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?
When I was little, my mother used to receive a lot of bad news from doctors. She was told her baby wouldn’t survive. Wouldn’t walk. Wouldn’t talk. Would have cognitive impairments. Would never go to school.
It’s how I got my name— Angel— the baby that wasn’t going to survive. Who stayed in the hospital for months.
So my mom stopped taking me to doctors. The only time I visited a doctor was for school mandated physicals and vaccines.
It has taken me decades to find doctors who listen and care, and now I have a certain respect and not pity… not empathy… but maybe compassion for doctors because we expect them to know so much.
We hope they have answers and cures. And they want to provide answers and cures.
But people are complex machines.
And I’m realizing — my doctors don’t necessarily know much about cerebral palsy. It’s such a generic blanket term. In addition, I have mild cerebral palsy, which means you can tell there is something wrong with my legs but it’s hard to say what.
One friend said when he met me he thought I had a hip issue. A work colleague once asked if my knees were broken as a child.
So last week I received a mysterious phone call from my doctor’s office that was actually from my doctor. I called back, but no one knew why he called. I said I planned on emailing my questions to the office Monday. Which I did. And set up physical therapy. For today. And scheduled a follow up visit. Also today.
But Tuesday night, at 5:20 pm, he called again. And he said (amid other explanations that I already received from my chiropractor) that if I were 70 or 80 the condition of my lower back would be considered normal, but at my age it was definitely cause for concern.
Great.
And he said we may need to look into accommodations or restrictions at work.
Great.
My job isn’t perfect but I like it and I don’t want to lose it. It gives me time to think and focus on my own ideas and I like that.
This caused a lot of fear in my heart, even in the morning while sharing croissants from Lidl with the teenager.
I worked a full eight hours Monday and Tuesday, something we haven’t been doing often with supply chain issues.
Monday I QCed 105 fixes. Tuesday 115. Down from my average 126. And I hurt. Which sucks. So I pledged I would talk to my supervisor last night, to learn what I need to do when I go to the doctor.
Frustratingly, we use an app to organize these things and it’s not been very user-friendly for me. But let’s not dwell on what hasn’t happened yet.
I made the choice to work at a new table last night. On the left instead of the right, wondering if the shift in my pain stems from “leaning” to the right to send boxes down the line. My colleague who has had back surgery recently wonders if it’s something to do with dominant side.
My peers see me struggle (while the person at the station behind me QCed 170 fixes last night.) Even though I have no formal accommodations or restrictions, they bring me work that requires less twisting and bending.
First they parked a whole rack of completed refixes next to me, and when I finished those (with the help of my colleague who had back surgery), one of my peers boxed the bottom two fixes in each cart when he could.
Things little changes help. And they make me feel like part of the team and less broken. With the upcoming change to day shift, I’m worried this camaraderie will be lost.
Pain is exhausting.
Fear is debilitating.
The efforts I (and others) made last night did reduce my pain and it stayed in the middle of my back and didn’t spread or intensify. So maybe fear can become hope.
Reactions are the hardest. I still struggle to navigate people’s reactions to me. Even when they are friends or family or someone I work with everyday. Some people worry. Some people ignore the disabled part of you. Some people crack painful jokes.
I get that people don’t always know what to do. I get that it’s hard. But I also know how it feels to be trapped in your own head with an injury or a disability.
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 am in my 40s, and struggling with the effects of a life of always walking crooked thanks to cerebral palsy, a disability I have but, until recently, have known nothing about.
And issues in my spine, while not serious, are affecting my mobility and causing me pain.
But today— in part because we only worked until 7:30 pm at the Stitch Fix Bizzy Hizzy— I woke up well rested, only minimally stiff and only minimally hurting. At 8 am no less.
Our charming mutt F. Bean Barker refused to go to bed in the teenager’s room last night because one of our fosters, a former community cat named Georgie, intimidated her. Bean expected me to let her sleep in my room and when I said no she retreated to her crate in the living room. So I let her spend the night. I have spent a lot of time with this dog in the last 24 hours.
I tied a rope around her tire toy gifted to her by my trainer, Dan, at Apex Training and now it’s the best toy ever. See video here.
I was the first one out of bed which meant a swarm of hungry cats outside my door, and I couldn’t keep them all at bay. It was easier to let them in. But our foster Mars totally knows how to knock over the birdcage. Which he did. While I was on the phone with my blind friend Nan and consuming my first cup of coffee.
Nan recently started physical therapy for an issue in her shoulder causing pain and finger numbness. The physical therapist had never worked with a blind client before and was a quick study. He even discovered that some of Nan’s issue might be mobility issues in her neck— because when you’re blind you don’t have many reasons to turn your head or look up and down.
Finally, things settle down and while the parakeet is out he is safe. The teenager and I head to Apex where she gets that barbell and deadlifts 135 lbs. I still felt good at that point.
And then the matriarch from laFamilia Velez stopped by and brought me chili which I had for a late breakfast and we talked about marketing for my Fashion and Fiends books. And my goals for Parisian Phoenix in general.
She left, and I finished proofing Darrell Parry’s soon-to-be released poetry book. I placed a few more essays in the nonfiction identity anthology.
And the poor teenager has had a hectic and exhausting couple days— so I cooked.
She has options for dinner when she returns from the diner. She’s given notice at the diner as she has accepted employment with a local pet care company.
First I made sausage and peppers to put over spaghetti.
Then I also made the Purple Carrot Peanut Tofu Stir Fry which I jazzed up with some edamame and sesame sticks.
Mostly I am just sitting around marveling at how pain free I feel. I miss that.
Learning about your own body, exploring treatment options and trying to survive while doing it is exhausting.
I shared my plan to advocate for myself with my life coach from Ginger. And we also discussed some of my fears of where this could go.
And today I asked Dr. Nicole Jensen of Back in Line Wellness Center her thoughts.
She was kind enough to get out her spine and explain things to me. And she said I moved beautifully today, which could be a sign that the short shifts I’ve had this week are taking stress off my body.
She had never seen retrolisthesis in a group like this — and reported that the pedicles appearing in tact was great news. But basically that slight shift in the discs from the retrolisthesis would put pressure on the nerves.
And that the disc space narrowing was arthritis.
So to continue my work with my trainer— and she is impressed by his attentiveness and ability to adjust workouts to medical needs, pursue physical therapy, and try an inversion table. It might stretch out those irregular curves of the lumbar spine. Core exercises will be super important, and I wonder if my commitment to my core throughout my adult life has contributed to this good report.
Dr. Jensen asked for business cards from Dan at Apex Training. Because based on what she’s heard from me she would recommend him to her clients.
I’m noting these discussions and plan to email my doctor Monday.
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 comesto 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.
These photos try to capture my one year pin.
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.
I saw my primary care physician today. It was a scheduled follow up to some anemia-related issues I had over the summer, but, after reminding me what the visit was originally scheduled for, my doctor (knowing me?) added, “so are there any new problems?”
To which I replied, “I always have new problems.”
We went through my bloodwork— my iron has improved significantly and apparently I haven’t been taking enough vitamin D. The improvement has been good, and brought me into the normal range, but not enough to prepare me for the dark winter months.
After a discussion of my plan for my weight, he assessed my ailing hips. The range of motion from every angle is limited. And my back is definitely tight.
I have five scripts for x-rays, and am sitting in an urgent care waiting for them. I just got done at the dentist, and the dentist mentioned that my dental hygiene has been half-assed and took its toll.
The teenager is in the car reading a novel for her English class and I can’t help but stress about the decisions I have ahead of me— especially as pertains to my body, my routines and my job.
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.
My husband and I celebrated our 22nd wedding anniversary today and, even though we have been separated for two-and-a-half years, we inadvertently spent it together.
My mother celebrated her 67th birthday today, and I postponed her birthday until next week because one of her brothers died on Thursday. The second brother to die of prostate cancer in about a month. And her ex-brother-in-law died last week, too.
The day started strong with the teenager and I killing our workout at Apex Training with Dan. I also ordered an Apex Training hoodie. The teenager and I benched 70lbs on the barbell, and the teen also did some hearty squats.
We signed five cats up for the “come adopt us” event with Feline Urban Rescue and Rehab. One of them was sweet Khloe. Khloe hid under the blanket with one eye poking out the whole time, until she heard my voice, then she came out. Not bad for a first day out.
Photo of me waking up with a Khloe scarf
So the husband came over to retrieve his car from the teen and do his laundry and assign his ISBN to his poetry manuscript.
He then rewarded us with pizza.
I did some more work for Parisian Phoenix and some more cleaning, and then the teenager asked me to come down to the diner for coffee and my favorite pie.
Photo: waiting for my daughter at Tic Toc Family Restaurant
This morning my legs felt more normal than they have in weeks and everything seemed to be working in coordination. But as the day wore on everything started stiffening up. It was the first time in about a month my right quad wasn’t burning all day.
It’s is almost 3:30 p.m. on a crisp autumn Friday afternoon. I normally would be standing in front of the daily work schedule at the warehouse, but today they offered us voluntary time off. And my body needs it.
I had a chiropractor appointment today, about ten days after my last one. I described my symptoms as a lot of back pain that made basic movements like stretching in front of me to move a pile of clothes from one spot to another very uncomfortable, to my left leg feeling immobile like a tree trunk while my right was very flexible but weak and prone to discomfort.
And she noted that my left hip was stiff and locked in a position out of alignment. And she concurs with my assessment that it’s time to ask my doctor for some x-rays.
She asked what I was doing this weekend as she moved my bones around and I answered I had some work to do for my publishing company and that I have to drop a copy of my novel off at the Mary Meuser Memorial Library, my local public library.
And she thought I meant an overdue library book.
So, I corrected her.
And then she and her staff, the three of them, engaged me in a lively conversation about my book as the bought copies.
I did stop at the library. I did give them a copy. The teenager is appearing in the Wilson Centennial/Halloween parade with the library staff as the library mouse.
Last night, I had an interesting text message from a former colleague who left my last place of employment around the same time the man who hired me also left. She apparently has landed in a much better place, two years later, at a similar nonprofit with a larger service area. She texted me as I was pulling into the parking lot at the Hizzy and asked me if I would consider a position in her office.
I sent her the resume I had on my phone and she talked to her boss on my behalf.
Because I was “awesome” and “under appreciated” at my last nonprofit position.
Regardless of if or when this goes anywhere, it’s always uplifting to see that someone acknowledges who you are and what you have been through.
Another thing that can be frustrating or uplifting, our dog, F. Bean Barker, the black lab, pit bull and mastiff mix
We left work early last night, after shipping about 1900 men’s fixes. I have this equation I work in my head. On nights when they offer us VTO (voluntary time off), I survey the valleys of people doing my job. I count them roughly, using my journalist-surveying the crowd skills, and then I estimate, based on who I see and their skill levels, how many fixes I think we will be able to ship an hour. Then, when the leads call out our progress announcing how many we have shipped or how many we have left, I do the math in my head.
And last night, when they suggested that we could VTO after shipping 1840 fixes, I did my calculation (and gave more extra time since most of us and very inexperienced in men’s fixues) and thought we would be done by 9:30. The leads kept suggesting about 10 p.m. But I trusted my gut. And sure enough, we got the call of VTO at 9:20.
Also today, I have been editing and doing projects for Parisian Phoenix with breaks when my eyes hurt. I use those breaks to clean, because the teenager has booked a consultation with a cleaning lady for Monday. Her idea is if we have someone help me with the vacuuming, dusting, floors, nose-printed windows, and bathroom maintenance that maybe it would be easier for me to survive my bad days and get ahead on so many projects we have.
I did some furniture rearranging and my floor scrubbing and a whole lot of laundry, including I finally took the time to empty the chest on our sun porch and move the “winter things” into the hope chest we brought downstairs to sit under the winter coats on their hooks more than a year ago.
Oz, one of our personal cats, is on my lap while I work today.
After I update my blog and the Parisian Phoenix website with the story of how I accidentally started a podcast, my next task will be to explore the handwritten manuscript that one of our authors prepared for me. I’ve been looking forward to her tale for quite some time, but I don’t have the best typing skills so I have been saving it for a day when I have a nice block of uninterrupted time.
And then, I will rest by folding laundry. And when the teenager returns home from her waitressing gig, we will have tacos for dinner.
Tomorrow FIVE of our Feline Urban Rescue and Rehab fosters are headed to Petsmart for the adoption meet and greet. These babies need homes!
We signed up: Khloe (a four or so year old female grey torbie), Slim Shady and Eminem (the bestest, sweetest kittens ever, Shady is a black female and Em is a grey tabby with white feet, male) and Mars and Minerva, the tuxedo siblings who have been in foster for more than a year.
Angel Ackerman 