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?
Barbells might be my new obsession. Remember my new shirt from the Fitness Tee Company in Michigan?
“Let’s hit the bar.”
I bought it after my first bench press with the barbell. I have always wanted to lift barbells. I’m fascinated with power lifters, and admire women like Meg Squats. She recently had a baby, but to stay on topic, here is one of her lifting videos: 5 things I wish I knew before I started lifting.
So when my trainer first put me on the bench with a barbell, it was in part to evaluate me. What he didn’t know was my secret burning desire to do it. And it did not disappoint.
Those first couple lifts I learned so much— about form, about using “power zones” in the body, and how a simple bench press uses most of your muscle groups. Fascinating. To see other people do it hints at the complexity, but to do it yourself is a true lightbulb moment to the depth of the interactive mechanics of the human body.
Today I did my first one plate barbell deadlift. Pretty much because my trainer said, “You could totally lift that,” and pointed to the barbell on the floor.
And I said, “I’ve always wanted to.”
You could totally lift that.
Dan, my personal trainer at Apex
So he let me deadlift the one-plate (on each side) barbell. I mimicked his form, which appeared to be underhand and it was a totally different kind of effort from the dumbbell deadlifts I previously completed. Those seemed very concentrated in the butt and legs, these included more of the body in a fluid way.
I did three in that first set and returned to my dumbbell circuit— 10 lb dumbbells in a swing style motion up to a press, 10 reps, followed by 10 bicep curls— before back to the bar. This was my cool down set of the day. And I did 3 more additional sets at the barbell— a set of five, another circuit with the dumbbells, then eight at Dan’s urging, another circuit, and he asked for another eight, but I tapped out after five.
I determined that I prefer underhand grip. Overhand grip puts too much stress on my lower back. Mixed grip is awesome, too, but I think that may require some work before I can up my weight. Mixed grip forces a certain instability and requires more focus on balance, which as a balance exercise would be stellar.
But what does any of this have to do with athletes and disability— the idea I propose in the title?
I have no athletic talent what so ever. My coordination is awful. I tend to walk “all done f*cky” when my health is poor or I am fatigued. I also deal with a myriad of aches and pains from walking crooked and associated issues with my S1 joint.
But my trainer often comments on my form, well, once he reminds me to point my toes for a squat or perfect that lean for a row. He’s even commented that I’m “built for that” while we do certain exercises. That once I correct manually what my brain can’t make my body do automatically, that I use a very deliberate form.
As I’ve mentioned before my weight training is very meditative for me because I am counting (something my trainer and the teenager were discussing because she said even with a decade of band she can’t count) and my trainer said I was good at keeping count, but that many of his clients needed assistance. I am also thinking about control in every motion of the exercise— from each body movement, to pace and control.
And on top of that, I try to note feeling and body function. Though that is touchy. In a “leg day” session a week or two ago, Dan said he noticed something strained about the lift I was doing. He wanted to know if it were legs or back bothering me.
I had to do an extra rep of the exercise to answer him. Because I hadn’t noticed.
“Ankles,” I answered. “My ankles are stiff and shaky today.”
All of this makes me think, and question, how those of us will a mild physical disability like cerebral palsy might be better athletes because we don’t have talent or physical advantages. But we know our bodies and we are accustomed to acknowledging the details of our bodies and their functions.
Does the fact that I am required to concentrate on every motion make me more prone to perform that motion closer to perfection than someone who can breeze through it without thinking about it?
Next, let’s briefly do a Purple Carrot Update. Today I prepped the matcha overnight oats and made the ramen bowl. (Video of matcha prep here.)
The teenager vetoed the homemade miso broth and fresh ramen.
I had the leftover black pepper tofu for dinner and it was soooooooo good, even leftover.
And most Purple Carrot meals take 30 minutes to prepare, which in my kitchen has been translating to 40 minutes. Much better than the cooking marathon caused when a Hello Fresh box comes.
But now to the Bizzy Hizzy. I finally learned the “mailer machine.” It’s a folding machine. We used it to fold the postal service priority mailers that go in each fix.
We had trouble getting the machine to work— so we didn’t really get started until after first break. We folded 4401 mailers.
Basically we unpack the mailers, sort them so they are less likely to jam the machine, and feed/empty the machine. There is a zen to lining up the mailers on the rolling machine, fanning them and making sure they don’t curl.
I was sent to the mailer machine as part of Stitch Fix’s quest to know what tasks I perform best. I perform regularly at 96% in QC but unfortunately when I have bad day that plummets to 85-90%. They raised the pick goal so I only do 75% of that. Apparently I have shown both potential and inconsistency in inbound processing and returns. I apparently tanked in style carding (66%) which I would like to believe was a fluke but maybe not. And a shocking 29% in NAP binning. It was shoes. And it was very painful.
I’m told they want everyone to have two work centers they can perform 100%.
So now I’m at the mailer machine.
If I’m honest with you, and it is very hard for me to say this in public, what I hear is: “You’re not good enough for us, so since you suck at everything, let’s stick you on this machine back in the corner.”
I feel threatened. And like a failure.
And that is not what they said. At all.
But I have a disability that makes me insecure and makes me feel inferior, unworthy. And certain childhood traumas leave me feeling unwanted, and as if I am a burden to everyone.
So I am being honest. For one reason. In case someone else is fighting a similar battle and needs to know he/she/they are not alone.
In 45 minutes, I need to leave for work. It’s Thursday and I feel like I haven’t stopped moving all week. I’m behind on my own commitments and starting to feel panicked.
The pop up kitten cafe fundraiser for Feline Urban Rescue and Rehab is this Sunday.
Although it has required effort from many people, in the last few days this has become my baby.
In the last 24 hours, we received commitments from Just Born candy and Target #2536 (the same Target where I used to work and that experienced a fatal shooting in the parking lot last weekend).
This brings our list of supporters to:
Many individual bakers
Easton Baking Company
Philly Pretzel
Wawa
Wegmans
Giant Food Stores
Keystone Snacks
Chocolate Works
Target
Just Born
Today the teenager and I will be heading to Keystone Snacks to get the Veggie Chips donation.
So that’s the fundraiser but meanwhile real-life goes on. I haven’t worked on William Prystauk‘s upcoming novel in his Kink Noir series, Bondage, in several days. Our personal cat, kitty cancer survivor Opie has a very goopy, wet eyes. This is very unusual for Opealope so I gave him a couple treatments with a chamomile tea eye wash for cats grown and prepared by our fellow foster, Granola Cat Lady.
Despite all this (and only 5 hours sleep from sharing my bed with the teenager’s dog, F. Bean Barker), I still made it to Apex Training for leg day and some warm-up core work. My body was very stiff after that, not really from the workout but because my period is late and doing things to my body.
Although I have to admit I fell on the way to the gym and broke the screen to my iPhone. After 3.5 years I now get to test my SquareTrade insurance.
The other big news is that the teenager installed a new toilet seat in the upstairs bathroom. The old one had screws so stripped it kept falling off while you were sitting on it. Bad news is: our bathroom is 1950s Flamingo Pink. The new toilet seat is white— the only one they had. I hate white toilet seats on colored bowls but I also hate “falling in.” And now that she’s seen it, the teenager agrees.
I finally tried my Emmi Roth cheddar cheese snacks from Hungryroot which were supposed to be for tuna artichoke melts but I couldn’t bring myself to use such fancy cheese on a grilled cheese sandwich. A colleague and I were talking about snacks & cheese so I brought her some and we tried it at the Bizzy Hizzy.
She loved it so much she googled where to buy it. Apparently it’s only available in Wisconsin and Switzerland. It literally melts in your mouth.
After work I went to Sheetz and ordered a pina colada lemonade with immunity boost with my bonus points. It tasted like candy, too thick to be refreshing but definitely very summery. I added some mango vodka when I got home. (Here’s a video if you want to see me talk to myself in a parking lot at midnight.)
And finally, not sure if I mentioned it on the blog, but I’m another step closer to resolving the great EZ Pass Drama of Summer 2021. Did you ever procrastinate something so long it bit you in the ass?
Yeah, so that’s what happened to me.
So, our Nissan Ultima (oh how I loved that car) died suddenly. My husband and I were still together and only had one car. He replaced the Ultima was a used Nissan Juke— a car he had wanted for a while. We moved everything from the Ultima into the Juke.
I had ordered an EZ Pass when I started work on my master’s in world history at West Chester University and was driving down the turnpike at least once a week.
So I knew that the EZ Pass was connected to my car— the Ultima— but I never really used it. I forgot about it. And then I bought my Jetta because I hated the Juke. Our family didn’t really go anywhere. I worked retail so I never really got time off. I had stopped working on my master’s as money got tight and my marriage continued to fail.
I neither returned nor updated the EZ Pass.
My husband returned the box of random things from the Ultima and I, with other things on my mind, tossed the transponder in my car hoping to remember to update it.
I never did.
At this point, I don’t even remember how to access my EZ Pass account.
This summer, the teenager took her grandmother to Cape May. She pulled up to the first toll booth and the toll collector yelled at her for trying to pay the toll.
Being a dutiful child, she trusted the toll collector who told her she had an EZ Pass.
Two weeks later, we get two violations from NJ EZ Pass. $30 in missed tolls and $55 in administrative fees. My daughter and I send a check, but I also send an email stating that I understand I hadn’t updated the EZ Pass, but my daughter had tried to pay the toll and the toll collector yelled at her.
They cashed the check.
Then a couple weeks after that I get a letter from PA Turnpike EZ Pass stating I had insufficient funds in my account and they were threatening to ticket me. Now, my EZ Pass was on a credit card. That credit card expired one month before my daughter’s trip.
I call the number. Because I don’t know my account pin or my transponder number, I am forced to leave a message and they say they will call me back. That was Monday.
A couple days ago I get another letter from NJ EZ Pass. They claim I didn’t pay one of the two violations. I send another email and send them a screen shot from my banking app of the cashed check.
It’s now Thursday. I go to PA EZ Pass and try to remember all my account info. I easily succeed. I look at the “insufficient funds.” $5.37 cents. They also demand $35 to load my account fully. Even though I haven’t used it in three years.
And you can’t just pay what you owe.
I then go to the “manage vehicles” tab, add the Jetta and delete the Ultima. That took five minutes. Had I done that years ago, I could have avoided the whole drama.
Angel Ackerman 