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.

Falling isn’t the worst part

It’s Wednesday. That’s my Friday. Wednesday is typically both hectic and easy at the Stitch Fix Bizzy Hizzy (Pennsylvania warehouse).

I’ve been performing at 100% all week— probably 106% yesterday— and my body has been protesting. A lot of dull pain and stiffness. I was honest with Andrew, my fitness and strength coach at Apex Training, that I have been struggling with my leg and spine.

So, Monday night, coincidentally the only day I worked a full-hour shift this week, I went to the gym but only focused on upper body. And I felt so much better and woke up as close to I get to ready to take over the world.

And yesterday, Tuesday, I excelled at work and came home stiff but still had an enjoyable evening. I thought it might be a good idea to take one of my muscle relaxers. It’s not a strong dose, but I hoped that they would ease the stiffness and allow by body to recover.

I woke up dragging, but managed to pull myself together. I had a cup of coffee and did what I could around the house. Put on my new cat leggings from Purr Haus. More about that here. (And I believe women of a certain age should not wear graphic prints on their bums and I am in that category. I have ventured outside my comfort zone.) Grabbed my lunch out of the fridge and left for work.

Went into the building, said hello to my friends and colleagues in the main break room. Walked down the central aisle with my big yellow purse and in the middle of the room, with open space everywhere and with no one and nothing near me, I face-planted onto the hard, austere floor.

On of my Monday through Friday colleagues came to help me up. I stood tall. Went to the cubby holes where we store our stuff and put my purse down. I took my water bottle and went to the bathroom and the water filling station.

I had just lived that scene in every underdog teen movie or television show. You know the one— where the dork gets tripped by the cool kid and throws their lunch tray across the room.

In the bathroom, I noticed that I ripped my brand new pants. I had scraped my knee but no bleeding.

I went back to the break room and couldn’t stop myself from crying. One of my colleagues, part of “the Sunday cohort” with me, gave me a light hug while I collected myself, assured me the pants could be repaired, and made me laugh.

When I got to my table for the day, I noticed that not only did my thumb hurt, but I had a tiny bruise under my fingernail.

I went to my supervisor and asked if I could leave at 11 instead of 3. The whole incident has me upset.

The falling is easy. Hell, getting up and doing what you have to is easy. But the fear is getting to me. The fear of when the next fall will come, how it will happen and what will happen to me clouds my brain.

This is why I applied for a mobility service dog.

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.

Adventures with Nancy and leaving Midnight Society

Tonight was the last official night of “Midnight Society” at the Stitch Fix Bizzy Hizzy and they closed the warehouse at 7:30 p.m.

I say last “official” night because I just heard from my supervisor (at least until the new shift starts Sunday) and my favorite security guard/philosopher that there are a handful of people who can’t transition until after Christmas— and Stitch Fix will let them continue working their traditional hours until then.

That was a really nice move on the business’s part. Too nice in my opinion. I have squeezed a couple months of doctors appointments, tests and physical therapy into two weeks. So part of me is a little jealous.

We start our new work arrangement Sunday.

In other news, my blind friend Nancy and I both had physical therapy today. And Aîné and Brigid of the Celtic Pride got spayed so they are ready for adoption!

But back to physical therapy. Nan and I went together. She’s having issues with her shoulder and numbness in her finger.

I have pain in my spine and fall a lot.

I had to ride a stationary bike for eight minutes. She warmed up on a hand contraption.

I did my Cobra poses, and my physical therapist did that thing where he presses on my spine as if pushing it back into place.

I did deadlifts with a 20 lb kettlebell. I had to lay on my stomach and bend my leg at the knee and lift it off the table. That was harder than it sounds.

I stood on a soft cushion square and moved my leg out using my hip while keeping my knee soft. I also did that kicking back.

I did bridges.

I took a giant ball, held it to the wall with my back, and squared as low as I could.

Meanwhile some teenager stood on a balance ball on one leg, tossed a ball onto a trampoline and caught it ALL while standing on one leg.

I can stand on one leg for nine seconds.

On the floor.

This kid was standing on a ball meant to destabilize you.

And throwing a ball.

I am in total envy.

Meanwhile Nan was teaching the staff to read Braille and how to use a white cane.

And the staff was heartily confused at the fact that friends would come to physical therapy together.

After physical therapy, I turned to Nan. “You what to come to my house for grilled cheese?”

Her answer was a hearty yes. I made hers with Colby Jack, Cheddar and Lebanon Bologna and mine with habanero cheddar and Vevan vegan mozza-melts.

The mozza-melts taste and melt like real cheese, but sadly they have no protein. At all. So while they are a cruelty free version of cheese, they have no nutritional value.

Advocate: A Difficult Day on the Health Quest

Well, if yesterday made one thing apparent… it’s that sometimes answers lead to bigger questions.

And questions often shake our foundations.

I have had an appointment every day this week before work. In the last ten days or so, I have seen my therapist, my personal trainer, my chiropractor (who has a background in physical therapy) and my primary care doctor and one of his new residents.

Yesterday was the latter.

This recounts why I was seeing my doctor. Later in this post, some of this info may be pertinent.

My heart was genuinely excited for the visit as I’ve made a lot of positive health habit changes and my primary care physician and I have a great relationship. Normally my care is a discussion and we work together to resolve my issues.

Since Covid, the practice has seemed much less organized and attentive as usual. They also recently took on some family practice medical residents. I waited in the exam room for 75 minutes.

I went into my phone to record my blood pressure on iHealth. And that’s when I noticed— iHealth has been recording my double support time and my walk asymmetry for a year. (This morning I compared my walking and balance statistics with my teenager’s and her walk is more screwed up that mine! My walk is consistent and consistently “off” but hers gets severely skewed every time she gets plantar warts. Turns out my neighbor has more issues in this area than I do, too.)

So, at 12:15 pm — as I am lusting for a glass of water and breakfast, I had nothing yet but a gargle of purple listerine— the resident enters the room and apologizes for the tardiness. I told her I was about to order GrubHub out of fear they forgot me.

I told her everything about me (as she had never met me before) and relayed that the doctor wanted to see me. I also mentioned that muscle relaxers might be a better fit to ease my periodic pain than ibuprofen or acetaminophen because it might be more due to the stress on my joints and the tightness of my muscles as a side effect of the cerebral palsy.

Now, remember, my anemia started more than 12 years ago with work stress, gaining weight and heavy menstrual bleeding. And I came to my current doctor because my former one refused to look into the source of my anemia. And that doctor made me cry. And I had started having panic attacks.

Now I am back in a similar symptom situation but I have better mental health and a way better doctor.

The resident goes and gets my doctor. I propose waiting several months to see if the anemia improves with the mesures I am pursuing now. He is worried about polyps in my colon. We agreed I will use some stool cards for a home test.

I didn’t feel heard about my request to find solutions for my body pain because then we discussed my mental health.

And he wanted me to visit their new staff psychiatrist to rule out any issues (like bipolar 2) that might require a mood stabilizer.

Now I complete understand why his said this: I had mentioned some dramatic temper incidents previous to some of my recent lifestyle changes, I had asked to restart the prescription for a very low dose of lexapro that had been prescribed for high blood pressure to see if it would even out some premenstrual mood swings, and I had mentioned some highs and lows in the past.

But I also said the isolation of the pandemic gave me the space I needed to deal with some heavy duty stress, and that good things were developing for me and I felt like this was one of the great years in my life. I talked about having rid myself of anxiety and being able to look back at that former period of my life with understanding of myself and pride. And that my therapist and I were finally looking at my childhood trauma as I scored 6/7 on the ACE test.

And he knows I have been in therapy for more than a decade. And that my therapist recommended him. Shouldn’t he let my therapist request that type of referral?

So I felt betrayed and it reintroduced feelings of anxiety and insecurity, not being sure if my medical professional was really paying attention to me and what I was saying. I had just mentioned delving into childhood trauma for the first time in my life. I am having other health issues that I need to address. So now, in my opinion, is not the time for questioning my brain chemistry.

So we agreed to discuss my anemia and my psychological state with my gynecologist (whom I see Monday) and my therapist and revisit the issue when I return in three months to discuss the follow up blood work.

This left me shaken and wanting to scream, “Stay in your lane.” I went to the doctor because he asked me to come discuss my anemia— how did a shrink come into play?

I often think this is how people get misdiagnosed, not by bad doctors, but by doctors trying to rule everything out and in the process convincing patients they need different help that they actually need. Like when people see a commercial for medicine and later “ask your doctor if (this expensive drug) is right for you.”

I emailed my therapist from my phone as soon as I got into my car. By 3:30 pm, he said he disagreed with this assessment— that I should be screened by a psychiatrist— but that we would discuss. Honestly, he is the only person I would trust with a decision like that. We all need to build teams we can trust. And this is how I advocate for myself.

When I got home, around 2 p.m., I finally had my morning coffee and made this— what I would call my “summer vegan sandwich,” courtesy of my stress shopping last week and a Hungryroot delivery. (See the teenager unboxing here.) Lightlife bacon tempeh, Hungryroot lemon tahini, romaine, deli pickle on 12-grain bread.

I didn’t take proper care of the animals (loosing almost four hours of my day to a doctor’s appointment that normally takes one hour).

I QCed 123 fixes, which is far better than the 116 the night prior. When my favorite Stitch Fix supervisor said hello, she asked how I was, I said okay. She looked at me askance and said, “only okay?”

She told me if I needed anything or if there was anything she could do to let her know. But she can’t fix the emotions in my head. So I thanked her and went back to some of my standbys— showtunes!

I listened to the soundtrack of Avenue Q as we used to in the makeshift temporary newsroom of Lehigh Valley News Group, and I can still remember one of my favorite young editors with her big headphones on, fighting her stress and her insecurities with a dose of “What do you do with a B.A. in English/It sucks to be me.”

Apparently this is the whole musical on YouTube. Check it out.

And if you just want the song… Here you go.

Speaking of the newspaper days, I’ve reached out to some Chronicle colleagues for help with promoting the FURR Pop Up Cat Café August 15. The man who hired me for that newspaper (the boss of my best boss ever) mentioned that my daughter has grown up in the blink of an eye (which he has seen thanks to Facebook).

And that brought back great memories as I think the teenager was the only baby born to a staff member during the run of those newspapers. I realized I was pregnant while planning a political debate sponsored by the newspaper in Phillipsburg, N.J.

So yesterday was hard, and I managed to avoid slipping into those old panic-prone mentalities. I am drained today but luckily only have a four hour shift.

Owning my personal fitness

It’s Monday. And wow is it a Monday!

Before I continue, let me get the usual disclaimers/introductions out of the way.

Like many people, I had a rough 2020– I’m actually grateful to Covid for slowing down my life and allowing me to survive some severe emotional stress that caused me to have high blood pressure, develop a bad comfort eating habit and end up anemic. I had a difficult job experience, lost that job, and now work in the Stitch Fix Bizzy Hizzy and deal with my daughter’s crazy dog, my stubborn cockatoo and a bunch of foster cats. I’m forty-something, a single mom, 20 lbs overweight and struggling to understand my body, specifically my cerebral palsy.

My day started with chasing the “pig pony” dog Bean (we call her that because she snorts like a pig and is the size of a small pony) around the neighborhood because she decided to jump the fence and ignore her recall commands.

I’m in my kitchen now, eating a public-school issued bowl of Cheerios with an out-of-date white milk leftover from the teenager’s recent school dates. I met with my trainer today (and my friend Janel who is helping me set up the FURR Coffee and Kittens event at Forks Community Center August 15).

I headed up the hill to Apex Training to meet with my trainer Dan. I finally remembered to ask Dan if it’d be okay if I wrote about him and our work together and he said yes, so I no longer have to be sneaky.

I’m comfortable with Dan. He’s laid back but he knows his stuff, understands the movements and the physiology, and keeps a careful eye without making you feel stared at or inadequate.

He almost seems apologetic that we’re going slow and using 5 and 10 pound dumbbells and not lifting at a pace that makes it a cardiovascular event. But that’s what I love! The anemia, when combined with the cerebral palsy especially, makes it so easy to get tired and clumsy and hurt oneself.

Today, we did some upper body work. 30 minutes, slow and steady. 3 sets of 2 exercises each. Pretty standard way to set up a 30-minute work out hitting the triceps, biceps, chest and upper back.

Five years ago when I did this, I did a lot of cardio, did calisthenic ab exercises every day and did ten to fifteen minutes of lifting focusing on just one muscle (i.e. biceps or triceps) not the whole group.

Like I said, I know what to do, but I’m a person and people get lazy. I need Dan right now, as I’ve said, for several goals:

  1. Restart the consistent habit of training.
  2. Increase energy.
  3. Improve strength, flexibility and agility.
  4. Build muscle and tone body.
  5. Lose weight.

Many of us tell ourselves we can save money and do it ourselves but the reality is there is a big difference between we are able vs. the commitment of we will.

I fully intended to eat a banana every day to get more nutrients into my body as I recover from anemia. Did I?

Does it look like I did?

But back to the training… I find the actual activity of lifting, when I am working with a class facilitator or fitness trainer, meditative. Everyone should focus on their movements when strength training, but I really have to with my disability. Focus is required to make sure all the body parts move as they should. I have to count the reps, remember to breathe, and control the motions all at the same time.

When you are doing all of that, your mind empties. And you just flow with the movements of your body and the feeling in your muscles.

Like today was “oh hello triceps, are you still under all that arm jiggle?”

When I left Dan I was sweating. I was limber. I felt invincible. I was walking home reminding myself how powerful I am.

I fell.

I lost my balance on the sidewalk and just fell about half a block from my house.

My right arm is scraped from the back of my shoulder almost to my wrist. The upper shoulder stings the worst. It’s been two hours and it still stings. I also bounced on my hip and upper thigh— so that is already starting to bruise.

I called out from work tonight. Based on where I’m at in my menstrual cycle and the summer sun, I’m going to blame anemia for this lapse in balance especially since all day yesterday I had no energy. Anemia is awful. Anemia with a mobility disorder is a nightmare.

But this is why I’m working out.

I own my weaknesses. Let’s fight!

A chat with my Chiropractor

When you have a condition like cerebral palsy, sometimes it’s difficult to determine what’s an average ache or pain, what’s normal for you, and what’s an actual problem worth seeking help for.

I’m too tired today to rewrite that sentence so it doesn’t end in a preposition. Deal with it, grammar police.

I’ve been falling a lot lately. It started before my annual physical, the one where my blood pressure was so high the doctor threatened to medicate me. I fell just walking down the street. I’d lose my balance on the stairs. On Sunday, I stumbled while doing laundry and managed to stab the ball of my foot with the corner of a concrete slab.

Since I walk a little funny, and I’m a little crooked and I have a little trouble with my S1 joint, my chiropractor has worked wonders.

She also has extensive knowledge of physical therapy, so I tend to pick her brain.

Today she told me to do balance exercises, like standing on one foot; calf stretches and anything for my ankles.

And my past experiences in physical therapy for balance came flooding back.

I stood on each leg for at least 10-15 seconds four times; I bent one knee and pushed the wall a few times; did calf raises, toe taps, some side steps and matching.

She also told me to get that blood pressure under control because that also affects balance.

My chiropractor’s web site

PS: I destroy shoes. I wear heels at an angle. This weekend I spent about $80 on new shoes for myself. That will help the falling problem, too.