Today was my first Monday day shift at the Stitch Fix Bizzy Hizzy. I worked second shift, then 10-hour shifts and now I have moved to Monday to Friday 6:30 a.m. to 3 p.m. After almost a year of 10-hours, 8-hours feels so short. And it feels like we’re always on break. And transitioning from a 15-minute break to a ten minute is disorienting to say the least.
After work yesterday, I went to the chiropractor, the amazing and dedicated Nicole Jensen of Back in Line Chiropractic and Wellness Center. I feel like she’s learned my body to the extent that it’s personal to her, the challenge of keeping my misconstructed extremities functioning. I think she has this zone she gets into, where she’s plotting a strategy and it’s her against me, well, the physical form of me.
I felt my body start to compensate for my hip falling out of place yesterday. It didn’t hurt. It didn’t even feel wrong, but I noticed elements of my posture changing. A little more protest from the right side, leaning that way more heavily, occasional back pain.
I don’t have the best understanding of mechanics or physics, so my brain is slowly clicking when it comes to considering my femoral anteversion, which means the head of my femurs sit in my hip sockets kinda facing the wrong way making my legs kinda face backwards I guess, makes my bones put pressure on the socket at the wrong angle pushing it out of place? Maybe?
And me, either being a trooper or an idiot, did a 8-hour work shift on a Monday, where I performed at 95%, went to the chiropractor and then visited Andrew, my also amazing and dedicated coach at Apex Training. I think I scowled at him more than usual. The work out was brutal and ended with… what did he call them… offset dumbbell rows? Imagine kneeling on the bench and doing a dumbbell row with a 20 or 25 lb weight while holding the other leg up in the air.
Meanwhile, I reached out to David from The Cerebral Palsy and Fitness Podcast and asked if my discovery and fitness journey would be something of interest for his show, and he said yes. I also updated Andrew Gurza of Disability After Dark Podcast about my upcoming “Sex in the Text” panel at the Easton Book Festival. We had recorded an episode in June, but my parakeet (may he rest in peace, that might be what reminded me of the interview) made so much noise, we hope to rerecord an interview in November.
That’s fine with me, as so much has happened since June: my service dog application, new physical struggles and this “Sex in the Text” program for Easton Book Festival among them. I’m lagging behind on my preparations, which means I’ve been scanning my Fashion and Fiends novels for sex and jotting notes about themes, goals and techniques.
But then, my new computer Midnight came with a free trial of Apple TV, which made it ridiculously easy to subscribe to a free trial of Motor Trend‘s streaming channel. Why on God’s green Earth would I as someone with no understanding of physics or mechanics need Motor Trend? Three words: Top Gear America. It’s the only way to see Top Gear America featuring Dax Shepard and cars.
I don’t think it’s readily apparent from this blog, but I adore cars. If I had any sort of skill with tinkering, I would be more hands-on, but I am useless. But, I can still drive and appreciate cars. And I certainly admire and appreciate Dax Shepard from more than one angle. I just want to watch every available episode (there are two seasons available) and forget about the rest of the universe.
Which right now is tempting… because the episode on the Lamborghini, Bentley and Porsche SUVs had me laughing out loud. I started the hot rod episode but pried myself away for what ended up being a very trouble night of sleep. Bad dreams and body pain, to the point where I was up for an hour from midnight to 1 a.m., debating whether to pull the laptop into bed. I, instead, smeared my back and hips with CBD arthritis cream and drifted away into another uneasy three hours of sleep.
So much to do before the book festival, but the cars… and the Dax… call to me.
Yesterday might summarize recent trends in my life. I know I posted a blog post before I left for my last 10-hour shift at the Stitch Fix Bizzy Hizzy. Monday I start a more traditional Monday through Friday shift. I’ll get home earlier, but I lose a day off. And I’m used to having Thursday and Friday off which is nice for running errands, making appointments with doctors and professionals, and for connecting with people regarding my business, Parisian Phoenix Publishing.
I still had my Friday nights and Saturdays, even if I had to head to bed earlier than most people want to on Saturday night.Many well-meaning friends and everyday people have made comments like “well that will be nice,” “no more long days” and “you’ll have your weekends back.”
But I’ll no longer have that feeling of “getting work over with” and I’m no longer part of a unique cohort. We worked alone in the building on Sundays, and that was peaceful, and for two hours every afternoon, we more or less finished the work the traditional day shift left behind.
So, I arrived at work yesterday morning, basking in the bliss of using my new Ninja DualBrew correctly. (I still have to buy coffee filters, but I love the ease of use, the temperature of the coffee, the different settings for the strength of coffee, AND how I can select just the right amount of coffee for me. The reservoir is cool for me, because it removes one more decision or step to screw up. I have been known to double fill the coffee pot when I forgot I already did it.)
On Sunday, I normally perform between 100 and 105 percent of daily metrics. I may have once hit 108. This Sunday, I hit 97. This annoyed me. It was the first sign that something was off. On Monday, I kept struggling. I didn’t really notice anything physically wrong but I did note that my toes on my right foot were really burning by the end of the day. Andrew, my wonderful coach at Apex Training, had asked if we could move Monday night’s session to Tuesday. I said sure.
I busted my butt for the rest of the day and hit at least 99 percent, but I may have hit 100. That’s when I noticed some residual issues in my body. Just that nagging sense that something was not right. I attributed it to working hard and not having my regular Friday appointment with Nicole Jensen at Back in Line Chiropractic and Wellness Center. She had a class on Friday, so she had moved clients.
Tuesday I could feel my right hip turned wrong. It was a weird feeling, like my leg was facing the wrong way. In reality, it might not work that way but that’s how it felt. And my right hip was very tender to the touch. I still didn’t have any pain, but movement was getting harder. So I tried to stretch my hips during the day, but by the end of the day, I had only hit 90 percent and it had been hard. I asked Andrew if we could move the Tuesday session to Wednesday, worried that this was more of a structural issue than a muscular one and working out could push me from discomfort and mobility issues to actual pain.
And a year ago, I was in pain every day and I don’t want to go back to that. Ever. I was flipping through my journal and last year at this time I was starting every journal entry with a number from the pain scale. That broke my heart to see.
I took a muscle relaxer, stretched some more and went to bed after a nice meal. Wednesday morning I didn’t move any better, but I was no longer stiff. But by the time I got to work, my gut said this hip was really struggling to do its job. And I was about to stand on it for ten hours.
At 6 a.m., I called Nicole’s office and left a message. At 9:15, they called me back and scheduled me for 5:15 p.m. I knew that if I waited until my regular Friday appointment and forced that hip to work out, it would lead to pain and harder-to-fix problems.
I emailed my boss as I couldn’t find him and it turned out that he had called out sick. I arranged to leave at 4:30. By my calculations, I hit 87 percent. My right side just didn’t have the mobility it should. The drive to the chiropractor took about 20-25 minutes, and when I got out of the car, it felt like my right leg had fused and stretching it into a step felt ridiculously hard. But still no pain.
This is when cerebral palsy plays tricks on the brain. As I’m (what feels like) dragging my leg into the chiropractor, I started wondering, “maybe I just need to stretch,” “maybe there’s nothing really wrong and I’m just lazy and my muscles stiffened.” But then I remembered the burning toes. Something was pushing my posture forward and my body was fighting it. But I still had my doubts.
Now, no one has ever gaslighted me in the medical community, except maybe my first primary care physician who referred me to the wrong specialist in the days when I had an HMO. I now always have plans where I chose my physicians myself.
When Nicole entered the room, I explained what’s going on and she quickly confirms that yes, my hip was crooked. Like really crooked. She even made a hand gesture. And that my body had done other weird things to compensate. It all moved beautifully when she manhandled it. She pondered what caused this when we had just considered potentially spacing out my weekly appointments to every other week. Did I overdo it at work? Was it missing the adjustment Friday? Was it skipping my workout?
When I got up from the table, my feet did, as Nicole put it, sexy normal feet posture. My balance has improved dramatically in the last few months, and my strength has returned, and my stamina is definitely increasing.
I stepped out of the chiropractor and took some long, beautiful, easy strides.
It. Felt. Good.
No, it felt GREAT.
So, I don’t know how Nicole would feel about this, but I went to the gym. And let me tell you– Andrew delivered a brutal work out. We did split leg squats in sets of 20 reps each leg with weights. He said I was moving better than I ever had before and I said, yes, because Nicole had straightened my body and stretched out my lower extremities. Like, literally, just did. We did military presses with 25 lb dumbbells. We did core. We did upper body exercises like IYTs. And shoulder taps and mountain climbers and rope slams.
And then, before a shower or dinner, and it’s 7:30 p.m. now, I had to deal with the hellions in my room. I had to swap out and refill three litter boxes for the six cats in my room. I had to vaccuum. I didn’t clean the bird cages, but I did feed and water everyone. And I’m still wondering how the heck those four kittens have trashed my closet without opening the door.
I wanted to blog all this last night after I ate my omelet of cheddar, peppers, homemade farm-procured, roasted tomatoes. But I was exhausted.
Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).
We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.
The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.
Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.
I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.
“It’s a blessing,” the man said.
Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.
I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.
My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.
I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.
I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.
His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.
When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guruNicole Jensen of Back in Line Chiropractic and Wellness Center.
I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.
My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.
Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.
My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.
I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.
I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?
I opened it.
I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.
I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.
Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.
I mean, I suppose I didn’t have to, but it seemed only fair.
That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.
We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.
I almost bought a pair of potato chips.
I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).
Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.
She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.
He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.
He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.
Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.
She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.
“You’re still here?” I said.
“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”
I have a lot of little things to say that problem don’t belong together but today is the Lehigh Valley Book Festivalat Bethlehem Area Public Library and I’m excited, a tad nervous and a bit super-focused and scatter-brained at the same time.
Parisian Phoenix Publishinghas participated in events before but we have scaled up with our efforts and this event today.
So this post will cover:
Spider-Man: No Way Home
Health and Fitness
Pie
Cats
I think that’s about right.
So the teenager and I finally came to the current end of the Marvel Comics Universe movies with Spider-Man: No Way Home. Watchingthem sequentially, and for me, many for the first time, actually made a lot more sense than when I saw some of them the first time.
I got a strange déjà vu that I had seen some of these villains before, but at the same time I was confused because the memory was vague and distant.
So let’s just say, trying not to spoil it for others like me that are woefully behind in their pip culture, that this film incorporates some older films that will be familiar to Generation X.
The primary theme of this movie, in my opinion, is time travel. The actual plot is a tad weak and melodramatic but the homage made to the previous generation of Marvel movies, and the humor employed in this movie, make it worth it.
My favorite Spider-Man is Toby Maguire. I got to see him again. And that made my heart happy. (Toby is also the Spider-Man adored and referenced by supermodel Adelaide Pitney in my chick lit/horror fiction novel, Manipulations, the first in the Fashion and Fiends series.
I had a very good visit with my chiropractor Nicole Jensen of Back in Line. She’s impressed with my progress and got things to pop and move (my right ankle that I broke more than five years ago) that haven’t popped and moved in a long time.
My Later, Andrew at Apex Training worked out every muscle he didn’t the day before (okay that’s an exaggeration) and the teenager set a new personal record in deadlifting: 225 lbs.
Finally, I get to the part I’ve been waiting for: PIE! If only I weren’t trying to be so health conscious… Because I have been visiting the amazing pie ladies Anne and Lisa at Pie+Tart for three(?) years now and their pies (and flat white coffees) have nurtured my soul through some difficult times— and a very very toxically difficult boss.
I receive their weekly email and saw their “freezer section” of leftover discounted pies included a steak and Guinness pie and a matcha custard pie. A meal inspired by two of my favorite drinks.
I was so beyond excited to eat these pies I was vibrating at “the pie hole” which is what they call their window/doorway. It has allowed them to stay in business safely during Covid because how would we survive sans pie.
I can improvise plenty of solutions for lack of toilet paper but I can’t make pie like this— not even with my Pennsylvania Dutch family connections.
I couldn’t even wait for the matcha custard to thaw. I sawed at it with a knife, broke it in pieces with my hands and microwaved a slice for 30 seconds. It was delectable.
And the steak and Guinness pie? So rich and full of meaty goodness I didn’t even have a chance to take a photo.
Oh how I love my pie friends.
And finally the updates regarding some of the cats we are fostering through Feline Urban Rescue and Rehab, Mars has taught Khloe to play and Minerva is becoming much more social. As is Louise.
This post is both a brief review of the Postmodern Jukebox performance at the State Theatre for the Arts and a brief update as to my current condition struggling with cerebral palsy.
Monday night I performed well at work, but by the end of the night my right leg and hip were screaming in pain, to the extent where I grew nauseous. I woke up still in pain but had no trouble performing an upper body workout with my trainer, Dan, at Apex Training.
The teenager, recovering from last week’s ear infection, and I did some barbell bench press.
But on the walk home, I was struggling with function in that leg and pain in my knee.
I knew I had a chiropractor appointment with my beloved Nicole Jenson of Back in Line on Wednesday morning so Tuesday night, I called out.
Since the warehouse is encouraging people to take voluntary time off, I called out for Tuesday, took voluntarily time for Wednesday, in addition to the planned time off I had scheduled for Thursday.
The teenager had an appointment with a new ENT today — he put her head under a microscope, pulled out her ear tubes and gave her ears a good cleaning. More importantly, he explained all the different functionality of the ears.
The audiologist gave her a hearing test and she rapidly discovered— the teenager, not the audiologist— that her musical inclinations have allowed her to inadvertently fake the hearing tests at her childhood ENT’s office.
So the audiologist said that the teenager is a good candidate for hearing aids.
We had a leisurely afternoon which included a delivery of apples from my friend Joan who has tasked me with converting them into applesauce and apple butter.
And then… we (the teenager and I) finally embarked on our date, much anticipated by me. The teenager took me out for pancakes.
And then we headed downtown to the State Theatre for the Arts to see Postmodern Jukebox. #pmjtour
The amazing parking spot we procured had a three hour limit, but both the physical meter and the parking app would only let me apply 1 hour and 24 minutes. So, as that was set to expire at 7:23, I used the app to apply that final 45 minutes from inside the theater.
On the way there we passed Hoza, the new African/Zimbabwean restaurant downtown. Very excited to try it.
But the show— blew my mind. The vocals and musicianship was incredible, the costumes a delight and the arrangements of the music on point.
Last week, I moved my follow up bloodwork from Friday October 15 to yesterday in part because I am planning a trip to DC over the weekend.
The morning yesterday started in a discombobulated fashion as my mornings generally do. I was so mixed up by the time my appointment rolled around that I drove right by the office.
The events of the morning had my anxiety on high, and revisiting my past issues with anxiety has not been fun. I even find myself fighting some of familiar behaviors, like stressing about how much money I have in savings and going over budget on food.
At the same time, I had a lunch appointment with my mother who recently lost a brother to cancer and anticipates losing another to the same cancer.
And I’m feeling my body thinking — my right leg isn’t working. I woke yesterday in no pain whatsoever yet something felt very wrong with my right leg, like maybe it was too close to the left one or pointing the wrong way. Very disorienting feeling.
I asked the teenager to take a look and she confirmed that it indeed look “very wrong” so we called Back in Line so my chiropractor Nicole Jensen could take a look.
This meant the whole day involved running from place to place which led to more stress, which increases the tension and the cerebral palsy stiffness in my muscles.
Nicole adjusted me again and aggressively stretched my hips. She also commended me for trying to know my body.
And at work I felt it. Keenly, painfully. Started in my hip, then my spine, then the left side of my lower back, and then the right. Everything hurt. I finished the night at 92% because of the pain.
The pain bothered me all night, and I woke up with it, and believe it or not struggling to carry the 80 lbs of cat litter I needed upstairs may have helped— by relieving tension.
Thank goodness for the gym, as my trainer Dan at Apex Training is very cognizant of how I am moving and has catered my workouts to my health levels.
I’m struggling emotionally right now, and I am physically in pain across my lower body. I can’t afford to stay home from work and I fear tonight will be worse than last night.
This morning, my bloodwork returned. My TSH is normal. My iron is creeping up way slower than I had hoped. My vitamin D was increasing but it hasn’t budged in four months.
And I also got an email with the results of the Artful Dash— officially Gayle beat me. Which she did not. I was a clear two feet ahead of her in the finishing chute.
I still haven’t heard from either my gynecologist or my primary care physician— and the mental and physical struggle has been rough. It’s ironic, since my daughter thought she say worms in the dog’s poop and within 24 hours she had lab results and preventative medication.
Luckily, I’ve been able to engage my chiropractor (the beyond amazing Nicole Jensen of Back in Line Wellness Center in Easton, Pa.’s College Hill neighborhood) in this journey to discover and maximize the potential of my disabled body.
(Which I am told today is World Cerebral Palsy Awareness Day, not that I ever even heard of it or noticed anybody celebrating.)
I told her this past week has been hard and strange with familiar pain and symptoms coming at the wrong time of the month and new symptoms happening now.
But I also admitted that some of these symptoms— like my swollen legs last night— could be explained by my behavior. Cheeto binge this weekend, for example.
Last night, I performed at only 83% when I had folded those clothes at 100% or higher all week despite pain. My knees had intense intermittent pain and my legs felt completely wooden, like they didn’t even have joints.
The chiropractor laughed at my ownership of my Cheeto binge and said that, yes, that might have something to do with it.
And she commented during my adjustment that my body and I are managing life and my symptoms much better in general.
But here is the “good news”—
My hip was crooked. The right side of my hip was significantly higher than my left and probably had been since the pain started last week. I attributed it to the same old pain but it was probably new and unique pain.
So then the chiropractor mentioned what I have been trying to articulate.
I used to have periodic bouts with high levels of pain when joints would seize and shift and muscles would spasm.
Now, with my exercise regimen and some of my other behavior change, I am experiencing lower levels of pain more frequently, but that pain is emotionally disturbing because I am aware of and used to the conditions that send my body into a flare and am doing everything I can to prevent those situations.
So it’s a perpetual game of anticipating what might be next. And how bad it will be or get before I find relief.
I told her I have had much success with CBD cream and she recommended trying a daily dose of the oils to see if that could help from the inside out.
I’m enthusiastically giving it a shot as over-the-counter painkillers like acetaminophen and ibuprofen don’t help.
And the “not knowing” because of slow response time from my medical team is crippling to my mental health.
Pun intended.
I actually emailed my therapist yesterday and it must have been a good email because I got a response asking if he could call me for a check in, which I said yes to, and he called to do a wellness check to make sure I was safe.
Odd how that can make a person feel “loved.”
Now my hip is back in place, I took my vitamins and my CBD oil and prepared my final Purple Carrot meal from my box. This one— apricot sticky rice— even the teenager loved.
This is an informal update vaguely and disorganizingly (that’s probably not a word, but I like it and it’s how I’m feeling) connected to my series about my cerebral palsy.
It’s not as “official” and well-crafted asI would like as some household/parenting issues greeted me as I walked in the door and I found it hard to recover once the dog started refusing to get in her crateand I discovered the teenager’s floor with multiple piles of kitten vomit, into which I stepped barefoot.
I finished the sequel to Karen by Marie Killilea today— With Love From Karen. That is another blog posted which I started but have postponed due to other events of the day more personal.
Late last night, I reached out to a local personal fitness trainer.
For those of you unaware, the average physical therapy can cost $350 per session, with the uninsured paying $125. If you have, like I do, high deductible medical insurance, this can add up to several thousand dollars in as little as a month.
Been there. Done that.
My amazing chiropractor (Nicole Jensen, Back in Line Wellness Center) bills me $125 a session when she gives me some brief physical therapy, advice and cracks every f*cked up bone in my body.
The high end of average cost for a personal fitness trainer is $70 per session, according to Google.
Six years ago almost to the day, I embarked on my first weight loss journey and shed 30 lbs in six weeks and looked like a skeleton.
By autumn, I looked like this:
Yes, the shadow of a person lifting two pound weights with me is the now teenager as an eleven-year-old.
I have two fitness dreams:
To run a 5k
To be an amateur body builder
A local business, a fitness trainer only a few blocks from my home, has a summer special and good reviews on the internet.
Goofy crop is to obscure the identity of the trainer until I get permission to post.
I reached out with this message:
“I have quite the history of on again/off again weight training.
I went through a very emotionally traumatic loss of job experience in 2020 and turned to stress/comfort/ just plain bad eating and have gained 20 pounds. And stopped training.
I need to regain my discipline so I am hoping to see if you might be a good fit as a personal trainer— theoretically one session a week and I could maintain the effort at home.
I have already improved my diet, but the damage includes anemia so that makes it hard to work out especially in this heat.
I work second shift in a warehouse.
And perhaps the most important issue— I have mild cerebral palsy in the lower body so it’s super important that I keep my body strong and flexible.
I have two dreams— to actually run a 5k and to perhaps pursue amateur body building.
Please respond if this is something you might be willing/comfortable with/knowledgeable enough to undertake.
I am tentatively meeting with a trainer at this business at 11 a.m. Thursday for an assessment and to see if it’s a good fit.
This is a good way for me to improve my health and fitness as I’ve done so much physical therapy, I know what to do. I just need someone to make me do it. And check my form.
Who knows where this might lead? Maybe my dreams of being a body builder with cerebral palsy will come true.
I may have said this before, but even if I have it’s a message that can be said again: I am blessed to have a talented and caring medical team. In addition to this team, I have also been harvesting resources for my physical and mental help.
I am recording this week’s journey so others might consider different ways to find their own resources.
On Monday, the teenager resumed therapy with a new therapist who attended Moravian College at the same time I did and is loosely a friend of my traveling companion M.
I asked if she was comfortable treating my daughter, because we have circulated in similar arenas in the past and my 17-year-old daughter struggles to connect with therapists who work with teens and is too young for a therapist who treats adults.
From what I knew of her personality from the few interactions we’ve had over the years and the information on her web site my gut said she would be a good fit for the teen.
And in my teen’s eyes, I was right.
My daughter is far from a troubled teen, but she has two parents with disabilities, a mother with trauma in her background and an extended family history of addiction.
Her strong empathy and witchy powers can make her experience of the world intense. (Speaking of which— I gave her my tarot cards on her birthday and she cried. I knew she would understand the significance of the gesture but I didn’t expect her to get so overwhelmed she cried.)
On Monday and Tuesday, my work performance wouldn’t crack 88%. I was frustrated and in pain and just moving slowly. After mapping my pain patterns for years, I can say that my back pain is worst when I ovulate and when I menstruate.
Wednesday was, as mentioned in other posts, the teenager’s 17th birthday. I had a tele-appointment with my therapist of about 12 years. Coincidentally I discovered his birthday is the same as my daughter’s. That’s just another reason we get along.
It’s fun to have a professional in your life for a long time like this because I get to see his practice grow and develop, sometimes in parallel to my own life.
I recently took the ACE Childhood Trauma test, which gave me a different outlook on some of my experiences. My parents did the best they could, but they had their flaws and their own battles to fight. So between their own struggles and life events they couldn’t control, stuff happened.
I can’t explain why it’s time to face some of this now, but that’s the way things go sometimes. We all come to certain aspects of self awareness in our own time.
On Thursday, I visited my beloved chiropractor, Nicole Jensen at Back in Line, who leveled things out, told me I was stressed and talked with me about different physical therapy stretches I need to do to fight the pain. We both agree that the pattern of pain increases on those certain days in my menstrual cycle.
I came home and ate cake and ice cream for breakfast. Not the best decision as I have been 20 lbs overweight for a year.
I suddenly remembered that Stitch Fix offers employees access to the Ginger Mental Health app. So I made an appointment for an initial consultation for Friday.
My hope was to use Ginger’s coaching to set goals and recreate/spur my discipline and good habits regarding food and exercise. For instance, I haven’t lifted a barbell in a year. I miss strength training. I still think I could be an excellent body builder.
My Ginger coach is Kathryn, who has a master’s degree in social work. Our session, completely done over text, seemed to be two sessions in one.
The first hour, she asked basic questions about me. The second hour we set up a plan of the topics we’d like to address. This week we will start making and implementing goals. It doesn’t always feel like talking to a human, though the occasional grammar or spelling error reassures me that it is a person on the other end.
Some of her thoughts include: “Sounds like a great idea! So in your case, a plan I might suggest would be to start by addressing your feelings of stress, [being] overwhelm[ed], and lack of motivation by incorporating mindfulness into your daily routine, which can help bring some relief from challenging emotions and help you see more clearly how your thoughts and emotions are impacting your behaviors so that you can feel more grounded, intentional, and comfortable being yourself. This can also include exercises centered around relaxation techniques, positive distractions, mindful awareness, developing awareness of triggers (when feeling stressed and/or overwhelmed, taking time to notice what the root cause is and look for a pattern), pattern recognition, scheduling and time management, and identifying and building on your current strengths and resources. We can also discuss accountability/working with providers (i.e. therapist and coach) and explore sleep/exercise/diet as needed.”
A lot of that feels copied and pasted, but it’s okay in my opinion. Sometimes just having someone help you pick a direction or even commit to a new direction can be the change you need.
Also on Friday, our dog F. Bean Barker got spayed at Canyon River Run, a vet we really love.
On Friday night, I learned a new work center at the Stitch Fix Bizzy Hizzy— style carding. My colleagues cheered me on in learning this new role and I very much enjoyed it, even when my computer monitor broke and I had to use a computer on another line and lean way over to grab my boxes.
Basically, the associates who “style card,” grab all the completed fixes that come off the QC line and use the packing slip to print a style card that includes a personal note from the stylist and lists each piece in the fix and offers examples of how it can be worn.
Working with anywhere from 6-8 fixes at a time, the “style carder” folds the packing slip and style card and places them into an envelope before returning them to the box.
A quick check that the box is correctly wrapped and the style carder lines up the boxes and shoots them down the table onto a metal conveyer line operated by sensors. This takes the boxes to “OB1” or the outbound/shipping department which inserts the return envelope, tapes the box shut and prepares the boxes for mail pickup.
The pickers assemble 920 items a shift, which breaks down to 184 fixes. Each QC associate folds and packages 130 fixes a shift, each style card associate aims for 900 fixes a shift, and the Bizzy Hizzy itself ships about 6,000 fixes a day.
During this time, our tasks are fairly simple, automated and monotonous so we are allowed to listen to podcasts or music. I’ve used the time to explore a lot of topics via podcasts on Spotify.
Spotify is still a new platform for me and it’s slowly gaining exclusive proprietary rights to a lot of the podcasts I listen to. I heard on several news broadcasts that Spotify paid 60 million for Alex Cooper’s “Call her Daddy” where she talks about sex often with an emphasis on blow jobs.
I listen to her because she has some funny stories of the ridiculous escapades she has had: dating a professional athlete, offering blow jobs as a way to sneak into sporting events, etc. But she also sometimes interviews people— like a retired Playboy bunny who left the Mansion and points out the realities of such sexual exploitation. Alex can be really insightful but she also can misuse her vocal range to try and make the podcast more interesting to listen to and that hurts me ears.
In addition to Kristen Bell, Dax Shepherd, Mayim Bialik, and Conan O’Brien (and in addition to the news and fashion), I searched for cerebral palsy podcasts. From TheMighty.com, I learned that the name “cerebral palsy” is an umbrella term for several brain-related disorders. And I don’t really know anything about which CP I have.
I learned CP can interfere with the neurotransmitter GABA which is why our muscles and our brains don’t communicate effectively. I learned that muscles that don’t get used correctly and don’t get the right messages can stiffen and become spastic. This causes pain and lack of control.
The two main classification differences I have heard are hemiplegia and quadriplegia which you may recognize from the words paraplegic and quadriplegic. These terms explain the parts of the brain/body affected. I would assume I have mild hemiplegic CP, as I think it only affects my lower body. But sometimes I think I see it in my hands so I don’t know. And I think I am low spasticity as I seem to have fairly good muscle control for someone with this disorder.
But I don’t know. So I did what I like to do, on Saturday, I called Nan. If you don’t know Nan from this blog, she is often my partner in crime. She has been blind since birth. Like me, we were raised in able-bodied families and never knew life any other way.
Nan is older than I and, despite her disability, has lived independently for most of her life. She attended college. She married. She has a hobby writing career and attends poetry open mics. She was a teenager when NASA put a man on the moon, but despite having never seen the moon, she has been fascinated and following the advances of NASA ever since.
Nan is closer to my aunt’s generation than mine. My aunt has what would now be referred to as developmental delay, but what was called the now insensitive term “mental retardation” in her day. In school, she didn’t learn what the other kids learned. She had basic reading skills and could add and subtract but never learned to multiply or divide. I know because we used to play school, except I really taught her things.
My aunt, then a few years later Nan, and even a few more years later me, we were all part of 20th centuries advances. Medicine had found ways to help us survive, but technology and society had not discovered ways to help us thrive.
None of us have thick medical files that detail the specifics of what is wrong with us. You were thrown into the mainstream to sink or swim. And if you couldn’t swim, you were institutionalized or kept home. Therefore, families didn’t talk about disability as much as they pushed functionality— they urged us to act as normal as possible and pretend the differences about us were not even noticeable.
I mentioned some of this to my primary care physician when I transferred to his practice more than a decade ago (some friends and my therapist recommended him). At that time he guided me to specialists to explain what is wrong with my specific body, but I am realizing now that he might not know that I know nothing about what my disorder is.
So, also on Saturday, I emailed my doctor. I asked him to help me find someone who can talk to me about cerebral palsy. I know children with the disability in today’s world work with a pediatric neurologist.
And it hasn’t all been work and reflection. My daughter and I got mani/pedis for her birthday/upcoming trip to Cape May. It was our last appointment with “Nails by Bethy” at Hyperion Salon. Beth has a new full time career that should offer her more stability and room for advancement.
We met Beth 12 years ago on the same date she ended her nail career. And the teenager and I got to be her final clients.
And yesterday I tried the new strawberry popping bubbles at Dunkin. I had them in an iced matcha latte. I must say, this is the best matcha latte I ever had at Dunkin but the bubbles had such an artificial strawberry flavor it tasted like someone poured chunks of jello in my drink.
If Dunkin’ wants to capitalize on the boba trend they should stick to normal tapioca.
I (and teenager #1) started the day receiving our newest foster cat, Touch of Grey.
So, here’s the thing about cats. Dogs are lovable, forgiving and devoted. They want acceptance, love, and structure. Cats don’t forgive. They are more aloof and nervous and neurotic.
The same cat— example: Touch of Grey— will react strongly in different environments and will remember whatever you do to “wrong” them. She is approximately four years old, FURR had her spayed. She is a newer addition, an owner surrender because of a move.
She has had a couple other placements. She seems happy here. Cats really a lot on body language to communicate. Her signals are very strong. If you heed those warnings, life is good.
I haven’t seen her bitchy side yet, but others at the rescue have. I don’t relish the day I have to crate her.
But this is her a few minutes after we spent our first time together: Play with Grey
At 10:30 I had my regular chiropractor appointment at Back in Line Wellness Center with Dr. Nicole Jensen. For the first time in ages, I was pretty much level and because I haven’t been dealing with constant pain she was able to stretch out my hips more than ever before.
And Thursday night, I reached a new career personal best at the Stitch Fix Bizzy Hizzy. I QC’ed 116 fixes.
When I arrived at work Friday night, I felt powerful and amazing. I looked forward to knocking out the shift and getting my nails done in the morning. My favorite nurse, my favorite QC/Style Card peer and I started talking about places open late at night, Waffle House, and potentially going out one night after work. Am I making new friends?
Even if nothing else comes from it, it felt good to be included in the discussion as a newer employee and in the Covid age.
Maybe I got a little cocky with the universe, because within a few minutes at my QC station, I moved wrong and post my chiropractic adjustment my body just said “nope.” I spent the rest of the night in pain. At about 4-5.
There’s someone at work who physically reminds me of a friend whom I’ve not seen in a while. That was bothering me. Not that the person can control their appearance.
And we had these new stickers that made the night chaotic.
To counter some of the chaos, the leaders hosted a “power hour.” This meant the different QC valleys would compete to see who could get the most work done in the hour. They blasted 80s music throughout the warehouse.
I knew every word to every song. And I didn’t even remember the songs. Isn’t that funny the way that happens? A lot of the music brought me back to childhood, and to middle school, and different events of the past. The emotional fugue dulled my senses.
The music included the song Elvira by The Oak Ridge Boys. That song, and I am sharing this video from a Grammy performance in 1982 (Elvira), used to be a favorite on the jukebox in every bar my parents used to frequent. I think the experience tapped my feelings of helplessness.
Between the pain and the new stickers, I only QC’ed 99 fixes. Though I did speed up as the night went on.
But then I got home— cuddled the dog, laughed at some comedy, made Mac and cheese. All is good.
Angel Ackerman 