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 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.
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.
A little less than an hour ago I left home to walk to the hospital for my head CT.
It was raining, with flurries mixed in, and I didn’t think to bring a hat, a hood or an umbrella. I don’t mind getting damp, and the moisture helps tame my curls.
The walk to the hospital was uneventful. I was confused where to find the radiology department so I looked up the address: 250 S. 21st Street.
Now, I always get 21st Street and 22nd Street mixed up in my head. So to be sure imaging wasn’t in a separate building, I walked down to 21st Street.
That was mistake number one.
Imaging and radiology is in the main hospital. The main hospital was built over 21st Street, so to get to the entrance I had to backtrack, and go up to hills will black ice, to 19th Street.
I walked in, waited in line, and was politely told I needed to go outside, to the left and to the left again.
In other words, imaging was next to the Emergency Room which was where I started backtracking.
Bit extra steps are good. Let’s stay positive.
I leave, go down the concrete stairs between the hospital and the parking garage, trying to confirm where I need to go. I suspected radiology was next to the ER but I had just been told “left and left again” and I get my left and right mixed up, especially when I’m nervous.
And now I’m nervous and hurrying. In winter weather.
I forgot the stairs by the hospital are built like speed bumps… one step… walk more than a side walk square… a staircase of about five steps… more single steps. All painters with yellow stripes.
I missed one. I did a lovely corkscrew spin and bounced along the sidewalk.
I got up, kept walking, fighting tears and trying not to hyperventilate.
Because physically I am not in my best shape today. (More detail here.)
I walk into radiology and I tell the admissions clerk, “I have a CT at 7:30 and I just fell down the stairs coming from the main registration desk, I’m fine but I’m a little shaken.”
She, of course, wanted to know if I needed to be examined. I said no.
Then she assumed it was icy. I said, “no, I have cerebral palsy and I just missed the step and once I go down I can’t stop it.”
Her next thought was, “why didn’t they have someone bring you through the hospital. Why did they make you go outside?”
I replied, “I just did what they told me.”
The next fun part of the journey was once again I was told that Medicaid denied my procedure. I told them I qualified for Medicaid for one month in 2020 and they have not paid for anything since that month.
“But you qualify,” they insisted. “Or it wouldn’t be there.”
Just let me have my CT scan, especially now that I’ve hurt myself.
They take me back, and I thought maybe I should go to the restroom and wash my scraped hands but the tech assures me it will be five minutes. So I figure it can wait.
The scan was very cool. I have never had a CT scan or an MRI. They stuck me in the tube and I noticed the sleek black ring inside the tube that had a bright ball in it, like a star. I was told to be still so I closed my eyes.
The machine roared like my clothing dryer, the table shifted, and I was done.
I then once again thought about the restroom but it was 7:30 and my teenager needed to be at work at 8, and I thought maybe I could catch her.
But the sidewalks were slick and now the snow was coming down. It was coating everything. So I didn’t get home in time to see her.
But, between the cold, my nerves, and the fall, I suddenly realized I needed to urinate. And as the greatest insult to my pride today, I started to pee myself five feet from the toilet.
When I removed my pants, and realized the “accident” wasn’t as bad as it felt, I saw my knee was now bleeding. I have a sore spot on my left thigh up by the hip, two scraped knees, two scraped off palms, a couple scraped knuckles and a sore spot on my left forearm.
My trainer and I agreed that maybe the gym isn’t a good idea today.
And I cracked the screen protector on my phone.
I really, really hope that when the neurologist calls to talk about my CT scan that she can needle the physiatrist about seeing me, because I need help.
I’m scared. And I need to understand what this body can do and what it can’t.
In less than 45 minutes— it is now almost 6:20 a.m. on a mildly snowy Thursday morning— I will be walking out my front door to get the CT scan of my head I originally had scheduled for December 30.
I am drinking my peppermint white chocolate Supercoffee, which arrived during the snow event Monday. Peppermint is my favorite flavor in coffee. Cinnamon used to rank, but there is something about the sassy, refreshing notes of warm peppermint and bitter coffee that excites me.
Last night, my Parisian Phoenix collaborator blind poet, Nancy Scott, joined the teenager and I for a dinner of Asian style cabbage and sautéed scallops over soy sauce ramen.
I have mild anxiety about the CT scan, primarily because I am unfamiliar with radiology at the nearby hospital, but also because of the anticipated cost. (You can read more about that here.)
My toe has been burning for weeks now. So much so I mentioned it to my chiropractor last week, that it burns maybe 15 minutes every 90 minutes or so while I am at work in the Bizzy Hizzy.
I thought maybe my posture is off with my hip persistently giving me trouble, but I noticed last night it’s extremely red and I think a little swollen.
Now I’m debating whether I need to call my podiatrist on top of everyone else.
The interesting news is that in the Bizzy Hizzy this week I probably performed about 65% in women’s returns processing during my overtime shift Saturday. My supervisor informed me I did 83% in Freestyle QC/ship on Sunday. Monday was a paid holiday. I managed 90% in my home department Tuesday and Wednesday— which is folding and wrapping 147 fixes.
While my pain levels are probably around 3 or 4, depending on my movements, my hip is definitely bothering me and my toe hurts all the time now. And of course, the back pain has been minor, but there, and I’ve struggled with touching my toes this week.
And I gained back the weight I’d lost.
I’m anxious to do some items for Parisian Phoenix today and maybe even write some of my fourth novel before a friend comes over for cocktails.
And please consider buying a book or two or three from Parisian Phoenix. I’m saving up for a new batch of ISBNs.
It’s Wednesday night— which is my Friday! The Bizzy Hizzy has been a tizzy of Covid cases during this mandatory overtime week.
I’m doing my eight hours of overtime on Saturday.
Tomorrow I’m returning to the gym—the pandemic has also altered my training schedule.
And tomorrow, Georgie gets adopted! Yes, Georgie, our lovable former community cat from downtown Allentown, will be going home to a family where she will be the only pet.
I’m told Louise has an approved adoption application— but this is her third so I am not as optimistic as I should be. The person who applied for her wants two cats so FURR has suggested Khloe also be considered.
If these three cats get adopted— after Danu, Brigid and Aîné all getting adopted since December— I may weep tears of joy.
This week my body experienced all sorts of aches and pains, but I still managed to fold what I felt was a respectable amount of clothes for Stitch Fix. And today was our monthly employee luncheon— chicken Caesar wraps, tomato soup and carrot cake.
And on our final break of the day, everyone from my old shift got sweatshirts.
It’s kinda silly, but at the same token, it commemorates a special era of my life and celebrates the camaraderie we had on second shift. And believe it or not, even though we are scattered among the day shift, we still function as a team.
After work, the teenager invited me to Tic Toc family restaurant where we enjoyed grilled cheese sandwiches.
Ingram finally shipped Darrell Parry’s poetry book (Twists: Gathered Ephemera). And several other Parisian Phoenix titles are coming together. Perhaps as many as three titles releasing before the end of February.
Speaking of Parisian Phoenix, I emailed my class correspondent at Lafayette College and he ordered my first two novels.
And finally, side note… Actor Tim Daly was on the most recent episode of the podcast Hypocondriactor. I love Tim Daly. And I found myself comparing him to Anthony Stewart Head, you know… Giles on Buffy the Vampire Slayer.
I was specifically comparing Daly’s character on Madame Secretary to Head’s role as the school librarian/watcher on Buffy. Both were nerdy academics with interests in obscure topics.
So, I just received a phone call at work from my neurologist’s office. They want me to come in at 8 a.m. Wednesday, because “my” insurance company denied my CT scan.
I use the quotation marks because this letter comes from the insurance company that provided my Medicaid. I received Medicaid four months into my unemployment in November 2020, and I accepted my position at Stitch Fix one week later.
Stitch Fix provides medical insurance as of day one of employment.
To the best of my knowledge, I used Medicaid for one visit to my primary care physician that happened to be scheduled during that week.
I filled out the required paperwork to alert the county assistance office that I had a job, and insurance. I received some paperwork that implied my Medicaid would expire at the end of the year.
But as of January 1, 2021, it still seemed to be hanging around as a secondary insurance policy. Even though I never saw them pay for anything, and my primary insurance was a high deductible plan.
In Spring of 2021, I received a notice that I need to reapply for my medical assistance or it would be canceled as of 8/31/2021. I threw the paperwork away— because I don’t need Medicaid.
But the hospital and the network of doctors associated with it still insisted I had it.
So I thought maybe it would disappear December 31, 2021.
And December 28, 2021 they write the letter denying my CT scan that I photographed and posted above. I receive it around January 5, 2022.
To refresh anyone’s memory or for new readers— I have cerebral palsy but I didn’t really receive medical treatments or interventions as a child, which leaves me now trying to understand my body as it ages. I am approaching my 47th birthday.
My neurologist appointment was December 23 — you can read about that here (and more here) as it was my first ever. I now have an official diagnosis on file with my doctors.
The neurologist’s office scheduled me for a CT scan of my brain on Dec. 30. I was really excited for several reasons: I have never had any CT scan; I am very curious to see what brain damage will be revealed; and my deductible was paid for 2021.
But the office canceled it two hours before the procedure because the insurance company neither approved nor denied the claim.
I find out today that Cigna has approvedthe scan but Medicaiddid not and theneurologist’s office didn’t want me getting a surprise bill.
They canceled a procedure that would have cost me a 10% copay, and now I will pay for it out-of-pocket as my deductible is $1,750. And my HSA will be empty as the teenager is getting hearing aids Friday.
In other physical related items:
Yesterday I experienced a lot of steady pain at work. By the end of the day, I couldn’t even reduce my symptoms and sleep was uncomfortable. I blame the fact that they changed our break schedule and we had our last break at 1:50 — leaving us to work three hours without a break, the last three hours of our ten hour shift.
I finished yesterday at about 80% of the daily metric.
Today, I had a high point at 3 pm of about 95% — and finished the day at 90%.
My back today felt better, pain at let’s say 4 instead of 8. But my toes on my right foot burn about 10 minutes out of every 90.
Interesting side note, I think the intense back pain involves some nerve activity as when my pain increases I can’t feel my need to urinate. Not at all. So that’s fun.
And the Mirena is doing it’s job. But for the first two months, I spotted most of the time. I think I had two days each month where I wasn’t spotting or bleeding. I think that has finally ended. My body seems to act like my body.
But today, for some reason, my right breast aches. Kind of like milk let down.
I went to the chiropractor yesterday. Nicole at Back in Line Chiropractic and Wellness Center warned me that she “beat me up” more than usual.
That’s amusing to me as I was in an incredible amount of discomfort and she eliminated 90% of it.
I explained everything going on— my stress, my lack of good sleep, the possibility I had omicron, not eating right or taking my vitamins, not stretching or working out, and working overtime.
But as soon as she touched the back of my right hip, the tenderness immediately told me there was an issue I hadn’t thought of: my hip.
I need to remember that when I struggle to use my legs I might have an issue with my hip.
This post explores the last time I had this same issue: click here.
And if you look at that entry, you will see my mental health had declined in similar proportion to what I experienced earlier this week.
Pain and shifts in mobility really do have profound effects on our mental health.
So maybe next time instead of focusing on all the things that are going wrong and contributing to my lack of function and mental health, I need to be quicker to ask for medical intervention because — as I already know— I can’t trust my pain.
My pain recently didn’t feel that bad. But all the signs, including 65% work performance indicated otherwise.
I really need that physiatrist appointment to get scheduled.
In cheerier news, I recap some of this in a YouTube video I did yesterday while trying the “brown sugar cookie” latte and new egg bites at Dunkin.
If you want the PowerPoint version of my impressions:
The Brown Sugar Cookie flavor is boring. To me, it tasted a bit caramelized and like “toasted white chocolate” syrups. I miss peppermint for Christmas and pistachio for spring. These flavors now only come in peppermint mocha or pistachio mocha. I don’t like mocha in my coffee. Unless my friend and colleague Mary Barnes, now deceased, was the barista making a salted caramel mocha about eight years ago before everything came in salted caramel mocha. Starbucks always introduced it for the holiday season. But back to Dunkin and Brown Sugar Cookie, the teenager compares it to gingerbread. I didn’t get the spice of ginger.
The bacon cheddar egg bites… these were expensive but at 17 grams of protein and 280 calories they can substitute for a meal. But $4.99 for two miniature donut shaped eggs? Cute, definitely. Firm and crisp on the outside. Soft on the inside. Smoky, cheesy flavor. Again, boring. Strange mouth feel. But a very practical and utilitarian option.
Angel Ackerman 