This Zoom conversation with David Figueroa was so fun. I talk a little fast in the beginning but I eventually slow down… a little.
Last weekend, our publisher and founder, Angel Ackerman, recorded with David Figueroa of David’s Cerebral Palsy and Fitness Channel to talk about …
A conversation with David Figueroa of David’s Cerebral Palsy and Fitness Channel
Before I get rolling on this, my second blog entry for the day, let me show you Jennifer Grey (Dixie), the foster kitten who still doesn’t trust people much. Here she is, nestled in my sock bin and hiding from the world. And another photo of her with her brother Giorgio. Giorgio is the sweetest, quietest boy and looks gigantic next to her. But then, I think foster Jean-Paul Sartre, two months her junior, is also bigger than her.
So, I went to my specialty neurologist, the physical rehab doctor. Who laughed at my “Emotional Support Animal” t-shirt with the image of Animal from The Muppets.
She thanked me for being flexible and moving my appointment, and we started chatting. She agrees that some of my problems may have resumed with the recent shift change at work, and that Morton’s neuromas make sense after decades of toe walking.
My primary care physician had prescribed me Flexeril to try when my body felt stiff. My neurological physiatrist switched it to Baclofen and suggested I might take it up to three times a day when I feel stiff.
She was impressed when I showed off my quad stretch without leaning on anything.
But she studied my shoes and watched me walk and noted that my right leg is sliding more, that I’m not lifting off the ground like I should, and that my left leg scissoring is more pronounced. I also have less mobility in my right ankle than my left. She’s concerned about the increase in my spasticity and wants to see me again in a month.
And if my gait and spasticity doesn’t improve, I may need botox. In my hips. I’m not real keen on the idea of injecting neurotoxin into my system.
But my curls were sassy!
And then I came home and made sandwiches for my work lunches. With spinach and Hungryroot spinach artichoke dip.
First, let’s celebrate that I have no pain today.
Second, let’s celebrate that it’s sun-shining gorgeous out.
Third, let’s celebrate that that damn race between Dr. Oz and John Fetterman is over. Talk about two bad choices.
But it sure was exciting to take my freshly-minted 18-year-old to vote and even more exciting to hear her rant about international politics after she took my out to dinner.
M and I took her to Paris, Moscow and Kazan the summer she turned 12… and while it was a whirlwind visit, she had the brain-expanding experience I hoped she would have.
Because she knows how little of the world she’s seen, but also knows how little she can trust depictions of other cultures perpetuated by the mainstream.
I often wish I could see Russia how she sees Russia. I imagine it’s similar to my view, but also very different because I have seen parts of North and East Africa and even Yemen. But just that little pop of Russia six years ago altered her perceptions forever.
If you want to read more about that trip, click here to start in the middle.
The beginning of the trip is here.
So, last night, The Teenager took me out to dinner— at Applebee’s, she loves the fiesta lime chicken— and we tried the Cheetos cheese curds and the slamming reindeer drink.
The cheese curds were strange, super greasy and very addictive.
Other foods I have taste-tested recently include the cookie butter doughnut at Dunkin which I mention here and some new flavors of delicious Blue Diamond almonds which we bought at QuickChek, video here.
I ended up calling out sick from work today— in part because of my hip and in part because I didn’t get to sleep until 3.
I see my specialist today, and my body is definitely stiff and angled but I’m not in pain. What a thing to say— but I wanted to be in pain to explain how I feel to the doctor.
I’m trying to motivate myself to give up sugar and do a 30 day elimination diet via Whole30 as I think reducing food-related inflammation in my body could go a long way. And there are others who would like to see me try medical marijuana.
I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.
I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.
I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.
But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.
If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.
I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.
Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.
And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.
I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.
So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.
I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.
And strengthen writing habits.
The jury is out.
I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.
The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.
The Teenager knows how to bribe both of us.
She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.
There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.
And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.
I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.
I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.
She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.
I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.
Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.
I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.
If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.
Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.
We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.
I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.
My neighbor and the pet mama of my favorite little dog, Sobaka, had a birthday yesterday and her 700th Peleton ride. Another friend had a birthday Thursday and by happenstance I had that podiatrist appointment in her town and stopped to see her. She insisted I had to have done it on purpose, but I am terrible with birthdays. I know they are coming. I make plans days in advance but somehow, they slip by without me recognizing them.
The Teenager decided to take the bull by the horns and go shopping for our neighbor’s birthday and collected all of her favorites: Diet Coke in 20 ounce bottles, Cheez-Its and various flavors and sizes of M&M chocolates. It’s something the teenager learned from the maternal side of our family, because when my mother runs out of ideas for what to buy someone she either finds something completely ridiculous (like the whole chicken in a can that she bought my husband for Christmas one year) or stocks up on their everyday favorites. (The chicken in a can stemmed from my husband’s love of chocolate pudding in a can. Things escalated from there.) It’s like a care package, but more festive.
Now Sobaka turned eight this week so The Teenager also bought a corresponding gift bag for the dog. With extra tissue paper as Baki loves tissue paper, some treats and some little stuffed toys Baki will probably ignore because she’s too hoity toity to play.
My family has lived in this neighborhood for 20 years. Some of my neighbors have lived here their whole lives, like Little Dog’s Birthday Girl Mom and my neighbor to the right who cuts my lawn every time he cuts his. Most of my neighbors have been here as long as I have, and so we have adopted an informal mascot of the Flamingo and have the occasional girls night.
The Teenager is very excited to be old enough to attend. Last night was the Flamingo Birthday party. I was very very much looking forward to it, and very excited to share the slow progression of my service dog application with my neighbors. Very excited also to see what cocktails would be served as this particular host does not disappoint. (I ended up with a Jack Daniels canned cocktail of lemonade and honey whiskey, delicious.)
I suspected this was a recipe for disaster, but was so looking forward to relaxing with neighbors and laughing after a hard week. I had been up since 3 a.m., worked almost a full day with odd results on my metrics, went to the gym at 5 p.m. and inadvertently skipped dinner. The party started at 7, but I opted to wait for The Teenager to get home from work at 7:30 pm.
I’m skipping around chronology here, but my brain was doing this same jumps for much of the day, fatigue leaving me not quite here nor there. When I left for the gym at 4:40 — it’s about a 10 minute walk — I discovered a package from my stepmother’s business.
How honest should I be? This package struck fear into my heart. I didn’t want to open it. But I had to open it. I haven’t heard from anyone in my family for months and it seems like some people in it are getting harder to get a hold of, but I know rationally it’s a busy time of year and we’re all still recovering from the loss of our patriarch and trying to figure out how to fill that void. So of course I open the large but light box.
There is a beautiful card inside with a thoughtful inscription from my stepmother. She had a quilt made for me of my dad’s things. I cried. Because this week has been hard for me and I’ve been trying to hide just how hard and wishing I had my dad to listen and make me laugh. And not many people other than my mother and I would care, but Tuesday was my parents’ wedding anniversary.
I almost carried the bulky blanket with me to the gym because I didn’t want to put it down. Luckily, the Teenager got home in the knick of time to take it away from me.
We did a fantastic upper body workout at the gym, with some core exercises that used the legs which I very much needed. I had skipped Wednesday’s workout not knowing the source of the nerve pain. The workout pushed my arms and stretched out my extended person, who was very stiff.
Once I made it to the party, I sat by the fire pit in the yard (wearing the Teenager’s Stitch Fix mock leather jacket because I didn’t want to fight the kittens in my room to get my very stylish jean jacket) sipping my cocktail. I had rejected my first seat because the Adirondack chair made my back and hip very uncomfortable. All day my right lower back muscle had been straining oddly, and I thought maybe the cortisone shot in my foot had caused me to move my body differently.
We moved into the house for ring bologna, cheese, pretzels and chocolate-on-chocolate cake. If you are looking for me in the photo, I am second from the left with the Teenager beside me. My exhaustion kicked in high gear. The Teenager had to leave for work at 8:45 p.m., another overnight dog-owning client, so I thought it best to follow her home. Which, for the record, is across the street.
Now, I attend these parties barefoot as long as the weather allows. The Teenager and I leave the house, descend the front stairs, and reach the sidewalk. I think I took two steps on the old sidewalk and I lost my balance. Badly. Tried to regain my footing and couldn’t. I fell onto the Teenager who allowed me to ricochet off her without budging. Like a mighty tree.
And then she looked down and said, “You okay? You getting up or are you dead?”
If you don’t live with someone clumsy or someone with a condition like cerebral palsy prone to these kind of incidents, you might find that cold and cruel. It’s not. It’s practical and allows me to retain some dignity as I collect myself. My daughter knows I don’t need fuss, that I’ll let you know when it’s time to panic. It might be a little later than it should be, but eventually I’ll let you know. We might stop at the Chinese Buffet with a broken ankle, but eventually I’ll end up at Urgent Care when I need it.
I knew I stubbed my toes and my palms and my elbow was screaming, but I was praising whatever entity was watching over me that I had the heavy jacket to protect my arms. My glasses were still on my face. My face never hit the cement. We were good. I just hoped the jacket had survived.
“It will make it look cooler,” the Teenager said.
I crossed the street and took inventory. My elbow was bleeding and was very tender to the touch. My other scrapes were inconsequential. I checked my phone for clues as to what might be happening.
Holy shit.
Let me just start my saying that even with the explanations offered by Apple and Google, I don’t understand exactly how to analyze double support time, walking steadiness and walking asymmetry as recorded by my phone. I look for patterns. I know my phone does not consider me a fall risk, so I rule that algorithm-based tool out as useless for me.
I know, in general, that when my asymmetry reaches 10% or more I tend to fall. This shows two spikes, one at 53% on the walk to the gym, and another at 58% on the way to my neighbor’s house. As best I understand, this means one foot is walking faster than the other. Did the cortisone shot make it so I can’t feel my foot enough to use it? Is this foot unable to keep up with the other? This idea terrifies me.
I cleaned up as best I could and collapsed in bed struggling to get comfortable with my elbow bothering me and my back hurting worse. My brain was calculating and worrying and fighting the downward spiral.
That’s where I’m at. Except I’m cuddled on the couch in my dad blanket.
The cats woke me up at 3 a.m. today and perhaps it was the cortisone shot but I could not for anything get back to sleep. But when I got up, the foot looked good except for some cute round bruises and I didn’t feel anything but stiff. By 4 a.m. I was drinking coffee and working on my NaNoWriMo word count for the day. And with all these photos I am taking of my feet I am sad and embarrassed that I haven’t had a pedicure since my friend left the business.
I got to work jittery from too much coffee and optimistic that I would slay the day. Until our 9:30 break, I was at 100%. No pain, though occasionally depending how I stood on my foot I could feel pressure or as if a bubble were on the bottom of my foot. By about 12:30 (which is after six-plus hours of standing) I had some ache in the toe but no nerve pain.
But my numbers had fallen to 89%.
You see, recovering from this means I know have to learn how to move my body in an efficient way again. And since I’m exhausted and trying to reclaim my performance, the combination is leading to some jerky movements that are stressing my back.
Meanwhile, my neurologist/physiatrist’s office called. They wanted to move my Friday November 11 appointment to Wednesday November 9. I asked if they wanted the same time. The nurse asked me if I wanted the same time. I told her that it didn’t matter I just needed to inform my employer.
Turns out that the doctor was not scheduled to be in the office that day and planned to come in just to see me. I told the nurse that wasn’t necessary as I had seen my podiatrist and now had a foot full of cortisone which was providing a perfectly adequate temporary solution. She insisted I needed to be seen. So I’m going in at 3:30 after work.
I forgot I had a chiropractor appointment at 3:45 that day so I moved that to Monday, November 14 because I’m not about to call the neurologist back and make her change the time.
They offered early dismissal at work today, so when I went into the system to cancel my time off for November 11, I added paid time to the day I took off yesterday and took the early out. I wanted a nap.
But when I got home…
These guys had other plans. (See photo of cats cuddling on me.) At one point, J-P didn’t realize the hand petting him was mine and he freaked out and attacked my arm as if he were defending my life. Until Louise snarled at him.
And in other news, I received an email from Susquehanna Service Dogs:
“Your application has been reviewed by the Partner Selection Committee, and we have added you to the list for a preliminary interview…”
Another form to have a medical professional fill out, this one attesting to my psychological health.
“… Our preliminary interviews provide an opportunity for you to ask questions as well as a chance for us to get to know you better. It will include two staff members, a volunteer and a demonstration dog that will be used to show you the ways in which an assistance dog can assist in mitigating a person’s disability. The interview will be held at our facility.”
So that’s exciting.
More on the service dog process here.
I have a neurology physiatrist appointment next Friday and I recommended my doctor to my podiatrist, who has a relative with MS.
But this blog post will be about my podiatrist visit.
I mentioned I felt kind of silly going to the doctor for an achy toe when I knew my work life had changed and my hip was giving me trouble. But three years ago I had a blister in this toe that got infected and I have a tendency to ignore things. And I’m trying very hard not to do that.
My doctor always makes me feel like a kid, in a good way. We had a mutual friend who has since passed away and that mutual friend always said that if he had a daughter he would want it to be me. Maybe that’s why this podiatrist always makes me feel like I’m part of the family. Or maybe he’s just a good guy.
I forget that I’m wearing a mask that reads “Fragile: Handle With Care.” And he’s the only person who has ever commented on it.
“So you’re fragile?” he asks.
“I am fragile,” I admit. “And I try to have a sense of humor.”
He pats my shoulder.
And the next thing he does is hand me a strange orange ball with peach fuzz.
“You can have one of these.”
He tells me a story, about a house for sale on Route 611 with what appeared to be orange trees. He stopped and took some fruit, cut it open, planted the seeds, and put what grew in his yard. He thought maybe they were Bergamot oranges, but soon found a real Bergamot and found out that wasn’t it.
It’s a flying dragon bitter orange. And he likes to give them to patients for their aromatic value.
He still has a private practice, so he can do things like pass out oranges.
I explain what’s been going on with my foot, and that my specialist can’t see me until April or maybe next week. He asks me about my other doctor, because he hasn’t heard of her. I end up writing down her name (and he asks me why I carry so many pens and I answer “because I like colors.”
Now, I 100% expected him to tell me that my toes rub and cause inflammation and pain because I walk funny. Which he did. And he reminded me to keep my big toe and my second toe separated. Which I don’t. But he immediately decided what I described was nerve pain and wondered if some of it might be sciatic or stem from a neuroma or both. And a later Google search informed me that this type of pinched nerve/nerve tumor can be caused by the pressure on the foot caused by wearing high heels, or in my case, natural toe walking.
I was skeptical before he did his exam, but I know he knows his stuff so I kept my mouth shut and listened. When you manipulate the foot in certain ways, you can make the neuroma “pop” in a way that the doctor can feel and/or hear. He thought the neurima would be over by my fourth and pinky toe. And he did feel a little something there. But when he flexed my foot to check for a neuroma below my second and third toe, my foot audibly and repeatedly crackled.
This surprised him.
He explained my options: orthotics (which I would like to talk to the other doctor before we change my walk), cortisone shots, or surgery.
I let him give me cortisone shots. I don’t normally like anything that numbs pain because I believe in the value of pain as a communication signal. But, if the shots work, it would give us a chance to see if the neuromas contribute to my body’s way of compensating for my, as the podiatrist put it, “challenging gait.”
He prepped my foot with great care. The needle was long but super fine.
He inserted it in where he expected a small neuroma to be. When the needle struck the neuroma, it pinched and burned. Not for very long, but very distinct.
He noticed me flinch.
“Did that hurt?” he asked.
“It pinched, and if a starburst had a feeling that would be it.”
He nodded. “You definitely have a neuroma.”
The needle continued its work.
“That feels like you stuck that needle right out the other end of my foot,” I said.
And it reminded me of how I described the symptom: It felt like someone stabbed a knife through my toe to the floor.
He did the second location. No pinching/burning feeling. Just three very small little starbursts.
So we shall see.
I know I haven’t written in a while, in part because I felt redundant talking about my business endeavors at Parisian Phoenix. The Easton Book Festival was a lot of fun.
I took yesterday off, pretty much just for fun, and I ended up perusing the shows on Motor Trend’s streaming channel, heading to the gym and watching the neighborhood kids Trick-or-Treat.
When I got to Apex at 2 p.m. to meet up with my coach Andrew, he noticed my leg was twisting in. It had been, at that point, one week since my last chiropractor visit. I have my next visit tomorrow. I’m trying to stretch from every seven days to every ten.
So after a rugged leg day with Andrew, I went home and checked the measurements on my phone for my walking asymmetry. I haven’t had much recorded in the last few weeks.
But Andrew was right… The asymmetry measured 4%. I’m not sure what that means, but it does coincide with my legs malfunctioning.
I woke up with sore quads from leg day. And my whole work day was a struggle because my hip was out-of-whack and my legs felt heavy. And my middle toe on my right foot kept burning.
I finished the day at 85% and it was brutal. It’s difficult for me to straighten up. On the way hope, a pain filled my toes so badly it up my leg as my foot began to spasm. Felt like some sort of nerve pain.
The phone registered 9% asymmetry and I keep getting pains down my right leg that make it hard to stand.
I took off my sock and my toe closest to my big toe is red, maybe a pinch swollen, and very tender. The flesh almost felt like it might be developing a blister, but no indication that fluid is gathering and the red pattern seems to be jagged versus the round shape caused when something rubs. The dog did stomp on it yesterday with all her weight from a leap so maybe she damaged something inside.
I washed it well and soaked it in Epsom salt but no change.
My whole body is a mess.
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.
Angel Ackerman 