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.
This is a post about Wednesday. It is now Friday, but I made these notes after my Wednesday night when I experienced a sense of piece and hope— I was in minimal pain and did 94% of my metrics in my home department at work, folding clothes.
The air was frigid with ice on the cars, but I was wearing the teenager’s letterman jacket (and I made the wise crack to my favorite security guard that it was not my jacket, she had left it in the car, and I know it must be really hard to believe that I was not in marching band.)
I knew the end of this week would be draining, even before they announced the elimination of our shift at the Stitch Fix warehouse as they transition from two shifts a day, five days a week to operations seven days a week. (As second shift workers, we get first choice of the shifts available, so the company is trying to accommodate preferences, but every shift starts before 7 a.m. so that sounds like torture.)
So Wednesday was dentist day.
I thought the teenager and I had appointments at 9:40, which meant retrieving the child from school at 9 a.m.
She made me an offer I could not refuse. If she peeled and quartered the apples our friend Photographer Joan of Plastiqueville brought so that I could make apple butter as I promised, could she just skip first period?
I said sure. That meant I could sleep until 8 a.m.
I think she later regretted her choice as she has still not finished.
Hopefully today I can use my voluntary time off to get this into jars.
And in true Angel fashion, at 8:45 a.m., I discovered our appointment is at 10:40, not 9:40.
The hygienist and dentist gave me a disappointed talking to about my teeth— apparently my middle of the night tooth brushing has been half-assed.
But no major issues.
So the day prior my physician has ordered x-rays of my spine, si joints and hips.
I thought with the shift change, the information in those scans was more important than ever. And there is a radiology office in the urgent care across the street from my dentist. I asked the teenager if we should stop.
My doctors office had recommended one of these smaller urgent cares as they might be less busy than the hospital or the central outpatient radiology office by the warehouse.
My gut said go there.
I didn’t listen.
Instead I went to the urgent care that my PCP’s office always recommends because it is close to my home and operated by the hospital network he works for. (The Lehigh Valley is in the middle of a hospital war— both St. Luke’s and Lehigh Valley Hospital buying up and building offices everywhere.)
(I watched Lehigh Valley build a hospital near the warehouse, one I believe they have been trying to build for a decade. It opened in July. When I drive by at midnight, it looks deserted.)
Anyway. We go to the urgent care by all the good food. The teenager has a book in the car. It is 11:40 and her next class starts at 12:30. I know the probability is we’re not going to make it, but I need these x-rays and her presence will make sure I don’t procrastinate.
I have been to this urgent care once before— my si joint had locked up and was seizing and neither my chiropractor nor my doctor could see me and I couldn’t even think through the pain.
The staff at this urgent care was lovely, but I waited more than 90 minutes, got told to take a hot bath in Epsom salts, ingest some ibuprofen and the best thing for me would be a massage. And I got a $200 out-of-pocket bill.
I picked this urgent care because the location is convenient and it’s in a higher middle class suburban neighborhood. But they are always understaffed and seems to be frequented by college students with no common sense and a certain element that I hate to classify as unsavory, but let’s just leave it as there was one poor man who needed to go to the ER, even I could see that, but he didn’t want to go.
The doctor was backlogged by 90 minutes so this seems like the normal wait time. I tried to slip out of the office politely but the office person (who was honestly coordinating a three-ring circus and remaining an angel despite it) wouldn’t have it. You see radiology is a different office. I was next in line.
The tech in the radiology room was a delight. I got all the x-rays I needed.
At work, a lot of people were congregating to discuss the upcoming changes. But at this point, I don’t understand the point of wasting time like that especially since things are still getting ironed out.
The Mirena seeks to be helping with my menstrual issues as cramps where they belong and the bleeding is significantly less.
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.
This is another in a series of posts about trying to learn about my cerebral palsy and improve life in my body in general.
As sometimes happen, I woke in pain. I took two Tylenol PM last night so the pain didn’t keep me awake though my cat kept trying to intimidate one of my fosters so that made the six hours of sleep I got rather restless.
I woke to an alarm at shortly after 8 a.m. as I had to be at a doctor’s appointment at 10:05ish and the office is 20 minutes away.
Today was the rescheduled appointment to get my Mirena IUD that will hopefully reduce my heavy menstrual bleeding and my back pain from menstrual cramps. I had another new-to-me doctor today, and this one had an amazing sense of humor.
She was also the first doctor to ask me, upon hearing I had cerebral palsy, if there was anything she needed to do or be aware of to help me. In my case, the answer is no. But if I had worse issues with my flexibility and lower limbs, this would be a good question.
This is my third IUD, although my first Mirena. So nothing unexpected happened during insertion.
There was a pinch here and there and the doctor told me to take ibuprofen for the initial cramping. And to be prepared for a period that might be weird for the next few months. Every woman reacts differently but I may see my periods lighten or even skip cycles.
I did experience some light cramping and spotting but nothing to require OTC painkillers.
But, once I got to work, my right leg seemed to be impossible to control with my quad and knee burning. My ankles also started to burn. My lower back just throbbed, regardless of whether I was twisting or standing still.
By the end of the night I struggled to reach forward or to lift the pile of clothes.
I only QCed 92 fixes. That’s almost 71% of goal. Now granted tonight we were in the men’s Hizzy for the first time ever. It took me 4.5 minutes to do fixes that in women’s takes less than 3.
And they have such nicely organized work stations with drawers.
While listening to my first podcast of the night— 60 songs that explain the 90s— i discovered that Weird Al donated the profits from “Achy Breaky Song” to the cerebral palsy foundation.
My British colleague asked why I’m not on disability. That made me wonder how bad I must look if she says that to me.
In good news, let me regale you as I drink my last pins colada lemonade gin cocktail, the teenager is very excited about the new soap dispenser she bought.
I did a thing and did a soft launch on a Parisian Phoenix podcast on Spotify. I thought my blind friend, Nancy, would like it.
Angel Ackerman 