I’ve been trying to gather my thoughts for this blog for 24 hours now. And just when I thought I had them… The Teenager had dinner ready. Then The Teenager left for work and forgot to grab her shopping list.
I went to take a photo of it for her and got the largest splinter I’ve ever had in my life.
(And if you are looking at the photo, you’ll also see all the cracks in my toes from the blisters.)
I hobbled upstairs, dug my tweezers out of the closet and manage to very painfully remove the top half of it.
It’s so wedged deep into my foot and still very painful. I’m soaking it in Epsom salt right now.
Just another reason for my left leg not to work.
It’s already been giving me trouble today and leading to a lot of muscle pain in my back and torso. Even though it’s not responsible of me, I accepted the voluntary early time out at work today and only worked an 8-hour day.
So speaking of work…
Sunday I worked Freestyle which is a department where I can usually hit 100 percent. But Stitch Fix changed our small (#5) envelopes. They had two strips of tape instead of one. They were a tighter fit than the predecessor. And they were just sticky.
I ended the day at 86%.
Yesterday I worked in my home department of QC— at the quirky poorly set up table— and reached 100%. But today I was at a high table and only hit 80%.
Yesterday I saw a sports rehab doctor recommended by my primary care physician for his knowledge and training in orthopedic care. He was going to evaluate my hip pain. I shouldn’t say that— he did evaluate my hip pain.
He also read my x-rays, did a physical exam and used the photos and the exam to measure the extent of my femoral anteversion.
Apparently, the head of my femurs aren’t positioned correctly in my hip sockets. It’s what causes me to look like this baby when I walk:
Apparently, as the screenshot shows, it’s not uncommon in children and even more common among children with cerebral palsy. If the bones don’t rotate into the correct position on their own by age 10, often surgery follows.
A rather invasive hip surgery where the femurs are cracked, repositioned and stabilized with rods.
I have an appointment with the neuromuscular physiatrist May 31– but until then here are my thoughts.
1. I still think I am leaning forward at work causing the issue with my toes blistering. If my femurs fit into my hip sockets at the wrong angle, this lean might be “natural.”
2. The doctor I saw yesterday says nothing I do is causing damage to my body, so my activities are limited only by what I can tolerate.
3. Relieving some of the tension in my hamstrings may lessen some of my symptoms.
4. There is no clear solution on how to move forward.
So, I called Nan to discuss it and get her opinion. I learned she never had a shamrock shake. I rectified that. See video.
So, I’m in the midst of what feels like an incredibly long, never ending journey. I’ve posted frequently about fitness, health and disability.
And I’m getting to the point where I’ve accepted that I will never be done.
It’s probably a long shot that my body will ever be athletic or even dependable, but at least I can commit myself to doing as much as I can to be as functional as I can.
I have hemiplegic cerebral palsy, which means it only effects my lower limbs. On good days, in the right circumstances, with the right concentration, you might not even notice. But those days feel fewer and far between as I age.
I started strength training in college— and if you’ve read some of my previous posts this might be repetition for you— as one of my gym electives. My liberal arts education included gym.
I returned to it on and off, mostly for stress management and then health after The Teenager was born. That’s when I met some very awesome vegan gym owners. (I was still in my vegetarian days. I keep trying to get more into a plant-based diet again.)
I worked out at home for several years while regaining strength after broken bones. And— as I’ve shared before— I got very lean and cut.
Now I have no desire to be than thin again and no discipline left to be that lean. But I am working toward regaining my strength and muscle. Those pictures are from when I was 40. Well, I’m going to be 47 in a few months and progress is slow. I’m still at an all-time high in my weight. I have days where my hips don’t want to work. And my spine hurts most of the time.
My eating habits also don’t match my goals— but my emotional state has to improve for me to fix that.
But I keep working on all these things.
As my marriage ended, I joined Planet Fitness and that kept some of my health demons at bay. The pandemic ended that, and that’s where my weight gain exploded, too.
And I also realized my desire and discipline had faded in direct proportion to my pain and physical difficulties. If I’m going to be crippled away, why bother?
But this summer, I saw a Facebook post by Apex Training here in my neighborhood. So I reached out and Greg got in touch almost immediately. I told him my story— and this meant a lot of vulnerability for me— and he immediately recommended Dan without missing a beat.
Now I was very very intimidated. I had walked by their gym 1,000 times but usually found small gyms and local trainers pushy and unwelcoming. Like a private club.
But I hit it off with Dan and found myself impressed with his knowledge and his creativity. He’d be a gifted physical therapist.
My strength has returned but my body still doesn’t always cooperate but Dan always knows how I’m feeling just my how I’m moving.
This gym is amazing. I see a lot of guys who come together to lift, a lot of women who want to lose weight, and married couples who work out together. And the environment is very family friendly— you’ll often see Greg’s dog Gotti or the babies, Dan and Greg both have toddler sons.
The Teenager has started lifting. She has a love of pushing around heavy weights so Dan has started teaching her barbell sports. Around the same time she started accompanying me to the gym, Andrew joined the team and he has a background in powerlifting.
The Teenager squatting with Dan
Well now it’s too late to make a long story short, but I’ve been feeling better and Dan has made some creative adjustments to my sessions to try and improve my range of motion.
Dan had to cancel this morning’s session so he suggested reaching out to Andrew, but Andrew was running on fumes. We weren’t able to schedule a workout but we had a great conversation about the prospect of getting The Teenager into her own sessions with Andrew and I can continue my work with Dan.
Andrew said she has potential and that he’s impressed with the lifts he’s seen. She now squats 155 I think and deadlifts 195. But here’s what I didn’t expect… “Your work ethic,” Andrew said to me, “is inspiring to watch.”
My world has been upside down for the last three to six months. So to hear that is just a reminder of how you never know who’s watching and how you may impact others.
And while I am still searching for the right doctors as I age, I know that strength training serves as a great boon to my future mobility and health. I see the orthopedic physiatrist this week and scheduled a visit with the neuromuscular physiatrist at the end of May.
I’m hoping these doctors can teach me how my body works so I can give this information to the team at Apex and maybe I could have a future in strength sports. Or maybe I can finally jog a 5K.
But more people need to understand—
Physical therapy is a blessing for specific injury. But as we age, most of us will gain a disability if we don’t already struggle with congenital issues. Just as I look for the doctor that can help me understand my whole body and its movement, the right personal trainer can help me strengthen my whole body.
I really wish I could be with the guys at Apex Training five days a week.
And I hope anyone with a disability who wants to improve their physical condition will consider committing to work with a personal trainer.
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.
If you stop by here often, you know that last Wednesday I spoke with some more people at work about my disability and that whole day I was given my preferred/easier for me fixes.
I achieved 96% for the day, folding what are called refixes, fixes that had problems that got rejected and needed to go back to be fixed. So the fix needs a fix.
When they return from the refix department, they are boxed in the box they were originally slated to ship in and they are on top of the cart instead of on the shelves.
I really struggle to reach shelves seven and eight so this is a huge help.
And since neither the physiatrist nor my neurologist have responded to my recent concerns about my mobility and my coordination, I have not asked for official work accommodations yet.
Yesterday was the first day of my work week— I did something like 89% in Freestyle, folding clothes and shipping packages for the first 8+ hours of my shift. At 3:30 p.m., I moved over to returns processing where I might have hit 75%.
Today was Monday, which means the warehouse was firing on all cylinders. I was in my home department, and I might have gotten 40 refixes today. So 3/4 of my work involved a lot of bending, crouching and twisting.
My back did okay, but my right quad and right foot burned most of the day and by 4 p.m., my hip hurt. It feels like it’s pointing directly behind me like a tail.
Despite this, I was in the neighborhood of 99%.
And at 4:25 p.m., my process lead asked me to go style card— calling me his “emergency style carder.” I would prefer the phrase “back-up.”
But it gave me a chance to move around and improve my hip functionality so I am grateful.
It made me feel like an athlete waiting on the bench, which then got the song “Centerfield” stuck in my head as I worked.
“Put me in coach, I’m ready to play…”
I would have made the reference to my process lead, but I think he’s too young to get the reference. But, the teenager tells me if he’s seen The Sandlot, he’ll know the song.
Angel Ackerman 