This is another post mostly about my journey into learning more about my body and cerebral palsy.
First off, before I jump into my update, let me give a huge shout out to “the teenager” who solved an issue in my kitchen that had been a thorn in my dad’s side for more than a decade.
I once had him over for a dinner party in the early days of owning this house and during said dinner party, I set a candle on fire in the kitchen. It burned a hole in the countertop. My dad thought he’d buy a replacement as a Christmas present as the counter is probably three feet long.
Problem was it’s an unusual chunk in the corner and needed to be custom cut.
Somehow the teenager got the idea of applying special contact paper designed for counters.
It looks pretty damn cool— my dad would be very proud.
I’ll have to dig up a before photo.
In other news, my boxes of Not an Able-Bodied White Man with Money arrived. (Purchase on Amazon here.) I have an official unboxing planned and a blog entry for Parisian Phoenix but my body is having a minor revolt so the debut will be postponed until tomorrow. AND my credit card reader came.
I do love what Gayle did with the cover.
And now on to my experiment… The background… On Sunday, I performed at 99% preparing packages in Freestyle— pretty impressive considering we had computer problems and a work shortage. And we worked all 10 hours. Yesterday I worked eight hours in my home department and did 131 fixes, which I believe was 101%.
I knew I had a chiropractor appointment at 5 p.m. Monday so I asked Dan, my physical trainer at Apex Training if he would be around for a workout. I knew it might be light, after a workday in the warehouse, but wondered if my body would move differently after visiting Nicole Jensen of Back in Line Chiropractic and Wellness Center.
Nicole made sure everything was stretched and aligned and off I went.
And Dan led me in what would be a light leg workout for most— a lot of squats and floor exercises. He was impressed and honestly I didn’t have to concentrate as much as I usually do.
I woke up this morning in no real pain, and through most of my days doing women’s returns processing, my aches and pains were muscular and not skeletal.
But then, I took a small walk around the neighborhood and things started feeling off. My phone later revealed that my walk was indeed asymmetrical.
So I took a shower and plan to go to bed early as my body is stiff and achy. We’ll see how I feel in the morning.
Monday we had a paid day off for President’s Day and, as I have mentioned, my primary care physician called and scheduled an appointment for me with a physiatrist they recommended.
You may recall this made me very happy.
Nan and I even went out for coffee to celebrate.
But yesterday, as I did what I do folding clothes at the Bizzy Hizzy, I got a call from the physiatrist that they didn’t think they could help me as they specialized in orthopedic care and I probably needed neuromuscular care.
The very kind staff person asked me questions and said she would talk to the doctor on my behalf but that they might cancel my appointment.
I literally started to cry.
And I emailed my psychologist.
Because the difficulty I am having finding medical care seems a tad ridiculous— and every hurdle I cross makes me feel like less of a person.
Or perhaps just less valuable.
When I returned from my first break, the powers-that-be at our Hizzy transferred me to the returns department. Now I love women’s returns processing, but it hurts my body. It must be unloading and swinging the packages around. But I can’t figure it out.
By the end of the day, I wasn’t too horribly in pain, but I definitely felt out-of-whack. I had “vague-booked” on Facebook that seeking medical care should not make one cry.
One of my friends, whom I have known for probably five years now, replied that he might be able to help research doctors. We’ll call him the punk Viking.
Meanwhile my neurologist finally returned my email from several weeks ago recommending another physiatrist.
I called the Punk Viking on the way home from work. He has social work experience and is recuperating from a significant medical intervention. He and I have made a pact of sorts to support each other through our health journeys and try to bring a little more levity to each other’s lives.
And then I woke up at 3 a.m. keenly aware of the fact that my hip had shifted. And I was uncomfortable.
And I went to work uncomfortable.
A bunch of us were scheduled to work women’s inbound processing— which is about 700 steps from the main breakroom for my short legs, the far end of the warehouse.
At 8:50 a.m., we trekked to the breakroom for first break. On the way, my chiropractor’s office called and asked to move my Friday appointment because of the anticipated winter weather. They are calling for snow. I fought tears. They wanted to move my appointment to Monday— but I’m already uncomfortable.
(According to the iPhone my walking was asymmetrical today. It looks like once a week my walk is getting measurably off.)
So, I take an appointment for 5 p.m. Monday. And put in a last minute request to leave early Monday.
We returned to our stations at 9:05 and at 9:15 we had a team meeting back in the breakroom.
During that meeting, the physiatrist’s office called. I can’t answer. So I can only assume they are canceling.
But instead I discovered they have agreed to do an assessment.
I get back to my station at 9:38, and I have a second interview for my application to the safety team at 10. It’s on the complete opposite side of the building— about 1300 steps. When I arrive, I find out the location has been moved to a different room. One, get this, just beyond the breakroom in women’s inbound.
You know, where I started.
The interview went great.
And I had more than 8,000 steps today.
I came home, talked to the Viking, and did some cleaning with the teenager. I’m exhausted. Achy. Stiff.
But if all goes as I hope it will— I should be able to get my business bank account for Parisian Phoenix tomorrow. My LLC came in today!!!!!
Sometimes my journals are nothing but to do lists and shopping lists. But I like lists— even if I never refer to them again, the act of making a list allows me to stop thinking about things.
If I want to refer to it later, I know where to look, but I no longer have to worry about forgetting as if I want to remember or revisit items from an earlier day I can but I am not staring at a list focusing on what needs to be addressed versus what I actually did.
Many people make lists to receive the satisfaction of checking off the things that are done. I don’t do that. Sometimes I do, but now it’s more like I am acknowledging the list versus trying to conquer it.
I used to finish my list every day or stress over the things I didn’t get to, and on top of that— the list never made me feel better or more in control.
It just exhausted me.
Trapped and the Cover for the Anthology Arrive
Parisian Phoenix’s first contemporary romance has arrived and it looks great. Read more about that here.
But I also received the cover for Not An Able-Bodied White Man with Money, which I will be blogging about on the Parisian Phoenix site this weekend.
And I have a 4 p.m. meeting today with another author who I have been hoping would join our family.
Now if only I could finalize some of our business documents to really move the projects forward.
Yesterday (Voluntary Time Off) and evaluating my health
Life at Stitch Fix’s Bizzy Hizzy has been odd lately. We’re shipping something like 8,000 fixes a day and having the opportunity for voluntary time off.
Last week, I performed at pretty damn close to 100% without pain or significant mobility issues. This week, issues started mildly during my Sunday shift and deteriorated Monday & Tuesday, leaving me at 80% and crying myself to sleep. I talked about this here.
I’m very much wondering if my menstrual cycle has something to do with it, as the Mirena IUD has done miracles for my pain and issues in that department but has made my cycle irregular. I think my body is trying to menstruate later than usual.
I was taking inventory of my recent balance, mobility and functioning issues as today I had my annual “wellness visit” that the office rescheduled from last week.
I took VTO yesterday to allow myself some rest and some time as life (and grief from my father’s death two months ago) has gotten chaotic and overwhelming.
And I made the teenager and I grilled cheese as I had promised to do, and the child acted like I had prepared filet mignon for her.
I have a feeling I will be repeating that after school today.
We also watched Miranda Sings Live on Netflix. The teenager went through a time when she watched the show, so that was weird. It always amazes me how much talent it takes to perform badly.
The doctor today
I have spent more than a decade assembling a talented and caring medical team, so now I can confidently say any issues with my medical treatment stem from the system and not from my doctors.
The doctor and his resident agreed with my assessment that it’s time for me to get into the physiatrist and that their office will advocate for me on that as well, and that my instincts and approaches are correct.
I learned that women more so than men tend to favor one side when they move or stand. As women age, this tendency can create problems. That means this is a problem normal people have and not just a result of cerebral palsy.
And most interestingly… I learned that women more so than men tend to favor one side when they move or stand. As women age, this tendency to let’s say ‘lean’ can create problems, just like what I am experiencing now with my right hip and right leg/foot. That means this is a problem normal people have and not just a result of cerebral palsy.
I reiterated to them that I do know I need to lose 20 pounds, but that we have some issues to address before that.
The psychology ofemotional and physical pain
When I was turning 40, I embarked on a journey to lose five pounds and gain muscle. I inadvertently lost 30 lbs and ended up a skeleton and regained some weight to look like this:
That was about 30 pounds ago. I have no need to be that lean again, but I’d really like to see 135 lbs again— which means I need to lose 20 lbs.
I told my doctor and his resident— I know I can’t eat an entire bag of cheese puffs or Wawa bowl of mac and cheese and brisket after dinner. But I’m struggling with depression from my body pain and my father’s unexpected death.
I’m grateful I haven’t turned to alcohol like many in my family, but I have “given in” to food as a psychological crutch.
I pay almost $300 a month for a personal trainer, but I can’t work as hard as I want to because I hurt and I feel like I need answers as to how to move my body so it doesn’t hurt. Because if I could exercise more and move more, I wouldn’t sabotage myself by eating garbage (or if I did, I would be active enough to balance it).
But right now, when I come home from a ten-hour shift with my body twisted and aching badly, and wishing I could call my dad so he could make me laugh and tell me how much it sucks to get old, I grab junk food because it’s the last pleasure I have.
I can’t move without pain so if I’m going to be forced to get fat and lazy I might as well enjoy the process.
These are ugly thoughts and I know that, but I’m being honest.
The fun stuff: errands with Nan
After leaving my primary care doctor, I called Nan as we were scheduled to do some errands together. We stopped at Wawa for some hot caffeinated beverages (cafe con leche for me and vanilla chai for Nan).
Among other stops we visited Park Avenue Market and Deli, one of our favorite haunts known for its deli, salads and meats.
Although I am once again contemplating more of a vegan diet, which will make the teenaged carnivore wince, I am not ready to commit until I feel better. We must achieve discipline before we enact change.
I never got around to meal planning yesterday so I didn’t have a list. I ended up spending $36.89 and I think the results will work.
I purchased: two packs of beef jerky, one small box of minute rice for the teen, three or four teeny tiny bags of Wise snacks from popcorn to potato chips, meatballs, the biggest damn carrot I’ve ever seen, frozen vegetable medley with potatoes and garlic herb sauce, sweet potato crinkle cut fries, pork roll, Lebanon bologna, liverwurst, turkey, olive salad, a store-baked pig ear for the dog and something called “hot pepper shooters”— round hot peppers stuffed with prosciutto and provolone.
Rough meal plan
My rough meal plan for the next week or so is:
Sandwiches
Meatballs and green peppers, either as a sandwich or in pasta
vegetable lasagna still in the freezer from last week
Burgers and fries, using ground beef from the freezer and the sweet potato fries
Cold tortellini salad with roasted carrot, olive salad and seasoned broccoli (broccoli is in the freezer)
Pork roll and egg sandwiches
Chicken and the frozen vegetables and rice or other grain
PS— we also welcomed a new foster into the house. Her name is Babs. Meet her in this video. I need to make her a page.
I have been saving these for a night when I needed a quick dinner. It’s been a challenging week at the Bizzy Hizzy. So I’m glad I had them. The teenager and I both enjoyed them. and this multigrain flat buns are one of my favorites.
Sunday I made this:
The teenager made the meatballs out of ground bison, also from Hungryroot. The tomato sauce was Classico Italian Sausage with peppers and onions and I sautéed everything with some fresh green peppers, Brussel sprouts and sliced green olives. It was amazing. Both served with small shells and also with melted cheese as a sandwich.
The other night, the teenager and I watched Black Panther, which will be discussed in a later post. I tried this popcorn that I got at Lidl for 79 cents.
Chesapeake Bay Style popcorn. Very highly seasoned and nasty. I threw the whole bag out after trying it.
And I never waste food.
But this week has been hard— my body has been hurting in ways I’m not accustomed to. And that’s hard physically and emotionally.
Sunday I worked a decent shift at work but we left early— at 2:15 p.m. instead of 5 p.m.!
But yesterday I was moved from my normal spot on line 5 to the spot behind the shipper/style carder on line 1. It was a poorly set up table that required moving three steps from the table to the line, and then one had to rearrange the boxes to make room.
And the person receiving the boxes rejected many for no good reason AND worked so slow the line was always jammed. Finished the day in pain and at 80% of metrics.
But I got to style card too and that was fun.
Today I was back on my line, but my computer was lagging. Finished the day at 80% again.
And in pain.
I cried myself to sleep last night. Hopefully tonight will be better.
Yesterday I cleaned a lot of my downstairs and had a relatively good work out at Apex. I haven’t felt incredibly strong lately, but my IUD must be working because I’m not in pain.
I had a good week at work, so cleaning, working on Parisian Phoenix projects and watching Cobra Kai suited me just fine yesterday.
I even found two of the dog’s Kong balls under the couch which made for a very happy dog.
Today, I was supposed to have my annual physical but my doctor’s office called yesterday and rescheduled for next week— which also means another week without answers from my CT scan and physiatrist referral. Neither the neurologist nor the physiatrist’s office has called me back.
And I need a doctor that can help me understand the motion and mechanics of my body, and not just its individual parts.
Today I scrubbed the exterior of the stove and did dishes. Then I went to help my blind friend Nan with some errands and grocery shopping.
We made plans to pick up some pizza at Little Caesars so Nan could try the Batman Calzony. No matter how I tried I couldn’t explain what it was to the blind lady. So we bought one.
But we had time to kill before the teenager got out of school even after we put groceries away. We grabbed the dog and got drinks and hash browns (for the dog) at Dunkin.
And then we surprised the teenager with the dog at school.
Then Joan stopper by to drop off some hand-me-down magazines and erotica, cupcakes and photos that Joan needed us to sort.
Now, I’m cuddling with Louise, watching Gotham Garage and enjoying kitten photos.
I don’t have many plans this weekend— defined by my work schedule as Thursday, Friday and Saturday— in part because my body has been unpredictable, the weather has been crazy and the teenager’s work schedule varies.
I went to the chiropractor at 5 p.m. on Wednesday, leaving work 30 minutes early to get the last appointment of the day. I wanted Dr. Jensen to see my body after four ten-hour shifts in Stitch Fix’s Bizzy Hizzy warehouse.
And, for the second or third week in a row, I could barely crawl home on Tuesday night but felt pretty good on Wednesday. So I feel like I’m not getting closer to solutions to my physical issues.
Yesterday I tried to do some work for Parisian Phoenix, did a lot of laundry, visited briefly with a friend I’ve missed and haven’t seen merely enough of, taught a high school student how to write a press release, watched several episodes of Cobra Kai, ran the dishwasher and went to the gym.
The teenager working on her squat form
The teenager did a lot of work on her squat form while I did some accessory work. I also weighed myself— 157 lbs. Sigh. Still 20 pounds overweight.
Then we had Taco Bell, including the new Cinnabon balls.
Today I worked on the index for the Parisian Phoenix nonfiction anthology on marginalized identities, Not an Able-Bodied White Man with Money, which I will be blogging about on the Parisian Phoenix web site later tonight. F. Bean Barker was my helper.
Indexing is only half complete and man does it allow me to interact with the text in new ways.
Louise has an appointment with a potential adopter tomorrow and today she was quite cuddly, video here. I don’t know how she’ll do in the backroom of PetSmart but all least we’ll be with her.
Nala and Louise
In the afternoon, I accompanied the teenager to her audiologist appointment for a tune-up on her hearing aids.
Then we went for shoes. The teenager needed some and I wanted to buy a warmer pair that fit more loosely — hoping that would ease the blistering and burning in my toes.
I didn’t buy these patent leather stilettos.I didn’t buy these tie-dye Vans on clearance I bought these.
The teenager got new black Vans and a new design, the orange blossom Vans.
We ran into Target just to use the bathroom and I told the pouty teenager we could get a drink at Sonic. But turns out Sonic is still drive through only, so if you can’t have drive-in service what’s the point of visiting Sonic?
So we went to Sheetz, and had appetizers. Which would have been fine if the teenager hadn’t suggested going to see her grandmother, my mother-in-law. And her aunt— who recently destroyed her elbow falling on the ice.
We’re finishing Captain America: Civil War right now. The ice is slowly building up outside as the cold rolls into town. And Peter Parker just made his debut in the series.
I often hear people comment about my positive attitude and my ability not to be deterred or disheartened by challenges.
But to an extent, people with a congenital disability don’t have a choice.
In my experience, people with congenital physical disabilities who have the capacity to live independently in the world learn early in life that persistent complaining doesn’t change anything, that there are limits to what can be fixed, and that the only way to succeed in an ableist world is to prove that we can contribute and that we are worthy of space.
To do that, to push those messages and to push those behaviors into the world despite whatever pain or physical challenges face us, requires a lot of strength and energy.
So mood and attitude mean everything. Because if my psychological state fades into grouchy or sad or frustrated, my energy drops. My concentration dissipates. And it’s on the subconscious level.
And it takes more energy for a disabled person to navigate the world.
Really.
It does.
For instance, my blind friend Nancy doesn’t necessarily move from point A to point B in a straight line. Often, she is having a tactile interaction with her environment that requires extra steps and physical behaviors whether that be using her white cane, trailing a wall, or following the body movements of a sighted guide. Hell, if she’s with a sighted guide she can’t even determine her own walking speed. She has to match her companion.
But this also applies to me and my cerebral palsy. Because of lower limb spasticity, my leg muscles don’t relax. I have to concentrate on my body, my posture and my movements with every step. This is exhausting.
A 2010 study by Bell and Davies concluded, “that children with mild CP had a lower physical activity level and lower energy requirements than typically developing children. However, during walking the children with CP expended significantly more energy.”
And I honestly believe I that when my “good attitude” shifts into a darker place, I don’t have the energy for that level of focus and my body revolts.
Grammar police— this piece is full of tense shifts. I’m tired. Deal with it.
We’ve all had that corny job that encourages team building exercises and how uncomfortable that can be when they are telling you to trust someone that frankly you don’t trust.
It’s hard to be vulnerable with new people and new environments and this can lead to us seeming aloof or feeling alienated or shunned by the group.
Yesterday I had a painful day at work, and I’m still struggling emotionally with my father’s death, and compounding all of that is the fact that my sleep has not been that restful.
So imagine me… as the alarm goes off at 4:45 a.m., struggling to stretch out my stiff, spastic lower body and my aching spine. I went to the other side of my room to check on the cats’ food and had to use the vacuum cleaner as a cane.
I stumbled to the shower and afterwards managed to get my bra, shirt and panties on but saved the socks and pants for after coffee.
I prepare my coffee directly into my to-go mug, a FURR fundraiser item that keeps my coffee warm until my first break almost four hours later and lukewarm until lunch.
I email my neurologist asking for help getting a physiatrist appointment. I still wonder if I should be going to work at all. I tell myself if I really can’t function, I’ll call the chiropractor at 9 a.m. and see if I can get an appointment.
I decide it’s time to put on my pants.
But then my pants don’t button.
And I’m not talking about “these are snug,” these are all out as if I were trying to wear a child’s pants. Too much Taco Bell last night.
The teenager did a white wash so there is a pair of sweatpants in the kitchen. I put them on and wrestled with my socks.
I go to get my shoes. The teenager has piled the garbage on top of them. I find other shoes.
I then needed to decide between the pizza I can’t even remember when I ordered it and the pancakes from Friday for lunch.
I grabbed both.
Once at work, they have me assigned to line 5, table 8a. Now, they have the tables on line 5 labeled incorrectly. Somehow, they go 0, 1a, 2a, 3a, 5a, 8a, 4a, 6a, 7a. Someone is already working on the ninth table, which is labeled seven. So just to be clear, I ask my supervisor.
“I am to go to the sixth table, which would if you were going by the labels at the previous lines would be table five, because the actual labels are out of order?”
He looked up. “Oh, yeah. They are.”
But then someone is also at the sixth table which is labeled 8a. The lead on the line does the research and this interloper belongs on an entirely different line, but somehow ends up a few stations ahead of me.
I have to organize the station because it was set up for Freestyle not QC.
And then I see the person on line 4b, across the aisle from me, get an entire rack of refixes. That’s about three hours worth of work.
I went back to the lead who I approached about my interloper. I explained I had a disability and I was having a bad physical and emotional day and, let me paraphrase, I said I wanted refixes, too.
I got them.
The day shift support people and my normally favorite support person brought me refixes all day.
And I learned more about my favorite support person’s family history. And we discussed philosophy and gave each other a pep talk. And the day shift support person was also super supportive.
And it made me feel physically and emotionally better to share the weight of my burdens. I made 98%. Which is amazing — and I haven’t seen numbers that high since October.
The teenager and I headed to the gym this morning for the first time in a while. I did a gentle lower body workout to stretch everything and get my body rolling after the chiropractic adjusted just about everything yesterday. Even my ears.
The teenager wanted to find her max weights for powerlifting— which seem to be 100 pounds on bench and at least 155 on squats.
Tomorrow I head back to work after a weekend of falls and rest.
So that means meal planning and meal prep.
Our Hungryroot box came yesterday and since the app showed they didn’t have much product, I focused our box on mostly proteins.
With leftovers from last week’s box, the new box and pantry items I had in the house, I made this:
Chickpea rotini and beef meatballs with marinara and superfood tomato sauce.
Lemon pesto broccoli
Homemade pesto hummus
Omelet (with green olives)
Tempeh bacon
Brown bread
We also have leftover pizza and pancakes.
So for breakfast after the gym, the teenager had omelet with mozzarella and tempeh bacon on organic, sprouted everything bagels. I went vegan and had my bagel with my hummus and tempeh bacon.
And last night, the teenager and I went to my stepmom’s for Christmas and I got my hand bag. I have been admiring this Urban Expressions work tote since I started at Stitch Fix. I have one now.
If you’re a regular reader here, you may recall I had a fall last week, at the hospital, when I went for a CT scan of my brain. If you missed that episode, you can read about it here
What I didn’t mention is that I also took a second rather more dramatic fall in my kitchen that same day.
I’m rather sure Dr. Nicole Jensen of Back in Line Chiropractic and Wellness Center cringed as I told her this story, and the story about my knee totally facing the wrong way.
This prompted her to adjust my ears— apparently I had some left ear congestion. The adjustment was a rather uncomfortable yank in my earlobes.
Anyway, she mentioned that I tend to “just keep doing until I can’t do no more” which is 100% true and something I learned from both my parents. They both have incredible work ethics.
On Sunday at work in the Stitch Fix Bizzy Hizzy, I believe I hit 96% in packing Freestyle orders. Yesterday, we got shipped to women’s returns processing where I struggled in an attempt to hit 70%. Today I hit about 85% in my home department (QC) despite incredible amounts of pain.
My feet were burning. My joints a little achy. My right quad screaming. A slight nosebleed. And both sides of my hips felt wrong. So I checked walking asymmetry in iHealth.
Definitely periodic issues since yesterday afternoon.
If I’m still uncomfortable and having trouble moving in the morning, I’ll go to work and call the chiropractor when she opens.
Angel Ackerman 