This post is both a brief review of the Postmodern Jukebox performance at the State Theatre for the Arts and a brief update as to my current condition struggling with cerebral palsy.
Monday night I performed well at work, but by the end of the night my right leg and hip were screaming in pain, to the extent where I grew nauseous. I woke up still in pain but had no trouble performing an upper body workout with my trainer, Dan, at Apex Training.
The teenager, recovering from last week’s ear infection, and I did some barbell bench press.
But on the walk home, I was struggling with function in that leg and pain in my knee.
I knew I had a chiropractor appointment with my beloved Nicole Jenson of Back in Line on Wednesday morning so Tuesday night, I called out.
Since the warehouse is encouraging people to take voluntary time off, I called out for Tuesday, took voluntarily time for Wednesday, in addition to the planned time off I had scheduled for Thursday.
The teenager had an appointment with a new ENT today — he put her head under a microscope, pulled out her ear tubes and gave her ears a good cleaning. More importantly, he explained all the different functionality of the ears.
The audiologist gave her a hearing test and she rapidly discovered— the teenager, not the audiologist— that her musical inclinations have allowed her to inadvertently fake the hearing tests at her childhood ENT’s office.
So the audiologist said that the teenager is a good candidate for hearing aids.
We had a leisurely afternoon which included a delivery of apples from my friend Joan who has tasked me with converting them into applesauce and apple butter.
And then… we (the teenager and I) finally embarked on our date, much anticipated by me. The teenager took me out for pancakes.
And then we headed downtown to the State Theatre for the Arts to see Postmodern Jukebox. #pmjtour
The amazing parking spot we procured had a three hour limit, but both the physical meter and the parking app would only let me apply 1 hour and 24 minutes. So, as that was set to expire at 7:23, I used the app to apply that final 45 minutes from inside the theater.
On the way there we passed Hoza, the new African/Zimbabwean restaurant downtown. Very excited to try it.
But the show— blew my mind. The vocals and musicianship was incredible, the costumes a delight and the arrangements of the music on point.
I “fixed” my roomba, had a therapy session that left me sobbing in my psychologist’s office, had an incredible workout (full body as I will be traveling this weekend, but we did a lot of work on hip mobility), and cooked.
The business cards for Parisian Phoenix came in. Thanks to my trusty business partner Gayle.
Perhaps the chaos of earlier this week is finally settling down.
Seen in downtown Easton
So, last Saturday I got my regular Hungryroot order. And Tuesday was Purple Carrot. I wasn’t going to get a box from them this week but they had West African Peanut Stew on the menu.
And then I got a text that Green Chef was on the way.
I promptly canceled Green Chef so there would be no more surprises as they were my least favorite. But that box was on the way.
It arrived yesterday after I left for work. I received this message today.
I certainly hope there is no more food coming.
Because the teenager came down with an ear infection and has so much phlegm in her throat that she can’t swallow. But don’t worry she took some antibiotics and some DayQuil so she could enjoy a Hungryroot burger.
I prepared a bag of greens and a Green Chef meal for Gayle as I am supposed to go to DC this weekend and I can’t physically prepare it all. And M, my host, said I can’t bring it. The result— I now can say I pay my art director in groceries.
Purple Carrot has a $75 Thanksgiving box available. I ordered one.
And today I cooked:
Green Chef Mojito Cauliflower
Purple Carrot Buffalo-style tempeh and roasted sweet potatoes and garlic
Brussel Sprouts
But much to my chagrin— Purple Carrot swapped out the peanut stew for a grilled tofu meal.
Addendum:
From Gayle, after making her Green Chef meal.
I came home and just put everything in the fridge. Brown bag and all.
Pat looked at the recipe when she headed to the bathroom. She made vomiting noises. Not surprising.
I thought I remembered it saying 30 minutes. About 4:30, I started working on it. I didn’t look at the recipe earlier and didn’t realize it had two sides. I was overwhelmed when I saw all the instructions on the other side. I quickly realized that they were dummy proof and that made them longer.
I got the farro on and started the oven, then cut the squash and picked the tarragon. That was the most tedious part of the whole thing. That all went in the oven and I opened the chard. It was nasty. One leaf was probably okay. Glad you gave me other chard. I’m not a fan of raw chard so I wilted it. The nasty stuff went to the compost pile.
The rest of the prep was easy. By the time the farro and squash were done, the rest was too.
I made two portions. One for another day and one for supper. I did not put the apple on the leftover portion because it was already browning.
I was left with two large piles. One was compost and the other was plastic bags. So many bags. One said to pull off the label and recycle it. The rest had no numbers, no nothing so they went in the trash.
It was nice having all the ingredients and a recipe. It was fantastic having something different to eat.
Last week, I moved my follow up bloodwork from Friday October 15 to yesterday in part because I am planning a trip to DC over the weekend.
The morning yesterday started in a discombobulated fashion as my mornings generally do. I was so mixed up by the time my appointment rolled around that I drove right by the office.
The events of the morning had my anxiety on high, and revisiting my past issues with anxiety has not been fun. I even find myself fighting some of familiar behaviors, like stressing about how much money I have in savings and going over budget on food.
At the same time, I had a lunch appointment with my mother who recently lost a brother to cancer and anticipates losing another to the same cancer.
And I’m feeling my body thinking — my right leg isn’t working. I woke yesterday in no pain whatsoever yet something felt very wrong with my right leg, like maybe it was too close to the left one or pointing the wrong way. Very disorienting feeling.
I asked the teenager to take a look and she confirmed that it indeed look “very wrong” so we called Back in Line so my chiropractor Nicole Jensen could take a look.
This meant the whole day involved running from place to place which led to more stress, which increases the tension and the cerebral palsy stiffness in my muscles.
Nicole adjusted me again and aggressively stretched my hips. She also commended me for trying to know my body.
And at work I felt it. Keenly, painfully. Started in my hip, then my spine, then the left side of my lower back, and then the right. Everything hurt. I finished the night at 92% because of the pain.
The pain bothered me all night, and I woke up with it, and believe it or not struggling to carry the 80 lbs of cat litter I needed upstairs may have helped— by relieving tension.
Thank goodness for the gym, as my trainer Dan at Apex Training is very cognizant of how I am moving and has catered my workouts to my health levels.
I’m struggling emotionally right now, and I am physically in pain across my lower body. I can’t afford to stay home from work and I fear tonight will be worse than last night.
This morning, my bloodwork returned. My TSH is normal. My iron is creeping up way slower than I had hoped. My vitamin D was increasing but it hasn’t budged in four months.
And I also got an email with the results of the Artful Dash— officially Gayle beat me. Which she did not. I was a clear two feet ahead of her in the finishing chute.
Yesterday must have been “doctors return patient messages” day because I heard from both my primary care physician’s office and my gynecologist’s staff.
But before I get to that… because that info will primarily be about the female reproductive system and how my issues in that area are compounding the impact of my cerebral palsy (and I know that’s an exciting topic), let me start with the humor in this beautiful Friday morning.
But perhaps the humor started last night with the fire drill at work. The fire alarm itself sounded like crickets chirping in a field. I supposed the sound gets lost in the depth of the warehouse.
The Bizzy Hizzy released us at 9:30 p.m. last night, which is fantastic for my aching body that is still trying to figure out what the hell happened to my hip. (Read about that here.)
I got up this morning hoping to be well-rested and pain-free. I woke up a cuddly Khloe and another phone call from my gynecologist— but I’m skipping those details for now. Let’s just say I have an appointment with them on October 22 and the person who made my appointment has a cat named Mr. Doodlehead.
Khloe
I go downstairs, let the dog out and noticed the Met-Ed truck at my neighbor’s house. The noise of the bucket truck scares the dog. We go inside. I put coffee in the Keurig.
The power goes out.
The bucket truck drives away.
Our own neighbor tries to chase down the crew. Another neighbor starts pacing the sidewalk. A third guy— yes all these people are men— stands in the yard and stares. (He’s the apparently live-in boyfriend of the resident. It’s a weird situation because they met on the internet and I was told it didn’t work but now he appears to be living there after two dates.)
After a little while, I realize I don’t want to open the fridge but I really should have breakfast so I’ll go out. My leg and spine still feel weird after Wednesday’s rather dramatic adjustment— I veto walking to the teenager’s favorite mini-mart gas station. Besides, they might not have power either.
At this point, the dog brings this from the kitchen:
Poop in a can
As if the cat food can wasn’t delectable enough, the teenager must have tossed a bag of animal poop in it. Poop in a meat can! What a treat.
I put on my shoes about to take the dog to Dunkin’ and I realize— I have no idea how to open the garage door manually. So I sit back down and work on the memoir I am proofreading.
But I need food.
So eventually I brave it.
The dog had tried to convince the kittens to play and lost that battle so she needed a pick-me-up, too.
The trip was uneventful. Except I had to drive around the building an extra time because I got to the speaker before I had my order ready. You can see me feed the dog a turkey sausage, egg and cheese wrap here.
And when I got home I realized—
I have no idea how to reconnect the garage door opener.
Now the health stuff…
I am on day three of taking CBD oil.
I am recovering from anemia caused by stress and heavy menstrual bleeding. My menstrual cramps hit me in my spine every two weeks, first for ovulation then for the actual bleeding. My spine already has issues with my SI joint because of all the years of walking crooked due to cerebral palsy. Despite my history of an active lifestyle and my current training program, the pain is getting worse and harder to treat.
CBD cream has been very successful in relaxing tense and spasming muscles in my back.
The gynecologist ordered some blood tests — I go Monday — and the PCP won’t see me until November 2 and I have instructions to follow up with my gynecologist in the meantime.
They requested and I got abdominal and transvaginal ultrasounds which revealed small growths (a benign cyst and a fibroid) in my uterus (looks like adenomyosis) which due to my age will probably cause more pain until menopause.
To alleviate this, they are going to give me the Mirena IUD in two weeks. Which is funny, because the proposed treatment for my back pain is a contraceptive device when I’m 46-years-old and haven’t been that kind of intimate in more than two years.
Fingers crossed that it helps. And that insurance covers it because it costs a thousand dollars.
I had two copper IUDs (Paragard) in the past. The first one lasted the whole ten years. The second was so painful I asked them (honestly begged them) to remove it after the first year.
This is another in my ongoing series about life with cerebral palsy, a disability no one I know seems to understand.
I have eaten thousands of extra calories this weekend. I can’t stop myself. My weight has hit an all-new, all-time high and I am deeply ashamed of my behavior.
I wrote my primary care physician an email midday Thursday after I called out sick from work, but before I slept 12+ hours. I told him: I know you don’t have the answers regarding my cerebral palsy and its long term effect. I know I walk funny and that has caused arthritis type issues in my hip, my SI joint specifically. I understand from working with my chiropractor (Nicole Jensen, Back In Line) who used to be a physical therapist that the instability in my lower body, especially as I compensate when I am pain, comes from these complications. But the only thing that helps the pain is the CBD creams I get online— Charlotte’s Web and CBD Medic specifically.
I have 2-6 bad days a month, usually a couple every two weeks, reinforcing the idea that my late 40-something menstrual cycle is compounding issues. I only get cramps in my back, but I’m also experiencing pain at ovulation.
And it’s bad pain. Just like all my other pain. All in my lower back.
My new gynecologist listened to my complaints of long-term anemia (which makes me too weak to properly deal with all these other struggles), heavy bleeding, pain every two weeks and massive blood clots exiting my body, and prescribed a couple ultrasounds.
The results have been in for almost two weeks and I can see them but I don’t understand them but they did find things, even if not large and scary, but internal organs are small.
I told him, I work with a personal trainer three times a week, and except for stress eating, I eat well and take all my vitamins. I even scheduled my upcoming follow-up bloodwork.
So which doctor do I need to talk to because my schedules anemia follow up is Nov. 2, and I would like to know if any of this can be treated and/or how permanent it is and/or will it get worse?
Meanwhile, my blind friend Nan and I visited Park Avenue Market, one of our favorite places. We both order liverwurst from the deli.
The man slicing our meat, who knows us at this point, comments that he doesn’t know how people can eat liverwurst.
I told him I don’t even like it. It is a little nasty, but that this liverwurst is better than off-the-rack liverwurst. That I’m not a big meat eater and I struggle with getting enough iron as I have a history of anemia. With the right cheese, it’s not so bad, especially with lettuce and good bread.
It’s inexpensive— so if I get sick of it I feed it to the dog and the dog loves me.
He laughed.
“So, you’re buying liverwurst for medicinal purposes?” he remarked.
I haven’t written in a while and I may keep this one skeletal.
I called out sick from work on Thursday and skipped my workout as I woke up in the same pain I had when I went to bed.
I thought I would rest in bed with my laptop and work more on the Parisian Phoenix website, my erotica collection, or even book four of the Fashion and Fiends series, Road Trip.
But instead I had my first Big Mac ever (which is especially odd since I worked my way through college at a McDonalds), ate too much candy and slept for 12 hours straight. The cats did not know what to make of that.
Are you curious how I responded to the Big Mac? See that here.
Friday I moved a little slow but still got decent numbers in QC folding clothes and after work ate too many cheese curls.
But, in my defense, they were amazing cheese curls— sour cream and cheddar— that I found at my local Dollar Tree.
Speaking of food, I also made my final Green Chef meal. Video here. I cheated a bit, adding beef tips, and forgot the pecans and the vegan aioli but it still tasted great.
Tonight I made Purple Carrot’s Fieldstone sausages with roasted fingerling potatoes and vegetables. Another great dish. I also made a side of “leftover sauce” pasta, mixing up every scrap from the fridge.
This morning, the teenager and I met up with Dan at Apex training and I did some lower body while Dan taught the teen to do barbell squats. He started by giving her the bar and evaluating her form and then he gave her some weight.
I think she used some muscles in her knees and legs that she has never used before, not with that range of motion. Let’s just say she was walking like me on the way home.
Then we treated ourselves to some egg sandwiches, grabbed the dog and went to the Feline Urban Rescue and Rehab Yard sale and cake auction. The child spent all my money— but we didn’t buy any cake. She got dog supplies and the massive dog now has a mermaid flotation device and a puffer jacket. And I have my third tea pot in two years. The teenager kills my tea pots.
Even the cats got goodies. See the new water fountain here.
I never saw a cake auction before and it was certainly more fun than the livestock auctions I’ve seen.
The dog was so tired she couldn’t keep her eyes open in the car on the way home.
Then I came home and made a video I’ve been putting off. I kept planning to get a little dressed up, do my makeup, set up a cozy spot on the sunporch and made a video of me reading a little of my novel.
Instead, I did it in sweatpants on the couch with the dog. See it here.
I have mixed feelings about surprises. I like good, controlled surprises but I hate when people try to pull one over on me.
But I do like surprising people.
That statement came from one of my bosses tonight after she heard I wrote a novel that had been published by Parisian Phoenixand was available at major online retailers. (Like here.)
“I didn’t know you were a writer.”
I mentioned it to her because I know she adores her cat and she knows I do cat fostering and rehab work. So I wanted her to know I was donating $1 for every print book sold toFeline Urban Rescue and Rehab.
I teased her that there was a lot she didn’t know about me. Like when I traveled to Siberia for pizza. And visiting Yemen and Somalia.
It always makes me feel good to stand out for things I can control— my hobbies, my opinions, my talents— versus the fact that I walk funny and fall a lot.
So good morning all, and I have to say it’s a gorgeous Saturday and I had another great workout at Apex Training with my trainer Dan.
Me in my Best Strong t-shirt
The photo is actually from Thursday’s workout, taken by Dan so I could tag #NickBestStrongman on social media, which I did and his official Instagram account started following me.
But today, the teenager got up early and came with me to the gym. The teenager is super strong and very balanced with the use of her body, full of power, so I wanted her to have the chance to really lift.
I think she’d be an amazing powerlifter.
And she did most of my weights at the gym today without breaking a sweat. Flexibility is her weakness. Balance is mine. Well, other than the cerebral palsy.
The teenager and I did a barbell bench press of 55 pounds, and did some hex deadlifts as well.
I came home and had an almost vegan breakfast— cream of wheat, vanilla soy milk, fresh artisan cashew butter from The Peanut Company in Cape May, dried blueberries, chia seeds and the one animal product, local honey. That was so delicious.
I left for work today with the remnants of Hurricane Ida dumping sheets of rain on the Lehigh Valley, and I was honestly thinking that I’m grateful to have a job I like and a wage that keeps me from feeling like I’m on the verge of poverty.
With my past stressful work experiences I like the challenges and the environment at my warehouse job.
Because this post discusses my disability and itsimpact on my work performance and the struggle this creates for my employer to be fair, I am not naming that employer. If you read my blog with any sort of regularity, you know who it is. Let me be clear: I am NOT critiquing my employer or my local warehouse’s management.
I want to share the thoughts and questions as they run through my head.
I essentially fold clothes for a living. I often wonder what would happen if we made piece rate instead of the current wage. I make $18 per hour to fold clothes, but the expectation is that I will fold at least 90 items per hour. Now, I’m oversimplifying.
Most of the time, I reach 96-99% of this number. Tonight and Monday— 99%. Friday might have been 97%. But 3-4 days a month I only do 85.
My supervisor keeps asking what “they” can do to help— especially since in my weekly observations I routinely get 108%. It really bothers them that I am not at 100% or even consistant. My supervisor periodically makes it sound like she has to defend me in HR meetings.
I want to be able to say you are fully performing.
Supervisor
I have cerebral palsy, arthritis in my S1 joint and am also struggling with anemia. How do I explain this converges with my menstrual cycle not once but twice a month to leave me fighting pain and discomfort no medication I’ve found can touch?
How do I (and why do I have to) explain that cerebral palsy means the messages between my brain and my body don’t fire correctly and that my muscles stiffen?
How do I explain that anemia prevents me from moving any faster?
They give me examples of accommodations— sitting throughout the night, for example. (That would make my back stiffen even worse.)
I was told tonight that every employee needs to meet three areas of expectation— attendance (I got that), “culture” (meaning I have a good attitude and demonstrate their corporate values) and job performance.
I need to meet the numerical metrics in two work centers. So far, after ten months, I am 96-99% on one. And I seem to be a C student in all the others.
I get it. It’s a warehouse. You need metrics. We need to meet the numbers. But I’m so damn close. It’s not like I’m miles away. 99%.
I hope they really help me succeed. There was discussion today of potentially needing to take a medical accommodation form to my doctor. The problem with that is— my doctor doesn’t understand CP. I am still looking for the same answers my employer wants.
Am I wrong to want to do physical work when I don’t have the same body as everyone else?
Angel Ackerman 