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.
This week has been a roller coaster— but isn’t that just the way? People have been telling me I look like I’m loosing weight but I don’t know if that’s true.
The teenager took the dog for a rainy walk at Lafayette College the other day. She sent several very lovely photos.
I have many odds and ends making life out of the ordinary from little foster kitten Jean-Paul Sartre to my dear friend Nan moving from my neighborhood to a senior community.
I ordered a kitchen scale off Target.com to measure Jean-Paul’s growth. He’s up to 1 lb 5 ounces. That was after a big breakfast of pate and kitten milk. He has a hearty appetite and screams for food like any baby does every 4 hours.
He is super inquisitive and smart. He carries tiny toys around in his mouth and plays with our dog, Bean. (Here’s a video.)
Meanwhile, guest fosters Coffee Bean & Pinto Bean are having fun in my room. Khloe and Louise do not like having babies around, but the cockatoo Nala sure does.
For some humor, let’s mention that the Teenager recently discovered that the Morningstar Farms breakfast Pattie’s I have been feeding her for almost two decades are vegetarian. She called her dad to find out if he had been in on this secret.
We never hid that they weren’t real sausages from her and she’s been able to read for a long time. The shock was real, and she’s still talking about it days later.
She didn’t have a chance to go grocery shopping for her nights in the kitchen. I suggested using my Hungryroot ancient grain gluten free pancake mix and the Morningstar sausages. It was a lovely, hearty breakfast-for-dinner. And like she had accused me of when she first discovered my fake breakfast meat, “It was all a lie.”
The teen also got her first fix from Stitch Fix and it came from the warehouse where I work, the Bizzy Hizzy. Click the photo to see her unbox.
Speaking of work, I took voluntary time off on Monday and my stats were 100%, 88% and 98%. Andrew at Apex Training has been working be hard with exercises like split leg squats. My quads feel it. My balance is improving, my aches and pains feel like muscle fatigue and not deeper pain or joint issues. I have caught myself almost falling several times, and can sometimes feel my leg scissoring or even notice my left foot dragging behind before it trips me.
Even my chiropractor, Nicole Jensen of Back in Line Chiropractic and Wellness Center has made comments about how well my body is moving and how things are improving. Today she said my right side was locked up, when it’s usually my left, and that everything went back where it belonged easily.
When I hopped off the table, she told me to look at myself. “I have never seen you stand up with your feet so firmly planted and your poster straight,” she said.
And I felt it, I felt really solid.
So I don’t know if this is where I confess I tried the new Wingstop chicken sandwich. Most of my diet lately has been vegan. But last night I hadn’t had dinner, it was 8 pm and my body was devastated (in that good way). I could barely move after my shower. I considered skipping dinner.
But then I thought about my food intake for the day:
4:30 am: Supercoffee dark roast with half and half
5:30 am: Wawa coffee con lèche (it was a bribe to make myself go get gas)
6:30 to 8:30 am: 20 oz water
9 am: Kind Peanut Butter Breakfast bar and about 3 oz cranberry juice cocktail
9:30 to 11:30 am: 20 oz water
12:15 pm: quinoa with roast zucchini, white beans and my home canned roasted tomatoes, 6 oz Diet Pepsi
2 to 5 pm: 20 oz water
5:30 pm: sunflower seeds
6 pm: 12 oz cucumber water
I thought a chicken sandwich would be good for protein and I saw the commercial for Wingstop’s new chicken sandwich on Hulu. It was good, not as big as I thought a sandwich from a chicken joint would be— but to be able to slather any sauce from their menu on our was really cool. I had a mango habanero sandwich and a side order of the honey hot rub boneless wings. It hit the spot.
I did (I think) 105% on Sunday at work, 105% yesterday and woke up stiff and with my right quad tight and spasms in my calf. I only did 93% today, but I feel better now. And the dip in numbers had more to do with some chaos in the warehouse versus my cerebral palsy issues.
Regardless, I must admit I was a little relieved yesterday when my fitness coach Andrew from Apex Training postponed my workout.
The teenager proposed going to Applebee’s for dinner, her treat, as she didn’t feel like cooking. She also demanded I order a cocktail as I think she wanted to make sure I drifted off to bed as early as possible. (8 p.m.)
The teenager loves Applebee’s— for a child raised in all sorts of Mom & Pop restaurants where we often knew the owners, she certainly loves her boring old franchise Applebee’s.
I realized that if you took any item with chicken tenders away from the menu, you’d lose more than half the meals available. And if you didn’t want bacon on your hamburger, you had three choices: the quesadilla burger (which we got), the plain old burger and the Beyond veggie burger (which was $14 and came with nothing but lettuce, tomato and pickle).
The quesadilla burger was a mish-mash delight (I chose my margarita for the artificial Latin theme) but had to be eaten with a knife and fork.
When I arrived home, Opie and Fog (two of our personal cats) joined Khloe and Louise (foster cats) and Nala (Goffin’s cockatoo) and Yo-yo (parakeet) in my room for the night. Fog tries so hard to be Louise’s friend— and she is slowly (after more than a year) getting braver and more confident.
Finally, for those that are wondering… I ruptured my tendon in my ring finger April 15 and had “mallet finger” and a cast for nine weeks. My specialist released me July 25 and expressed his disappointment that my finger was still a little off.
I use my hands so much at work, so I still splint at night. I must say it feels like and looks like the finger is getting stronger and straighter every day.
It’s just about to turn 5 a.m. on Tuesday morning. The last 48 hours have been emotionally difficult, and those are internal challenges I have resolved within myself but now I need to “make right” in the world.
My good friend Joan (the talented photographer) had quipped that the moon is in “Frustrato” phase and perhaps that is accurate.
Sometimes it’s nice to blame the universe instead of accepting our part in the mayhem. Because even good intentions spark fires.
I heard a podcast yesterday; I believe it was an economic one, that asked if one host was “a glass half empty or a glass half full kind of guy.” He replied, “it’s just half.”
That’s too much enigma and philosophy for pre-dawn hours. Blame the fact that my trusty espresso machine only filled half my mug.
The teenager and I had 14 kittens in the house Saturday, Sunday and Monday offering temporary lodging for these babies whose official Feline Urban Rescue and Rehab foster families have gone on summer vacation.
They were so much fun to have around, but 11 went home last night. This led the Teenager’s officially adopted foster fail Mars of the Roman Pride distraught that his friends had gone. He screamed until the Teenager released him into “gen pop” where he plopped himself down in front of the remaining visitors.
On Friday, I had a rather grueling session at Apex Training with my coach Andrew. We did some intense work on balance and single leg muscle stability. On Saturday, the communication between my brain and my lower body felt rickety (for lack of a better description) and it was challenging to move. By Sunday, the movement felt smoother but my phone was registering spikes in walking asymmetry. But something very interesting happened Monday— I could not only stand on one leg, but I could also hold my leg in a few seconds of a quad stretch.
Yesterday, I visited the Stitch Fix employee store, which resulted in a good news/bad news scenario. I bought myself jewelry on an impulse and discovered my second holes could still accept earrings. As someone who really grew up in the 80s and graduated high schools in the 1990s, I have three sets of holes in my ears.
I bought the Teenager some new things, including some warm hiking style boots for fall and her dog walks. I bought myself an adorable pair of shorts, and I picked one size up from my pre-existing Stitch Fix clothes and they were too small.
Obviously my efforts to reduce my recent (as in pandemic era) weight gain have been not sincere enough. Sigh. I’m trying to eat better and move more without falling into a strict/restrictive mindset.
But I did eat an entire medium pizza from Domino’s the other night. It was a medium hand-tossed crust, light on the cheese, light on the garlic Alfredo sauce with red peppers and pineapple.
On the way home from work last night, I noticed that the furniture store looked abandoned— and that the sign merely said urn.
In the background of all of this, the ‘cat book’ from Parisian Phoenix has hit some unexpected difficulties prompting a delay in its production. But my quick thinking, after a few hours of pondering, have inspired an interim release of a mini cat book featuring advice and stories about the care of cats. The larger book will come later, perhaps in early 2023.
In the meantime, I am very puzzled why my sweet tripod foster Louise has decided to crate herself.
And the most surprising item of the day was receiving my first catalog for Parisian Phoenix Publishing— Uline junk mail!
I suppose the last update is that the people at Susquehanna Service Dogs have cashed my check for the application fee. I’m anxiously awaiting contact.
To say life has been hectic feels like an understatement.
“You better put in that application for a service dog.”
We hadn’t even made it half-way down our block and I already stumbled and fell. The teenager, her dog, and I had left our house at 7 p.m. on just another high-90s day. We were headed to CVS for ice cream.
The CVS is a 2,000 step walk— there and back— so we thought it would be good exercise for the whole family.
Plus, I had about $3.75 in Extra Bucks and a 40% off coupon. A pint of ice cream is $6.99 at CVS so I grabbed a whole bunch of singles and a handful of change.
The dog behaved really well on the walk, but my left foot did not— it kept twisting under me. I felt like I had to lift up my feet in exaggerated steps not to fall. Like high knees marching.
I stumbled twice on the way home but did not fall again.
The teenager made her remark about the service dog. I’ve spent a lot of time with her dog this weekend and thought… just imagine if this dog were useful.
I already did 90% of the 54-page application packet. I talked to those people I want to be my support letters (the teenager and my neighbor, as they would be my literal supports) and my references: the teenager’s father, cat foster godmother (who used to be a social worker) and my long-time therapist (whose wife is a physical therapist).
That leaves one thing: the medical evaluation. My own insecurities make it very difficult for me to ask for help. And it’s taken a long time for me to learn to speak up and out and advocate for myself.
I am nervous to ask my doctor— my family doctor of more than a decade— to do it. Part of me wants to wait until my appointment on August 19. But if he says no, that only leaves me two months to find someone else.
I think I need to call the office tomorrow and leave him a message to ask if he’d do it if I bring the paperwork August 19, or sooner if he wishes.
Again, I have doubts. What if I’m not disabled enough? I don’t want to waste anyone’s time. I don’t want to take a spot away from someone who needs a dog more than me.
But I’m struggling and I’m scared and I’m getting older. And I can do so much on my own but a dog would give me that much more.
I spent a lot of time on the application. Pretty much a whole day. What do you want the dog to do? What’s your typical day? Do you work? Do you volunteer? What are your interests and hobbies? Do you own a home? Do you have pets? Who lives with you? Do you drive? Can you handle travel? Can you take care of the dog? Are you able to train the dog?
If I can get ahold of the doctor’s office, as soon as I know someone will fill out the papers— I will tell my letter-writers and references to do their thing.
My therapist and I had a chat about it. His professional association discourages therapists from doing medical evaluations for service dog applications, but since I was asking for a reference, he was okay with that. He had no idea how many things a mobility dog could do.
He mentioned that in our current times, the emotional support animal and assistance dog phenomenon seems to be getting more and more prolific but that in my case, I’d obviously put a lot of thought into it, done my research, and found a program that could really benefit me.
Fingers crossed, I guess.
Oh, and the ice cream… it was $1.86 after my discounts. I had a $5 bill, five singles and 87 cents in my pocket. I paid exact change.
A while ago, the teenager suggested that I needed a mobility dog and someday she would train me one.
Well, with all the mishaps and falls I’ve had since April (mallet finger, smashing into a brick wall, almost breaking my glasses falling literally on my face, falling into the bathtub and whacking my head on the ceramic tile wall and my personal favorite falling through the screen door), I did some research and thought the beautiful, dog-loving teenager might be right.
I had previously blogged about why I thought a dog would help me and I also thought a first dog should come trained and the teen, approaching young adult, could learn from this one. Just like I would.
I requested an application from two organizations. The closest to me was Susquehanna Service Dogs near Harrisburg. They sent me an application today. I have three months to fill it out.
The application requires my demographic, medical and lifestyle information, plus the financial statement saying that I will pay the $5,000 necessary if I get into the program. I need two letters of support— they need to come from people who support me having a dog and promise to support me and the dog together for the life of the dog.
I also need three references.
And a statement from my doctor.
I just thought I’d document my thought process and journey here. Because I’m hopeful, and doubtful, excited and afraid.
Do I want a dog? Can I handle the commitment? Am I the right kind of disabled to benefit from a dog? Can a dog help me be safe? Can I maintain an active lifestyle? Will they see how a dog would protect my independence?