I’ve been making friends in the writing community for decades, and collecting artists along the way. One of those writing friends is William D. Prystauk– from a chance meeting at a literary event for Kaylie Jones hosted by Laurie Lowenstein– which had to be 15 years ago.
Bill and I would meet for coffee at Lafayette College’s Skillman Library and talk writing for hours. We’ve even seen Gorbachev together. And he’s nailed my kid in the face with a frisbee, probably one of the first signs she had ADHD. She couldn’t stop talking long enough to notice the frisbee sailing toward her.
Bill is also the author of the Kink Noir series: Bloodletting, Punishment, Debauchery and Bondage. I asked him if he could bring Parisian Phoenix Publishingsome inventory for the upcoming April 29 celebration of National Independent Bookstore Day we are holding in collaboration with Easton’s Book and Puppet.
While Bill is not officially one of the Parisian Phoenix authors, he did appear in our 2022 anthology, Not an Able–Bodied White Man with Money. As publisher at Parisian Phoenix, I try to promote the hard work of authors that appear in our books, even if those other works do not appear in our stable. That’s one of the benefits of working with a tiny craft press.
Bill and I went to a new business in my neighborhood, Plants & Coffee. They literally opened last week. Bill and I are whores for good conversation, environment and taste-bud experiences. He tried their mango spritzer, and I went for the lavender rose basil spritzer. I love lavender. I love rose. And the mix… greenery surrounding us, the calming lavender and the exoticism of the rose, which reminds me of the Arab sections of Paris…
The shop itself is in a building where I once toured an apartment that could have come straight out of a 1970s porn set. The commercial space was most recently some sort of discount produce stand, and if I remember correctly had some makeshift arcade for a while, and prior to that what Bill referred to as the best Mexican food he’d ever had in this life at a place called “Garibaldi’s.” I remember it, but I never ate there.
So imagine my surprise when I walk into this gleaming space of black, cream and greenery. Small touches like books, retail items and couches providing so much softness and homey feel.
I will be back.
(Meanwhile The Teenager is at home getting her newly adopted rats situated.) They are fitting right in to the menagerie. She adopted them from the Harrisburg Humane Society.
And we also went for sushi at Jasmine, which I often think is Bill’s real reason for coming to see me.
I had my full activity session at Physical Therapy today. I did my stretches, got strapped into the gait belt, and did a series of single leg stability exercises under the supervision of the computer’s measurements.
Then we headed to the zero-G treadmill. I was advised to make my feet and pants have contrast. So, I wore my bright green shoes, my purple polka-dot knee socks, and my black-and-white cat leggings from Purr Haus in Emmaus.
He chuckled while remarking that I certainly followed directions.
The Zero-G treadmill required some rubbery pants surrounded by what resembles a surgical/Elizabethan collar (cone of shame) that get zipped into a treadmill pretty much encased in plastic. When it filled with air, it reduced my body weight. I was able to walk the treadmill at 50% of my body weight.
The reason for contrast is that the treadmill offers an image of your feet. Three views on a monitor: front, side and back. So I was able to watch my feet, move my legs, angle my feet and reinforce the improved gait pattern by watching it as I walked.
I was only on the treadmill for 15 minutes, but it that time I discovered what part of my foot I normally don’t use. It was exhausting– and exhilarating– and so fun to show the Teenager the results when I got home.
But before I got home though I had an appointment to have my stitches out and on my goodness did I have the most personable and confident resident yet. I only had three stitches but that last one gave her a terrible time. It took her thirty minutes to get all of them out. I had her laughing and she was very patient and determined, and so afraid she was going to hurt me because “if it were me I’d be jumping out of my seat!”
She said I was the best patient ever, that I sat so still and I must have a high pain tolerance.
Between the two appointments, I stopped at Dunkin for a decaf coffee and saw they had a new “egg taco.” I read the nutritional info and with 500 mg of sodium, 180 calories and 8 grams protein, it had less salt and more protein and less calories than the avocado toast. I am so sad they no longer have the hummus.
When I got home, I did some little things and ate the homemade chicken and dumplings my Pennsylvania Dutch mother-in-law is known to deliver when people in the family are sick. And then I tried to take a nap, but a little birdie was guarding me.
I haven’t had much time this week to eat, or rest, or even go to the gym, so I haven’t had time to read books, report on podcasts, or blog. And that’s a shame because I’ve seen some silver linings recently.
My friend in the hospital is doing well, and the staff on the cardiac floor seemed appropriately mortified at how her case was mishandled on Sunday. That doesn’t fix the long-term damage to her heart, but at least now she has the team to move her care forward in the future. And our coworkers have paraded into her room literally one after another, including her direct supervisor who turned up before she had emerged from the ICU. That makes me proud to be part of the team with whom I work.
She’s coming home from the hospital later today.
I visited my friend on Thursday evening, and again Friday after work. The Teenager had a dinner party and game night planned for the evening. My job was to stop and augment the alcohol offerings. I still need half-and-half after running out last week. Three trips to the store have yielded no such milk product. I have had tea. I have had terrible coffee at work. I have drunk my peppermint tea black. And I have resorted to, with great desperation, coffee with two percent milk. My father preferred his coffee with milk, and it’s something I just can’t adjust to.
I stopped at the new Weis market in Bethlehem near the hospital, purchased several single-serve-type bottles of various wines and a cold six pack of Sweet Baby Jesus chocolate peanut butter porter. I love a good porter or stout and DuClaw’s Sweet Baby Jesus is a solid one, though not as smooth as Samuel Smith’s Organic Chocolate Stout. That is my favorite.
I also grabbed a half gallon of Weis-branded ultra pasteurized half and half, dated March 23. Let me skip ahead to this morning and alert you that my half and half, after I freshly popped the seal, was spoiled. But, at the time of my arrival home, I felt like a successful warrior queen.
The Lovely Teenager and I received a package from Stitch Fix yesterday with our Freestyle goodies. You can see the unboxing here: (The Teen is wearing a Stitch Fix sweater from a recent fix.)
The Teenager invited a couple over for dinner and invited more friends to join us for Ransom Notes, a blend of Cards Against Humanity and a magnetic poetry kit. I didn’t take any photos of the evening, as I was distracted laughing, enjoying a beer, and socializing, something that has not happened nearly as much as it should. The Teenager expertly prepped and executed a menu of homemade mac and cheese, steak, and air-fried asparagus, with box brownies for dessert. Knowing one of our guests was vegetarian (and relieved he was not vegan), she prepared one very large standard mac and cheese, based on the recipe from the never-let-you-down Betty Crocker Cookbook. But being the carnivore and bacon whore she is, she made a second, smaller mac and cheese with bacon.
Conversation flowed freely. The Teenager’s father arrived next, bearing the essentials for rum and Cokes. Our artist friend Maryann Riker followed with some Yellow Tail. Somehow Uno became the first game as choice as poor Maryann had never played this classic.
Brilliant photographer Joan Zachary arrived next with her partner, who immediately made friends with The Teenager’s extra long cat Oz. Joan joined us for a round of Cards Against Humanity, and did impressively well for her first time playing. I did not win a single black card. But I laughed my ass off.
And it was Uno we returned to to end the night, never quite reaching into the box for Ransom Notes. I guess that means we may need to host another game night.
Also, my cat Fog has been sleeping with The Teenager against his will. But they seem to be developing a relationship. Meanwhile, foster tripod Louise has permanently become my snuggle buddy, sleeping in my arms every night.
It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.
I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Creamflavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.
The importance of exercise when you have a disability
Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.
(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)
Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.
That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.
And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.
These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)
In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.
Mundane things like food and mail order packages
Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.
Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…
I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.
I woke up by my alarm at 4 a.m. yesterday, and for the first time in days, I thought I could actual get out of bed. My body has been heavy with fatigue and a steady post nasal drip. I suppose that might be from closing up the windows with a bird, a dog, and 11 cats in a house desperately in need of a vacuum.
But even so, I laid in bed until about 4:20 cuddling the FURR fosters in my bed: tripod Louise and kitten Jennifer Grey.
I drank two cups of coffee, one Supercoffee and one Dunkin Polar Peppermint.
I even wrote about 500 words on my next Fashion and Fiends novel that I have been struggling with for months.
I was stiff and my back was achy and yesterday I noticed some of that burning in my toe but I thought perhaps I could blame my shoes.
I saw the chiropractor the night prior, the amazing Nicole Jensen of Back in Line Chiropractic and Wellness Center. Nothing really seemed amiss and things were moving well.
Yesterday at the warehouse I performed 97%. So I thought… why not… let’s take one of my baclofen pills to see if looser muscles might mean less stiffness and aches. It was the first time I ever took one in the morning. I’ve taken them in the evening and slowly taken them earlier.
The pill helped. It felt like I could swing my legs again.
The medicine reminded me that I never heard back from the neurologist’s office about the appointment they needed to move and the paperwork I submitted. So I emailed. Now, the portal that allows patients to email medical staff has a strict character count. While in the newspaper business, I had a nickname: the word count goddess. This was in the pre-Twitter days when no one cared about character counts.
I composed a masterful email that addressed all my concerns succinctly, but maintained a polite air. I love this doctor and truly want to make her life as easy as possible.
I performed most of the day at 100%, by my employer’s numbers, which don’t account for our ten minute breaks. Their numbers suggest we do 16.25 units per hour, but don’t change during the hours we have break, which is twice a day. Their default calculation means the computer thinks one unit should take almost 3 minutes 40 seconds. So a ten minute break (and a small amount of time to move to and from a work station) reduces the potential productivity of that hour by about 3 units. So to compensate for that difference, if you wanted to keep every hour equal, the units per hour should be 17.
My first hour, I completed 18. My second hour I only completed 16. Then we had break, (and my neurologist had sent an encouraging email back by that point and her nurse had suggested a time for my next appointment) and I completed 5-6 in the twenty or so minutes before we had a department wide “power hour” in which I completed 19. So by the midpoint of my shift, and even when I clocked out for lunch, I was at exactly 100% with no accommodations for my disability. But by lunch, my ability to bend was decreasing.
I felt like the Tin Man in the Wizard of Oz when he begs Dorothy for oil.
I had a cheerful lunch with my friends, and went back to work, still maintaining the official numbers for 100%. Even by our last break at 1:30, I was still 100%. But I was stiff. And feeling sluggish. So for the first time ever, I took a second baclofen in a day. My doctor suggested up to 3 a day.
My toes were burning at this point, making me wonder if my pain from my two Morton’s neuromas had returned. OR if my toes were rubbing because I forgot my toe separator doo-dad. OR if my toes rubbing (because later I saw and felt the bony, protruding tender spot where it hurts) impacts my posture and triggers the neuroma(s).
If the issue continues, the neurologist wants me to call the podiatrist. I stopped by his office last week to drop off $11.32 in cash for my copay and his office was unexpectedly closed. In the old-fashioned manner, I slipped the envelope in the door.
I worked as hard as I could the remainder of the day, now trailing behind because of my ten-minute break and at 2:30 p.m., 30 minutes from quitting time, the support team brings me the “easy” work and tells me it’s a priority. I end the day one unit away from 100%. One unit.
And somewhere around 2 p.m., the neurologist had called and asked for $30 payment for the form fee for my FMLA paperwork. I apologized and said while I completely would pay the fee, I was at work and didn’t have my wallet on me and I would get back to them before the holiday. I called them at 3:10 p.m. from my car, and was added to a call back list, because the wait time was 40 minutes.
I hope including this much detail might show how difficult it is to pursue medical care and to pursue official accommodations in the workplace. Medical care itself is a labyrinth. Navigating your way to a provider who not only cares but has the knowledge to help, maintaining the patience and persistence to pay the fees and follow the paperwork, and taking responsibility for lifestyle changes that only you can make. I’m fortunate that I can do these things myself. What if my disability prevented that? Would I be treated the same way?
Just throwing that out there.
So now the happiest part of my day— hanging out with my blind friend, poet and essayist Nancy Scott.
She needed to go to the bank and she wanted to go to the Dollar Tree to check out the Christmas decorations. We had a great time roaming the aisles with me describing all the goodies. Nan fell in love with an elf.
I said to Nan, “my leg is not working.”
I meant it off-handedly but I checked my phone later. And sure enough— my walking asymmetry was way off. Normally I fall when the spike hits 10 percent. It was 50 percent.
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.
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.
It’s 5:15 a.m., on my final Wednesday of my 10-hour Sunday to Wednesday shifts at the Stitch Fix Bizzy Hizzy. I loved these shifts. I love having three days off. But as of Monday, I will be Monday to Friday, “normal” 8-hour shifts, 6:30 a.m. to 3 p.m. More change.
My chiropractor had a class last week so I missed my regular adjustment and now I can feel my hip moving inward. I never expected that this journey to improve my fitness and awareness of how my body works (if you aren’t a regular I have diplegic spastic cerebral palsy) would lead to this strange zeroing in… I am starting to pinpoint these subtle differences, but I am still learning how to fix them.
I bailed on my strength coach Andrew last night. He had asked to move my Monday session to Tuesday and by Tuesday (yesterday), I just didn’t have it in me. I didn’t sleep well. My stress was through the roof. I overdid it Monday (trying to prove myself to no one but me). And to top it all off, my diet had been all processed foods. When I felt that hip turning inward, I knew my body needed me to stop.
So here we are, the final Wednesday. The third day of my life with my new Ninja DualBrew coffee pot. Unboxing video here.
The Teenager got her second fix, and she loved it. She was aghast to learn that a sweatshirt could cost $78 at full retail price, but I think this experience will teach her the difference between the workmanship of different brands. She asked me not to record her trying things on, but I wish she had because the fit and look of this fix was exponentially better than the first. Unboxing video here.
I have to leave for work in a moment, but let me say I am on my second cup of Green Mountain Dark Magic coffee, courtesy of one of the Teenager’s clients, and I must say it’s the only coffee to keep pace with my Supercoffee.
The Ninja DualBrew has been great so far. I like the brewing options, the heat and strength of the coffee, but I am making small errors in operating it. But I haven’t experienced any of the problems listed in the reviews. My four a.m. brain likes the K-cup option, and my weekend self loves the option to brew a pot. I have not tried iced coffee yet.
I have been making my coffee in my espresso machine for most of the last three years, because I don’t have a full size coffee pot. I’m the only coffee drinker in the house now and I rarely drink more than one cup. I like it really strong and really hot so the Krups espresso machine I bought 23 years ago is just fine.
The teenager programmed the new coffee machine to have my coffee ready before 5 a.m. We used the “rich” setting as remember— I like it strong. We also chose 26 ounces.
Well, Supercoffee brewed on rich had me vibrating after a cup and a half. I brought the rest to work. It’s noon and I’m still drinking it.
The Teenager is working on her college application and wanted to find a coffee shop to force her out of the house so she would have less distractions. Originally, she wanted to go to Three Birds in downtown Easton, one of our favorite spots, but by the time she got out of work, they would be closed.
I know of places on the other end of the Lehigh Valley open in the evening, but couldn’t think of anything close to home. So, I googled.
Monsieur Google suggested several local Starbucks.
Not that I don’t enjoy a flat white every once in a while, but we wanted something a little more unique and potentially eclectic.
A little more poking around the internet and I remembered Mythic Beasts and Brews, a ten minute walk from our house. Or, as the teenager says, “Mom, it’s closer to the house than the high school.”
The atmosphere is coffee shop meets role-players’ game den, which is exactly what it aims to be. There are four of five large tables for gamers and a few little spots for those of us who have retired our game master and PC gear.
Yes, the teenager’s father and I played White Wolf back in the day.
The Teenager ordered chai, which will make our blind friend Nancy very happy to hear that we have found yet another source of chai. I decided to take the 20-sided die challenge. Whatever you roll is your drink, $4, and it’s 50 cents to reroll.
I rolled a 12, which is a large Irish cream macchiato. That is a good selection for me.
We enjoyed our visit, and we especially enjoyed the free homemade chocolate chip cookies.