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.
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.
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.
It’s 8 p.m. on a Wednesday night. I just finished a rather strange Chinese take-out meal after a long work week and a hearty work-out with Andrew, my strength and fitness coach at Apex Training.
Hit another PR I believe, a 35 lb dumbbell RDL.
My performance at work has been stronger (by my calculations Sunday was about 104%, Monday 98% I think, 100% yesterday and 99% today). I finally replaced the company-issued box that Gayle doodled for me with a stadium backpack with my supplies divided by department. My box has gotten super messy and it was ripping.
Amidst all that, I still find myself dwelling on the fact that Friday, September 30, is my dad’s birthday.
It makes me so sad. It’s the first one without him here. He missed the teen’s high school graduation, her 18th birthday, her first car accident, buying her first car.
He missed the flood in my house, my dead car battery, and all the other things that happen day to day.
So now is the perfect time to review ice cream.
Last week I had $5 in Extra Bucks at CVS about to expire, and they were having an ice cream sale— so I got 3 pints of Ben & Jerry’s, a bottle of unsweetened flavored sparkling water and an 8 ounce bag of pistachios and almonds for $12.78. It was $30 before my deals.
I picked all “bakery”/cookie flavors.
Over time I made these conclusions:
Half Baked (chocolate and vanilla ice cream with gobs of chocolate chip cookie dough and brownies) was a disappointment. The chocolate ice cream overpowered the vanilla. There weren’t enough cookies and brownies and the ones we did find tasted dry.
Thé Tonight Dough (caramel and chocolate ice cream with chocolate cookie chip cookie dough, chocolate cookie swirls and peanut butter cookie dough) came recommended by Andrew. The cookie chunks were significantly better than the Half Baked, and the Teen and I both wished there was more caramel ice cream.
Netflix and Chill’d (peanut butter ice cream with salty pretzel bits, salted caramel and brownie chunks) might have been our favorite. The peanut butter ice cream complimented the pretzel and brownie accents perfectly.
And finally, in closing, walking home from the gym tonight with the pink & blue swirls of sunset before me, I noticed some changes in our neighborhood. On one hand, the neighbor boy who spray painted his name on their front walk is a senior in high school and his graffiti has faded.
And at another house, designs in sidewalk chalk suggest that the babies born to the kids who were the Teenager’s neighborhood playmates are old enough to stake their claim to playing outside and repopulating our block with youth.
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.
Sigh.
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.
Both the Teenager and my blind friend Nan are musically-inclined. My daughter turned 18 in June and Nan turned significantly older than that in July.
I promised to take them to karaoke. It took a couple months to find an environment suitable for an eighteen-year-old that was also scheduled early enough for Nan and I.
Thursday was the night. After all, under my current schedule, Thursday is my Saturday night.
And it turned out there were two options in the same town. I found about one rather late in a new restaurant but hosted by someone I know. The other was at a more familiar location, one my family has visited since the Teenager was a baby. Literally, car-seat-on-the-table.
I picked SoMa Downtown Grill, formerly sports pub Delahanty’s on the Square. It will always have a soft spot in my heart because I remember when the building was a wreck and the owners received press coverage from my newspaper for their efforts to rehab it.
My favorite items on the menu were discontinued during their rebrand to SoMa but that has forced me to find new favorites on my visits. I knew this would be a family-friendly location for The Teenager to make her karaoke debut and one familiar enough for me to navigate with Nancy.
I even put a little effort into my outfit and wore my Stitch Fix jewelry. And my new “ultra flare” jeans from Target that I cut off at the bottom because they were regular and not “short.”
Meanwhile, Nan was practicing Leann Rimes in her new suite in her new independent living situation.
And I had no intention of singing.
The only time I ever sang karaoke it was with my friend Ken, who hosted the event (and DJed my wedding). I waited years to try and ended up singing Crystal Gayle’s “Don’t it make my brown eyes blue.”
The Teenager and I busted Nan out from her place and headed to New Jersey, where we arrived early and settled in for some dinner for The Teen and I, and an Angry Orchard for Nan. I joined her with a Yuengling draft. We ordered a goat cheese crostini appetizer for the table, which was a delight.
Nan was the second singer of the evening, with Leann Rimes’ “Blue.”
It took a while for the Teenager to commit, but she and I did a duet of Barenaked Ladies’ “If I had a million dollars,” of course, as Murphy would have it, her microphone was off and she asked me to take the part I don’t normally do in our car duets. So she tried again and drug me up there for “1985” by Bowling for Soup.
Khloe
And now that’s stuck in my head.
We spent exactly what I had in cash in my wallet without even trying and Yuengling was on special and I didn’t even know it. We were home by 9:30.
And of course, my cat Fog came running to chastise me for being out later than usual and Khloe leapt onto my chest as soon as she got the opportunity.
I believe I’ve mentioned (way too often) that 2022 has brought with it a lot of household-related stress. We are still trying to get the ceiling fixed with a contractor recommended by our insurance company. The project manager stopped by to try and match the material. They are literally giving me half a ceiling, just the portion destroyed by the flood.
I had my local franchise of Mr. Handyman replace some duct work under my downstairs bathroom. And The Teenager and I are trying to prioritize other household issues that come when you own a house and haven’t performed enough maintenance over 20 years: everything breaking at once.
So, as a attempt at escapism (between the house issues, my medical issues and my volunteer work and side hustle publishing company), I decided to view some of Dax Shepard’s work.
A friend had recommended his podcast, Armchair Expert, when I started listening to podcasts in the Stitch Fix Bizzy Hizzy warehouse. I immediately developed a mental picture of him that turned out to look nothing like him in real life. I imagined him as much shorter and less lean and blond.
And I wasn’t prepared for his big blue eyes.
Since I love Kristen Bell, and it saddened me to learn that she made one of her biggest splashes in Frozen as I am not a Disney fan (but I am a huge The Good Place fan), I figured it was about time I checked Dax out.
And I heard so many of Dax’s guests comment that he is such a talented comedic actor, so I wanted to see.
In my head, I still can’t reconcile how this super observant, intelligent man can portray such goofballs.
As a strong Gen Xer, I can remember sitting in my grandfather’s trailer watching ChiPs. I was hardly more than five or six, and I had a huge crush on John. My mother teased me relentlessly.
The contemporary retelling of this old television series beautifully crafted adult and sophomoric humor and tackled some larger issues in bite-sized moments. I loved it.
And now I’ve started Parenthood. I am ten episodes in. I love the family dynamics, even if the characters are very stereotypical in their basic concepts: the golden first-born son, the high-strung super competitive career woman daughter, the single mom daughter who has to move home in her mid-thirties, and the carefree jovial irresponsible son (played by Dax). But the plot lines and scripts are much richer and convey the major social and economic issues of the day.
I’m very much loving the show’s depiction of parents and teen daughters, especially since I have one of those. Dax’s character Crosby is growing with every episode, and that tickles me as well. The cinematography mimics a cross between a documentary and a sit com.
Angel Ackerman 