I woke up with not much voice, still not quite right and worrying that maybe I have a cold. I haven’t been sick since I had Covid— more than a year ago— but I drank lots of hot liquids, chugged some DayQuil and ventured out into the cold.
Why?
The teenager had a 9 a.m. greatly anticipated appointment for a hearing aid fitting. When they put her in the test hearing aids, her voice quieted immediately.
Apparently speech tones have been difficult for her to hear for quite some time and the pandemic made it more obvious that she was reading people’s lips.
The doctor was greatly personable and loved the teenager’s enthusiasm.
From there we went to the neurologist— the first time I have ever visited one. This visit was one of many doctor appointments in 2021 I booked as part of my fact finding mission regarding my body and my cerebral palsy.
(My temperature was 97.6, so whatever is making me feel “off” does not include a fever.)
And so I talk with the assistant, the resident and the doctor. I was very impressed with the doctor and even more impressed that she kept checking in with me— “I want to make sure I address any questions you have.”
But honestly I got scared because when she first walked in she said, “so you think you have cerebral palsy.”
As if I had googled it and just came to that conclusion with web m.d.
And I’ve heard other people say it… but never experienced it before today. When you have a visible disability that you often have to explain to people, when someone threatens to change that diagnosis it’s very unsettling. I never expected to feel so uneasy that someone might challenge the very thing that has defined much of who I am, even if I hate the fact that it intertwined with my personal identity so deeply.
But spoiler alert, after examining me and watching me walked she touched my knees gently and said, “I agree.”
Not only did she explain things I already knew about the condition (it’s static and will not change), but she pointed out that I often step on my left foot. I literally trip over my own foot. She also sat on a stool beside me— so the doctor was below me making eye contact upwards. I have never had a doctor do that before.
She referred me to the physiology department, and thinks they may recommend Botox to relax my leg muscles and prescribe braces for my feet to help them face the right direction.
She also scheduled a head CT, warning me that it will show brain damage, but that young brains compensate for damage via their elasticity. (Is that the word?) I’m excited about this because it gives us a baseline image of my brain so as I age we won’t confuse my cerebral palsy brain with, say, a stroke.
And she was impressed with me, as doctors often are.
Sunday we arrived at work to learn we couldn’t punch in because engineering was upgrading the time clock system. I managed to ship 374 items in 296 packages as part of the Freestyle department.
And my dad— who has been struggling with Covid— ended up back in the hospital.
But then Monday rolled around and I was back in my home department folding clothes.
I was ready to try and excel as the change in shifts has been hard. The ten hour day is amazingly smooth, but getting up at 5 a.m. is exhausting — even if I go to bed at 9 p.m.
And then we changed software and the computers couldn’t keep up with the new system so everyone was working at 80 percent. Okay, I can’t prove everyone, but there’s a day shift woman who told me she always hits her numbers and yesterday she only did 108 instead of 130.
On top of this I had several fixes that I struggled to put in an extra large box and half way through the day the stats went down.
I am struggling to stay motivated and moving without my average time per fix being tracked, let alone no stats at all.
And then some guy drilled each of our table and attached new brooms and butlers. We used to share one or two brooms per valley, now we have about 20.
Many many brooms.
And around 2:30 p.m., a day shift peer was talking to someone who might have been a processing lead and she started hysterically crying for a good 20 minutes.
So I was very glad when yesterday was over. Not only was my back hurting, but my right leg is acting up again and I have intense pains in one of my right toes.
Then today started. My computer doesn’t have a keyboard or a mouse. Just a keypad. And the computer can’t “see” it. Lost ten minutes looking for a mouse until a lead stole one on my behalf.
One of my favorite second shift QC support people— we’ll call him Flying J in honor of the way he buzzes through the valleys with carts under his arms like wings of an airplane— brought me refixes! You know, the fixes that needed to be fixed and come on top of the cart instead of inside.
AND he told day shift that I liked them.
And one of the day shift support people came to see me and said she would bring me as many as she could. Then she paused.
“I don’t know how to say this without offending you,” she said.
“Honey, you can’t offend me.”
“I see the way you work and I see the way you walk—”
I interrupted her. “I have cerebral palsy,” I said. “And right now, my spine is bent the wrong way. I struggle to get the fixes out of slots 7 & 8.”
I was really moved. I am always touched when people want to help.
And today was our December employee luncheon.
Meanwhile, at home, the teenager did a ritual (at my request) for my father’s recovery.
Me and my dad
After work, we took the dog for ice cream at The Spot.
This new work week is certainly moving quickly although each day I come home more exhausted. I’m hurting more once I get home, but I’m fine for the first 9+ hours of my shift. If you don’t know what I’m talking about read these:
The teenager kept my car as the last two of our fosters who needed to be spayed went to Canyon River Run today. That would be Mama Danu and her tabby kitten Baile from the Celtic Pride.
Georgie (lower left) and Baile (silver tabby)
She hoped to bake cookies for the platters Feline Urban Rescue and Rehab plans to distribute to the many vets who assist the organization. Her eighth grade boyfriend came over to lend a helping hand so she also taught him to make bread.
Meanwhile I just kept dreaming of an iced cold Coke Zero. And an interesting thing happened — I got to work and there was a 4-pack of 20-ounce Coke Zero bottles with a post-it note declaring them free.
I brought them home. My guess is someone didn’t realize Coke Zero had been relabeled in the same red as classic Coke.
Which my metrics tanked by the end of the day which had me chugging this at 3 p.m. break.
My 4 p.m., I was trembling and about to cry. Do. Not. Repeat.
I treated the teenager to dinner at Tic Toc so she could get her last pay check. We both ate too much.
I did my physical therapy exercises and took a hot shower. By the end of the shower my right leg was very uncomfortable so I took a low dose muscle relaxer and covered my leg, knee and back with CBD Medic’s Arthritis Cream.
One more day.
So now, as promised, let me offer some thoughts on podcasts. The teenager and I compared notes on our Spotify end-of-year wrap up and she thought she was impressive with 17,000 minutes since we started using the service in mid-year. I have 88,000+.
MY FAVORITE PODCASTS I LISTENED TO SO FAR THIS WEEK:
This one surprises me. The Ellen Fisher Podcast. She’s a very interesting person with her journey to raise her own food in Hawaii with her brood of plant-based kids and interest in all things calm and positive. I don’t really don’t know how I feel about her podcast — but I recently listened to her episode on Mind Change. It was an interesting discussion of neuroscience facts blended with alternative healing techniques to deal with personal trauma to heal the body of disease and mental illness. The guests on the show discuss their experience that illness, whether physical or mental, is the body manifesting trauma that the person has refused to acknowledge and heal.
The Daily. I often force myself to listen to the Daily even when the topics don’t interest me. This week I found myself pleasantly surprised by their coverage of Stephen Sondheim’s death.
Snacks Daily. Snacks Daily is a brief podcast from Robin Hood, yes the investment folks. It’s an economic summary of course, but it also provides humor and the business side of the news.
I finished Sh**hole Countries by Radiotopia. The American host on that show grapples with the possibility that her Ghanaian parents want her to move to Ghana. Enjoyable but also not what I expected. The host uses much of her platform to talk about her queerness and human rights.
The Shit No One Tells You About Writing. Very useful and broad tips about writing, critiquing and publishing.
Africa Daily just did a good episode on fistula. I found that a surprising topic. I’m impressed. (Though they did not mention the prevalence of female genital cutting and its impact on the rate of fistula.)
Other notables: Power Hugh Hefner, American Scandal The Lewinsky Affair, Operator, Against the Odds Rock Climbers Abducted.
Tonight was the last official night of “Midnight Society” at the Stitch Fix Bizzy Hizzy and they closed the warehouse at 7:30 p.m.
I say last “official” night because I just heard from my supervisor (at least until the new shift starts Sunday) and my favorite security guard/philosopher that there are a handful of people who can’t transition until after Christmas— and Stitch Fix will let them continue working their traditional hours until then.
That was a really nice move on the business’s part. Too nice in my opinion. I have squeezed a couple months of doctors appointments, tests and physical therapy into two weeks. So part of me is a little jealous.
We start our new work arrangement Sunday.
In other news, my blind friend Nancy and I both had physical therapy today. And Aîné and Brigid of the Celtic Pride got spayed so they are ready for adoption!
But back to physical therapy. Nan and I went together. She’s having issues with her shoulder and numbness in her finger.
I have pain in my spine and fall a lot.
I had to ride a stationary bike for eight minutes. She warmed up on a hand contraption.
I did my Cobra poses, and my physical therapist did that thing where he presses on my spine as if pushing it back into place.
I did deadlifts with a 20 lb kettlebell. I had to lay on my stomach and bend my leg at the knee and lift it off the table. That was harder than it sounds.
I stood on a soft cushion square and moved my leg out using my hip while keeping my knee soft. I also did that kicking back.
I did bridges.
I took a giant ball, held it to the wall with my back, and squared as low as I could.
Meanwhile some teenager stood on a balance ball on one leg, tossed a ball onto a trampoline and caught it ALL while standing on one leg.
I can stand on one leg for nine seconds.
On the floor.
This kid was standing on a ball meant to destabilize you.
And throwing a ball.
I am in total envy.
Meanwhile Nan was teaching the staff to read Braille and how to use a white cane.
And the staff was heartily confused at the fact that friends would come to physical therapy together.
After physical therapy, I turned to Nan. “You what to come to my house for grilled cheese?”
Her answer was a hearty yes. I made hers with Colby Jack, Cheddar and Lebanon Bologna and mine with habanero cheddar and Vevan vegan mozza-melts.
The mozza-melts taste and melt like real cheese, but sadly they have no protein. At all. So while they are a cruelty free version of cheese, they have no nutritional value.
So, as a former journalist, I could easily write a summary of every day like a nice newspaper column and post it. I could probably even manage to maintain my sense of humor, style, and tendency to find joy in the ridiculously ordinary.
But this week, every word I wrote felt repetitious. Or perhaps every word I wanted to write felt like it had been done before.
And maybe it has. Because so much of life goes that way. The same struggles, the same events, and often the same answers. And we repeat the cycle over and over probably for two reasons.
It’s hard to break a habit.
And growth, the kind of change that comes from embracing a lesson, presents its own difficulties.
In today’s blog, I’m going to do a generic update, and I’m honestly not sure if any of this is repeating myself. But do you know what? Repeating myself is okay. This is a small droplet in the vast waters of the internet and there’s always the possibility someone hasn’t heard it before and may need to hear it today.
Topics to come in this entry: Update on my cerebral palsy and quest to end my chronic back pain, weight training with the teenager with Dan at Apex, emotional eating, review of Purple Carrot’s vegan Thanksgiving dinner box, and the requisite animal photos.
This week’s personal training at Apex:
I know I frequently mention how amazing the trainers at Apex are. One of their strengths (weight training pun there) is to recognize the needs of each client and to match the client with the right trainer. I’m obviously not in the whiny white women who primarily want to lose weight category, and that’s how I ended up with Dan. As Dan has the unofficial knowledge of a physical therapist (because he’s had enough accidents to know the patient side of it) and he has the curiosity to read, research and think. With my cerebral palsy this is important. Dan has the observational skill to read my knees and lower body to know if it’s a bodyweight/calisthenics kind of day or a weight training day. And this is important so you can build range of motion and flexibility and not get hurt.
Anyway, Dan has been kind enough to let the teenager join my training sessions. I love throwing weights around but lack the personal discipline to do it on my own this time around. And the teenager has a natural muscle tone and build that makes her perfect for powerlifting. But she hates dumbbells and she hates routine and discipline. So as long as we tell her to go throw around that heavy object she’s fine.
And today she deadlifted 135 lbs as if it weren’t even a challenge. I honestly think she could have done 150 lbs easily.
I think I kept up with her through 115. I only did three at 115 because I was really afraid I would blow out my knees. A deadlift when executed correctly utilizes the lower body, and the weight actually (once I get warmed up) helps me lower my butt in the squatting portion, but since my knees tend to point sharply inward, I have to adjust my stance to compensate. While the main gist of the lift is to pull the weight along the shin and lift into the hips and use the legs to support the weight as the hips straighten and thrust outward with the tightening of the glutes, in my case, I have to force my knees to stay in the proper position facing my toes and not each other.
As I start to lift heavier, the dull ache in my spine is a reminder to lift the weight with my legs and not my back. I place my feet in position, point my toes slightly out and stretch my knees in line with them. And, for lack of a better description, I lock them in place and while lifting the barbell I have to concentrate on keeping my knees from turning inward. Because if they would suddenly snap where they want to be, I could not only blow out a knee but also potentially lose balance.
So I did three.
In related news, physical therapy update:
Yesterday I finally had my physical therapy appointment with the proper physical therapist now that neurology has confirmed that my balance and brain are fine. Much to my pleasant surprise, I had the same physical therapist that treated my initial bouts with back pain three years ago. He was at a different physical therapy office, then, and came recommended by my doctor as the guy who really knew back issues. What makes this a funny but pleasant coincidence is the fact that I chose this physical therapy branch because my blind friend Nancy is going there and I thought we could combine appointments and I could help her with rides.
What did my physical therapist Jeff say? Basically, that I need to do yoga. He has me doing “press-ups” 5 times a day for 10 reps. At least to start this week. Last time I had physical therapy with him, he started me super light and then made the exercises ten times harder when I returned in a week. “Press-ups” are cobra pose in yoga. I used to do yoga daily. It always seems like physical therapists are always telling me to do more of what I already or what I used to do.
Random photo of Nala the Goffin with foster cat Touch of Grey
Confession time, emotional eating:
My weight is 160lbs. This upsets me greatly. When I had gestational diabetes at six months pregnant I was 169. I was 142 on the day I brought the teenager home from the hospital and 142 for most of her toddler years. When I finally decided I needed to get my weight under control and regain strength after breaking my right hand while working at Target, I lost 30 lbs in 6 weeks. I lost too much weight too quickly and then gained weight while strength training and got ripped. Over the years, I found a set point at 135, where I could maintain muscle but be more relaxed about eating.
But then, my marriage ended. My boss at the job that allowed me to separate from my husband and support myself turned out to be a sociopath. I mean that in the kindest way possible. She was very sweet, and driven, and perfection-oriented but she had no empathy, no flexibility and no patience for any way other than hers. No views allowed other than her beliefs. This led to high blood pressure and I honestly had no energy left to take care of myself. When she fired me, it took six months for unemployment benefits to determine she was in the wrong. The pandemic was underway by then (Summer 2019). I lived on my savings, a total of $4,500, and foodstamps that kicked in three months after I lost my job.
And this was also when I ended up in the hospital for an infected cat bite and took in a second teenager who lived with us for nine months without her parents contributing to her care.
I mention this only because it is why I lost my discipline. Why I stopped caring for myself like I used to. It was easy and fun to go to McDonalds for a $1 Diet Coke and a $1 McChicken. Cheap dinner.
I thought I would turn this around when I started “picking” at the Stitch Fix Bizzy Hizzy. I walked 17,000 steps a night in the warehouse, grabbing clothes. But then I caught Covid-19. And my stamina never bounced back. So now I fold clothes. Which killed my back.
Even though I had a delightful Thanksgiving, with vegan recipes I prepared from Purple Carrot and leftover pie and wine from my in-law’s meal, I “ruined” it by drinking a big glass of wine yesterday with about 1200 calories of Trolli gummy worms. And then I tell myself, “Well, at least they had protein, iron and calcium.”
And finally, the Purple Carrot Box:
I’ve only made about half the box. The rest is still in the fridge.
I made the Purple Carrot “sausage” stuffing, vegan thyme gravy and cranberry sauce. The thyme gravy was better than I expected as I am not a gravy person. I added local granny smith apples and herbs de provence to the stuffing. The stuffing began life as caibatta rolls, root vegetables, and Fieldstone vegetarian sausage. Let me say again, if you haven’t heard it before, that the Fieldstone vegetarian sausages are amazing. The fact that they come wrapped tight in plastic “skin” casings annoys me, but they are very tasty.
I hope this weekend to partake in some fun activities and lighthearted blog posts, but I also need to do some administrative work for my publishing company, Parisian Phoenix Publishing.
My second novel in the Fashion and Fiends series, Courting Apparitions, releases officially November 29 (my co-founder’s birthday) and could possibly be available Black Friday. Like, damn, when did that happen?
My friend and fellow writer William Prystauk of the Kink Noir series and horror website Crash Palace Productions left me a truly wonderful review on Amazon and Google.
On everyday life and health front, I went to the chiropractor yesterday and like my doctor she approved of my new technique of changing work tables to try and even out my sides. I stopped at the pharmacy and picked up my prescription for muscle relaxer. I also made my last Purple Carrot meal in the fridge: mango glazed roasted vegetables with tahini butter.
Worked went mediocre/well. The night seemed long and boring and I felt like I was getting used to my body again after the chiropractor. I QCed at about 83%.
I came home and several cats were waiting for me— including Minerva, a sweet foster who started in our second foster litter of kittens, The Roman Pride.
I took a muscle relaxer to see how it impacted my pain and my morning stiffness. It didn’t make me loopy and I think it helped with my tossing and turning.
I only got six and a half hours of sleep last night, but still managed to meet up with the teenager my trainer Dan at Apex Training to lift some weights. I felt so much more limber after. The teenager easily did 105 on the barbell deadlift and 95 on the squat. I could lift the 105 but not execute the lift. My squat form is still adjusted for my limited range of motion in my lower body so I maxed out at 85 while the teen hardly had to put any effort into it.
We came home and shared some Little Caesars pizza as I was craving their “pizza and sticks” pie. We even shared with the dog.
This post will be a mishmash of the last 48 hours and will discuss some of the frustration of dealing with my cerebral palsy, life as Midnight Society comesto a close at the Stitch Fix Bizzy Hizzy, a brief mention of the new Wawa dinners and a thank you to the amazing teenager for her thoughtfulness in hiring a cleaner to help get the house under control.
The supply chain issues still create work shortages at the Bizzy Hizzy warehouse so as Midnight Society prepares for it’s change to day shift in December, some of us are only working about 20-25 hours a week.
I’m using the time to edit manuscripts and make more plans for Parisian Phoenix Publishing and deal with my mobility and pain issues.
The last few nights at work have been good (and last night was my one year anniversary)— I performed at 98% last night in QC folding those Stitch Fix parcels and tonight I think I surpassed 100%. But bending is still troublesome and what I believe are my quads burn the entire time I am standing.
These photos try to capture my one year pin.
So today was an emotional day. My sweet, amazing teenager hired a cleaner to deep clean the house. The cleaner did the upstairs yesterday and the downstairs today.
The house looks incredible.
And it was fun to interact with someone who wanted to help, loved our crazy animals and commented about how awesome my kid is.
I noticed early today that my X-rays had arrived in my St. Luke’s Hospital portal. I read them and they said my hips were fine, and the only findings on them (other than my new IUD and tampon) mentioned items in my spine.
But when the doctor’s office called at 2 p.m., he just wanted to ship me off to physical therapy. And I’m not sure that’s the whole answer. I work out. I have had physical therapy for my lumbar region already.
Two important questions physical therapy can’t answer:
1. How does this impact my ability to keep doing my job?
When I mentioned this to the person on the phone from my doctor’s office, she asked me what I wanted, mentioning that they could sign me out of work. I said no, I am looking for a more permanent answer than that.
2. How does my general crookedness factor in? The doctor’s office made this sound like no big deal, but I hurt. More often than not. So does my imperfect gait add more stress to this problem?
I’m going to talk to my trainer tomorrow, and my chiropractor Friday. I think there are more questions that need to be asked and I’m not sure what they are.
And in final ridiculous news… I tried a Wawa burger.
As I write this, I am mourning the loss of having finished The Night Shift on Netflix. I am imbibing some generic strawberry lemonade energy drinks strongly laced with too much gin. I am craving potato chips, cuddling my cat Fog, and nursing my injuries from the day.
But perhaps I need to back up…
The photos above summarize my Halloween.
At 11 a.m., we had an appointment for Danu and her babies from the Celtic Pride— Aîné, Baile and Brigid and our newest foster, Georgie, to meet our foster cat godmother for shots, flea treatment, dewormer and microchip and OH MY GOODNESS was Georgie dramatic.
Then the teenager had a commitment to walk in the local Halloween parade and she asked me yesterday to walk with her as she paraded in costume. I will do anything my daughter asks.
And half way through the parade, I fell flat on my face to the collective gasp of the crowd. I rise, keep walking, hip and knee in pain. But I keep going.
#f*ckcerebralpalsy.
I finished the parade. Outside the teenager’s high school. Her father and herself know that the fact that I finished the parade did not mean I was okay as I have been known to do things like walk a Chinese buffet with a broken ankle.
My knee is swollen. I tripped over a mirror late in the day that struck me in the tender parts.
My back hurts.
I am craving potato chips as my body adjusts to the Mirena.
My princess, the male cat I jokingly named Fog, is curled up next to me. He is my baby.
The teenager’s dad came over and they carved pumpkins and I typed some of a manuscript for the identity anthology. We handed out candy and even the dog got to enjoy trick-or-treat.
I ordered Wawa for dinner— the teenager’s favorite ranch Mac and cheese, chicken Caesar salad and pierogie quesadilla and Blizzards from Dairy Queen for dessert.
Tomorrow the teenager is consulting a cleaning woman to take some of the stress off me.
My husband and I celebrated our 22nd wedding anniversary today and, even though we have been separated for two-and-a-half years, we inadvertently spent it together.
My mother celebrated her 67th birthday today, and I postponed her birthday until next week because one of her brothers died on Thursday. The second brother to die of prostate cancer in about a month. And her ex-brother-in-law died last week, too.
The day started strong with the teenager and I killing our workout at Apex Training with Dan. I also ordered an Apex Training hoodie. The teenager and I benched 70lbs on the barbell, and the teen also did some hearty squats.
We signed five cats up for the “come adopt us” event with Feline Urban Rescue and Rehab. One of them was sweet Khloe. Khloe hid under the blanket with one eye poking out the whole time, until she heard my voice, then she came out. Not bad for a first day out.
Photo of me waking up with a Khloe scarf
So the husband came over to retrieve his car from the teen and do his laundry and assign his ISBN to his poetry manuscript.
He then rewarded us with pizza.
I did some more work for Parisian Phoenix and some more cleaning, and then the teenager asked me to come down to the diner for coffee and my favorite pie.
Photo: waiting for my daughter at Tic Toc Family Restaurant
This morning my legs felt more normal than they have in weeks and everything seemed to be working in coordination. But as the day wore on everything started stiffening up. It was the first time in about a month my right quad wasn’t burning all day.
This is another in a series of posts about trying to learn about my cerebral palsy and improve life in my body in general.
As sometimes happen, I woke in pain. I took two Tylenol PM last night so the pain didn’t keep me awake though my cat kept trying to intimidate one of my fosters so that made the six hours of sleep I got rather restless.
I woke to an alarm at shortly after 8 a.m. as I had to be at a doctor’s appointment at 10:05ish and the office is 20 minutes away.
Today was the rescheduled appointment to get my Mirena IUD that will hopefully reduce my heavy menstrual bleeding and my back pain from menstrual cramps. I had another new-to-me doctor today, and this one had an amazing sense of humor.
She was also the first doctor to ask me, upon hearing I had cerebral palsy, if there was anything she needed to do or be aware of to help me. In my case, the answer is no. But if I had worse issues with my flexibility and lower limbs, this would be a good question.
This is my third IUD, although my first Mirena. So nothing unexpected happened during insertion.
There was a pinch here and there and the doctor told me to take ibuprofen for the initial cramping. And to be prepared for a period that might be weird for the next few months. Every woman reacts differently but I may see my periods lighten or even skip cycles.
I did experience some light cramping and spotting but nothing to require OTC painkillers.
But, once I got to work, my right leg seemed to be impossible to control with my quad and knee burning. My ankles also started to burn. My lower back just throbbed, regardless of whether I was twisting or standing still.
By the end of the night I struggled to reach forward or to lift the pile of clothes.
I only QCed 92 fixes. That’s almost 71% of goal. Now granted tonight we were in the men’s Hizzy for the first time ever. It took me 4.5 minutes to do fixes that in women’s takes less than 3.
And they have such nicely organized work stations with drawers.
While listening to my first podcast of the night— 60 songs that explain the 90s— i discovered that Weird Al donated the profits from “Achy Breaky Song” to the cerebral palsy foundation.
My British colleague asked why I’m not on disability. That made me wonder how bad I must look if she says that to me.
In good news, let me regale you as I drink my last pins colada lemonade gin cocktail, the teenager is very excited about the new soap dispenser she bought.
I did a thing and did a soft launch on a Parisian Phoenix podcast on Spotify. I thought my blind friend, Nancy, would like it.
Angel Ackerman 