A brief summary for anyone new here: I am getting closer to 48-years-old every day. I have spastic diplegia cerebral palsy which is a bunch of fancy words that mean my leg muscles don’t relax, my brain and my lower body don’t communicate well, and my hips, knees and ankles don’t work efficiently or even have a normal constitution.
I walk funny— I have an abnormal gait where my leg scissors and I toe walk. Decades of walking funny can cause wear-and-tear on the body.
But the last six weeks have thrown some new challenges at me: high blood pressure, unusual falls and now atrial fibrillation with rapid ventricular response.
Last night I got a massive splinter deep in my foot, in a place so deep that we couldn’t dig it out without really tearing a hole in my foot. So I asked the Teenager to slap a raisin on it and she did.
This did draw the splinter to the surface more but I haven’t removed it yet. The start of my last raisin-splinter journey happened a little more than a year ago. Read about that here. Especially if you want to hear how my splinter improved my gait and my hip pain and how the raisin and my cockatoo got the splinter out.
I visited Nicole Jensen of Back in Line Chiropractor and Wellness Center today— where she commented how loose everything was and how my body parts were all facing the right directions.
She got me ready for physical therapy where I’d be the youngest person in balance therapy today.
Physical therapy for balance and fall prevention
I have spent a lot of time in physical therapy — about every two years I turn up for few weeks with a physical therapist because even though a lot of it tends to be a repeat and I know what to do, it’s important to have an outside professional evaluate my status so I know I am doing the right thing for the problem.
In this case, we discovered:
The physical therapist approved of some of Nicole’s phrases for things— like “make my feet do feet things.”
My fitness coach Andrew and I are doing all the right things at Apex Training, using my sense of my body and Nicole’s insights on what my innards are doing.
The physical therapist is also impressed at my capacity to manage to take what could be catastrophic falls with relative ease. The Teenager says it’s because I “puddle,” relinquishing myself to the process instead of fighting it and tending up.
My static balance is impressive, but my dynamic balance “throws everything off,” meaning standing still I’m good, but moving or on an unstable surface, the issues can occur.
We will be working on exercises that open the hips and rotate the knees outward. And doing some gait work with a zero-gravity treadmill.
The physical therapist was also impressed with my ability to self-correct my gait, but I don’t know if he picked up on how much focus and energy that requires.
I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.
Meanwhile, forgive the cornucopia of prepositions in that title.
And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.
The disability/cerebral palsy/dog stuff
As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.
I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.
I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)
Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.
But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.
My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.
And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”
The Stitch Fix stuff
I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.
Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.
Or I’m guessing will lead to termination.
I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.
So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.
I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.
I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?
The fun Stitch Fix (fashion) stuff
There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…
And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.
I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.
The boring stuff
Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.
So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.
It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.
I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Creamflavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.
The importance of exercise when you have a disability
Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.
(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)
Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.
That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.
And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.
These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)
In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.
Mundane things like food and mail order packages
Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.
Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…
I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.
I had a mammogram scheduled for this morning with my “regular” radiology tech. I went into work late, which meant I could sleep in and isn’t that the best way to start a Monday morning? At five a.m. I woke and starting cuddling my foster cat, Tripod Louise, debating whether or not I should get up. I normally rise for work at 4 a.m. so I have time to do Parisian Phoenix stuff or creative writing before clocking into my shift at 6:30 a.m.
But as I lay there at 5 a.m. today, I realized that I had set up the delay feature on my amazing coffee pot, and yes I still adore my Ninja K-cup, travel mug, and standard carafe brewer. I had coffee waiting in the kitchen. If I waited much longer it might not be fresh. If I fell back to sleep, it might not even be hot.
I fed the fat cats their weight management food and went downstairs where I promoted my latest idea, the photo scavenger hunt book. Check Parisian Phoenix’s submission page for more info.
I arrived at the hospital for my mammogram at 8:05 a.m. I went into the lobby and grabbed my registration number. Luckily it was two away from the last number I heard called. I started rooting through my purse for the doctor’s order and found it crumpled and stained with coffee.
A Dose of Anxiety
While I don’t normally suffer from panic or anxiety, when my stress levels increase I am prone to physical sensations of anxiety. And I had forgotten how stressful I find doing any outpatient procedure at the hospital. Grab a number, sit in the main lobby, go to the registration office, go across the hall to radiology, check in at radiology, get called to mammography, traverse the hall, get changed, go into the mammography suite, chat with the tech, get smooshed.
It’s a lot of steps in rapid succession. I could feel my hard pounding and had to keep inhaling deeply through my nose to keep my chest from closing up.
Was I nervous? No. Afraid? No. Shy? No.
It was pressure. I felt rushed and out of control.
Building Up Another Woman
Once in the mammography suite, I learned my favorite tech would be retiring in eight days and staying on per diem because if she works one day a month she will maintain her medical insurance.
I told her I was happy for her, but also disappointed, because she did my first mammogram and she always made me feel comfortable. I told her I’m sure she helped a lot of women and that I hoped she enjoyed every minute of her retirement.
She called me sweet.
And she remembered me by my tattoo. Which is on my breast.
When I left the hospital, I got the sweetest text that our foster kitten Jennifer Grey (who moved to the Teenager’s room last night for better socialization) is adjusting well.
Forgive me, but I’m finding myself too exhausted to continue,
so from this line down, I am writing about Monday on Tuesday
4:30 a.m. Tuesday, drinking exceedingly strong coffee as prepped on the delay setting by the Teenager.
Measuring Challenge at Work
My anxiety from my hospital visit followed me to work. I clocked it 9:07, which made it hard to do the math of where my numbers should be for the day, but I settled on a total of 85 fixes. And I hit 85 fixes. I was at a table on the right, not my regular table on the left, which meant a subtle shift of balance and more pressure on my right hip. The warehouse outbound supervisor herself brought me 22 refixes, or the work already in a box, which were pivotal in keeping my numbers where I wanted them.
I heard rumblings among my colleagues that no one is hitting “full performance,” so I’m not the only one. We were joking at lunch that in a few months they may reduce their workforce by 50% if they dismiss everyone not meeting the new numbers. I don’t think they’ll do that. The company has always been more than fair in the past. At lunch, Southern Candy gave me homemade fudge. I ate too much of the deliciousness and spent the next couple hours a little queasy.
The murmurings report that employees that are shared to other departments must still hit 90% of the new numbers and that their performance in those other departments will count toward their monthly miss-the-mark allowance.
The goal for my department is 16.25 per hour, but does not include time off for our ten-minute paid breaks. So I use my own numbers. Hour one should be 17, hour two also 17, then ten minute break, and 15 to finish the third hour to reach the official numbers. It’s two more hours until my lunch, and I try to maintain 17 per hour to “make up” for our final ten-minute break of the day.
So I missed two hours and 37 minutes of work yesterday. If I divide one hour (60 minutes) by 16.25, I get 3.7 minutes per box. (For argument’s sake, let me point out that doing the same using 17 unites is 3.5 minutes. So we are talking about the impact of seconds, but it adds up.) I missed 157 minutes of work, so using their numbers I should have lowered my goal by 42.5 fixes but I couldn’t do that math in my head. We are six days into the new system and I’ve already missed my two days a month. I thought I made it with 85 fixes, but my official target might have been 87.5. That means I did 97%. We’ll see what they say today.
I know I talk a lot about the numbers at work, but honestly it’s part of what I love about the job. 1. Numbers don’t lie. You can discuss why the numbers are what they are and develop strategies to meet them. I find calculating the numerical benchmarks to be soothing and an objective way to see how my day is going. And, while my employer would hate to hear this, it’s a good reminder that sometimes you can’t work harder only smarter and not everyone had the capacity to hit 100% of arbitrary numbers every day.
The calculations and my podcast keep my mind busy and allow me to brainstorm what I need to do for my publishing business. If I have to work full-time, I would rather work the blue-collar warehouse job than a white-collar office job that destroys my intellectual capacity and short-circuits my brain with stress. 2. I preserve my creative energy for myself. Listening to publishing-related podcasts, various sources of news, other creators and even some bizarre non-fiction stories keeps my mental focus on my goals and allows me to give my full effort to my employer while still working toward my personal goals.
3. I love the clothes. I have followed Stitch Fix since they launched, when The Teenager was a preschooler and I still had a subscription to vogue. I love seeing, touching and preparing the clothes for their clients. I love seeing the fixes, their color combinations, their textures and I love imagining the person who would wear them. I also like to make judgments of whether or not we could be friends based on their box. Because if you’re on fix #72 and I think all the clothes are hideous, that’s your style and we can’t blame the stylist or the algorithm. And since I write fiction in the fashion world, I love seeing the new trends and which items become perennial offerings.
I also took two muscle relaxers, after not taking them during the weekend. I’ve been curious if some of the strange feelings I have in my legs are from when the muscle relaxers wear off or from missing a couple chiropractor appointments due to other doctors’ visits. The jury is out– but the bottom line is with the muscle relaxers, working out and chiropractic care my body moves easier.
A much awaited visit to Back in Line Chiropractic
After work, I filled my water bottle and headed to my friends at Back in Line Chiropractic and Wellness Center. Not only is former physical therapist and chiropractor Nicole Jensen super smart and personable, but the staff contributes some extra care as well. When my schedule got out of control, office staff person B (as I don’t know if she would want me calling her out in a public forum) made sure I got not only one but two appointments so I could survive the holiday season with my mobility in tact.
I apologized to Nicole for letting three weeks go by without an appointment, and reassured her that I did not fall out of love with her. I summarized how life had gotten away from me, and by the time my trainer Andrew noticed that my legs were turning inward in an unusual fashion and I noticed I felt like the Tin Man in the Wizard of Oz, I luckily had called B and had my appointment on the books.
The noises my body made were brutal, but it’s a weird feeling when you stand up and your feet and legs feel loose, move freer and have a more easygoing gait. It’s disorienting. But it’s a good reminder than sometimes I need more help than I realize.
Nicole then shipped me off to Andrew at Apex Training.
The brutal workout at Apex
I love Andrew. I really do. I respect the way he has learned my quirks and can read my form. He has learned ways to troubleshoot what my podiatrist calls my “challenging gait” due to my cerebral palsy. But last night was a killer core and shoulders work out. It was awesome, and murderous. I am gaining so much upper body strength and am very impressed with my lower body function gains.
We missed some workouts recently because Andrew caught a cold and then took some family time for the holidays, but I told him it wasn’t fair that he was punishing me with heavy weights when we lifted and high reps in the more cardio-based exercises. After all, he had canceled not me.
Needless to say, when I got home I ate the lovely dinner The Teenager (lamb, broccoli and hand-cut, homemade parmesan fries) prepared and collapsed in bed. To wake at 3:56 a.m. before my 4 a.m. alarm.
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.