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.
Last fall, at work, before we even suspected they were eliminating our shift at the warehouse, our company launched what they called communities to represent and discuss certain voices across our network.
Black Lives Matter, Latinx and women were three of the communities— as was a community for people with disabilities.
I joined the community for employees with disabilities, but at the launch Zoom meeting I noticed everyone either worked in the office or worked from home. And no one represented the warehouses, but me.
The community had meetings during my work shifts, and the emails seemed focused on neurological and psychological diagnoses. And while those conditions are important and probably impact more of our population in the company than physical disabilities.
I had a brief conversation about this with my boss today as I had mentioned this flaw in the communities when one of my colleagues asked the CEO why warehouse associates across the network couldn’t have more on-the-clock time to contribute to the communities.
This same fellow employee— a member of the Black Lives Matter group— launched a series of Lunch and Learns to promote more involvement in these communities.
She came to my work station to ask me to come.
My boss said he would be there to represent Latinx. When I told him I registered, he replied, “sweet.”
But, what I realized in discussing this with him, was that people with disabilities probably don’t apply for jobs in warehouses. Because we’ve been conditioned to believe we can’t or shouldn’t do it.
That’s why we don’t have more representation in the warehouse. So while I want to know what plans the company has to accommodate people of different abilities, the reality is we need to determine what people with disabilities can do in the warehouse without impacting overall productivity.
But the next question is: am I really the best person to represent this issue? Do I have a choice?
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.
PS —
I put my underwear on backwards today. All day I kept wondering why my underpants felt so uncomfortable.
So someone I know, who shall remain nameless unless she outs herself, tagged me in this Facebook post:
She invited me to consider it, which I would if it weren’t two hours every Friday for six weeks.
Speaking of falls, the teenager asked for some bathroom toiletry storage devices so I bought these:
The wall-mounted shelf is ridiculously sturdy. All came from Target.com.
I “treated” myself to some grip-circles to reduce the likelihood of falling. And they are pretty.
The sight of everything organized made me happy. As did dinner.
Dinner was Banza chickpea rotini with Hungryroot Alfredo sauce, fresh spinach, my homemade roasted tomatoes from the farm and chicken bruschetta burgers broken into “meatballs.”
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.
Nancy in her new place
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.
Click to see what’s in the box
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.
I did not work a full ten hour day any day this week. But you know what? That’s okay.
My stats on Sunday were 105%, then 98 Monday, 88 yesterday and 94 today. What happened?
I don’t know. I was in pain Monday, stiff and uncomfortable yesterday and almost fell today but caught my balance.
And then Andrew at Apex put me through legs. We did split leg squats and he got to watch my hip do the funky angles it does. And I got to feel every fiber in my knees, quads and hamstrings.
Plus, I walked more than 8,000 steps today while my legs were stiff. Well after that workout they are not stiff but jelly.
The Teenager showed one of her dog walking clients some of the neighborhood dogs and their tricks— here is the video.
And then for the final event of the day we went to Waffle House as earlier this month we had heard that August 24 was National Waffle Day.
I had a scrumptious hash brown bowl with egg, cheese and jalapeños.
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 almost bought a pair of potato chips.
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?”
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).
Boring.
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.
Louise (left) and Fog (bottom right)
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.
My finger after a ten hour shift August 15 — four full months after my accident.
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.