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.

The splinter update: How do a raisin and a cockatoo impact disability?

Earlier this week I visited a new doctor, where I learned about my femoral anteversion and need to gain more flexibility in my hamstrings.

After that visit, I had a miserable day at work with my hip bothering me.

But then I got a truly nasty splinter. And I wrote about the unexpected positive consequences of that here:

Part 1: A raisin and a splinter = 110%

Since then, my body has felt better than it has in 15 years (with only some minor discomfort after sitting too long and while sleeping).

And last night, between the raisin and my cockatoo (Video of her here helping me remove the splinter) I got the splinter out.

And I walked into the chiropractor today with no symptoms other than this very mild stiffness in the right hip on the groin side.

I told her the story. We laughed so hard we nearly cried.

And then she popped joints I guess she can’t normally pop.

And then she looked at my feet.

“Your feet look normal.”

We both think that the raisin and the nasty splinter DID impact my walk and my posture forcing me to stay on my heels.

So I need to practice balance and gait training, and also incorporate my doctor’s recommendation of stretching those hamstrings.

It’s so important— especially when you have a disability— to pay attention to your body and really track how you feel and all the changes.

The experiment: chiro followed by personal trainer

This is another post mostly about my journey into learning more about my body and cerebral palsy.

First off, before I jump into my update, let me give a huge shout out to “the teenager” who solved an issue in my kitchen that had been a thorn in my dad’s side for more than a decade.

I once had him over for a dinner party in the early days of owning this house and during said dinner party, I set a candle on fire in the kitchen. It burned a hole in the countertop. My dad thought he’d buy a replacement as a Christmas present as the counter is probably three feet long.

Problem was it’s an unusual chunk in the corner and needed to be custom cut.

Somehow the teenager got the idea of applying special contact paper designed for counters.

It looks pretty damn cool— my dad would be very proud.

I’ll have to dig up a before photo.

In other news, my boxes of Not an Able-Bodied White Man with Money arrived. (Purchase on Amazon here.) I have an official unboxing planned and a blog entry for Parisian Phoenix but my body is having a minor revolt so the debut will be postponed until tomorrow. AND my credit card reader came.

I do love what Gayle did with the cover.

And now on to my experiment… The background… On Sunday, I performed at 99% preparing packages in Freestyle— pretty impressive considering we had computer problems and a work shortage. And we worked all 10 hours. Yesterday I worked eight hours in my home department and did 131 fixes, which I believe was 101%.

I knew I had a chiropractor appointment at 5 p.m. Monday so I asked Dan, my physical trainer at Apex Training if he would be around for a workout. I knew it might be light, after a workday in the warehouse, but wondered if my body would move differently after visiting Nicole Jensen of Back in Line Chiropractic and Wellness Center.

Nicole made sure everything was stretched and aligned and off I went.

And Dan led me in what would be a light leg workout for most— a lot of squats and floor exercises. He was impressed and honestly I didn’t have to concentrate as much as I usually do.

I woke up this morning in no real pain, and through most of my days doing women’s returns processing, my aches and pains were muscular and not skeletal.

But then, I took a small walk around the neighborhood and things started feeling off. My phone later revealed that my walk was indeed asymmetrical.

So I took a shower and plan to go to bed early as my body is stiff and achy. We’ll see how I feel in the morning.

For more on this topic, click here.

Do until you can’t do

If you’re a regular reader here, you may recall I had a fall last week, at the hospital, when I went for a CT scan of my brain. If you missed that episode, you can read about it here

What I didn’t mention is that I also took a second rather more dramatic fall in my kitchen that same day.

I’m rather sure Dr. Nicole Jensen of Back in Line Chiropractic and Wellness Center cringed as I told her this story, and the story about my knee totally facing the wrong way.

This prompted her to adjust my ears— apparently I had some left ear congestion. The adjustment was a rather uncomfortable yank in my earlobes.

Anyway, she mentioned that I tend to “just keep doing until I can’t do no more” which is 100% true and something I learned from both my parents. They both have incredible work ethics.

On Sunday at work in the Stitch Fix Bizzy Hizzy, I believe I hit 96% in packing Freestyle orders. Yesterday, we got shipped to women’s returns processing where I struggled in an attempt to hit 70%. Today I hit about 85% in my home department (QC) despite incredible amounts of pain.

My feet were burning. My joints a little achy. My right quad screaming. A slight nosebleed. And both sides of my hips felt wrong. So I checked walking asymmetry in iHealth.

Definitely periodic issues since yesterday afternoon.

If I’m still uncomfortable and having trouble moving in the morning, I’ll go to work and call the chiropractor when she opens.

Simplify: a health update and a Dunkin review

I went to the chiropractor yesterday. Nicole at Back in Line Chiropractic and Wellness Center warned me that she “beat me up” more than usual.

That’s amusing to me as I was in an incredible amount of discomfort and she eliminated 90% of it.

I explained everything going on— my stress, my lack of good sleep, the possibility I had omicron, not eating right or taking my vitamins, not stretching or working out, and working overtime.

But as soon as she touched the back of my right hip, the tenderness immediately told me there was an issue I hadn’t thought of: my hip.

I need to remember that when I struggle to use my legs I might have an issue with my hip.

This post explores the last time I had this same issue: click here.

And if you look at that entry, you will see my mental health had declined in similar proportion to what I experienced earlier this week.

Pain and shifts in mobility really do have profound effects on our mental health.

So maybe next time instead of focusing on all the things that are going wrong and contributing to my lack of function and mental health, I need to be quicker to ask for medical intervention because — as I already know— I can’t trust my pain.

My pain recently didn’t feel that bad. But all the signs, including 65% work performance indicated otherwise.

I really need that physiatrist appointment to get scheduled.


In cheerier news, I recap some of this in a YouTube video I did yesterday while trying the “brown sugar cookie” latte and new egg bites at Dunkin.

See the video here.

If you want the PowerPoint version of my impressions:

  • The Brown Sugar Cookie flavor is boring. To me, it tasted a bit caramelized and like “toasted white chocolate” syrups. I miss peppermint for Christmas and pistachio for spring. These flavors now only come in peppermint mocha or pistachio mocha. I don’t like mocha in my coffee. Unless my friend and colleague Mary Barnes, now deceased, was the barista making a salted caramel mocha about eight years ago before everything came in salted caramel mocha. Starbucks always introduced it for the holiday season. But back to Dunkin and Brown Sugar Cookie, the teenager compares it to gingerbread. I didn’t get the spice of ginger.
  • The bacon cheddar egg bites… these were expensive but at 17 grams of protein and 280 calories they can substitute for a meal. But $4.99 for two miniature donut shaped eggs? Cute, definitely. Firm and crisp on the outside. Soft on the inside. Smoky, cheesy flavor. Again, boring. Strange mouth feel. But a very practical and utilitarian option.