The end of a short week

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.

Neurology Update

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 approved the scan but Medicaid did not and the neurologist’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.
One of my orders today was 8 pounds of jeans

Another whirlwind and even less answers

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 comes to 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.

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.

It was cheaper and heartier than I expected.

Celebrating the small victories

Yesterday was a day of mixed signals.

The pain in my hips kept waking me the night before, despite a cocktail and a Tylenol PM. I woke grumpy, stiff and achy.

I didn’t keep that from affecting my workout with Dan at Apex Training.

Because here’s the thing about pain— sometimes it’s a warning that you need to stop but sometimes it’s recognition that your body is changing.

I did 75 lbs on the barbell incline press. And that reminded me that my body is not all bad.

But at the same time whatever is impacting my spine, hips & leg is making basic mobility difficult and my job folding clothes painful.

I slathered myself with my CBD Medic Arthritis ointment and somehow folded more than the requested 130 fixes QCed. I did 133.

I’m probably in half the pain I was last night.

And in seven hours I need to get out of bed and go to the gynecologist for my Mirena IUD.

Fitness update: Where did that leg go?

Last week, I moved my follow up bloodwork from Friday October 15 to yesterday in part because I am planning a trip to DC over the weekend.

The morning yesterday started in a discombobulated fashion as my mornings generally do. I was so mixed up by the time my appointment rolled around that I drove right by the office.

The events of the morning had my anxiety on high, and revisiting my past issues with anxiety has not been fun. I even find myself fighting some of familiar behaviors, like stressing about how much money I have in savings and going over budget on food.

At the same time, I had a lunch appointment with my mother who recently lost a brother to cancer and anticipates losing another to the same cancer.

And I’m feeling my body thinking — my right leg isn’t working. I woke yesterday in no pain whatsoever yet something felt very wrong with my right leg, like maybe it was too close to the left one or pointing the wrong way. Very disorienting feeling.

I asked the teenager to take a look and she confirmed that it indeed look “very wrong” so we called Back in Line so my chiropractor Nicole Jensen could take a look.

This meant the whole day involved running from place to place which led to more stress, which increases the tension and the cerebral palsy stiffness in my muscles.

Nicole adjusted me again and aggressively stretched my hips. She also commended me for trying to know my body.

And at work I felt it. Keenly, painfully. Started in my hip, then my spine, then the left side of my lower back, and then the right. Everything hurt. I finished the night at 92% because of the pain.

The pain bothered me all night, and I woke up with it, and believe it or not struggling to carry the 80 lbs of cat litter I needed upstairs may have helped— by relieving tension.

Thank goodness for the gym, as my trainer Dan at Apex Training is very cognizant of how I am moving and has catered my workouts to my health levels.

I’m struggling emotionally right now, and I am physically in pain across my lower body. I can’t afford to stay home from work and I fear tonight will be worse than last night.

This morning, my bloodwork returned. My TSH is normal. My iron is creeping up way slower than I had hoped. My vitamin D was increasing but it hasn’t budged in four months.

And I also got an email with the results of the Artful Dash— officially Gayle beat me. Which she did not. I was a clear two feet ahead of her in the finishing chute.

Dahlias from a friend

Health update: Liverwurst for medical purposes

This is another in my ongoing series about life with cerebral palsy, a disability no one I know seems to understand.

I have eaten thousands of extra calories this weekend. I can’t stop myself. My weight has hit an all-new, all-time high and I am deeply ashamed of my behavior.

I wrote my primary care physician an email midday Thursday after I called out sick from work, but before I slept 12+ hours. I told him: I know you don’t have the answers regarding my cerebral palsy and its long term effect. I know I walk funny and that has caused arthritis type issues in my hip, my SI joint specifically. I understand from working with my chiropractor (Nicole Jensen, Back In Line) who used to be a physical therapist that the instability in my lower body, especially as I compensate when I am pain, comes from these complications. But the only thing that helps the pain is the CBD creams I get online— Charlotte’s Web and CBD Medic specifically.

I have 2-6 bad days a month, usually a couple every two weeks, reinforcing the idea that my late 40-something menstrual cycle is compounding issues. I only get cramps in my back, but I’m also experiencing pain at ovulation.

And it’s bad pain. Just like all my other pain. All in my lower back.

My new gynecologist listened to my complaints of long-term anemia (which makes me too weak to properly deal with all these other struggles), heavy bleeding, pain every two weeks and massive blood clots exiting my body, and prescribed a couple ultrasounds.

The results have been in for almost two weeks and I can see them but I don’t understand them but they did find things, even if not large and scary, but internal organs are small.

I told him, I work with a personal trainer three times a week, and except for stress eating, I eat well and take all my vitamins. I even scheduled my upcoming follow-up bloodwork.

So which doctor do I need to talk to because my schedules anemia follow up is Nov. 2, and I would like to know if any of this can be treated and/or how permanent it is and/or will it get worse?

Meanwhile, my blind friend Nan and I visited Park Avenue Market, one of our favorite places. We both order liverwurst from the deli.

The man slicing our meat, who knows us at this point, comments that he doesn’t know how people can eat liverwurst.

I told him I don’t even like it. It is a little nasty, but that this liverwurst is better than off-the-rack liverwurst. That I’m not a big meat eater and I struggle with getting enough iron as I have a history of anemia. With the right cheese, it’s not so bad, especially with lettuce and good bread.

It’s inexpensive— so if I get sick of it I feed it to the dog and the dog loves me.

He laughed.

“So, you’re buying liverwurst for medicinal purposes?” he remarked.

A glimpse into the addict brain

Today I had a great session at the gym, working with Dan at Apex Training. Dan wanted to isolate my right leg and try to alleviate some of the stiffness and difficulty I have had recently.

I felt amazing while working out with Dan, but as soon as I left the gym for my walk home, my troubles returned.

When I arrived at work, my supervisor stopped by. I told her it remained to be seen how the night would go. So I after the first two hours, I was a little behind. By meal, I was at 61– I should have been at 65. That’s not horrible but my numbers were in decline.

So I mentioned it to a lead.

And started the second half of the night with a refix cart.

This allowed me to pack my boxes with less twisting, and I was optimistic. I had gone into the lavatory and covered my back and leg with the CBD cream.

When I was working with the refix cart, my times improved, but the QC support staff starting bringing me regular carts. A lead had told me where to find more refixes, but what is the point of trying to improve my time and then having to load my own cart?

So I did the regular carts.

The pain returned 10 times over as the wonderful Charlotte’s Web Cream wore off. It seems to last about two hours.

After what I experienced tonight, I feel like I had a glimpse inside an addict’s mind.

When the cream lost its potency, the pain was insane and left me crying at my station. I wanted it to stop. I imagined reapplying the cream to relieve my pain.

Is that what it’s like to need a fix?

I didn’t mean to take this photo, but it’s pretty.

Stitch Fix Bizzy Hizzy at midnight

When I got home, I showered and applied CBD Medic Arthritis and poured myself a cocktail. That stuff is way stronger than the other cream.

Update later.

Snowy sillies

The snow started later than anticipated and my day, my bedtime, started with our weekly garbage pick-up happening at 2:30 a.m. I guess they were trying to get ahead of the storm.

And after “picking” last night, my pain and my mood improved drastically. Though I did binge on junk food again. Sigh.

But these last few months— between Covid and the new job— have really made me realize how much pain changes you.

But today… work is closed due to snow. But Joan texted that her Fix came and we opened it together on Zoom.

Photo by Joan

The teens did the shoveling, and we had some omelettes for brunch. Then this afternoon we filmed a video on our silly Valentine’s treats. The impetus of the video was some rose soda I purchased at Lidl. Our reactions: Video of Valentine’s Treats

First we played some Mille Bornes, the car-themed card game.

136, the fox in the intersection and midnight philosophy

Last night, I hit 136 in “fixes” that I “direct-picked.” So tonight, one of my supervisors informing me that I was “kicking ass” and they hoped I would hit 152 next week.

I think they jinxed me.

But let’s start with the beginning of my day. One of the interns from ASPIRE to Autonomy asked if I could go with her to drop off an award for state senator Lisa Boscola in her Bethlehem office. I live less than 15 minutes from that office (and ironically Boscola’s communications director who was setting up the meeting lives literally across the street from me) and the intern lives about 90 minutes away.

I immediately agreed and suggested that perhaps we could do lunch to help make the long drive more worthwhile. The last time she was in the area we had discussed my favorite thrift store so instead of a formal lunch, we ate egg sandwiches from the Dunkin drive through in the car and shopped at the thrift store behind Dunkin.

She found a brand new Kutztown sweatshirt for $5. She did her undergraduate work at Kutztown and is now in their MSW program. This was quite the find.

And Lisa Boscola was charming and liked my shoes and when I told her the kittens ate my laces she asked how many kittens I had… So I mentioned my involvement with Feline Urban Rescue and Rehab.

After our 2 pm meeting, I rushed home to get to work. I received a text message that the matriarch of the Velez Familia may also be taking a job at Stitch Fix.

My performance at work was a little off, and I had trouble keeping momentum that would lead to 136 again at the end of the night. And I was achier than usual. So I ate a chocolate chip muffin on my first break and drank water and coffee in case lack of food and dehydration was the problem. We had our weekly staff meeting after the 5:30 break. I was at 64 completed fixes. I should be at 72 if I wanted to hit my numbers.

At 7:30 pm, meal break, I took two extra strength Tylenol. I was just achier than usual. Couldn’t put my finger on it. I was also spotting a bit— so could it be some sort of 40-something hormonal issue?

At 10 pm, I had some chips and green iced tea with ginseng and honey from the machine. Never used the machine before. As soon as I went back on the warehouse floor I experienced some intense intentional distress.

I rushed to the bathroom. I passed the main boss for our shift. She said something casual to me like “Hey, Angel, how are you doing?” And I blurted out, “I just have to use the bathroom.”

Now at Target, you couldn’t use the bathroom without permission and since we had just had our break not even 10 minutes before I thought there might be a reaction to my using the facilities. There was not.

As I was moving on to my next cart, my right leg started giving me trouble. I couldn’t walk on it without my knee having this sideways intense pain. This lasted about 20 minutes and my leg was weak for the rest of the night.

But somehow, by 11:50, I had reached 128. We had some computer issues early in the shift, the ten minute staff meeting, the extra bathroom trip and pain I might call a six or seven but I still got to 128.

At 11:55 pm, I clocked out.

An animal crossed the road at the intersection by the warehouse. I was the only car at the red light because of the fact that I had finished a little early. In ten more minutes, there would be a long line of cars.

“Is that a cat?” I thought.

In the illumination of my headlights, I realize it is bigger than a cat and a strange orange color one doesn’t find in a dog. It looks straight at me.

I realize that it’s a fox.

I have never seen a real, live fox before. Here we are. At midnight. Alone. In the middle of the industrial park.

Now remember I am a huge Le Petit Prince fan (I even have a tattoo) and in the book the Prince learns from the fox:

One can only truly see with the heart,

The essential is invisible to the eyes.

You are responsible forever for that which you have tamed.

The Fox in The Little Prince by Antoine de Saint Exupery

For more of Le Petit Prince and the lessons of the fox in French: http://microtop.ca/lepetitprince/chapitre21.html