Small goals for a rainy day

I don’t have the energy and the endurance that I once did. I can no longer drive myself to clean the house in a frenzy or bake all my bread from scratch.

I’ve gotten older.

My… constitution?… does not maintain consistency. Whereas it used to be my moods that swung, now my body’s functionality waxes and wanes.

So far today I have:

  • Folded laundry, and done another load
  • Did the hand wash dishes
  • Cleaned most of the stuff off the corner table
  • Had a glass of water, and a glass of iced tea
  • Cleaned the cat boxes in my room
  • Fed the bird
  • Vacuumed
  • And made amazing vegan flautas with Hungryroot cashew cheddar

I started Five Days at Memorial on Apple TV while I hung out with the dog.

And made great strides cuddling foster Jennifer Grey.

FURR Foster Jennifer Grey

With my walking being so unstable, I’m extra proud to announce that Friday night I squatted 135 lbs.

I started taking the Baclofen my neurologist prescribed and we’ll see if that makes walking easier.

And I’ve been sleeping 9-10 hours a night over the last few days so hopefully that also means my body is getting some recovery time.

Last but not least, I’ve been trying really hard to reduce sugars, refined carbohydrates and processed foods from my diet to test if that will lower the amount of inflammation in my body.

When success means you think someone is trying to kill you

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.

It feels like a new level of training

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.

The Concept of That Thing, Compliments from the Chiropractor and Ingenuity in Training

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.

F. Bean Barker, hard at work

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.

Navigating healthy limits: I can and I should are two different things

The wounds I acquired last Monday falling through the screen door (yes, there is a blog on that) have mostly healed, except where Bean Dog accidentally scratched off my scabs. The teenager tells everyone it looks like I had a fist-fight with a bear. And we had a family debate over Indian food– the teenager, her father and I, over whether I won or lost. Consensus was I won. (The Indian food came from Nawab in south Bethlehem, who were gracious hosts despite us not knowing that had converted to reservation only for dinner.)

On Saturday, I went to the gym and hit a new personal best with Andrew at Apex Training. I think it was 110 lbs on the barbell for three reps in box squats. My torso, my thighs, everything could take the weight well, except my knees. My knees kissed as I stood up with each rep. It didn’t hurt. It quivered a little, but I definitely had to plant my feet, balance the weight, lead with my thighs and hips and force those knees slowly out. The weight didn’t bother me. My own knees terrify me.

On Sunday, I performed 111% at the Stitch Fix Bizzy Hizzy, which means I shipped 555 items. Goal is 500 for a ten-hour shift, but as I reached higher numbers and saw that 555 was possible, I went for it. After all, both 111 and 555 are lovely numbers. Three prime numbers in a row, twice. Patterns and numbers comfort me. They offer a reminder that while a million permutations might exist, that there is underlying order in the world.

Yesterday I started my shift with refixes at the table in QC that has been assigned as mine for about three weeks. My table, line 4b, table 6, has a manual conveyor line on my left, which is great for my balance but bad for my finger. I hit 162, the daily minimum expectation, but barely.

I was achy, with sore feet and a sore spine, but nothing unusual for a person standing for 10 hours a day. I notice on my phone that around 4 p.m. that my walk was asymmetrical by 1%.

I have averaged six hours of sleep lately, with borrowed kittens and the high heat, so I opted to take a muscle relaxer and sleep versus push myself at the gym. My chiropractor has suggested my recent issues with falls and lack of control in my right leg might stem from overdoing it.

Between the heat wave, the full 10-hour shifts, the general aches and stiffness and the inappropriate levels of sleep, I opted to postpone the gym, take one of my muscle relaxers and sleep. I slept much better, but I could use a solid 8 hours or more.

I’m slowly learning just because I can push myself doesn’t mean I should.

First day back to work at the Bizzy Hizzy after my cerebral palsy-themed leave

First off: 89%

For those of you who know me or follow me regularly, I performed at 89% today after a month of short-term disability leave.

Short answer to how my day was: good. I felt pretty good and my aches and pains at the end of the day feel pretty normal.

Now, for those who want more detail, let’s start at the beginning.

On April 15, I ruptured a tendon in my left ring finger taking my socks off. The nickname for the injury is “mallet finger” because your finger looks like a mallet or “baseball finger” because if you catch a baseball wrong you can sustain this injury.

You can read a more concise summary of those events and my treatment here.

I worked with my hand like that for a week at the Bizzy Hizzy folding clothes for Stitch Fix’s clients, performing at a solid 90%. But… I realized I rely on my left side for balance and stability and using my right side to do everything exacerbated problems I was already having with my right hip and spine as complications of my lifelong battle with cerebral palsy. That has been another journey of mine— learning about my body and how I can work with it to age well.

I often wonder what I could accomplish if my body could do what other bodies do.

So I asked my family doctor if I could take a short-term disability leave from work and focus on building core strength and stretching my hips. Because with this silly finger cast, on top of all my other issues, I was falling twice a week.

Today I returned to work— one ten-hour shift in my home department (QC) before the holiday weekend. I work Sunday. We have a paid holiday Monday. And I have a doctor appointment Tuesday afternoon with the neurological physiatrist.

Returning to work today gave me a way to ease back into it, and allows me to gather data on how my body performs. I can give that info to the physiatrist. If I hurt again by Tuesday, it’s a sign that either:

  1. I am moving wrong, or
  2. I shouldn’t be doing this kind of work with my body.

I arrived at work for my 6:30 a.m. shift and friends greeted me that I haven’t seen. At first I went to the wrong table, but caught my mistake, and corrected myself.

I had a right table, good for my hand injury, and one at a good height.

But then they shut the line down and I moved to a left table that was a tad high for me.

For the first 60-90 minutes, I hit all my numbers.

Eventually, I got a text from Mr. Accordion. I hope he doesn’t mind but I’m sharing his photos because:

  1. They made my day.
  2. I love halupkis.
  3. I don’t have other art for this post.

I don’t think he knew it was my first day back to work but his periodic cooking updates made me smile. Mr. Accordion and I shared an office at my last non-profit job. And yes, he not only plays accordion but usually has it in his car.

A couple times today, I had to answer phone calls regarding the toilet explosion that happened in my house yesterday. The insurance adjuster will be here Tuesday and meet with the teenager. I am working on getting water remediation people in to make sure everything is dry.

At the end of the day, I have a weird uncomfortable feeling in my left wrist and the kind of typical aches and pains that come from being older than 40 and working in a warehouse ten hours a day.

I attribute some of my success today to my personal trainer Andrew at Apex. We did an exercise yesterday that was something he called a variation of a good morning. This had me holding a weight across the back of my shoulders and “hinging” at the waist while using my hips for most of the motion.

I tried to replicate those techniques when I bent down to get items out of the bottom of my carts.

Then, when I came home, the teenager had dinner in the oven. I received a lovely message from a former editor at The Morning Call’s short-lived weekly editions, Chronicle Newspapers.

He said I was a truly good person (for all my work fostering cats) and that he missed seeing me every day.

I thanked him and said he made my day.

He replied that there were many times when I had made his and my boss’s day.

That was my favorite job ever, and one I was very good at.

Also, I tried the blueberry muffin flavor of ready-to-drink Supercoffee. My initial reaction was that it was gross. Will give a more thorough review later.

Another day, another fall

Tomorrow I visit my hand specialist for my one month check up. Tuesday I see my family doctor/primary care physician about going back to work.

The increased sessions at Apex Training have shown me how weak my core has gotten as I struggle with issues in my S1 joint, lower back (retrolisthesis) and hips (femoral anteversion). But the uptick in training has helped me with balance, range of motion, and eliminating hip pain.

But I’ve also learned motion is crucial, as being active, on my feet and doing things is the only way to prevent intense stiffness.

And then after a great workout with Andrew at Apex, I fell on the way home. It’s the second time in a week I just randomly fell. Did I trip over my own two feet? Maybe. Did I just lose my balance? Maybe.

But these are the types of incidents I worry about, especially when I have a cast on my finger and work in a warehouse.

I fell a block away from home. I managed to throw myself into the grass instead of the sidewalk. That saved me scrapes and bruises. But I fell on my face and bent my glasses.

Luckily, the teenager could bend them back.

This time, the disability leave from work, is about gaining strength, learning more about my body and giving myself time to heal. But it (more of it than I expected) also is teaching me about the balance between fighting and surrendering.

The ordinary adventures

So, if you’re a friend of mine or a regular here, you know that I have asked my employer, Stitch Fix, for a short-term disability/ FMLA leave to deal with my ruptured tendon (mallet or baseball finger) and its impact on my right hip.

This means I’ve made a commitment to work with my family doctor, my chiropractor (Nicole Jensen at Back in Line Chiropractic and Wellness Center) and Andrew, my personal trainer at Apex Training.

And to keep my hands warm and not use my finger.

Yesterday, I saw Nicole and we discussed the state of my body and the trade-off I seem to be making— working in the Bizzy Hizzy warehouse keeps me active but causes pain, but not being in a physical job makes me stiff and makes it difficult to move, even when I take the same amount of steps I do at work.

Andrew and I are working on strength, mobility, stability and range of motion.

I had lunch with my mother yesterday, who upon her return home had her dog pass away.

In the afternoon, I spoke with my disability claims examiner and gathered paperwork for her. My eligibility confirmation came through this morning, and I think the actual leave is just a matter of paperwork now.

But paperwork sure is sucking the life out of me right now.

So this morning when the weather looked sunny and conducive to a perfect spring day, Nan and I decided to surprise the teenager and retrieve her hearing aids from the ear doctor. Then, we could grab some cold beverages and visit Bethlehem’s Monocacy Park.

The park is quiet, easy to navigate and has a creek. The birds, geese and fishermen would offer entertainment for Nan, as between the water and the animals there would be nature to hear as well as see.

It was a fantastic way to bring some stress-free moments into running errands.

After a modified upper body workout with Andrew, Joan stopped by and brought me an early birthday gift from the residents of Plastiqueville.

A hat!!!!

The hat was not for me but for my mallet finger.

And for dinner, the teenager made Hungryroot meatballs and cauliflower linguine. We used ShopRite tomato and basil pasta sauce. It turned out so lovely I had to make a slice of butter bread to sop up the sauce.

Small pleasures.

Survive and conquer

Growing up, I never felt like I had a disability— maybe when you’re younger your body has more ability to compensate.

But I’m guessing with decades of repetitive stress from walking funny and the normal wear-and-tear from age, it makes sense that the last decade has left me hurting.

The last decade led me to my first official broken bones. The last decade left me with a host of experience with weight training, body building, gaining weight, losing weight, chiropractic care and orthopedic and joint issues.

And like I mentioned, I’m not in my twenties anymore so none of this should be surprising.

But it’s really hard to maintain when troubleshoot these physical issues and it’s frustrating when suddenly you wake up in the morning not only stiff but feeling your bones in a way I can only describe as poking where they shouldn’t be.

Ninety-five percent of the time getting up and doing a normal routine eases some of these sensations, but this week was hard.

Today— after all of my ten-hour warehouse shifts— I woke stiff and feeling like my left leg didn’t want to cooperate.

And so when I got to the gym, Apex Training and met with Andrew, my trainer, I gave him my report. “Nothing hurts,” I said, “but nothing wants to work.”

We did leg day. And for the average person, it probably would have been easy. But even my bodyweight bench squats seemed difficult and clumsy. Warm up stretches I can usually knock out without breaking a sweat were a struggle.

And he critiqued my lunge stance and examined it until I could feel the muscles at least trying to work the way leg muscles are supposed to work— i.e. together.

And the worst exercise was a simple calf raise standing on plates so I could extend my heels. While holding barbell.

I’m no longer stiff. Especially after my shower. But man am I tired and wondering what muscles I will feel tomorrow and how my chiropractor appointment will go.

Spider-Man and Matcha Pie

I have a lot of little things to say that problem don’t belong together but today is the Lehigh Valley Book Festival at Bethlehem Area Public Library and I’m excited, a tad nervous and a bit super-focused and scatter-brained at the same time.

Parisian Phoenix Publishing has participated in events before but we have scaled up with our efforts and this event today.

So this post will cover:

  • Spider-Man: No Way Home
  • Health and Fitness
  • Pie
  • Cats

I think that’s about right.

So the teenager and I finally came to the current end of the Marvel Comics Universe movies with Spider-Man: No Way Home. Watching them sequentially, and for me, many for the first time, actually made a lot more sense than when I saw some of them the first time.

I got a strange déjà vu that I had seen some of these villains before, but at the same time I was confused because the memory was vague and distant.

So let’s just say, trying not to spoil it for others like me that are woefully behind in their pip culture, that this film incorporates some older films that will be familiar to Generation X.

The primary theme of this movie, in my opinion, is time travel. The actual plot is a tad weak and melodramatic but the homage made to the previous generation of Marvel movies, and the humor employed in this movie, make it worth it.

My favorite Spider-Man is Toby Maguire. I got to see him again. And that made my heart happy. (Toby is also the Spider-Man adored and referenced by supermodel Adelaide Pitney in my chick lit/horror fiction novel, Manipulations, the first in the Fashion and Fiends series.

I had a very good visit with my chiropractor Nicole Jensen of Back in Line. She’s impressed with my progress and got things to pop and move (my right ankle that I broke more than five years ago) that haven’t popped and moved in a long time.

My Later, Andrew at Apex Training worked out every muscle he didn’t the day before (okay that’s an exaggeration) and the teenager set a new personal record in deadlifting: 225 lbs.

Finally, I get to the part I’ve been waiting for: PIE! If only I weren’t trying to be so health conscious… Because I have been visiting the amazing pie ladies Anne and Lisa at Pie+Tart for three(?) years now and their pies (and flat white coffees) have nurtured my soul through some difficult times— and a very very toxically difficult boss.

I receive their weekly email and saw their “freezer section” of leftover discounted pies included a steak and Guinness pie and a matcha custard pie. A meal inspired by two of my favorite drinks.

I was so beyond excited to eat these pies I was vibrating at “the pie hole” which is what they call their window/doorway. It has allowed them to stay in business safely during Covid because how would we survive sans pie.

I can improvise plenty of solutions for lack of toilet paper but I can’t make pie like this— not even with my Pennsylvania Dutch family connections.

I couldn’t even wait for the matcha custard to thaw. I sawed at it with a knife, broke it in pieces with my hands and microwaved a slice for 30 seconds. It was delectable.

And the steak and Guinness pie? So rich and full of meaty goodness I didn’t even have a chance to take a photo.

Oh how I love my pie friends.

And finally the updates regarding some of the cats we are fostering through Feline Urban Rescue and Rehab, Mars has taught Khloe to play and Minerva is becoming much more social. As is Louise.