3/4 of the year: The August medical update and ‘the feels’

Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).

We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.

The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.

Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.

I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.

“It’s a blessing,” the man said.

Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.

I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.

My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.

I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.

I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.

His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.

When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guru Nicole Jensen of Back in Line Chiropractic and Wellness Center.

I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.

My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.

Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.

My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.

I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.

I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?

I opened it.

I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.

I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.

Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.

I mean, I suppose I didn’t have to, but it seemed only fair.

That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.

We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.

I almost bought a pair of potato chips.

I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).

Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.

She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.

He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.

He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.

Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.

She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.

“You’re still here?” I said.

“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”

Only you, Gayle. Only you.

Coffee dilemmas

Probably a month or more ago, SuperCoffee just ran out of my dark roast Keurig pods, and they haven’t come back in stock and I haven’t seen any official notice that they’ve been discontinued.

My last shipment was in May.

So I have been trying every dark roast I can find. Even when I make them in my espresso machine, they taste weak and watery. I even tried added Nescafé instant coffee into the beans in the espresso machine that made it better. But still disappointing.

On a whim, I went onto Supercoffee’s web site today— and there was my coffee.

Why did they never resume my subscription?

I sent a little email and then ordered the ground coffee.

Hopefully my coffee will be better soon.

Changing it up… Revival?

Before the pandemic, I had an office job in nonprofit development primarily as a fundraiser. I had been hired as a communications professional, and I excelled at that work. But the toxic work environment that stemmed from the head of the organization (who would normally be referred to as the executive director, but she reveled in her title as Chief Executive Officer, perhaps because she needed the ego boost to compensate for her insecurities), led to rapid and frequent staffing changes.

(This is certainly getting long-winded for where it is going. But bear with me.) I knew all of this before I accepted the job, because I had excused myself from the interview process from the same position about a decade earlier. I had turned down the opportunity because The Teenager was a preschooler and my gut warned me that this job, and this entity, would require more energy than I could give.

This time, in part because of a really awesome person hiring me, I decided to take the challenge. When the person in charge finally burned him to his breaking point, she promoted me with assurances that I would have all of the support and guidance I would need. (In her mind, that was one hundred percent true, but unfortunately, what was in her head and what her employees needed to thrive were completely at odds with each other.)

During this period, I paid close attention to my style, my accessories and my make-up. In my youth, I didn’t have the confidence to toy with these fashion topics. Then, I had a child. Then, I worked at Target. By the end of my almost-decade in red-and-khaki and food service, I had started to experiment in make-up and other touches that could allow my personality to come through despite the dress code.

As I moved into fundraising, these choices became more important. The world hates to admit this, but in any sort of business matter, appearances count. Not necessarily because you need to be pretty to succeed, but because you need to make an impression and you need to look confident, trustworthy and project the attitude that you are an expert in your arena. That’s a little different than confident.

There are two kinds of confidence in this regard. One says, “I know who I am and I like that person and we get shit done.” (That’s the confidence my former supervisor lacked.)

The second says, “No one can do this better. When it comes to this, I know my shit.” (That’s the confidence my former supervisor had so much of that I adored her. I wanted to learn her skills and knowledge, but her instability as a leader made that impossible. Her deficit in leadership and trust led her to think any way other than hers would not only never work, but destroy everything she had built, because it her mind, it was all her. And she did build it, more than 25 years ago, and sometimes things need to change after 25 years. And sometimes, her way and someone else’s way can coexist and succeed together.)

Anyway… when I accepted my current job working evening shift (“midnight society”) at the Stitch Fix Bizzy Hizzy warehouse, I wore eye make-up for the first few months, but after I got Covid, that fell away. My shift changed, changing my wake-up time to 4:15 a.m. when I was accustomed to going to bed at 2 a.m. (I miss that shift soooooooo much.) No time for make-up when you can barely wake up.

2022 required change. I launched my business (Parisian Phoenix Publishing) while still on evening shift. Evening shift was eliminated. The first week of day shift, my dad unexpectedly died. I think I got the Delta variant at my dad’s funeral. I burst my tendon removing my socks. I struggled with hip issues. We had a small flood in the house. The teenager graduated from high school. The teenager had a car accident, her first.

2022 wants to kick my ass, but I keep giving it hell. I’ve started weeding and reorganizing my wardrobe even though I’m still 25 pounds overweight. I’ve started spending time on the Stitch Fix app, combing the options and the styling ideas. (More on that here.)

And now that this very short topic is very long… I just wanted to tell you I wore jewelry today.

Margaritas and cat noses

I might be pushing too hard.

I did (I think) 105% on Sunday at work, 105% yesterday and woke up stiff and with my right quad tight and spasms in my calf. I only did 93% today, but I feel better now. And the dip in numbers had more to do with some chaos in the warehouse versus my cerebral palsy issues.

Regardless, I must admit I was a little relieved yesterday when my fitness coach Andrew from Apex Training postponed my workout.

The teenager proposed going to Applebee’s for dinner, her treat, as she didn’t feel like cooking. She also demanded I order a cocktail as I think she wanted to make sure I drifted off to bed as early as possible. (8 p.m.)

The teenager loves Applebee’s— for a child raised in all sorts of Mom & Pop restaurants where we often knew the owners, she certainly loves her boring old franchise Applebee’s.

I realized that if you took any item with chicken tenders away from the menu, you’d lose more than half the meals available. And if you didn’t want bacon on your hamburger, you had three choices: the quesadilla burger (which we got), the plain old burger and the Beyond veggie burger (which was $14 and came with nothing but lettuce, tomato and pickle).

Boring.

The quesadilla burger was a mish-mash delight (I chose my margarita for the artificial Latin theme) but had to be eaten with a knife and fork.

When I arrived home, Opie and Fog (two of our personal cats) joined Khloe and Louise (foster cats) and Nala (Goffin’s cockatoo) and Yo-yo (parakeet) in my room for the night. Fog tries so hard to be Louise’s friend— and she is slowly (after more than a year) getting braver and more confident.

Louise (left) and Fog (bottom right)

Finally, for those that are wondering… I ruptured my tendon in my ring finger April 15 and had “mallet finger” and a cast for nine weeks. My specialist released me July 25 and expressed his disappointment that my finger was still a little off.

My finger after a ten hour shift August 15 — four full months after my accident.

I use my hands so much at work, so I still splint at night. I must say it feels like and looks like the finger is getting stronger and straighter every day.

Reviewing the trends in my Stitch Fix account

There’s an old Grimm’s fairy tale where someone catches on fire, and having no water, the onlooker urinates on the person burning to extinguish them. It’s rather horrifying to read, and when you do, you realize just how much Disney has sanitized our lives.

But, if anything, that is an accurate depiction of how this week has felt. Hopefully now the fires are out and if I’m lucky Cinderella will stop by, clean my hearth, and we can hit up Fairy Godmother for a night on the town.

It’s the beginning of my weekend. They say temperatures will drop by ten degrees by tomorrow night. I have seen more evidence that my service dog application is in process. And my body, though fatigued by the extreme temperatures and long days in the Bizzy Hizzy Stitch Fix warehouse, has not experienced pain or falls this week.

So I thought I’d do something light and frivolous and fashion-oriented, which is legitimately something I need to do more often as author of the Fashion and Fiends series. Buy my books here. If you prefer to avoid the Big A, try Bookshop.org here.

The whole reason I work at Stitch Fix is because 10+ years ago when I still had a print subscription to Vogue magazine, I read about this revolutionary clothing subscription box. Six-plus years ago, they opened a warehouse a couple miles away from where my husband’s grandfather had the family farm. The people who left Target while I worked there either left for Stitch Fix or Amazon. The former Target employees who went to Stitch Fix were elated with their new jobs at this place where I had wanted to be a client.

When I lost my non-profit development job, I thought if I can’t have the clothes maybe I can at least handle them.

In early November, I will celebrate my second anniversary with the company. I have shopped at the employee store (the deals, amazing!), and I recently ordered shoes from Freestyle through my friend, Joan the talented photographer and archivist of Plastiqueville, who is the current recipient of my employee discount.

We can only change our discount designee once every six months and I believe Joan has had it for a year. It has been really fun watching her get “fixes.” But after her fix this month, I plan to transfer the discount to The Teenager. The teenager wishes to develop her own style and I think this is a great way to do it.

When she completes her journey, I’d like to sign up. Meanwhile, I’m working frantically in the Stitch Fix app to help the algorithm learn my style. By the time a stylist gets me, the computer should have me all mapped out.

These are some of the current trends Stitch Fix curated for me and my reactions.

For larger photos, open the gallery.

  1. Gold Ray Asymmetrical Cold Shoulder sweater, cheetah wrap skirt, stone bead bracelet in warm tones and flip flops. I have wanted this sweater since I first laid eyes on it. I also think it would look good on the Teen. The skirt looks amazing in the photo, but I think in real life… The skirt would flop open, my belly would bulge out from under the sweater and the flip flops would be an expensive fall hazard.

2. White Tank, studs, jean cut-offs, and green Vans. Great basic outfit. But I wouldn’t pay premium brand prices for it. I already purchased the green Vans, but due to a thorough bleaching mine around one-of-a-kind two-tone.

3. Similar to two: Patterned flowy tank, similar shorts but more distressed, autumn tone bracelet and thin mustard flats. I have not seen this tank in person, which is surprising since I fold about 750 articles of clothing a day. It looks like it might be really cute. I love the bracelet. And I like these shorts more than the previous because they are more casual and roughed up.

These shoes have a very almost jute texture, it’s really cool and I am super-into this vivid mustard color right now. That said, these shoes are super narrow and I doubt I could walk in them. But, they do come in several colors and pack nicely. Great vacation shoes.

4. Patterned dress, purse, shoes. I have nothing against the outfit. But, boring. And that purse seems like it would get dirty easily and not hold the three items the Teenager says I always have: tampons, pens, and food rations.

5. & 6. Ribbon tied tank, skirts, bags and sandals. I am putting these two ensembles because they really are variations on a theme. I don’t like anything in either outfit except for the tank. It’s the same tank in two different colors. It’s a decent fabric, and has a triangle in the cleavage area tied together with a wide ribbon. I like the style, though I can’t say I’m a fan of the navy blue. The white, on the other hand, I like. While it is easily stained, it is also very versatile.

7. & 8. Late sixties, early seventies? Before my time chic. I appreciate both of these styles, but they seem dated to me. I would fall in both pairs of shoes. If the gold top is the one I think it is, it feels rough. And I can’t wear an open cardigan. I have no shoulders to hold it up.

9. & 10. Dresses and big totes. This is my style. I love dresses. I already own the mustard tote. The ensemble with the striped dress, lightweight coat and sandals would be a cool mate to my tote, but I wouldn’t buy it. I don’t have enough time in my life to wear sandals. The dress, with its colors and pattern, wouldn’t match enough other items in my warddrobe. But that coat does match my bag.

The red dress looks super cute, and traditional I could totally do the “lady in red” look. And the boots, I need them. Now.

11. Faux leather jacket, jeans (bootcut), clunky shoes, and a funky messenger baggish thing. I love this outfit, but I would switch out the shirt. The shirt is boring. Love the shoes and the bag. I’ve handled a lot of the faux leather jackets, and they are okay. I think this brown color would be flexible.

12. & 13. Tanks and long jeans. I like both these looks but probably like the earrings best. I can’t wear wedges. Ever. The purse is a weird shape and the pattern is too much. I love white jeans, but don’t think I’d invest in a pair until I get a little thinner. But they would look great with the magenta patterned tank with the flared wide-leg jeans. Would I wear the jeans? If I found the right shoes.

14. Ruched crossover sleeveless lavender top, cuffed jeans, slouchy bag, and striped sandals. This is a very update take on what I called the sixties/seventies retro chic in 7 & 8. It’s very relaxed and easygoing, but I wouldn’t wear a single piece of it.

15. The basic sundress beach look. Love the sundress. For a small purse, I like this. I think I keep trying to buy the mustard yellow one that matches my tote. And while I love the shoes, I can’t wear anything that unstable.

16. & 17. Little black dress(es). I really love the ruching on the dress on the left, but I think it wouldn’t hang right on my shape. The little green slouchy boots so remind me of my middle school years, the late 1980s. That means I like them, but I don’t like them. I definitely prefer the tan boots in outfit 10. And while I like the shoes in outfit 11 in brown, here are the same shoes in black and I don’t like them. The purse on the left is unimpressive, but I totally desire the purse on the right. The black and white checks would be a fabulous accent to any solid color piece or pieces.

18. & 19. Upgrades to jeans and a t-shirt. Both of these are decent looks, but I hate both pairs of shoes. The jeans are unimpressive, but I think I like the yellow v-neck top and the bracelet.

20. Casual dressed up? I love the soft feel of this sweater and the buttons but the color doesn’t excite me. I would have to see the jeans on to know for sure how I feel about them, but I’m starting to believe distressed jeans have to be straight, or skinny, in order to have any sort of feminine vibe other than “I’m destitute.”

I have a pair of shoes similar to these, but I can’t walk in them. I take them out of my closet and try periodically and wear them until I almost twist an ankle.

And I like the flashy earrings with a relaxed combo.

21. Feminine distressed. Okay, I might work this look. With my mustard tote it might look amazing, especially if I get the mustard coat.

But seriously, these look to be higher waisted and slightly slimmer distressed jeans. I like the faded wash and the lack of cuffs. I have short legs so we don’t need to make them look any shorter. I love the scoop deck, shaped polka dot top reminiscent of a sun dress. And I have the earring set from Nakamol Chicago but in brown instead of blue. And I not only like the shoes, but I really feel the creamy neutral and they look like suede or faux suede. And I think I could walk in them.

22. Nope. There is nothing positive I can say about this one. I find most of the Daniel Rainn blouses are tacky. And this one outdoes itself. The shoes are boring and basic as are the jeans. And the purse is just ugly and a weird size, too big to be “small” and too small to shove in books, a lunch or a laptop.

23. Back to School. I think I like the shoes. Not sure. Backpack is loud. Shorts are too long. T-shirt the color of a foggy day. Boring.

Updates, announcements and anecdotes

It’s just about to turn 5 a.m. on Tuesday morning. The last 48 hours have been emotionally difficult, and those are internal challenges I have resolved within myself but now I need to “make right” in the world.

My good friend Joan (the talented photographer) had quipped that the moon is in “Frustrato” phase and perhaps that is accurate.

Sometimes it’s nice to blame the universe instead of accepting our part in the mayhem. Because even good intentions spark fires.

I heard a podcast yesterday; I believe it was an economic one, that asked if one host was “a glass half empty or a glass half full kind of guy.” He replied, “it’s just half.”

That’s too much enigma and philosophy for pre-dawn hours. Blame the fact that my trusty espresso machine only filled half my mug.

Mug from Purr Haus in Emmaus

The teenager and I had 14 kittens in the house Saturday, Sunday and Monday offering temporary lodging for these babies whose official Feline Urban Rescue and Rehab foster families have gone on summer vacation.

They were so much fun to have around, but 11 went home last night. This led the Teenager’s officially adopted foster fail Mars of the Roman Pride distraught that his friends had gone. He screamed until the Teenager released him into “gen pop” where he plopped himself down in front of the remaining visitors.

On Friday, I had a rather grueling session at Apex Training with my coach Andrew. We did some intense work on balance and single leg muscle stability. On Saturday, the communication between my brain and my lower body felt rickety (for lack of a better description) and it was challenging to move. By Sunday, the movement felt smoother but my phone was registering spikes in walking asymmetry. But something very interesting happened Monday— I could not only stand on one leg, but I could also hold my leg in a few seconds of a quad stretch.

Yesterday, I visited the Stitch Fix employee store, which resulted in a good news/bad news scenario. I bought myself jewelry on an impulse and discovered my second holes could still accept earrings. As someone who really grew up in the 80s and graduated high schools in the 1990s, I have three sets of holes in my ears.

I bought the Teenager some new things, including some warm hiking style boots for fall and her dog walks. I bought myself an adorable pair of shorts, and I picked one size up from my pre-existing Stitch Fix clothes and they were too small.

Obviously my efforts to reduce my recent (as in pandemic era) weight gain have been not sincere enough. Sigh. I’m trying to eat better and move more without falling into a strict/restrictive mindset.

But I did eat an entire medium pizza from Domino’s the other night. It was a medium hand-tossed crust, light on the cheese, light on the garlic Alfredo sauce with red peppers and pineapple.

On the way home from work last night, I noticed that the furniture store looked abandoned— and that the sign merely said urn.

In the background of all of this, the ‘cat book’ from Parisian Phoenix has hit some unexpected difficulties prompting a delay in its production. But my quick thinking, after a few hours of pondering, have inspired an interim release of a mini cat book featuring advice and stories about the care of cats. The larger book will come later, perhaps in early 2023.

In the meantime, I am very puzzled why my sweet tripod foster Louise has decided to crate herself.

And the most surprising item of the day was receiving my first catalog for Parisian Phoenix Publishing— Uline junk mail!

I suppose the last update is that the people at Susquehanna Service Dogs have cashed my check for the application fee. I’m anxiously awaiting contact.

To say life has been hectic feels like an understatement.

Today I canned Amish tomatoes

So, I got a text the other day— it was probably Thursday but who knows— from my friend and talented photographer Joan.

“The farm has Amish tomatoes, want some? $25/bushel.”

We agreed to split some if they had some left when she went to pick up her regular CSA share.

She dropped them off yesterday. Now, I have always wanted to home-can tomatoes. I decided to make seasoned roasted tomatoes.

I started at 7:30, they came out of the water bath at 11:30. I think my yield was 1 pint jar, 2 half pints, the tiny quarter pint jar and a mouthful.

A post about food

It’s probably the hottest day of the summer and I did some work for Nan and went to visit my friend Maryann to help her with some odds and ends around the house.

It’s been a crazy week for both the teenager and I so I thought it would be fun to post some of our recent summer meals.

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.