to close in Utah.
So, before I launch into another blog post about the frustrations of learning the limits of my own body, I waited to share this photo of her in a super adorable top I found for her on the web site. I’ve probably folded and shipped at least 20 or 30 of these. Every time I’ve dealt with it I’ve struggled with its fluidity, wrap front and floppy sleeves. I’ve thought to myself: This must be a difficult shirt to wear.
When it arrived at my house, I thought, “oh it’s that shirt.”
And when the teenager put it on, I saw that she pulled it off beautifully. In my opinion, she looks way better than the model on the web site.
Now onto the cerebral palsy update…
It’s been two years since I started this journey to learn what cerebral palsy actually is, how my body works, and what I can expect as I age. I had no real medical treatment from age five to age 20, which means this is all very new to me. And fascinating.
And it’s been a month since Stitch Fix changed their metric measurement system in our warehouse and graciously implemented my workplace accommodations. Keep in mind that until five years ago I did not consider myself disabled and I worked really hard to do and appear as typically-abled as possible. When I started with Stitch Fix, I mentioned my disability in my interview and it is because of the culture at Stitch Fix that I had the resources and the space to explore my physical condition.
Stitch Fix is in the news right now for some changes, including closing the Utah “hizzy” and asking the CEO to step down. The founder has resumed the role of CEO for now. So, this post is about me and my journey, but I also wanted to point out that it wouldn’t be possible with the support of my colleagues at Stitch Fix.
Last week was rocky. I did a shift on the men’s side of the warehouse, then returned to my home department on the women’s side to find that the support on the women’s side hadn’t completely worked out the kinks. I just repeated to myself that we were all adjusting, and this was a big change that impacted more than just me, and I jotted down the inconsistencies I noticed and pointed them out verbally but not in writing to ask questions about how my accommodations would work and how they effect operations in our department.
Because one incident of an accommodation not being met is a coincidence, multiple is a trend. And none of my concerns became a trend. But I did experience a fall last week, which undid my most recent chiropractic adjustment. Stress may have played a role in that fall.
The great news is that yesterday went without a hitch and I even got a chance to talk to more of my peers, hopefully reducing any tension that may have been introduced by my accommodations changing how the department operates. My numbers have steadily remained where they should be, and on Friday I even hit 105%.
Bad news is… I felt so good yesterday and was working hard and hitting numbers… and I did not take my Baclofen. I don’t normally take it on weekends, and I honestly don’t recall if I took it yesterday morning. I know I did not take it with lunch like I normally do.
Then, being the person I am, I went to the gym and completed my regular weight training which, on Mondays, focuses on upper body.
I came home, showered, had dinner, and by the time I did some other household chores, I dropped into bed a little later than usual. I woke up slightly before midnight with my legs very tight and my shoulder throbbing. It took about two hours to go back to sleep. At four, when my alarm went off, I got up and fed the cats and visited the bathroom. I stretched and changed the toilet paper roll.
I felt much better, but did I feel good enough to go to work? My brain said, “sure.” My body replied, “well, a hard day’s work might stress your already achy body more. And that would perpetuate the cycle.” My brain added, “And you’ve had somewhere between four and five hours sleep. Is it really wise to go to work sleep-deprived? You’re a fall risk on a good day.”
I reset my alarm for five a.m. It never went off because I laid in bed the whole time pondering what to do.
I hate “calling out sick.”
And then, after looking at my PTO bank, my brain said, “this is why you have an intermittent leave. This is a disability-related absence.” But of course, being me, I had to debate whether or not to go in late. I didn’t know when I would wake up if I went back to sleep.
So, I emailed my supervisors and “called out.”
I got out of bed at seven feeling even better than I did at four, though my shoulder still hurt and my healed mallet finger was very stiff and uncomfortable. But now at least I had had seven hours sleep.
I realized when taking my morning medication that I had not taken my Baclofen regularly. This may have proven that it does make a difference, a difference I might not notice until it exits my system. And I also recognize that I very much need to be sure to use both my left and my right sides when I retrieve and empty the fixes that come to my station.
You know those workplace counters that say things like “X days since our last injury”?
I keep one of those in my head.
My last fall was November 3, 2022. The post-cortisone face plant. That was my last fall, until yesterday. Update counter. It had been two months since our last fall. The stumbles have been happening for about a week. I’ve noticed that’s how they “start.” I start to trip more. But I stay on my feet and I credit my workouts and my improved mobility and balance.
And then I fall.
Maybe the workouts, the chiropractor, and healthy eating do nothing to improve my odds. Maybe I would be a complete disaster without them. I don’t know. I’ve been taking my new medicine, even taking my vitamins (and I got battery-operated toothbrushes, testing the idea of getting a real electric toothbrush).
Yesterday, after a poor night’s sleep and a hard, stressful day at work (those details are recorded in an email to myself at work that I will not send unless the person who did not follow my accommodations says anything to anybody about me alerting my supervisor to her behavior), I came out of my garage, tripped over the stepping stone on the walk and landed after a corkscrew roll in the mud and concrete.
Watch the opening sequence of Netflix’s Special with Ryan O’Connell (season one, episode one) and you will get the idea.
I’m 47-years-old. I don’t like being face down on the concrete with my body in mud. And yes, my first thought was, “Damn, my sweatshirt is dirty now.”
I’m covered in minor scrapes. My hands. My right elbow (which still hasn’t fully recovered from the fall in November). My shoulder (though I can’t see to tell). My right hip. One of my left knee. Two on my right.
It shakes my spirit.
I also stepped on the scale for the first time since before Christmas. I had lost five pounds. I’ve gained those back plus two more. I keep thinking if I can get my weight down, my body might struggle less.
But then emotional eating sets in.
And so I ordered Wing Zone. Boneless wings and a BIG order of fries.
I have minimal patience for people who get stuck, accept it, and then complain about it without striving for change. But don’t worry– this isn’t a post about other people, it’s a post about me. Because the flip side of those who prefer “victim” status and inaction is when you do things and it’s not enough.
I have a funny conversation with my amazing chiropractor every time I see her. Whether I’m feeling good or bad, there is always so much chaos in my life that I have trouble labeling what helped or hurt the most. That’s probably one of my character flaws. If there is chaos, I dive right in. I say yes to help before fully considering the impact on my own life or those close to me.
Since December 12, my supervisors at my warehouse job have been trying to meet my new workplace accommodations for my cerebral palsy. This move for accommodations, on my part, was not spurred by a change in my physical condition, but my a change in how the company measures employee performance. Since I have been with the company for more than two years, experience has shown that I cannot meet the new standard. It took me about a year to consistently hit the previous measure.
My neurologist, who is also a physiatrist, and I adore her, literally wrote, “limit bending/crouching as much as possible to improve endurance.”
And so, during the course of the last several weeks, I have made most of my metrics with the support of the other staff in bringing me work that doesn’t require me pulling it out of shelves near the floor. We’ve slowly moved me to a work station near the back, so the support staff bringing the work doesn’t need to look for me or drag the work everywhere. We found a work station the right height and that directs the completed work to the left so I don’t have to stress my right hip.
This is after two weeks of a different table every day. Setting up a work station at the end of the day with supplies and my work to start the next day only to be moved somewhere else and given “standard” work in the morning. This is after the stares of my coworkers who are not on my team, as they linger around my work station wanting to figure out why I’m getting special treatment but unwilling to ask questions.
Until one of the nicer people, who still has the attitude of the others who don’t take kindly to us outsiders who originally came from second shift, offhandedly says, “because you have a real disability, right?”
I’ve been working hard in the gym, and set some new PRs on my weights, and since my holiday workouts my hamstrings have been super tight and spasming. The last time I did legs I probably overdid it. But everything was moving so well and I felt so strong so I hope this discomfort is my body trying to build new muscle and new connections with my nervous system, Because that’s my disability– my nervous system doesn’t communicate correctly with my lower body, making it impossible for my brain to tell my muscles to relax.
I don’t know if that’s why my mid-section, as in lower back and hips, has so much discomfort and burning pain, and why my legs ache. That workout was on Saturday morning and it’s Wednesday now. Maybe I’m being punished for binging Fleischman is in Trouble on Hulu for New Years or maybe I’m inflamed because I’ve been living on Christmas cookies and cake.
Who knows? But yesterday was hard and I couldn’t reach my feet or the floor and today I’m having more trouble bending. I see the chiropractor after work, so maybe she’ll have answers. I also forgot to wrap my toe yesterday. That meant that in addition to basic mobility issues it felt like someone had a knife in my toe all day.
But I hit my numbers, even did two extra, and set up my table with about 90 minutes of easy work and new rolls of supplies. And then I received work that I was being labor-shared today. And that has me upset and anxious. I’m folding clothes, just like I normally do, but today I’m supposed to do men’s clothes instead of women’s.
Last time I worked in men’s, it was awful. The clothes are bigger than I am and they don’t fit in the boxes, because the boxes are the same size of the women’s boxes but men have bigger bodies and much bigger feet. Plus, will they honor my accommodations? Will they put me on the left?
It took three weeks to get things comfortable for me in my own department. And my biggest fear is, when I return to my department, I’ll have to start all over with them.
Meanwhile, in the good news camp, The Teenager and I visited some friends last night so she could learn how to change her own headlight bulbs in her car and then she took me out for food. She might not believe me when I say it, but I really do love these small moments with her.
In other thoughts, when I get through my current financial straits (I have $3.92 in my checkbook and a $700 medical bill, the garbage bill is rumored to have gone up 200% and I’m still paying off my new ceiling and new computer), I really want an Apple Watch. I wonder if it could do a better job tracking my mobility and my activity. I’m really curious what all that clothes-folding counts as.
I am determined this year to explore new Christmas traditions, so when my Jewish neighbor invited me to deliver Christmas cookies to her deceased family members in the cemetery I said sure. And even though it’s 9 degrees outside (yes, that’s Farenheit), I had a great time.
The neighbor in question is “Little Dog’s Mom,” who made a reservation for my dear Sobaka to visit in April. This is exciting! We always love to have the Morkie (maltese-yorkie) come to spend the weekend. She’s such a fun little dog. And total side note, speaking of dogs, I have been scheduled for my Canine Therapeutic Evaluation with Susquehanna Service Dogs on January 25.
This means The Teenager and I, because you must bring at least one support person, are heading to Harrisburg Mall to work with a service dog. It’s a test to see if the dog helps me or provides a challenge. And also gauges how I will interact with a service dog in public.
The three of us— Little Dog’s Mom, myself and The Teenager— bundled up and piled into Little Dog’s Mom’s car for the ride to nearby Easton Cemetery.
Parents and SisterAunt and Uncle
Little Dog’s Mom carefully explained each cookie, and lined them up nicely, while explaining that the squirrels and other animals would get a nice treat.
She tried to give everyone their favorites, and having lost my father last Christmas— which to me still qualifies as “just last Christmas”— it touched me to commune with relatives who have left this Earth even if they aren’t mine.
The outing had some levity after that as Little Dog’s Mom told us about a flamingo Christmas sweatshirt she had contemplated buying with her 40% off coupon at CVS.
We stopped to look at it, and The Teenager surprised her by buying it for her with our 40% off coupon. Then Little Dog’s Mom let me use her 40% off coupon to buy one for us.
To thank us, Little Dog’s Mom took us to McDonald’s for diet cokes.
I have faced challenges recently unlike the previous difficult times in my life. I no longer live with my husband. My father passed away a year ago this past Thursday. I don’t hear much from members of my family. The health issues that come from aging with a chronic condition like cerebral palsy, while my prognosis is static, present their own difficulties. My cerebral palsy will never change, or get worse, but the complications from having spastic muscles, scissoring legs, years of toe walking and leg bones that don’t sit where leg bones were designed to sit are very real.
This week, for many reasons ranging from family stress to communication difficulties and new and old volunteer commitments, pressed my mental health beyond the point I like to go. I watched a lot of TV.
I also spent much time cuddled into my new Stitch Fix zipper hoodie. But I did peel it off to wash it today, and put it right back on my body.
And my curls came out nicely today. Thank you, curls.
Television viewing
I caught up on The Good Doctor (and while YES! Audrey Lim decided to accept her disability rather than go through a risky surgery, at the midseason episode now the team decides she has recovered some movement on her own and a new less risky surgical plan might restore her mobility. Even her new boyfriend in a wheelchair says she has to do it, and he proposes, to prove to her he’s there whether she can walk or not. The episode ends with her in surgery. If the surgery succeeds, I will be pissed. Will they then feature an interabled relationship? Why must she walk again? Why can’t we have an able-bodied fancy surgeon become a wheelchair user and excel at it? It’s ridiculous that mainstream television starts to show an able-bodied person accepting a serious disability and then again reverts to the idea that she must walk again. And disabled people know, no one complains louder, no one takes adjusting harder than an able-bodied person suddenly rendered less able.)
Wow. I didn’t expect that tangent.
With that caught up, I tried Little Women: LA and a few episodes of Little Women: Atlanta. I learned some of the varieties of dwarfism, and was forced to thing about discrimination in hiring, but as with most reality series, the focus seemed to be on drama. The Atlanta spin-off really heightened the drama. Within two episodes, we had a pregnancy with an indifferent father and jealousy and cat-fights in the clubs. Because if you use Little Women: Atlanta as a source (which I would not) apparently stripping is a great way to make a living and still collect your disability checks. I was not born with that kind of disability.
I heard a podcast featuring Randall Park and thought I would try his Netflix series, Blockbuster. That was also a disappointment. The humor fell flat for me, and I struggled with the concept. There is one Blockbuster video store still in existence, in Bend, Oregon, and USA Today wrote an article comparing the fictional last Blockbuster and the real one and honestly that just confused me more.
So, I went for Hoarders season one on Hulu. It’s amazing after having binge-watched later seasons during previous times of emotional crisis to see how unpolished the initial season is. You can see the crew determining what works and what doesn’t. The cinematography is more dramatic, but the professional only have two days to clean massive hoards and they slowly tack on more time.
At this point, I renewed my Motor Trend streaming service and will stick with Mike Brewer and Marc “Elvis” Priestley on Wheeler Dealers.
Rocking New Boots
I finally got to wear my new Marc Fisher over-the-knee boots! The Teenager worried about me leaving the house in higher-than-usual heels. They were so much fun to wear and didn’t feel any more uncomfortable than other boots.
I left my house around noon. I had promised to bring Maryann some books as her tavern is featured on the cover of The Death of Big Butch. I delivered her copies, visited for a moment (but not as long as I thought I would because the traffic and road closures in downtown Easton made it impossible to drive the three miles to her. It took FORTY minutes.), and heading for my lunch with Bill Prystauk, the author of the Kink Noir series and a long-time writing friend.
We had a lovely meal at Gap Diner in Wind Gap, Pa., a midpoint we select between his location in Stroudsburg and mine in Easton. He had a spinach and feta omelet where the rye toast had this perfect dark line around the edge but the bread remained flexible. The potatoes were also picture perfect. They had this crisp outside and looked soft on the other side. I had pepperpot soup and the buffalo chicken Caesar salad. I was a tiny tiny bit disappointed that the chicken was chicken fingers cut into bite sized pieces but honestly, the beauty of the shredded romaine and its luscious green color won me over.
It was a good eating day as the Teenager brought home fresh bagels from the bagel deli and I had had a salt bagel with piles of kale and spinach and hummus for breakfast, an iced coffee for an afternoon treat, and a dinner of heaps of vegetables (kale, squash, potatoes, sweet potatoes, cauliflower and zucchini), a vegan chicken tender and a token amount of pork.
Much better than yesterday when I ate a double steakhouse cheeseburger from DQ, cheese curds, pretzel sticks with queso and a blizzard (snickers/brownie) so large in came in a medium soda cup.
Visiting her Ladyship Maxine
From Wind Gap, I traveled out to Point Phillip through some scenic roads to visit photographer Joan and deliver her copies of Big Butch, which apparently I would trade for celery and pears. Joan and I are often trading edibles.
I met the younger stepson, the grandson, and even got to pet the adorable Maxine, a striking cat of great renown. As soon as she heard that I was the one who alerted her people to the existence of Tiki Cat cat food with shrimp, she sniffed and rubbed against my boots providing me with the ultimate blessing.
And Joan gave The Teenager, myself and her own self a Yule present: a game called Ransom Notes, basically Cards against Humanity but with magnetic word stickers. The Teenager cannot wait to play.
All in all, I think I put 50 miles on the car.
I received a phone call from a journalist trying to convince his editor to write a story on Big Butch. And I participated in a speaker phone call with The Teenager and her grandmother (my mother-in-law). She revealed that she would be having fried chicken and potato salad among the offerings on Christmas Eve so I may now have a social obligation that night. I love my mother-in-law’s fried chicken and potato salad.
I ran out of juice yesterday. Fatigue, lack of good sleep, adrenaline from publishing Larry Sceurman’s The Death of Big Butch (see a post by Larry on the Parisian Phoenix website today, click here), anxiousness regarding doctors’ appointments and my service dog application, the toll of my various foot and leg issues, and the excitement of my traveling companion, M, coming to visit all caught up with me.
Let’s start with a joke. Because it’s Monday. And we can all use a laugh. And this is clever.
What’s the worst thing you can read in Braille?
Emma Tracey, the Blind Co-Host of the BBC All Access Podcast
Before work, I went through my collection of protective toe devices. The little foam doo-dad the podiatrist gave me is looking rather worn and tatty, especially since or perhaps despite the fact that I’ve been hand-washing it.
The larger gel separators I wore over the weekend, held in place with the bunion wrap, seemed too big and the pressure hurt my toe more.
So, today I tried out the gel-line toe protector sleeve, which, according to the instructions, they make long enough for your finger. Doesn’t that make it a digit sleeve?
As instructed on the package, I held it up to my toe and then used scissors to trim it to the right size. And I wondered if the piece that remained after the cut might be large enough to use like a toe right to cover the damaged flesh and the portion of toe that rubs. This wouldn’t actually separate the toes, but it might eliminate the friction.
I decided to try it.
It fit! “Waste not, want not,” after all.
I wore my obnoxious patterned Vans sneakers (that came in one of The Teenager’s fixes. She proclaimed them hideous but I fell in love with them.). Ready for work.
We won’t talk about the fact that I struggled hard to get my socks on this morning. Sometimes my lack of mobility makes be feel like a T-Rex when I need to do stuff with my feet.
Today I handed my doctor-filled-out, official form for workplace accommodations to my supervisor.** Now my supervisor has been working in the other side of the warehouse. He will be there relatively long-term. This had me nervous, and I kept checking my work email seeking some sort of acknowledgement. None came.
Until first break, I clocked in at 100% of the Daily Minimum Expectation. But I fell behind after break. The official numbers don’t account for our 10-minute paid breaks. By official numbers, I was probably 102% or more before first break. By my numbers, I was around 98-99%. My numbers account for the breaks.
Around the halfway point of my shift, I had fallen to 97%. And then I got a phone call and Siri read me the voicemail. My examiner had called, stating that she would be denying my intermittent leave request if she did not get my form from my doctor by 5 p.m. Apparently, she’s in Arizona. Her 5 p.m. and my 5 p.m. are two different things.
I had filed for intermittent FMLA leave November 9, because the shift change I was forced to make in late October has made scheduling my doctor’s appointments nearly impossible. The company that administers the claims for my employer sent a form to my doctor, but it took nearly a week for me to find out which doctor, because I had given them the name of my primary care physician and my specialist.
The neurologist received the form November 12. (I know because the neurology office sent me a receipt and the parent hospital sent me a bill, which I had to scan the receipt and mail to the hospital over the weekend.)
My specialist couldn’t start the form until I paid the fee. For some reason, the office did not tell approach me about this until November 22. They called me while I was at work and I had to call them back once I had my wallet and was off the warehouse.
When I called them back, of course I was placed on a call-back list. I received the follow-up phone call mid-shift the next day (November 23), but luckily I had my HSA credit card in my pocket and I answered the call. I paid the $30 with funds from my HSA.
Now, the paperwork had a due date of December 9. But remember, November has a little holiday called Thanksgiving. Thanksgiving occurred on November 24 this year. My physiatry/neurology specialist called me around 1 p.m. Monday November 28. We had experienced computer problems in the warehouse and I had come home early. She spoke with me while she filled out the form and promised her nurse would fax the forms by the end of the week.
I had an appointment with my specialist December 9, so when I hadn’t heard from the examiner by the end of my work day December 8, I emailed her. I wanted to confirm she had the paperwork. And I wanted to file an absence for December 9, as I had two doctors’ appointments that day. She did not response until today, December 12, because she had been out of the office December 9.
Because she had been out of the office, she gave me the extra time to file the forms. But that extra time was four hours. I can’t even reach my specialist within four hours.
I emailed both the examiner and the neurology office, but heard from neither by the time the neurology office closed today. I guess this means my claim for a leave will be denied. I hope I can open a new one and either resubmit the prior form or ask the specialist to update the date on the form, or worst case contact my primary care physician and have him do a form and also attach the specialist form. “Luckily,” I’m still having issues with my toe which means I will probably see plenty of doctors.
Sigh. I mention this because this is what I’m obsessing over while I’m struggling to get my numbers at 100%. And I’m mentioning this because I am capable, and I can often find work-arounds other people don’t think of. But what if I were a disabled person that relied on caretakers and support staff? What if I had to rely on more people to coordinate these things? What if I had communication difficulties? It is exhausting to advocate for oneself.
Fast forward to lunch. I want to say my stats were at 96% or so. Our employer offered full day Voluntary Time Off for tomorrow and at this point I was stressed out enough to apply for it. I don’t have the money, but I also don’t feel like I have the stamina.
After lunch, my stats kept falling. They had reached 94% when someone “in charge” approached me to ask what my accommodations were because one of my peers (my sassy friend) had mentioned it to her. My supervisor had mentioned my accommodations to this person but she misinterpreted his concern to be about something else, until my sassy friend inquired about me. I think my sassy friend has become our elected leader.
After our final break, one of my teammates (who always supported me when we were on our own shift) brought me the easier work for me to do. Basically, he brought me the work already in boxes so I didn’t have to retrieve the items in the cart. I finished the day at 98.4% of DME which is amazing when you consider that about 75 minutes earlier I had been on track to complete 94%.
In addition to all of this, I never did hear back from the neurologist nor the examiner. The neurologist’s office is closed now. And when Arizona time reaches 5 p.m., my claim for intermittent leave will be denied.
And remember my toe? I had substantially less toe pain today than over the weekend, and no general foot pain.\
And I got the VTO for tomorrow.
Now the answer to our joke…
What’s the worst thing you can read in Braille? Don’t Touch!
Emma Tracey, the Blind Host of the BBC All Access Podcast
And yes, I called Nan and asked her if she had ever heard this joke. When she heard it, she nearly bust a gut.
** If you’re new here, I have diplegic cerebral palsy and have worked in a warehouse folding clothes for two years. Today they changed the system of how they measure our efficiency. We used to get our weekly numbers averaged into our performance figure but starting today, they evaluate the figure daily. Without official accommodations, I won’t meet the daily figure. My typical performance is pretty similar to last week, when I did 101%, 101%, 101%, 94%, and 100%. When you average that, my performance is 99.4%. But I miss the mark usually one day a week. Now they only give us two days to miss in a month.
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.
Angel Ackerman 