The celebratory and the reflective

My neighbor and the pet mama of my favorite little dog, Sobaka, had a birthday yesterday and her 700th Peleton ride. Another friend had a birthday Thursday and by happenstance I had that podiatrist appointment in her town and stopped to see her. She insisted I had to have done it on purpose, but I am terrible with birthdays. I know they are coming. I make plans days in advance but somehow, they slip by without me recognizing them.

The Teenager decided to take the bull by the horns and go shopping for our neighbor’s birthday and collected all of her favorites: Diet Coke in 20 ounce bottles, Cheez-Its and various flavors and sizes of M&M chocolates. It’s something the teenager learned from the maternal side of our family, because when my mother runs out of ideas for what to buy someone she either finds something completely ridiculous (like the whole chicken in a can that she bought my husband for Christmas one year) or stocks up on their everyday favorites. (The chicken in a can stemmed from my husband’s love of chocolate pudding in a can. Things escalated from there.) It’s like a care package, but more festive.

Now Sobaka turned eight this week so The Teenager also bought a corresponding gift bag for the dog. With extra tissue paper as Baki loves tissue paper, some treats and some little stuffed toys Baki will probably ignore because she’s too hoity toity to play.

My family has lived in this neighborhood for 20 years. Some of my neighbors have lived here their whole lives, like Little Dog’s Birthday Girl Mom and my neighbor to the right who cuts my lawn every time he cuts his. Most of my neighbors have been here as long as I have, and so we have adopted an informal mascot of the Flamingo and have the occasional girls night.

The Teenager is very excited to be old enough to attend. Last night was the Flamingo Birthday party. I was very very much looking forward to it, and very excited to share the slow progression of my service dog application with my neighbors. Very excited also to see what cocktails would be served as this particular host does not disappoint. (I ended up with a Jack Daniels canned cocktail of lemonade and honey whiskey, delicious.)

I suspected this was a recipe for disaster, but was so looking forward to relaxing with neighbors and laughing after a hard week. I had been up since 3 a.m., worked almost a full day with odd results on my metrics, went to the gym at 5 p.m. and inadvertently skipped dinner. The party started at 7, but I opted to wait for The Teenager to get home from work at 7:30 pm.

I’m skipping around chronology here, but my brain was doing this same jumps for much of the day, fatigue leaving me not quite here nor there. When I left for the gym at 4:40 — it’s about a 10 minute walk — I discovered a package from my stepmother’s business.

How honest should I be? This package struck fear into my heart. I didn’t want to open it. But I had to open it. I haven’t heard from anyone in my family for months and it seems like some people in it are getting harder to get a hold of, but I know rationally it’s a busy time of year and we’re all still recovering from the loss of our patriarch and trying to figure out how to fill that void. So of course I open the large but light box.

There is a beautiful card inside with a thoughtful inscription from my stepmother. She had a quilt made for me of my dad’s things. I cried. Because this week has been hard for me and I’ve been trying to hide just how hard and wishing I had my dad to listen and make me laugh. And not many people other than my mother and I would care, but Tuesday was my parents’ wedding anniversary.

I almost carried the bulky blanket with me to the gym because I didn’t want to put it down. Luckily, the Teenager got home in the knick of time to take it away from me.

We did a fantastic upper body workout at the gym, with some core exercises that used the legs which I very much needed. I had skipped Wednesday’s workout not knowing the source of the nerve pain. The workout pushed my arms and stretched out my extended person, who was very stiff.

Once I made it to the party, I sat by the fire pit in the yard (wearing the Teenager’s Stitch Fix mock leather jacket because I didn’t want to fight the kittens in my room to get my very stylish jean jacket) sipping my cocktail. I had rejected my first seat because the Adirondack chair made my back and hip very uncomfortable. All day my right lower back muscle had been straining oddly, and I thought maybe the cortisone shot in my foot had caused me to move my body differently.

We moved into the house for ring bologna, cheese, pretzels and chocolate-on-chocolate cake. If you are looking for me in the photo, I am second from the left with the Teenager beside me. My exhaustion kicked in high gear. The Teenager had to leave for work at 8:45 p.m., another overnight dog-owning client, so I thought it best to follow her home. Which, for the record, is across the street.

Now, I attend these parties barefoot as long as the weather allows. The Teenager and I leave the house, descend the front stairs, and reach the sidewalk. I think I took two steps on the old sidewalk and I lost my balance. Badly. Tried to regain my footing and couldn’t. I fell onto the Teenager who allowed me to ricochet off her without budging. Like a mighty tree.

And then she looked down and said, “You okay? You getting up or are you dead?”

If you don’t live with someone clumsy or someone with a condition like cerebral palsy prone to these kind of incidents, you might find that cold and cruel. It’s not. It’s practical and allows me to retain some dignity as I collect myself. My daughter knows I don’t need fuss, that I’ll let you know when it’s time to panic. It might be a little later than it should be, but eventually I’ll let you know. We might stop at the Chinese Buffet with a broken ankle, but eventually I’ll end up at Urgent Care when I need it.

I knew I stubbed my toes and my palms and my elbow was screaming, but I was praising whatever entity was watching over me that I had the heavy jacket to protect my arms. My glasses were still on my face. My face never hit the cement. We were good. I just hoped the jacket had survived.

“It will make it look cooler,” the Teenager said.

I crossed the street and took inventory. My elbow was bleeding and was very tender to the touch. My other scrapes were inconsequential. I checked my phone for clues as to what might be happening.

Holy shit.

Let me just start my saying that even with the explanations offered by Apple and Google, I don’t understand exactly how to analyze double support time, walking steadiness and walking asymmetry as recorded by my phone. I look for patterns. I know my phone does not consider me a fall risk, so I rule that algorithm-based tool out as useless for me.

I know, in general, that when my asymmetry reaches 10% or more I tend to fall. This shows two spikes, one at 53% on the walk to the gym, and another at 58% on the way to my neighbor’s house. As best I understand, this means one foot is walking faster than the other. Did the cortisone shot make it so I can’t feel my foot enough to use it? Is this foot unable to keep up with the other? This idea terrifies me.

I cleaned up as best I could and collapsed in bed struggling to get comfortable with my elbow bothering me and my back hurting worse. My brain was calculating and worrying and fighting the downward spiral.

That’s where I’m at. Except I’m cuddled on the couch in my dad blanket.

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.

Question of the day: Am I disabled enough for a service dog?

This is a hard post to write.

That’s the thing about disability— it like a kaleidoscope of worry and health and what you can and suddenly can’t and then can do. It’s a revolving door of chaos and bodily revolt.

Don’t get me wrong. I know I am lucky. Every damn day I get up, take care of myself, go to work, pursue my side business, go to the gym, and try to do what’s right for the teenager and the pets.

I can walk, even if I may never run that 5K I dream about. I work in a warehouse, even if sometimes it’s hard. I try to listen to and take care of my body. And I am grateful.

But despite all the doctors, the physical therapy, the personal trainer (thank you Apex Training), the vitamins, the stretching, the medication and the regular visits to my lovely chiropractor, Nicole Jensen of Back in Line Chiropractic and wellness center, I still “randomly” have accidents.

I trip over my own two feet and have hands that look like this:

And I fall through the old screen door in the garage.

I burst a tendon and spend 12+ weeks nursing mallet finger from taking off my socks.

I’ve broken bones, smashed teeth, fallen down stairs (most recently at the hospital).

I’m getting older and I’m falling more. In a few more years, the teenager will be a full-fledged young adult and won’t necessarily be here to babysit me.

So I filled out a pre-qualification questionnaire. I probably won’t be disabled enough to warrant a dog, but I have the means to pay for it. I live independently and my condition cannot be mitigated with medication.

But I can walk and function you say, and I do. What could a dog possibly do?

  • Help me take off (and put on) my shoes and socks
  • Help me retrieve objects from the floor when I can’t bend.
  • Help me retrieve objects when I fall.
  • Help me get up when I fall.
  • Help me up and down the stairs.
  • Bark to alert neighbors or people in the household that I need help.*
  • And I wonder if a dog could “nudge” me if it notices I am unstable and get me to fix my gait or rest.

* this one is apparently controversial — some trainers claim barking in any form is a nuisance and that a service dog should never bother/impact the general public.

Like any topic within disability, it’s complex. But with each fall I take I feel progressively more vulnerable and fragile. It feels like another option to consider.

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.

I fell down the stairs at the hospital

It’s 7:53 a.m.

A little less than an hour ago I left home to walk to the hospital for my head CT.

It was raining, with flurries mixed in, and I didn’t think to bring a hat, a hood or an umbrella. I don’t mind getting damp, and the moisture helps tame my curls.

The walk to the hospital was uneventful. I was confused where to find the radiology department so I looked up the address: 250 S. 21st Street.

Now, I always get 21st Street and 22nd Street mixed up in my head. So to be sure imaging wasn’t in a separate building, I walked down to 21st Street.

That was mistake number one.

Imaging and radiology is in the main hospital. The main hospital was built over 21st Street, so to get to the entrance I had to backtrack, and go up to hills will black ice, to 19th Street.

I walked in, waited in line, and was politely told I needed to go outside, to the left and to the left again.

In other words, imaging was next to the Emergency Room which was where I started backtracking.

Bit extra steps are good. Let’s stay positive.

I leave, go down the concrete stairs between the hospital and the parking garage, trying to confirm where I need to go. I suspected radiology was next to the ER but I had just been told “left and left again” and I get my left and right mixed up, especially when I’m nervous.

And now I’m nervous and hurrying. In winter weather.

I forgot the stairs by the hospital are built like speed bumps… one step… walk more than a side walk square… a staircase of about five steps… more single steps. All painters with yellow stripes.

I missed one. I did a lovely corkscrew spin and bounced along the sidewalk.

I got up, kept walking, fighting tears and trying not to hyperventilate.

Because physically I am not in my best shape today. (More detail here.)

I walk into radiology and I tell the admissions clerk, “I have a CT at 7:30 and I just fell down the stairs coming from the main registration desk, I’m fine but I’m a little shaken.”

She, of course, wanted to know if I needed to be examined. I said no.

Then she assumed it was icy. I said, “no, I have cerebral palsy and I just missed the step and once I go down I can’t stop it.”

Her next thought was, “why didn’t they have someone bring you through the hospital. Why did they make you go outside?”

I replied, “I just did what they told me.”

The next fun part of the journey was once again I was told that Medicaid denied my procedure. I told them I qualified for Medicaid for one month in 2020 and they have not paid for anything since that month.

“But you qualify,” they insisted. “Or it wouldn’t be there.”

Just let me have my CT scan, especially now that I’ve hurt myself.

They take me back, and I thought maybe I should go to the restroom and wash my scraped hands but the tech assures me it will be five minutes. So I figure it can wait.

The scan was very cool. I have never had a CT scan or an MRI. They stuck me in the tube and I noticed the sleek black ring inside the tube that had a bright ball in it, like a star. I was told to be still so I closed my eyes.

The machine roared like my clothing dryer, the table shifted, and I was done.

I then once again thought about the restroom but it was 7:30 and my teenager needed to be at work at 8, and I thought maybe I could catch her.

But the sidewalks were slick and now the snow was coming down. It was coating everything. So I didn’t get home in time to see her.

But, between the cold, my nerves, and the fall, I suddenly realized I needed to urinate. And as the greatest insult to my pride today, I started to pee myself five feet from the toilet.

When I removed my pants, and realized the “accident” wasn’t as bad as it felt, I saw my knee was now bleeding. I have a sore spot on my left thigh up by the hip, two scraped knees, two scraped off palms, a couple scraped knuckles and a sore spot on my left forearm.

My trainer and I agreed that maybe the gym isn’t a good idea today.

And I cracked the screen protector on my phone.

I really, really hope that when the neurologist calls to talk about my CT scan that she can needle the physiatrist about seeing me, because I need help.

I’m scared. And I need to understand what this body can do and what it can’t.

Halloween 2021

As I write this, I am mourning the loss of having finished The Night Shift on Netflix. I am imbibing some generic strawberry lemonade energy drinks strongly laced with too much gin. I am craving potato chips, cuddling my cat Fog, and nursing my injuries from the day.

But perhaps I need to back up…

The photos above summarize my Halloween.

At 11 a.m., we had an appointment for Danu and her babies from the Celtic Pride— Aîné, Baile and Brigid and our newest foster, Georgie, to meet our foster cat godmother for shots, flea treatment, dewormer and microchip and OH MY GOODNESS was Georgie dramatic.

Then the teenager had a commitment to walk in the local Halloween parade and she asked me yesterday to walk with her as she paraded in costume. I will do anything my daughter asks.

And half way through the parade, I fell flat on my face to the collective gasp of the crowd. I rise, keep walking, hip and knee in pain. But I keep going.

#f*ckcerebralpalsy.

I finished the parade. Outside the teenager’s high school. Her father and herself know that the fact that I finished the parade did not mean I was okay as I have been known to do things like walk a Chinese buffet with a broken ankle.

My knee is swollen. I tripped over a mirror late in the day that struck me in the tender parts.

My back hurts.

I am craving potato chips as my body adjusts to the Mirena.

My princess, the male cat I jokingly named Fog, is curled up next to me. He is my baby.

The teenager’s dad came over and they carved pumpkins and I typed some of a manuscript for the identity anthology. We handed out candy and even the dog got to enjoy trick-or-treat.

I ordered Wawa for dinner— the teenager’s favorite ranch Mac and cheese, chicken Caesar salad and pierogie quesadilla and Blizzards from Dairy Queen for dessert.

Tomorrow the teenager is consulting a cleaning woman to take some of the stress off me.