If you’re a regular in my portion of the universe, you probably know I’m struggling with some issues that might be described as middle-age or might be complications of a life with cerebral palsy.
I have been talking about this journey more in recent days but certainly rather frequently in the last six months or so.
Today, I finished talking to the last member of my medical team about my plan for my health and my future. That person was my psychologist. And it sounds like he approved of my plan.
So having spoken with everyone— checking their professional opinions against my fear of an emotional response to my disability— I sent an email to my physician outlining my questions and my plan.
I had an email back within the hour from my physician saying I could set up physical therapy and that I should come into the office for a follow up this Thursday.
My doctor’s office had no preference or guidance regarding where to go for physical therapy so I called the generic phone line. They assured me that I could go wherever I wanted.
I asked for a nearby hospital as that is where my blind friend Nan has physical therapy and I hoped maybe we could car pool. Don’t worry— I wouldn’t let Nan drive.
But when they transferred me the person that answered asked me why I needed physical therapy. I said that the x-ray showed retrolisthesis and arthritis my spine that could be a complication from my cerebral palsy.
As soon as she heard “cerebral palsy,” she transferred me to the neurological physical therapy office. But when they looked up my chart, it said “back pain.” And they don’t do that.
By the very very cheery person on the phone and I had a chat— and I asked her— are we treating my back or the cerebral palsy that probably causes the back issues. We both agreed it’s a good question.
She put me on hold twice to confer with the actual physical therapists and they decided to keep me.
I am in my 40s, and struggling with the effects of a life of always walking crooked thanks to cerebral palsy, a disability I have but, until recently, have known nothing about.
And issues in my spine, while not serious, are affecting my mobility and causing me pain.
But today— in part because we only worked until 7:30 pm at the Stitch Fix Bizzy Hizzy— I woke up well rested, only minimally stiff and only minimally hurting. At 8 am no less.
Our charming mutt F. Bean Barker refused to go to bed in the teenager’s room last night because one of our fosters, a former community cat named Georgie, intimidated her. Bean expected me to let her sleep in my room and when I said no she retreated to her crate in the living room. So I let her spend the night. I have spent a lot of time with this dog in the last 24 hours.
I tied a rope around her tire toy gifted to her by my trainer, Dan, at Apex Training and now it’s the best toy ever. See video here.
I was the first one out of bed which meant a swarm of hungry cats outside my door, and I couldn’t keep them all at bay. It was easier to let them in. But our foster Mars totally knows how to knock over the birdcage. Which he did. While I was on the phone with my blind friend Nan and consuming my first cup of coffee.
Nan recently started physical therapy for an issue in her shoulder causing pain and finger numbness. The physical therapist had never worked with a blind client before and was a quick study. He even discovered that some of Nan’s issue might be mobility issues in her neck— because when you’re blind you don’t have many reasons to turn your head or look up and down.
Finally, things settle down and while the parakeet is out he is safe. The teenager and I head to Apex where she gets that barbell and deadlifts 135 lbs. I still felt good at that point.
And then the matriarch from laFamilia Velez stopped by and brought me chili which I had for a late breakfast and we talked about marketing for my Fashion and Fiends books. And my goals for Parisian Phoenix in general.
She left, and I finished proofing Darrell Parry’s soon-to-be released poetry book. I placed a few more essays in the nonfiction identity anthology.
And the poor teenager has had a hectic and exhausting couple days— so I cooked.
She has options for dinner when she returns from the diner. She’s given notice at the diner as she has accepted employment with a local pet care company.
First I made sausage and peppers to put over spaghetti.
Then I also made the Purple Carrot Peanut Tofu Stir Fry which I jazzed up with some edamame and sesame sticks.
Mostly I am just sitting around marveling at how pain free I feel. I miss that.
Learning about your own body, exploring treatment options and trying to survive while doing it is exhausting.
I shared my plan to advocate for myself with my life coach from Ginger. And we also discussed some of my fears of where this could go.
And today I asked Dr. Nicole Jensen of Back in Line Wellness Center her thoughts.
She was kind enough to get out her spine and explain things to me. And she said I moved beautifully today, which could be a sign that the short shifts I’ve had this week are taking stress off my body.
She had never seen retrolisthesis in a group like this — and reported that the pedicles appearing in tact was great news. But basically that slight shift in the discs from the retrolisthesis would put pressure on the nerves.
And that the disc space narrowing was arthritis.
So to continue my work with my trainer— and she is impressed by his attentiveness and ability to adjust workouts to medical needs, pursue physical therapy, and try an inversion table. It might stretch out those irregular curves of the lumbar spine. Core exercises will be super important, and I wonder if my commitment to my core throughout my adult life has contributed to this good report.
Dr. Jensen asked for business cards from Dan at Apex Training. Because based on what she’s heard from me she would recommend him to her clients.
I’m noting these discussions and plan to email my doctor Monday.
This post will be a mishmash of the last 48 hours and will discuss some of the frustration of dealing with my cerebral palsy, life as Midnight Society comesto a close at the Stitch Fix Bizzy Hizzy, a brief mention of the new Wawa dinners and a thank you to the amazing teenager for her thoughtfulness in hiring a cleaner to help get the house under control.
The supply chain issues still create work shortages at the Bizzy Hizzy warehouse so as Midnight Society prepares for it’s change to day shift in December, some of us are only working about 20-25 hours a week.
The last few nights at work have been good (and last night was my one year anniversary)— I performed at 98% last night in QC folding those Stitch Fix parcels and tonight I think I surpassed 100%. But bending is still troublesome and what I believe are my quads burn the entire time I am standing.
So today was an emotional day. My sweet, amazing teenager hired a cleaner to deep clean the house. The cleaner did the upstairs yesterday and the downstairs today.
The house looks incredible.
And it was fun to interact with someone who wanted to help, loved our crazy animals and commented about how awesome my kid is.
I noticed early today that my X-rays had arrived in my St. Luke’s Hospital portal. I read them and they said my hips were fine, and the only findings on them (other than my new IUD and tampon) mentioned items in my spine.
But when the doctor’s office called at 2 p.m., he just wanted to ship me off to physical therapy. And I’m not sure that’s the whole answer. I work out. I have had physical therapy for my lumbar region already.
Two important questions physical therapy can’t answer:
1. How does this impact my ability to keep doing my job?
When I mentioned this to the person on the phone from my doctor’s office, she asked me what I wanted, mentioning that they could sign me out of work. I said no, I am looking for a more permanent answer than that.
2. How does my general crookedness factor in? The doctor’s office made this sound like no big deal, but I hurt. More often than not. So does my imperfect gait add more stress to this problem?
I’m going to talk to my trainer tomorrow, and my chiropractor Friday. I think there are more questions that need to be asked and I’m not sure what they are.
And in final ridiculous news… I tried a Wawa burger.
Please excuse any typos and attribute them to the beer flight and draft I consumed in celebration of my mother’s birthday at Richmond Farm & Brewery, the almost six month old enterprise of Milissa and Eric Smith, classmates of mine from Bangor Area Senior High School in the grunge era.
I am experiencing a tad bit of melancholy as our bestest FURR foster kittens — Em(inem) and (Slim) Shady, moved into a habitat at Petsmart on Rte 248. If all goes well, someone will fall in love with them and we will never see them again.
So after much organizing of the up-and-coming nonfiction identity-themed anthology for Parisian Phoenix Publishing, Iwas very much anticipating our visit to the brewery.
This was their first weekend indoors. The bar and the tap system are not even installed yet, but the decor and ambiance are perfect. You don’t even notice it’s unfinished.
And frankly, with so much economic uncertainty in the world right now, it’s nice to see business owners moving through the stumbling blocks but still operating.
You can’t recoup time and money invested waiting for everything to magically fall into place.
The renovation of this old barn— well, for this Slate Belt girl it didn’t feel “barny” enough for me. But it all seriousness, it was roomy and gorgeous, rustic but classy. Homey. Warm.
At this time, you order food at one register and beverages at the next. Simple. Expedient.
Milissa greeted us. I had warned her we were coming. I introduced my family and she was kind enough to ask me about my book and congratulate me on it. And she bought a copy for her daughter.
It was heartening to hear that many Bangor classmates are surprising Milissa and Eric by stopping by. Milissa is trying to collect photos of everyone. I tried to impress upon the teenager, since she is a high school senior with a class the size of mine back in the day, that someday she may be surprising her classmates.
In the end, I think Richmond Farm & Brewery did all the necessary impressing.
The food— a small, carefully curated menu— exceeded my expectations. And even though the choices were minimal, I still had trouble deciding and wanted to eat it all.
And I purchased a maple vanilla Porter draft for myself and a flight of six beers for mom and I to try.
Immediately I noticed that the maple vanilla Porter had overwhelming notes of blackstrap molasses. A very different taste than I am accustomed to in my porters, but one I grew to like as I enjoyed my burger with its bacon bourbon jam.
The Mosaic Masterpiece, aptly named, as it was my favorite. I did not read any of the descriptions before trying, but I warned the staff I wasn’t a fan of IPAs and gravitated to the porters and stouts. Many of their beers were not available, but the Mosaic IPA was my top beer of the night and very fruity in the finish.
The Diehly, surprisingly basic but easy to drink. The description refers to it as vibrant and full of unique hops.
The Richmond Pale Ale, my notes referred to it as light on the palate.
The Maple Vanilla Porter, which I arrogantly thought would be my favorite, had strong notes of blackstrap molasses.
Smitty’s Blonde Ale, I found mild but pleasant. Definitely a summery beer.
Extra Pale Zonkey Ale, the web site describes this one as the easiest beer to drink ever. And it is so simple and smooth, it’s very refreshing.
I was disappointed not to try the stranger brews— the shredded wheat ale, the cranberry ale or the gingerbread brown ale brewed with spiced gum drops. Or their cow tail brown ale with chocolate, caramel & coffee notes. Or their more traditional Potbelly Porter.
But, I am so so glad I was forced to try beers I wouldn’t normally pick. I enjoyed all of them, and most of them I wouldn’t have chosen under normal circumstances.
Just another example of how being pushed outside of your comfort zone is good.
This is a post about Wednesday. It is now Friday, but I made these notes after my Wednesday night when I experienced a sense of piece and hope— I was in minimal pain and did 94% of my metrics in my home department at work, folding clothes.
The air was frigid with ice on the cars, but I was wearing the teenager’s letterman jacket (and I made the wise crack to my favorite security guard that it was not my jacket, she had left it in the car, and I know it must be really hard to believe that I was not in marching band.)
I knew the end of this week would be draining, even before they announced the elimination of our shift at the Stitch Fix warehouse as they transition from two shifts a day, five days a week to operations seven days a week. (As second shift workers, we get first choice of the shifts available, so the company is trying to accommodate preferences, but every shift starts before 7 a.m. so that sounds like torture.)
So Wednesday was dentist day.
I thought the teenager and I had appointments at 9:40, which meant retrieving the child from school at 9 a.m.
She made me an offer I could not refuse. If she peeled and quartered the apples our friend Photographer Joan of Plastiqueville brought so that I could make apple butter as I promised, could she just skip first period?
I said sure. That meant I could sleep until 8 a.m.
I think she later regretted her choice as she has still not finished.
Hopefully today I can use my voluntary time off to get this into jars.
And in true Angel fashion, at 8:45 a.m., I discovered our appointment is at 10:40, not 9:40.
The hygienist and dentist gave me a disappointed talking to about my teeth— apparently my middle of the night tooth brushing has been half-assed.
But no major issues.
So the day prior my physician has ordered x-rays of my spine, si joints and hips.
I thought with the shift change, the information in those scans was more important than ever. And there is a radiology office in the urgent care across the street from my dentist. I asked the teenager if we should stop.
My doctors office had recommended one of these smaller urgent cares as they might be less busy than the hospital or the central outpatient radiology office by the warehouse.
My gut said go there.
I didn’t listen.
Instead I went to the urgent care that my PCP’s office always recommends because it is close to my home and operated by the hospital network he works for. (The Lehigh Valley is in the middle of a hospital war— both St. Luke’s and Lehigh Valley Hospital buying up and building offices everywhere.)
(I watched Lehigh Valley build a hospital near the warehouse, one I believe they have been trying to build for a decade. It opened in July. When I drive by at midnight, it looks deserted.)
Anyway. We go to the urgent care by all the good food. The teenager has a book in the car. It is 11:40 and her next class starts at 12:30. I know the probability is we’re not going to make it, but I need these x-rays and her presence will make sure I don’t procrastinate.
I have been to this urgent care once before— my si joint had locked up and was seizing and neither my chiropractor nor my doctor could see me and I couldn’t even think through the pain.
The staff at this urgent care was lovely, but I waited more than 90 minutes, got told to take a hot bath in Epsom salts, ingest some ibuprofen and the best thing for me would be a massage. And I got a $200 out-of-pocket bill.
I picked this urgent care because the location is convenient and it’s in a higher middle class suburban neighborhood. But they are always understaffed and seems to be frequented by college students with no common sense and a certain element that I hate to classify as unsavory, but let’s just leave it as there was one poor man who needed to go to the ER, even I could see that, but he didn’t want to go.
The doctor was backlogged by 90 minutes so this seems like the normal wait time. I tried to slip out of the office politely but the office person (who was honestly coordinating a three-ring circus and remaining an angel despite it) wouldn’t have it. You see radiology is a different office. I was next in line.
The tech in the radiology room was a delight. I got all the x-rays I needed.
At work, a lot of people were congregating to discuss the upcoming changes. But at this point, I don’t understand the point of wasting time like that especially since things are still getting ironed out.
The Mirena seeks to be helping with my menstrual issues as cramps where they belong and the bleeding is significantly less.
I saw my primary care physician today. It was a scheduled follow up to some anemia-related issues I had over the summer, but, after reminding me what the visit was originally scheduled for, my doctor (knowing me?) added, “so are there any new problems?”
To which I replied, “I always have new problems.”
We went through my bloodwork— my iron has improved significantly and apparently I haven’t been taking enough vitamin D. The improvement has been good, and brought me into the normal range, but not enough to prepare me for the dark winter months.
After a discussion of my plan for my weight, he assessed my ailing hips. The range of motion from every angle is limited. And my back is definitely tight.
I have five scripts for x-rays, and am sitting in an urgent care waiting for them. I just got done at the dentist, and the dentist mentioned that my dental hygiene has been half-assed and took its toll.
The teenager is in the car reading a novel for her English class and I can’t help but stress about the decisions I have ahead of me— especially as pertains to my body, my routines and my job.
As a writer and now a publisher, I often refer to my job at the Stitch Fix Bizzy Hizzy as part of the second shift (Midnight Society) as the “day job.”
And now, next month, the day job is really becoming a day job.
The head of our warehouse announced last night at 5 p.m. that second shift would be eliminated hopefully by December 5.
Second shift was a Covid-inspired experiment in the Stitch Fix universe and not every warehouse had one. I’m not going to say we were the first or the only, but we might have been. I joined the shift in November and it started when the warehouse reopened after the initial shut down.
We just earned a $1 shift differential a couple months ago.
The concept worked really well— a smaller, cross-trained team that could be moved to different needs in the warehouse to support day shift or function autonomously.
If day shift broke it, we fixed it. And I believe, and this is totally my opinion, that our flexibility allowed us to understand the entire operation and fostered a spirit of teamwork that achieved more than hitting individual metrics.
There is a distinct cultural difference between the two shifts, especially since we all know each other and move around so much.
So, here comes the interesting part, they are eliminating the second shift in favor of moving the warehouse to seven-days-a-week operations, just like our literal neighbors Chewy and Amazon. As the business grows in what the now call “Freestyle,” or people directly ordering what they want from custom-curated offerings based on the results of the algorithm (eliminating the stylist), Stitch Fix wants to be able to ship out orders so quickly they arrive in a day or two.
The Lehigh Valley is conveniently located within one to two shipping days of most of the country. I was aware of this because of my work with anti-human trafficking nonprofit ASPIRE to Autonomy.
I commend the company for adapting to the needs and desires of the marketplace especially since supply chain issues, the pandemic at large and internet retail remains a “Wild Wild West” landscape.
But this… is hard to digest.
Most of us have our reasons for working second shift and this complicates our lives. Supervisors were passing out information on child care resources and they told us that we would be emailed paperwork to rank our preferences for what day shift we want to join.
During the coming days, our shift supervisors will be pulling us aside to discuss our individual transitions. And we were told we would have first pick of the new shifts. And it almost sounded like preferential treatment in work centers, too.
The choices are:
Traditional day shift: 6 am to 2:30 pm or 6:30 am to 3 pm Monday through Friday
The four tens option: 6:30 am to 5 pm Sunday through Wednesday or Wednesday through Saturday.￼
I am leaning toward option 2, Wednesday through Saturday. Many of my friends have already expressed concern that I can’t physically handle ten hour days. I have done it before during mandatory overtime.
What’s the difference? Once pain and difficulty start, what’s the difference between eight hours and ten? I believe, if I can physically complete the ten hours, the extra day off would actually give my body more rest time. But perhaps I am naive.
If I do the traditional work week, I have to give up my personal training sessions, which would also have a negative impact on my health. I also would have five days where the animals in my house are left unattended for long stretches. The weekend shift lowers this to three days.
If I work Sunday through Wednesday, I can still hit the gym Tuesday and Saturday. And I would be available for FURR related events on Saturday. I can also keep a regular Friday chiropractor appointment.
My medical care will get more complicated— because even though Stitch Fix would still allow me to go, I will have to find minimally disruptive appointments. For example, I have a doctor appointment every morning this week and I need a pile of x-rays.
I’m going to have to go to bed 4-5 hours earlier than I’m used to, and get up at 5 a.m. That sounds brutal.
And I’m no longer going to be able to drive the teenager to work.
So even though a simple move, it’s really complicated. And a hard choice.
As I write this, I am mourning the loss of having finished The Night Shift on Netflix. I am imbibing some generic strawberry lemonade energy drinks strongly laced with too much gin. I am craving potato chips, cuddling my cat Fog, and nursing my injuries from the day.
But perhaps I need to back up…
The photos above summarize my Halloween.
At 11 a.m., we had an appointment for Danu and her babies from the Celtic Pride— Aîné, Baile and Brigid and our newest foster, Georgie, to meet our foster cat godmother for shots, flea treatment, dewormer and microchip and OH MY GOODNESS was Georgie dramatic.
Then the teenager had a commitment to walk in the local Halloween parade and she asked me yesterday to walk with her as she paraded in costume. I will do anything my daughter asks.
And half way through the parade, I fell flat on my face to the collective gasp of the crowd. I rise, keep walking, hip and knee in pain. But I keep going.
I finished the parade. Outside the teenager’s high school. Her father and herself know that the fact that I finished the parade did not mean I was okay as I have been known to do things like walk a Chinese buffet with a broken ankle.
My knee is swollen. I tripped over a mirror late in the day that struck me in the tender parts.
My back hurts.
I am craving potato chips as my body adjusts to the Mirena.
My princess, the male cat I jokingly named Fog, is curled up next to me. He is my baby.
The teenager’s dad came over and they carved pumpkins and I typed some of a manuscript for the identity anthology. We handed out candy and even the dog got to enjoy trick-or-treat.
I ordered Wawa for dinner— the teenager’s favorite ranch Mac and cheese, chicken Caesar salad and pierogie quesadilla and Blizzards from Dairy Queen for dessert.
Tomorrow the teenager is consulting a cleaning woman to take some of the stress off me.