This Monday is a disability day

Yesterday was a good day at work. I worked all ten hours and packaged 561 items. I came home achy, but not in a horrible way.

Then, today I woke stiff with my bones burning. The temperature had dropped 20 degrees and I thought maybe that had caused the issues in my joints.

I had that feeling — I’ve mentioned it before in my posts about my life with cerebral palsy— that my right leg was not in the hip socket all the way. It didn’t hurt, not really, but the persistent sensation left me queasy and close to vomiting.

The feeling in my hip changed a lot throughout the morning and as the awkwardness and instability in my right leg changed, my lower back began to burn.

Then one of the process leads came around the warehouse offering an early out for all of us— so I told her… I’d like to call my chiropractor, and take the early out.

So I called Dr. Jensen of Back in Line and she, herself, answered the phone.

“I don’t know if you have the time or the interest to see me today,” I said as I explained everything.

She wanted to see me.

So despite the fact that I did 112% in my job yesterday and I believe 105% in QC today, I went to the chiropractor and had a grueling appointment. Things popped. Body parts screamed.

My body still aches— but now my bones no longer feel like they are grinding or that they are pointing the wrong direction.

A new pizza adventure At Nicolosi’s and a post-splinter update

First, let me start this blog entry at the end— with the pizza the teenager and I shared at Nicolosi’s.

Second, I will discuss my performance at the warehouse this week and how my body has felt now that the splinter-wound has finally healed.

So come for the food and stay for the disability talk if you desire.

It’s been at least two weeks since Nicolosi’s in Forks Township started advertising “pizza flights” on Facebook.

Now, as the teenager’s father will confirm, I love trying pizza. He and I once did a pizza tour where I ranked every pizza on a long list of qualities. This was probably 25 years ago.

When Nicolosi’s started advertising these flights— four of their specialty pizzas combined in one square pie for $20– I knew I had to try one. That’s two generous pieces of each variety you choose.

The teenager let me choose so I tried to pick flavors that would appeal to her, too: (Clockwise from top left) Eggplant parmigiana, pierogie pizza without the onions, chicken parmigiana and chicken-bacon-ranch.

I was not prepared for the Halloween decor, like the zombie pizza man, horror movie posters and plush toys from The Nightmare Before Christmas. I was prepared however for the deliciousness.

My favorite (which surprised me) was the eggplant. The staff was super friendly. The place was simple but also strongly quirky. And all of these things make me very excited to go back.

Next time, I’m ordering the garlic knots in vodka sauce and the cannoli dessert pizza.

And now an update on the random things:

Nala is doing well.
The teenager bought me the obscenely large mug from Staples. Click the photo to read about the original attraction to the mug.
I had cookies and milk at work.

Now the more serious stuff…

If you’re new here… I am in my mid-40s trying to learn how to age well with my cerebral palsy which impacts the control and structure of my legs.

As you may recall if you read my previous blog post, I had a great workout Saturday and spent the day showing my college roommate around downtown Easton.

On Sunday I woke up and my wound in the ball of my foot (from my splinter) had healed. I performed at 95% in Freestyle at work that day primarily because my printer and my computer wouldn’t cooperate and I lost 20 minutes trying to fix it.

Monday I was achy but managed to work my full 10-hour shift AND hit 100%.

But I was hurting a bit. Primarily my back. So I changed shoes and went to work Tuesday only to have my spine and both my legs start burning intensely. I still managed to hit 97%.

And I had two small falls at home yesterday.

I woke up hurting in my spine and hip. And anxiety plagued me wondering what the day would bring. I felt much better— but my right hip is uncomfortable. Fairly badly uncomfortable. But I finished my 10-hour shift and by my calculations I had 95%.

Tomorrow I visit my podiatrist. We’ll see what input he has.

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.

Neurology Update

So, I just received a phone call at work from my neurologist’s office. They want me to come in at 8 a.m. Wednesday, because “my” insurance company denied my CT scan.

I use the quotation marks because this letter comes from the insurance company that provided my Medicaid. I received Medicaid four months into my unemployment in November 2020, and I accepted my position at Stitch Fix one week later.

Stitch Fix provides medical insurance as of day one of employment.

To the best of my knowledge, I used Medicaid for one visit to my primary care physician that happened to be scheduled during that week.

I filled out the required paperwork to alert the county assistance office that I had a job, and insurance. I received some paperwork that implied my Medicaid would expire at the end of the year.

But as of January 1, 2021, it still seemed to be hanging around as a secondary insurance policy. Even though I never saw them pay for anything, and my primary insurance was a high deductible plan.

In Spring of 2021, I received a notice that I need to reapply for my medical assistance or it would be canceled as of 8/31/2021. I threw the paperwork away— because I don’t need Medicaid.

But the hospital and the network of doctors associated with it still insisted I had it.

So I thought maybe it would disappear December 31, 2021.

And December 28, 2021 they write the letter denying my CT scan that I photographed and posted above. I receive it around January 5, 2022.

To refresh anyone’s memory or for new readers— I have cerebral palsy but I didn’t really receive medical treatments or interventions as a child, which leaves me now trying to understand my body as it ages. I am approaching my 47th birthday.

My neurologist appointment was December 23 — you can read about that here (and more here) as it was my first ever. I now have an official diagnosis on file with my doctors.

The neurologist’s office scheduled me for a CT scan of my brain on Dec. 30. I was really excited for several reasons: I have never had any CT scan; I am very curious to see what brain damage will be revealed; and my deductible was paid for 2021.

But the office canceled it two hours before the procedure because the insurance company neither approved nor denied the claim.

I find out today that Cigna has approved the scan but Medicaid did not and the neurologist’s office didn’t want me getting a surprise bill.

They canceled a procedure that would have cost me a 10% copay, and now I will pay for it out-of-pocket as my deductible is $1,750. And my HSA will be empty as the teenager is getting hearing aids Friday.

In other physical related items:

  • Yesterday I experienced a lot of steady pain at work. By the end of the day, I couldn’t even reduce my symptoms and sleep was uncomfortable. I blame the fact that they changed our break schedule and we had our last break at 1:50 — leaving us to work three hours without a break, the last three hours of our ten hour shift.
  • I finished yesterday at about 80% of the daily metric.
  • Today, I had a high point at 3 pm of about 95% — and finished the day at 90%.
  • My back today felt better, pain at let’s say 4 instead of 8. But my toes on my right foot burn about 10 minutes out of every 90.
  • Interesting side note, I think the intense back pain involves some nerve activity as when my pain increases I can’t feel my need to urinate. Not at all. So that’s fun.
  • And the Mirena is doing it’s job. But for the first two months, I spotted most of the time. I think I had two days each month where I wasn’t spotting or bleeding. I think that has finally ended. My body seems to act like my body.
  • But today, for some reason, my right breast aches. Kind of like milk let down.
One of my orders today was 8 pounds of jeans

Struggling to find a groove

Change is hard.

Sunday we arrived at work to learn we couldn’t punch in because engineering was upgrading the time clock system. I managed to ship 374 items in 296 packages as part of the Freestyle department.

And my dad— who has been struggling with Covid— ended up back in the hospital.

But then Monday rolled around and I was back in my home department folding clothes.

I was ready to try and excel as the change in shifts has been hard. The ten hour day is amazingly smooth, but getting up at 5 a.m. is exhausting — even if I go to bed at 9 p.m.

And then we changed software and the computers couldn’t keep up with the new system so everyone was working at 80 percent. Okay, I can’t prove everyone, but there’s a day shift woman who told me she always hits her numbers and yesterday she only did 108 instead of 130.

On top of this I had several fixes that I struggled to put in an extra large box and half way through the day the stats went down.

I am struggling to stay motivated and moving without my average time per fix being tracked, let alone no stats at all.

And then some guy drilled each of our table and attached new brooms and butlers. We used to share one or two brooms per valley, now we have about 20.

Many many brooms.

And around 2:30 p.m., a day shift peer was talking to someone who might have been a processing lead and she started hysterically crying for a good 20 minutes.

So I was very glad when yesterday was over. Not only was my back hurting, but my right leg is acting up again and I have intense pains in one of my right toes.

Then today started. My computer doesn’t have a keyboard or a mouse. Just a keypad. And the computer can’t “see” it. Lost ten minutes looking for a mouse until a lead stole one on my behalf.

One of my favorite second shift QC support people— we’ll call him Flying J in honor of the way he buzzes through the valleys with carts under his arms like wings of an airplane— brought me refixes! You know, the fixes that needed to be fixed and come on top of the cart instead of inside.

AND he told day shift that I liked them.

And one of the day shift support people came to see me and said she would bring me as many as she could. Then she paused.

“I don’t know how to say this without offending you,” she said.

“Honey, you can’t offend me.”

“I see the way you work and I see the way you walk—”

I interrupted her. “I have cerebral palsy,” I said. “And right now, my spine is bent the wrong way. I struggle to get the fixes out of slots 7 & 8.”

I was really moved. I am always touched when people want to help.

And today was our December employee luncheon.

Meanwhile, at home, the teenager did a ritual (at my request) for my father’s recovery.

After work, we took the dog for ice cream at The Spot.

Bean Dog eating ice cream video.

Physical Therapy Gone Wicked

Today was my third visit to St. Luke’s Physical Therapy at Anderson Campus.

I love them. I love the impact of physical therapy.

I am probably the perfect candidate to be in physical therapy for the rest of my life.

Today, though, my physical therapist introduced some strength building exercises that I would classify as difficult and a little wicked, in the best way possible.

My homework is to keep stretching my back opposite the direction of my retrolisthesis, especially by doing yoga— cobra pose 50 times a day.

Something is definitely working, so we’ll credit PT.

But my session today started on a treadmill which is always a challenge for me. It requires concentration for me. I have to think about each step and try to walk evenly and correctly.

After an eight minute warm-up, we did some Cobra pose/press-ups, some lifts (the kind where my belly is on the table and I bend my knee at a 90 degree angle and lift my leg from the table using the hip area) and today he slapped on ankle weights, some bridges, some one legged bridges, and a bridge where I hold and lift each leg up (one at a time of course) while keeping my hips up, and some hip stretches moving my leg while standing on the cushion.

It was an intense 30 minutes. So I treated myself to a free holiday blend coffee at Dunkin.

Now, I had a chiropractor appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center next. But I had enough time to run home and use the bathroom.

And feeling spry I hopped to the curb, fell, scraped up my hands and a knee, and apparently flung my phone half way across the neighbor’s yard.

But I arrived at the chiropractor on time and learned that not only is Nicole liking my progress, but she also is on chapter three of my book, Manipulations.

All in all, a good start to the middle of my weekend.

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.

Not a job for neurology

So I woke this morning at a ridiculous 8 a.m. to a world smothered in fog and two foster cats (Khloe and tripod Louise) upset that I did not have time to cuddle.

I had a physical therapy appointment for an initial assessment at 10 a.m. and they needed me in the office by 9:45 a.m. to fill out paperwork— primarily questions about my confidence in my own balance.

Now this isn’t my first rodeo. This isn’t even my first physical therapy stint for back pain.

I was referred to the neurology physical therapy department because of my cerebral palsy.

The physical therapist asks me the typical questions — “have you fallen in the last year?” “I fall approximately every six weeks.”

We discussed my work arrangements and she liked my idea of alternating tables.

She determines that my right side is definitely weaker than my left side. But I can be treated for this at a facility closer to home.

She even calls the facility of my choice so she can make sure they don’t refuse to treat me. All while making it perfectly clear that she would happily do it.

But I am the only patient under 70.

And probably the only one without a walker or a cane.

My new physical therapy appointment is next Friday at 9 a.m.

I came home, ate lunch, and headed to my primary care physician’s office.

There, I spoke with a sweet, quiet resident with an Indian accent I couldn’t hear from under her mask. But she seemed very intent on discussing colon cancer screening.

She brought up a back brace.

I brought up muscle relaxers so my body would not stiffen up overnight.

And when she told my doctor, he said that she had a great idea. I didn’t tell him that was my idea, after I conferred with Dr. Google.

He thinks I should feel some relief with a month. Christmas maybe? Starting off the New Year right?

Tomorrow it’s back to the chiropractor.

The Physical Therapy Phone Calls

If you’re a regular in my portion of the universe, you probably know I’m struggling with some issues that might be described as middle-age or might be complications of a life with cerebral palsy.

I have been talking about this journey more in recent days but certainly rather frequently in the last six months or so.

Today, I finished talking to the last member of my medical team about my plan for my health and my future. That person was my psychologist. And it sounds like he approved of my plan.

So having spoken with everyone— checking their professional opinions against my fear of an emotional response to my disability— I sent an email to my physician outlining my questions and my plan.

I had an email back within the hour from my physician saying I could set up physical therapy and that I should come into the office for a follow up this Thursday.

My doctor’s office had no preference or guidance regarding where to go for physical therapy so I called the generic phone line. They assured me that I could go wherever I wanted.

I asked for a nearby hospital as that is where my blind friend Nan has physical therapy and I hoped maybe we could car pool. Don’t worry— I wouldn’t let Nan drive.

But when they transferred me the person that answered asked me why I needed physical therapy. I said that the x-ray showed retrolisthesis and arthritis my spine that could be a complication from my cerebral palsy.

As soon as she heard “cerebral palsy,” she transferred me to the neurological physical therapy office. But when they looked up my chart, it said “back pain.” And they don’t do that.

By the very very cheery person on the phone and I had a chat— and I asked her— are we treating my back or the cerebral palsy that probably causes the back issues. We both agreed it’s a good question.

She put me on hold twice to confer with the actual physical therapists and they decided to keep me.

I go see them Thursday morning.

Another whirlwind and even less answers

This post will be a mishmash of the last 48 hours and will discuss some of the frustration of dealing with my cerebral palsy, life as Midnight Society comes to a close at the Stitch Fix Bizzy Hizzy, a brief mention of the new Wawa dinners and a thank you to the amazing teenager for her thoughtfulness in hiring a cleaner to help get the house under control.

The supply chain issues still create work shortages at the Bizzy Hizzy warehouse so as Midnight Society prepares for it’s change to day shift in December, some of us are only working about 20-25 hours a week.

I’m using the time to edit manuscripts and make more plans for Parisian Phoenix Publishing and deal with my mobility and pain issues.

The last few nights at work have been good (and last night was my one year anniversary)— I performed at 98% last night in QC folding those Stitch Fix parcels and tonight I think I surpassed 100%. But bending is still troublesome and what I believe are my quads burn the entire time I am standing.

So today was an emotional day. My sweet, amazing teenager hired a cleaner to deep clean the house. The cleaner did the upstairs yesterday and the downstairs today.

The house looks incredible.

And it was fun to interact with someone who wanted to help, loved our crazy animals and commented about how awesome my kid is.

I noticed early today that my X-rays had arrived in my St. Luke’s Hospital portal. I read them and they said my hips were fine, and the only findings on them (other than my new IUD and tampon) mentioned items in my spine.

But when the doctor’s office called at 2 p.m., he just wanted to ship me off to physical therapy. And I’m not sure that’s the whole answer. I work out. I have had physical therapy for my lumbar region already.

Two important questions physical therapy can’t answer:

1. How does this impact my ability to keep doing my job?

When I mentioned this to the person on the phone from my doctor’s office, she asked me what I wanted, mentioning that they could sign me out of work. I said no, I am looking for a more permanent answer than that.

2. How does my general crookedness factor in? The doctor’s office made this sound like no big deal, but I hurt. More often than not. So does my imperfect gait add more stress to this problem?

I’m going to talk to my trainer tomorrow, and my chiropractor Friday. I think there are more questions that need to be asked and I’m not sure what they are.

And in final ridiculous news… I tried a Wawa burger.

It was cheaper and heartier than I expected.