I know I haven’t written in a while, in part because I felt redundant talking about my business endeavors at Parisian Phoenix. The Easton Book Festival was a lot of fun.
I took yesterday off, pretty much just for fun, and I ended up perusing the shows on Motor Trend’s streaming channel, heading to the gym and watching the neighborhood kids Trick-or-Treat.
When I got to Apex at 2 p.m. to meet up with my coach Andrew, he noticed my leg was twisting in. It had been, at that point, one week since my last chiropractor visit. I have my next visit tomorrow. I’m trying to stretch from every seven days to every ten.
So after a rugged leg day with Andrew, I went home and checked the measurements on my phone for my walking asymmetry. I haven’t had much recorded in the last few weeks.
But Andrew was right… The asymmetry measured 4%. I’m not sure what that means, but it does coincide with my legs malfunctioning.
I woke up with sore quads from leg day. And my whole work day was a struggle because my hip was out-of-whack and my legs felt heavy. And my middle toe on my right foot kept burning.
I finished the day at 85% and it was brutal. It’s difficult for me to straighten up. On the way hope, a pain filled my toes so badly it up my leg as my foot began to spasm. Felt like some sort of nerve pain.
The phone registered 9% asymmetry and I keep getting pains down my right leg that make it hard to stand.
I took off my sock and my toe closest to my big toe is red, maybe a pinch swollen, and very tender. The flesh almost felt like it might be developing a blister, but no indication that fluid is gathering and the red pattern seems to be jagged versus the round shape caused when something rubs. The dog did stomp on it yesterday with all her weight from a leap so maybe she damaged something inside.
I washed it well and soaked it in Epsom salt but no change.
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.
During one of my recent doctor visits, I think it was at the end of August, my physician asked how my strength/fitness personal training sessions were going.
I told him my coach Andrew at Apex Training put me through some demanding stuff so I was in agony pretty often.
My doctor laughed and said that if Andrew was doing his job well I should hate him.
Well, today was the closest I ever came to thinking he might kill me.
Now, if you are new here, please note I have diplegic cerebral palsy (which basically means that my brain and my lower body muscles don’t communicate well, which has led to some structural issues in my hips, legs, etc.
I work out three-times-a-week: Monday, Wednesday and Friday. Andrew has his full-time job, which is primarily an overnight shift, and I work at a warehouse Sunday through Wednesday, 10-hour-shifts.
Mondays are always interesting. I am 50% through my workweek and Andrew is usually sleep-deprived.
By some miracle, I work 6:30 am to 5 pm and head straight to the gym, and Andrew comes to the gym, often having not slept for almost 24 hours. But he shows up and so do I.
Tonight was a full body workout that felt twice as intense as my normal routine, but it felt amazing to push myself and even more amazing to succeed.
And because Andrew knows what I’m feeling — not only as a person working to better myself physically but also as someone still grieving the loss of her father— he forgave me for eating half a cake for my dad’s birthday.
But I also asked him if some people had stopped working out three times a week. He say yes, that several of his clients were sporadic. One changed work schedules and hadn’t committed to a new time. And two of us were regulars.
I get life being in the way. I know it’s hard. I know it’s expensive.
But I encourage you to stick to it.
I started at Apex in August 2021. Somehow despite a tight budget, I find the money.
And for all those people who can’t stick with it— I promise:
You will see mental and physical changes in yourself.
You will feel better.
Your body composition will change.
Your fortitude will grow.
And you should also see changes in your balance, stability and coordination. The things you can do, whether stamina on a long walk or moving furniture, will improve. Your confidence should increase.
And some days it will feel grueling. Some days you will be exhausted or achy and not want to do it. On those days, tell your trainer how you feel, but show up for the workout and do your best.
Andrew, my strength and fitness coach at Apex Training, has reached new levels of sadism.
I said that (partially) in jest because I love to see his face get that pensive squint when he’s digesting my regular updates of how my body feels and what my other professionals report about its function.
I feel like since my finger recovered from my burst tendon, I’ve reached new heights in stamina and my own strength. Last week, I hit a PR (personal record) with a 35-lb dumbbell row.
And things just feel like they are moving better. I’ve stumbled more than usual, but caught my balance 90 % of the time. I have less pain and I think I understand the pain better.
I’m working out three times a week and doing movements, with support Andrew has designed, like split leg squats that are torture (in a good way) and that I never thought I could do. I even work out after my ten-hour shifts at the Stitch Fix Bizzy Hizzy warehouse.
It’s hard, and exhausting, but I really think it helps get blood flow into all my aching parts and aids my sleep and ultimate recovery.
And today Andrew let me beat the big tire with a mace.
Speaking of Stitch Fix, the company has opted to move the Sunday to Wednesday 10-hour cohort. We get to choose which of the remaining shifts we want to transfer to and I’ll be putting in for the remaining 10-hour cohort, Wednesday to Saturday.
Frankly, the idea of working 5 days a week is horrifying. And I’m not thrilled with the prospect of losing my current shift.
But a warm gluten-free brownie sundae with Ben & Jerry’s cannoli ice cream softened the blow.
I put my underwear on backwards today. All day I kept wondering why my underpants felt so uncomfortable.
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.
Despite high heat and humidity and a general lazy attitude, I drag my ass to the gym three times a week.
I’m feeling good. Gaining strength. Still not losing weight but the stamina is improving and body parts seem to be gaining definition.
My fitness coach Andrew at Apex Training and my chiropractor and physical therapy guru Nicole Jensen at Back in Line Chiropractic and Wellness Center had a lovely conversation on social media that tickled my heart.
But then… a strange incident happened today that I take as a compliment. I was walking home from the gym when a stranger stopped me.
“I don’t mean to be all up in your business,” this stranger said to me on the street, “but you seem to not be limping. You used to really favor that one leg.”
Ummmmm… I know my town is small but I didn’t know it was that small.
That reminded me of a list I made the other day. I was thinking about what I would do to improve my fitness if I had more resources. And that should be considered self-care.
And I’m proud that I’ve made a financial and personal commitment to my training, even if I haven’t had the same discipline with my diet.
So here’s my unorthodox approach to maintaining my physical and mental health… if I had more resources.
In addition to my personal training and regular chiropractic care, I would pursue:
hot yoga. I’ve heard it is fantastic for stretching and relaxing the muscles.
Private dance lessons. My doctors and physical therapists keep telling me about stretching, and at one point I was doing these video tap-dance lessons at home. The foot movements in the tap steps are exactly what my doctors tell me to do. But more fun.
Massages. This is another one of those things they recommend for spastic muscles.
Facials. Cerebral palsy is a neurological condition so I need to make sure that I balance not only my physical health but my stress levels, too.
Professional Nail Care. Regular manicures would keep my confidence strong. And foot health is extremely important. And I need help trimming and maintaining my toe nails.
Chiropractic care. So, I go to the chiropractor every one to two weeks. It’s pretty much the one thing that provides relief to my achy joints and stiff muscles. But I would love to have a regular weekly appointment that I didn’t have to worry about payment.
Mental health therapy. I have an appointment with my therapist about every six weeks, but that’s another one I would like to be more frequent. Because of my mindset “slips,” my physical health will follow.
Competitive sports. If I had more resources, or perhaps had a job that didn’t demand so much physicality from my body, I would love to commit to a strength sport or to running a 5K with a coach to guide me.
Food. I love food shopping and I enjoy cooking. I just wish it were easier to afford the right kinds of food that nourish, maintain and heal the body.
Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).
We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.
The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.
Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.
I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.
“It’s a blessing,” the man said.
Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.
I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.
My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.
I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.
I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.
His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.
When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guruNicole Jensen of Back in Line Chiropractic and Wellness Center.
I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.
My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.
Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.
My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.
I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.
I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?
I opened it.
I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.
I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.
Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.
I mean, I suppose I didn’t have to, but it seemed only fair.
That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.
We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.
I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).
Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.
She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.
He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.
He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.
Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.
She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.
“You’re still here?” I said.
“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”
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.
Sometimes, these entries feel repetitive. I hope they don’t feel like that to you, the reader. But, in many ways, life is certainly repetitive.
Whether it be the old house always needs attention, the dog is always sick, a struggle with weight, mental or physical illness, a bad boss or money problems, each of us seems to have that troubling thing with which we grapple.
If you don’t have that thing, I would love to read your memoir (or maybe not— I might throw it across the room).
So if you keep stopping by or my blog posts keep popping up somewhere in your life, I know I’ve been talking about cerebral palsy a lot. It’s that thing for me, especially right now, as I topple through the second half of my forties.
I have spend most of my life— until the last decade really— denying that that thing made my life difficult. I laughed off accidents, tried to hide my legs, carefully picked my shoes and didn’t talk about it.
But also, and very important in the chronology, until that point, it hadn’t really been an issue. I occasionally feel down, scraped some knees and hands and laughed about it.
But then I started breaking bones, having issues with my spine and hip, and when I fall now, it’s more serious that wash up some scraped flesh and laugh it off.
So, if you don’t already realize, these blog posts are meant to be informative for those seeking situations involving demiplegic spastic cerebral palsy, but also chronicle my acceptance and journey into how to live my life with my disability instead of pretending it doesn’t exist.
We’re learning to co-exist, cerebral palsy and I, in a way that allows me to stay active, be whole, and keep myself safe.
On Monday, I had an uncharacteristic fall at work that seemed to come randomly out of nowhere. I wrote about it here. It scared me because it didn’t feel like my other falls.
I left work at 11 a.m. and came home to rest and write and emotionally decompress. I was scheduled to go to the gym at 6 p.m.
I texted Andrew, my strength and fitness coach at Apex Training. He moved my session to earlier in the day and The Teenager and F. Bean Barker accompanied me to the gym to study my walking and confer with Andrew about the possibility of a work out.
We scarcely made it two blocks and The Teen says, “Holy Shit, Mom. You’re right knee is hitting your left leg. You can’t feel that?”
She proceeds to mimic my gait. After half a block, she looks back at me and says, “No wonder your body hurts so much all the time, my hip is killing me already.”
It might seem mocking for her to imitate me on a city street, but for me it’s helpful since I can’t see myself move. That’s why I also like her accompanying me to various assessments as she has no problem telling doctors, “She’s having a good day today. When she’s tired that leg is much fuckier.”
She and Andrew studied me and they stared in bewilderment. They agreed that my left hip was definitely out-of-whack. The Teen left and Andrew got me stretching and doing a thorough workout that safely challenged the muscles that seemed to be malfunctioning.
As happened on Monday when I was achy, the workout made me feel better (which is why I didn’t want to cancel). I have never been good at not overdoing it, so the concept of “being gentle with myself” as my therapist says and “taking it easy” (both emotionally and physically) as my dad would remind me if he were still here, does not come easily to me. It’s especially hard because spasticity means my muscles don’t relax, so motion and exercise really can relieve my symptoms. But if my issues are joint and/or fatigue related exercise can make it worse. And I don’t often know which course of action will help.
I proposed this theory to Andrew: Since cerebral palsy means the brain and the nervous system can’t always communicate, I feel like sometimes those messages goes haywire. That’s when a good, supervised workout (where Andrew can guide my motions and direct me as to what body parts are doing unnatural things) helps my brain re-learn those communication skills. The muscles start to do what they should do because I am thinking consciously about how to do it, which helps the muscles get into the groove, and from there muscle memory takes over, and through doing, the brain resets.
Just my theory.
I woke up Thursday morning with minimal discomfort from my fall (and a new lump and bruise where I walked into a weight bench at the gym, which made Andrew feel terrible). I was looking forward to my appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center on College Hill in Easton, Pa.
Her daughter had joined her in the office. That made it interesting to have a different kind of conversation about my condition. I was a good example of two things: every patient is different and some patients have self-awareness about their body. And according to Nicole, I am one of the most self-aware in the practice. I was also an unusual example of someone who often “does better” in heels because of the fact that my heel parts (tendons? ligaments?) are so tight. I’m a toe-walker. My heels natural fall at an angle so a slight “kitten” heel replicates the shape of my feet.
I told Nicole about the latest “random” fall and this worried her, because she’s noticed (and I have tracked on a calendar) that my falls have gone from every six weeks to every two weeks. I mentioned that I applied for a mobility service dog through Susquehanna Service Dogs. She loved this. She agrees that I am the perfect candidate for this and that a dog could be a game changer.
I explained that I had mailed the application last week (Friday to be exact) and that The Teenager and Little Dog’s Mom had said they would write my letters of support (which means they support the placement of the dog with me and will take responsibility for making sure I take proper care of the dog once it is in my home). The Teenager planted the idea of a service dog in my head and it took some time, research and more falls to help me accept the idea that I have a disability and that a dog would be able not only to help, but would probably improve (and protect) my quality of life. The Teenager works for a local pet care company.
Little Dog’s Mom has known me for 20 years, trusts me to care for Her Ladyship Sobaka, and is a very responsible dog owner who takes often thrice-daily walks and has a magnificent fenced back yard. A potential service dog would have my small yard for potty breaks and the opportunity to run and play across the street at Little Dog’s house.
My doctor’s office assured me that if I bring the medical assessment form with me to my August 19 check-in, that my primary care physician would not only fill out the form but he would also do it while I was there. I asked my estranged husband of twenty years (and The Teen’s father), the president of the cat rescue where I foster (who left the social work business after decades to open Apricity Pet Care), and my therapist (who has known me for a decade and whose wife is a physical therapist) to fill out the personal reference forms. They all agreed. But back to the chiropractor…
Nicole also said to stand on one foot throughout the day to stabilize my leg muscles. Physical therapy is a fascinating science, the simplest movements can impose the greatest change. My blind friend Nancy discovered that a good portion of her shoulder pain and finger numbness stemmed from not stretching her neck up. As a blind person, she never has a need to turn her head toward the sky or ceiling or someone speaking from the stairs or seeking something on the top shelf by looking for it.
When her very clever physical therapist suggested stretching her neck regularly, her symptoms decreased significantly.
There it is. A lot of words. A lot of thoughts. I’m hoping this post will give you food for thought, reassure you that I am not totally a disaster waiting to happen and/or offer you information on my journey and hope for you if you need it.