Author’s note: It’s my normal bedtime. I’ve been up since 4 a.m. I’m exhausted and my blood pressure has fallen to 103/58 while texting an update to my friend M. But if this is a rambling mess– not my fault.
First Three Days Back
That went fast. I truly love my work colleagues. I love our diversity and how we care about each other. I can honestly say that except for a certain someone I have managed to find the bright side of every person I have met in the warehouse. I hit 100% every day, if we got non-production time for the nine minute emergency meeting about dirty panties. Don’t ask. We all know people are disgusting.
It felt great to move and do again, and I took my blood pressure cuff to work so I could keep an eye on changes in my blood pressure. Standing and working and probably the heat in the warehouse do make my blood pressure rise by the end of the day, 128/87 today, 126/89 yesterday and 121/86 Wednesday at 3 p.m.
But by the time I got home and sat down a bit, that went down.
I have been super careful about what I eat, drinking water, consuming caffeine and sugar, taking my various medicines to my muscle relaxers to my anti-histamines.
My walk has been smooth, and today, my body didn’t even hurt like it often does after work.
Physical Therapy
Even with my blood pressure doing crazy things and having given my all at work, I went to physical therapy yesterday afternoon. My physical therapist pushed me, and it wasn’t easy with my right hip aching and being so fatigued. Because I’ve been doing so well he increased the intensity of my exercises, and I still did really well.
And the youngish, teenish girl at physical therapy beside me saw me on the balance machine and asked, “when do I get to do the fun stuff?”
To which her therapist replied, “Once you have the strength.”
My physical therapist let me go without the last new exercise he was concocting because I looked tired. Tired, I thought, tired??? I was beat. Exhausted. Hurting.
Steak Tacos
I’m not a big meat eater. And I was so completely wiped I was really tempted to have a bowl of raisin bran for dinner and call it a day. But I forced myself to stagger into the kitchen and slowly, but surely, brown and season some blackened sirloin and roast some cherry tomatoes for tacos. I sliced some jalapeno cheddar. Heated the corn tortillas by covering the meat with them. And then I stuffed the tomatoes, cheese and meat into the tortilla and put it all in the air fryer, hoping to make the tortillas crispy and the cheese melty.
(Author’s note, again: Speaking of cheese, The Teenager is driving to the Humane Society of Harrisburg tomorrow to meet a bonded pair of rats she has been approved to adopt. They are named Cheetos and Tostito– I suggested keeping the names and referring to Tostito as Toast, to which The Teen replied, “and Cheetos could be cheese!”)
When I took the tacos out of the air fryer, I arranged them nicely on a plate, arranged some potatoes beside them. I topped them with lettuce, herb cream cheese (we didn’t have sour cream) and my favorite fresh salsa. I went to carry them to the table and I tilted the plate and the tacos slid off.
To the floor.
Our very dirty kitchen floor.
I collapsed beside the pieces of my tacos. Then, I moved aside and told the dog to go ahead.
I wanted to cry. I reassembled a couple more tacos, but no air fryer, no herb cream cheese, and everything was cold.
Tonight’s Workout
Andrew at Apex Training worked me hard tonight. We did upper body strength, some cardio and some balance and stability. He even mentioned he order new tiny balance trainer/balls for individual feet because “we might need them.” I love Andrew’s honest desire not only to keep me working out– which is really what I hired a trainer for, to make sure someone made me workout and monitored my form so that I did not hurt myself– but he also works to help me improve my health in addition to my fitness.
All of the guys at Apex Training have been so good to me, and they have been instrumental in keeping me motivated, sane, and committed to overcoming all this crap that keeps coming my way. I don’t bounce back quite like I did when I was younger, and I am so grateful to have these gentlemen on my team. I might not be as athletic as I really would love to be, but Andrew has helped me become the best version of myself I can be.
The Evening and The Almost Fall
The Teenager made “radiator pasta” — radiatori — and mixed in some black olives, some sausage, some mozzarella, and some marinated roasted peppers. I ate too much, but damn did it taste good. We ate about 7 p.m. I took my medicine at 6:20 p.m.-ish. About 7:30 p.m., we went upstairs. I had my hands full and I felt myself sway. But I did not fall. Went about my business, but did check my blood pressure. It was dropping. I hung out with The Teenager and my cat Fog in her bedroom, and while I was walking around her room, I started swaying more insistently. I took my blood pressure again. It had dropped even more.
I showered. Another drop.
I drank my electrolyte drink. My blood pressure raised by five points, top and bottom, but an hour later, by the time I wrote this, it dropped again.
I’ll try to keep this brief, as it is late, and I don’t want to disrupt my sleep schedule. Okay, so it’s 9:30 p.m., but I do plan on returning to work this week so I can’t be partying like a hooligan. I was supposed to return-to-work tomorrow, but I have been having issues this weekend, similar to the issues I had on Wednesday.
I woke up lightheaded– and it took me more than TWO HOURS to drag my body out of bed. I also took my blood pressure when changing positions since the doctor wondered if I might be experiencing postural hypertension. I reviewed my doctor’s notes from Wednesday’s visit, and he said to contact him if my systolic blood pressure fell below 110. It’s been below 110 most of the weekend.
the cake is a bunny
I felt almost drunk. That’s the only way I can describe it.
So I said “F**k it,” and made coffee and had cake for breakfast, thinking maybe I didn’t eat enough with my 6 a.m. meds.
My blood pressure went lower.
I called out sick for tomorrow and maybe Tuesday. I want to talk to my doctor about these numbers first. And I have a blood test Tuesday that I also might want to know the result of before we end this leave.
The Teenager channeled the 90s in her attire today: Vans, fishnets, distressed denim shorts, a crop top and a flannel. I wondered if she should have been part of my college friend group instead of my offspring.
So I did a lot of computer work– which went slowly because my brain fog was so thick when I paused to make toast and eggs (to balance out the cake), I started doing dishes, forgot to turn on the water, struggled with how to make the hot water work, and then almost forgot the toast in the Cuisinart air fryer/toaster oven.
Luckily my cleaned, rearranged bedroom is cozy. So I spent quite a bit of time up there– until the dog spooked the cats and trampled poor old Opie. Louise meanwhile protected him. And apparently, she thinks the air purifier is for her benefit.
I just had to hop on and point out that not knowing what is going on doesn’t bother me, going for random tests doesn’t bother me, but not knowing when my symptoms are dangerous is terrifying. Because these falls seem like they should be easy to prevent. Instead my own body wants to catapult me to the floor.
I feel silly calling out of work. I worry, as anyone does, about money. I don’t want to be “the boy who cried ‘wolf,'” but I don’t want to get hurt worse next time. Because these are getting more dramatic.
Meanwhile, another item my doctor suggested was drinking electrolyte beverages throughout the night. I have some packets of Propel, which I might move to my purse for travel or work. I also bought PowerVitamin Electrolyte Power Plus supplement. I got raspberry, but now I really want lemonade and watermelon. I have been so hydrated even after taking a multi or overnight my urine doesn’t turn dark.
I keep the powder in my bedroom and mix it in the evening into my Sigg metal water bottle with the metal screw on top (from my bicycle). Minimizes threat of spills.
And speaking of my room (for the third time), we removed my old rug (I’m going to need a new one or to refinish my hardwood floors. The teen cut it into strips and placed them in the trash. They look very cool.
The reduced dosage of my beta blocker has put more pep in my step and so far improved my symptoms of feeling quasi-lightheaded. And I can get out of bed without sleeping 10 hours a night!
Yesterday was a magnificent day. The Teenager and I went to her grandmother’s for an impromptu early Easter dinner and pie baking lesson. Grammy’s crust is 1 cup flour, 1/2 cup shortening and 1/4 cup water.
We brought the dog and invited Southern Candy to have dinner with us, since she had texted that she missed me and I had produce scraps for the guinea pigs.
Southern Candy told me she had regrets about accepting the invitation because she doesn’t “know these people” but I assured her it would be no problems, she’d have fun and there would be pie. Prune custard to be exact.
And Southern Candy told me she doesn’t like custard. I told her she should try it, and if she didn’t like it, she could slip it onto my plate.
Southern Candy loved Grammy’s decorating style, her cooking and our free-flowing conversation. And then she was the first person at the table to reply when Grammy asked how the pie turned out.
“I’ll tell you,” Southern Candy said. “I don’t even like custard but this pie is delicious!”
Early Easter dinnerprune custard
Grammy’s pie does that to people.
Grammy tried to make me memorize the custard recipe: 4 eggs, 1 can sweetened condensed milk, 1 regular can milk, and corn starch. I forgot the exact measurement.
Meanwhile today I deep-cleaned my room. I only got it 75% done, but it gave me a chance to do sustained work before returning to the warehouse Monday. Perhaps in the future I will do a blog entry on family books. I have my travel diary, my great-grandmother’s little brother’s copy of Walden, my great-grandmother’s Aunt Tilly’s scrapbook and family notes, my great-grandmother’s journal from when she was 20, some old prayer books and hymnals, and my grandfather’s scrapbook of his time on the Queen Mary during World War II, which has Bob Hope’s autograph in it.
gifts from Darrellreorganized bookshelfold family and personal booksart of our pets and my chicken paintingsdog sneaks into my clean bed
And I got the results of my Zio patch — but the cardiologist has not reviewed them yet.
7:30 a.m., Wednesday, April 5: Yesterday I was discharged from hand rehab with John at The Institute for Hand and Upper Extremity Rehabilitation. My hand strength in my right hand is stronger than my left hand, so even though my pinky doesn’t quite have all the functionality it should, John thinks with proper use and exercise at home I can handle recovery.
As John said, implying that he could trust me to monitor and invest in my own hand health, “with everything you have on your plate, this is a mere flesh wound.”
Indeed.
With that, I had my last session of rolling and smashing silly putty and twirling balls in my hand. Really, hand therapy is not that far from children’s play. As an adult, there’s not enough activities that involve silly putty.
After a weekend of high blood pressure, my body suddenly feels low– and my blood pressure is on the low side, even after coffee, and I’m light-headed and feel as if my blood sugar could be low, despite snacking on a slice of fresh pizzeria pizza (I found that real pizza versus Dominoes or frozen varieties does not have the sodium and preservatives that impact my numbers) when I took my evening dose of Lopressor. I ate breakfast, and that helped some, but not enough. I also had an 8-ounce glass of water.
So, as my primary care doctor is signing off on me returning to work on Monday and we’re still waiting for my cardiologist’s report, I’m terrified that something might happen today. But I don’t want to manifest my own misfortune. It’s interesting to note that today was supposed to be my first day back to work, but I still have physical therapy during the day this week, and I felt better knowing my cardiologist should have the info he needs by then in case we need to make adjustments to my treatment plan.
The manufacturer of the Zio sent a push notification to my phone that they received my device and will have the data to my doctor soon.
My left hip, according to my physical therapist, was tight Monday, and now my right hip is giving me issues, the kind of issues it often has when compensating for the left hip.
I should have taken a shower last night, but I thought it would be nice to shower in the morning, but then I remembered I have physical therapy and the gym today… but I might have to take two showers today. I need to see if I can shake this feeling of brain fog and lightheadedness. By then, it will be 8 a.m. and I can call my doctor’s office. They are next door to physical therapy so maybe one of the medical assistants can take my blood pressure. Because my neurologist would be mad at me if I ignore this.
8:20 a.m. After a hot shower and exposure to The Teenager’s work drama– not being able to get into a client’s house to feed the dog– my blood pressure is now high. So I don’t know whether to call the doctor or not. I put on my sports bra inside out and my shirt backwards.
8:30 a.m.I called the doctor’s office. They won’t let a nurse or medical assistant take my blood pressure because they would like a doctor there because of my history. I have an 11:15 a.m. appointment, directly after my physical therapy, with one of the residents, I think, because it says my doctor’s name but that’s not what she told me. But it usually shows the resident’s names so we’ll see.
9 a.m. I decide to play with the Stitch Fix style algorithm before leaving as I only have a couple minutes. This will be important later… because brain fog. That was another symptom I’m struggling with– I put on my sports bra inside out and my shirt backwards.
Brief interlude while I am thinking of it. My hospital EOB came yesterday, as did updates as to some of my other medical visits. It’s obscene to see the battle between medical providers and private insurance companies. When did this become an acceptable model of business? The hospital charged my insurance company almost $18, 500 for one day of services. The insurance company pays a pre-negotiated rate of $2,500 and I get bill about $300.
In a similar fashion– the medical office billed the insurance company for the resident who so patiently spent 30 minutes removing three stitches from my face. It was itemized as “surgery” and the provider billed $66, of which the insurance company paid $13. And left $1.50 for me. So this poor resident, who worked her way through medical school and had to dig the stitches out of my scabby face, isn’t even worth $30/hour?
9:40 a.m. I arrived at Physical Therapy to sit and read my book until my appointment. Yesterday, I finished Susie Bright’s How to Read/Write an Erotic Story and I have every intention of finishing Suzanne Mattaboni’s Once in a Lifetime today.
10 a.m. or there-abouts: physical therapy with Jimmy, instead of Eric, because it’s Eric’s birthday, and his colleagues suggest that this might not be his first thirtieth birthday. I am also informed that the goal today is to poke fun at Eric as much as possible because he’s not there to defend himself.
Summary of Physical Therapy: I worked hard and found myself pushing and having good balance despite the issues with my quasi-lightheadedness. As usual, my left side is tighter than my left, but I notice as the day goes on my discomfort on the right seems to be correcting itself.
I also told my physical therapist about The Institute for Hand and Upper Extremity Rehabilitation and my mallet finger that I did last year, right before Easter. I explained how I ruptured the tendon pulling my socks off. He’s now afraid to take his socks off.
10:40 a.m. I stop at the car to update my notes and drink some water. This massive Audi SUV is parked next to me, requiring that I turned sideways to slip into my car. I take my blood pressure: 122/71.
10:50 a.m. I walk down to the primary care office, and finally put the facts together that between the physical therapy office and the family practice, there is a pediatrician. That’s why I always hear screaming children though the wall. I use the rest room and open my book.
11 a.m. My doctor’s assistant takes me back to the exam room, and confirms that I will be seeing my doctor. She’s the same person I correspond with through the portal, and who fills out all my paperwork with the patience of a saint. She doesn’t weigh me and this disappoints me because I think all this healthy eating has resulted in a smidge of weight loss.
If we’re honest, I feel silly. My head still doesn’t feel right, but I’m fine… I mean I’m going to be cautious but it could be so many things: blood sugar, blood pressure, the beta blocker, allergies or even the pollution from the major industrial fire a mile away yesterday or heck even stress… but the neurologist said… Everyone in the office, including the doctor, reassured me that I did the right thing since no one wants me to fall again.
My blood pressure was 120/77, which is pretty darn close to my car reading so that proves that my monitor is reading my blood pressure accurately and the presence of the doctors does not cause my blood pressure to increase.
Alpha Books J Journal
11:10 a.m. the assistant leaves and I open up the final pages of my book. And I finish it in five minutes.
11:30 a.m. the doctor arrives. He sees my Alpha Books J journal in my lap and starts asking questions. Then he asks why I am there– that my chart just says “high blood pressure.” I explain that no, it’s actually lightheadedness that started with low blood pressure but hasn’t abated since my blood pressure returned to normal levels, and that the neurologist made me promise not to ignore symptoms like lightheadedness.
I explain that I got out of bed a tad clumsier than usual, after ten minutes of trying to force myself up despite 9.5 hours sleep, and I just attributed it to stiff cerebral palsy legs. But as I went downstairs and turned the lights on, I realized I was a tad lightheaded.
I poured a glass of water, took my blood pressure and my meds, and made a cup of weak (for me) coffee and finished my water and had fruit and toast.
I pass the doctor my list of blood pressure readings and tell him my first of the day was 102/68, followed by 108/65 an hour later.
He peruses the list I gave him and asks, “do you have some fancy blood pressure device that takes your blood pressure every hour?”
“No,” I say. “I’m just neurotic.”
He chuckles. “It’s not bad,” he says. “It gives me data to work with. I have patients I can’t get to take their blood pressure once a day.”
“I know you’re going to ask me what happens in certain situations, so I just want to see if I can anticipate the questions so I have the answers. Like there’s definitely a difference when I eat pizza from the local pizzeria that uses real ingredients versus Dominoes.”
He mentions I should track my pulse. I told him I look at it when I take my blood pressure because the neurologist mentioned it but I haven’t written it down. I haven’t noticed anything. And I didn’t tell him about the symptom diary I started. But I did come home and add heart rate to my iPhone tracking info. I really need an Apple Watch. Okay, I want an Apple Watch, but I refuse to consider buying one until my business computer is paid off and I replenish my savings and pay off the credit card bills I ran up during this hiatus from work.
He performs some basic exams, and has the nurse take my blood pressure lying down, then sitting, then standing up. If the low pressure is caused by gravitational pull on my body, or something like that, my blood pressure will drop as I quickly force myself upright.
My blood pressure spiked (142/100) suggesting that I tensed, which I did, because the sudden movement made me feel like I was swaying. And I braced my muscles, afraid I might fall.
So, the next test in our journey through Angel’s recent career as a face-diving professional, is to half the dosage of my Lopressor. My doctor thinks he found a note made while I was in the hospital that the IV medication made me dizzy and that’s why they switched me to the oral tablets. I don’t recall this, but a lot happened that night… so I asked The Teen much later, and she said no, my memory is correct. I read the note the doctor found, and I believe, though I could be wrong, that the real problem is doctors have no skill at writing and this leads to misinterpretation. Ooooh, maybe I need to start a “Clearer Writing Styles for Doctors” workshop.
And since my echocardiogram was perfect, and he reviewed it there with me, but I’d already read it, he wondered if the beta blocker was necessary at all (ironic since he was trying to get me on blood pressure medication for the last two-plus years) and/or if the Afib was an isolated incident. I dispute this theory, because I had two unexplained, nearly identical falls within two weeks.
My doctor reduced my beta blocker in half, which meant I had to remember to go buy a pill splitter because I already have the tiniest pills I ever saw. And he also suggested taking some sort of hydration beverage into my bedroom– a G2 gatorade or a Propel– to drink before getting out of bed.
And he closed with something like, “these are the kind of things I have to tell my patients who are 70 or 80, but unlike them, you’ll listen.”
Then he asks, “when is your next appointment?”
Not until August, I reply. He looks to me in disbelief. “I want to see you before that.”
And he sends a note to the cardiologist that he reduced my beta blocker and asks him to review the data from the Zio patch. The same Zio patch that just returned to the manufacturer yesterday.
I mention I will see the cardiologist May 5, if that matters when scheduling our next rendez-vous.
“I want you to check in in the next couple days,” he directs me, “and I want to see you next week.”
“How about April 20?” I ask. “It’s in the middle of now and April 5 and I already have to take the day off for some CT scans at the hospital and physical therapy.”
I’m going back April 20, at 8:30 in the morning, to meet with one of the residents. I didn’t think to check which one.
12:10 p.m. I leave and head to my friend Maryann Ignatz’s house to bring her some books she ordered and visit.
2 p.m. CVS. The computers have gone insane. I don’t think this will impact me as I peruse the aisles. My list is simple: a better lotion for scar care, an electrolyte drink, a blood pressure monitor, and a pill splitter.
Now, I have a borrowed monitor and I’d rather have an Apple Watch connected to a wireless monitor cuff…
And the only thing on the list today I need right away is the pill splitter.
So I find one for $8.49 and I have a 40% off coupon that expires today. I also find Propel dry powder packets that go into a water bottle– I think $3.49 for ten packets. On Amazon, the already constituted Propel Water in the same flavor costs $8.38 for 12 bottles, which is 70 cents a bottle or twice the price. I even placed one of my reusable water bottles by my bed, and I picked one with a screw-on lid designed for my bike so it’s less likely to spill.
The blood pressure monitors start at $62, and the $62 one provide $10 in Extra Bucks, but I don’t want to spend that much now.
And the only lotions “better” than the ones I have at home start at $10 and the ones specifically for scars are $20.
And on top of all that, the system doesn’t really register my Extra Care card, so it says I was logged in, but it didn’t use my coupon.
I never pay full price at CVS.
And we’re not going to talk about the fact that they were sold out of jelly beans.
3:30 p.m. I make a run to the bank and take the dog for a trip to Dunkin’ for Munchkins. Oh, and the teen. I eat too many jelly munchkins, drink a cold brew and eat one of their salty processed sandwiches, their completely not-a-Grilled Cheese with their sun-dried tomatoes. Not worth the money I paid. My blood pressure does not change. I cancel the gym for tonight because I still don’t feel stable.
I come home and I cut a pill. The Teenager then insists she can do it better and that I’m sloppy.
vegan tofu salad with lime dressing and cucumbers
4 p.m. I spend some time with my cockatoo, and tend to some self-care details and start laundry.
6 p.m. The Teen and I make salads with tofu nuggets and romaine and cucumbers. The Teen devours heaps of romaine and cucumber. With a homemade fresh lime dressing.
I mention to the Teen that KFC has nuggets now.
“Really, Mom?” she protests. “You expect me to eat tofu after mentioning KFC?”
And then I proceed to drop the knife several times while chopping vegetables. I’m amazed I still have all my toes. Brain fog is so real.
6:45 p.m. I text the neurologist just to update her.
7 p.m. I place my last load of laundry into the dryer and find a half pill of my beta blocker on the table.
I call the teen’s name.
“Did I not take this with dinner? Did I miss my mouth?”
“I doubt you missed your mouth,” she reassures me. “It probably just slipped out of the bottle.”
“I could count them,” I say.
“And if there is an even number, you fucked up,” she says.
It was an odd number.
7:30 p.m. I finally retire to my room hoping to start a new book as part of my pre-bed, no screens ritual. I make the bed, feed the cats, put my Propel packets in my drawer and organize my lotion (for scar massage on my finger and my face) and my water bottle. But first I have to finish this blog entry. And I notice– to my chagrin– that somehow this morning I changed my next Fix from May 18 to April 18. Hopefully I can change it back before the stylist grabs it, because my charge card needs to take a little vacation from my wallet until I rebuild my rocky finances.
And that, friends, was my day. Louise the Tripod is snuggled against me, kicking me with her back feet and snoring. I still need to give the bird water, make my Propel, brush my teeth and massage my scars. So, if you think I’ve been over here partying during this short-term disability leave, I have not.
Minerva is the last foster cat from the second litter of kittens we fostered for Feline Urban Rescue and Rehab. Her brother, Mars, is The Teen’s foster fail. I can only assume their siblings Jupiter and Vesta lived happily ever after. Our Roman Pride of kittens.
Every month or two, I take Minerva and usually someone else to keep her company to the Meet the Cats event at the Phillipsburg Petco, because it’s a quieter and smaller event than the organization’s usual pre-adoption mixers at the Petsmart in Lower Nazareth Township. It’s a different state and a different crowd.
Mars and Minerva spent almost six months in various habitats — Petco, where one volunteer couldn’t read directions and got bit by Mars; then Petsmart, and then the other Petco in Phillipsburg because everyone thought they would do well with the coordinator there. And they did. And we did. But they spent too long in pet stores which made Mars unflappable and social, while Minerva became shy and nervous.
So they came home. They are both soft, cuddly tuxedo cats.
And when the same person who cared so well for them two years ago asked if Minerva could return, I said yes.
I was told a family wanted to meet her today, so I went to Petco to warm her up before they arrived.
It became apparent very quickly she was happy to see me.
And after a lickable treat, she became downright flirtatious with the young man/teenager feeding her. He had never had a cat before and the two of them seemed to have quiet souls. He pet Minerva for 45 minutes, and then she made eyes at the mother and soon came out for proper greetings.
It was a friendly, charming side of Minerva I’ve never seen around strangers before.
And when we started to leave, she followed us to the end of her enclosure, hollering, as if to say, “Hey! You can’t leave without the cat!”
Minerva is the perfect first cat. They sent a text saying they are heavily leaning toward adopting her.
And they go to the same vet who already treats Minerva. My fosters will always have a home with me, but I have long believed that Minerva needs more quiet predictability in her life to blossom. A teen who enjoys video games in his room is the perfect companion for Minerva, and she’s a low maintenance cat with no baggage.
The mom asked me why she had been in foster so long– as if she had to have some secret flaw. But she really doesn’t. Her flaw is she hides, and she hates loud places so she doesn’t “show” well. She’s merely been overlooked.
Here I am, looking less exhausted and beaten. My scabs were flaking off and healing nicely but some of them cracked today (vigorous chewing? It happened at lunch time) and started bleeding. I’m still impressed at how quickly the body can heal, but these stitches feel like flies on my face.
I left the house early today to visit Koch 33 Collision. In early February, a work colleague’s car happened to give mine a love bite on the entrance ramp of 22– this was early on in the days of my unknown cardiac troubles when the symptoms were starting to show. I remember not because my heart had anything to do with that situation but because I joked about minor car accidents just adding more stress to my life. The estimate will cost less than $1500, hopefully the insurance companies can agree to that.
When I came home, I made myself my first cup of coffee for the day. I have slowly been changing my morning coffee habit into a morning water habit, unless my blood pressure is low, then I go ahead and make the coffee (which my occupational therapist at hand rehab thought was hysterical).
“What?” I said. “This is my first week on this medication and my blood pressure has been low when I have to take it. They don’t know what caused my a-fib, so I can’t skip the dose, but I also can’t take a beta blocker with a blood pressure of 97/56.”
Today my blood pressure was perfect so no coffee.
The neurologist’s office called and moved my appointment up a week from 4/4 to 3/30. I mentioned the report from the physical therapist should be in my chart, and that the news looked good, and that my body had adjusted to the beta blocker so my blood pressure and my blood sugar seemed to be stabilizing.
Gayle had promised me a new graphic every week I made it without a fall. Unfortunately, I was on day seven when the last fall occurred so I never earned it. But today is day eight. So I definitely made it seven days. And I display my new badge proudly.
I worked on Larry Sceurman’s short story “The Vanity Demon” for his upcoming anthology, Coffee in the Morning. I’ve reached the point in the editing schedule where I should edit one story a day to kick back to Larry for final tweaks before sending to Gayle for layout.
Speaking of stories and Larry Sceurman, Gayle, Nan and I spoke to the Apex Writers Group last night on Zoom, about 21 people attended our presentation. The participants seemed most interested in book construction, so Larry’s book, The Death of Big Butch, allowed us to show how we used text and book design to reinforce the nostalgic feel of the 1970s.
I also received my latest copy of the Greater Lehigh Valley Writers Group newsletter, which included my first official “Podcasts for Writers” column. If you’d like to read all of it, it appears here. More of these lists will be printed and organized in my paid Substack archives.
The Teenager came home from work and we had to run some errands. Somehow, we ended up at my hand rehab appointment more than an hour early. We visited Josh Early Candies, which killed some time. But with our meager budgets we could not afford fancy chocolates.
We ended up at Grocery Outlet, but not our local store, one on the other end of the Lehigh Valley. And we hadn’t made it 20 feet into the store when I spotted Silk Very Vanilla Soy Milk in juice boxes. Now this is The Teenager’s favorite milk for drinking.
She almost bought a pop-top can of artichoke hearts to eat in the car but proclaimed that would be a new low, even by her standards. I bought myself a pack of Maple Donuts because it was time for my afternoon snack, and I seem to do better if I save a carb-y item for around 2 p.m.
The Teenager then made a noise and I wasn’t sure what was wrong and she said it was sad how happy we were wandering around a discount grocery store. I lamented that it was a shame Nan could not be with us. And I didn’t know if that would be a good time to also mention that Gayle and I had exchanged emails with a ridiculous amount of excitement about customized packing tape from Sticker Mule.
Gayle had said she had to check out the template because it was something the business should do when we had more money and I quickly said that despite the fact that we recently printed a new book, this was something we obviously needed. And then she totally outdid herself on the design, so if Sticker Mule delivers a good products, it’s going to be so amazing that you will have to order books just so you can receive a package from us.I pack a good looking parcel to start with, so this will up our game.
When I showed Gayle’s proposed design to The Teenager, the Teenager also got excited and I bet her father would, too, because he did spent most of her life to date as a shipper-receiver so our whole family has an acute appreciation and enthusiasm for packing tape.
But this is taking up way to much space– The Saga of Angel and Gayle and their Polka Dot Packing Tape.
The Teenager and I sat in the parking lot eating Maple Donuts. Maple Donuts are always delicious, but they are not maple flavored. These donuts had a sell by date of March 27 and it’s only March 21 so I knew they would be melt-in-your-mouth soft. And they had cinnamon sugar. I LOVE A GOOD CINNAMON DOUGHNUT.
I ate two cinnamon. They glided down my gullet and I couldn’t help myself from also having a plain cake doughnut. I have no self-control.
The Teenager whipped out a Silk soy milk.
“Are you going to drink that warm?” I asked.
“Room temperature,” she answered. “Do you think I ever drank these cold? How do you think they came out of my lunch box?”
,
Hearing her reminisce about having these in her lunch box reminded me of how many times I worked hard to find sales and coupons and deals to buy them for her because I knew she loved them– and other than that she only got Juicy Juice or Adam and Eve juices because I was very strict on what I fed her and Silk in juice boxes was so expensive compared to the half gallons. And sometimes I worked hard to save money on all the other groceries so I had the $10 extra to buy her favorite milk for her lunch.
And they are delicious.
The half gallons supposedly are only sold at Dollar General these days but we still haven’t found one in our area that sells them.
Once we headed to The Institute for Hand and Upper Extremity Rehabilitation, we had our cravings satisfied.
The Hand Report
When I arrived at therapy, they wrapped my hand in a moist heated pack for twenty minutes and it’s the best twenty minutes of my life. My therapist heard my tale of falling down the stairs and landing in the hospital in the hours after my previous visit, and he said I win for the most interesting story of the day.
Then, he proceeded to talk with me about things I could do at home to prevent future falls and make my life safer– because he is, at the end of the day, at occupational therapist. It was a great talk. It was an even better conversation because he gave me a hand massage during it.
My mobility has improved greatly, and even though it is still swollen, I can make a fist! I did several exercises there. My therapist mentioned that next time we will focus on strength, because he believes he can trust my previous experiences to make sure I follow through with a home rehab plan, he wants to be sure I have full hand strength so that I can fully grip the banister.
“Not that I’m picking on you,” he added.
I did four sets of exercises. First I picked up handfuls of these six-sided dice and dropped them all so that the six was facing up. Then I held the big ball in my hand and drew the alphabet in the air with only my hand and my wrist, not my arm. Then I squeezed the red ball. For the final exercise, I had two balls the size of a golf ball but a tad lighter. I rolled them across my fingers and then tried to reverse the order on the way back.
I’ve been sipping strong coffee for about 90 minutes now, munching pistachios as I take my morning beta blocker. I have been trying to get my meds to 6 a.m. and 6 p.m. I don’t want to take them at the time I get up for work, because who wants to wake at 4 a.m. on a day off? The hospital gave me them at 9:30… but in the evening I’m usually asleep by then and working on a typical day. 8:30 a.m. is my morning break at work, so that would make sense from a practical point of view, but it would also mean having a snack at 8 p.m. and not getting to sleep until 9 which means the most sleep I will ever get is 7 hours. 6 a.m. and 6 p.m. sound ideal because I usually arrive at work at 6 a.m. and have a small breakfast and 6 p.m. is dinner.
But today I slept until 7.
Oops.
But when I got downstairs, my legs felt persnickety and my blood pressure was perfect if not a little low– so I went ahead and made the strong coffee. And I took my baclofen for the first time since before I went into the hospital.
One of the generalist’s at the hospital thought the baclofen might be causing some of my issues. Which makes this a test? Maybe?
But this is not a post about my Zio heart monitor or my scabs slowly crumbling down my face, though those things are fun. My gash is healing rapidly and well. I wanted to talk a bit about my weekend and what’s up with the publishing company.
Many of these thoughts will be further explored as part of the Parisian Phoenix blog and Substack newsletter. We’ve migrated from Mailchimp to Substack for better visibility and the prospect of building more paid resources and services for writers and readers. If you didn’t read this week’s recent release, check it out here.
Friday night, a journalist friend and her partner came to visit. I had planned to go visit her, but this close to my hospitalization I wasn’t sure driving on the highway by myself for an hour was a good idea. They have also been involved with cat rescue, so she’s offered some support on realigning the cat book. I’m helping her (I hope) with some of her goals and we’re both trying to help people find ways to publish their books.
My unsolicited submissions pile is growing rapidly.
Meanwhile, the dog is keeping an eye on me.
In the afternoon yesterday, I visited my “office” at Panera where our photographer Joan touched base with me regarding her activities at the Greater Lehigh Valley Writers Group conference this coming weekend. She’s not fooling me– I know my friends are doing wellness checks.
But I had the most amazing meeting with the duo behind Echo City Capers, and we have a handshake agreement to launch some projects together which will allow Parisian Phoenix Publishing to kickstart Parisian Phoenix Kittens with a second edition of an Echo City Capers Jr. book, a children’s book from Darrell Parry (and maybe someday a puzzle book/older kid story– hint hint Darrell) and perhaps event a story in the vein of Eric Carle from Larry Sceurman.
It’s thrilling to watch a simple “let’s introduce ourselves” coffee meeting can explode into ideas and mutual support.
That little meeting went two hours and when they saw our physical books, they were pleased. They immediately saw the love and attention we give to our titles at Parisian Phoenix, and without even meeting Gayle yet, I think they “know” and trust her.
I ended my afternoon romp with a visit to Larry, to deliver some publicity materials and give him and his wife, Barbara, a copy of Thurston’s book.
When I left, I felt like my blood sugar was dropping. I found a cherry Pop Tart that the Teenager had left in my car more than a year ago and came home and made a lovely lamb dinner. (The teenager saw lamb and potatoes in the skillet and immediately claimed the leftovers.) My blood pressure was high, but it was also time to take my beta blocker.
Finally, I slithered to my bed– exhausted, when I didn’t even do much– in great anticipation to finish Katherine Ramsland’s I Scream Man and Echo City Capers YA Graphic Novel printed in Canada, Who Turned the Lights Out?
I was so tickled and delighted to read the wit, the humor and the “smarts” in this little volume, which the type is uniquely done and the paper quality gorgeous. It made me very sad to put the book down to sleep.
TRIGGER WARNING: This blog posts contains descriptions of a fall and medical treatment.
Listen, this one is going to be long. I spent almost a day in the hospital under observation on the general med-surg floor without my laptop or my phone charger. And the special type of not knowing in the hospital means you can’t trust them when they say you’re going home until they pull the IV out of your arm.
I’m going to use subheadings and break it up with photos. Gayle says I need to start writing a television sit-com. I would– but I’m not a screenwriter. Maybe I’ll change this into a play at some point.
The Unexpected End to the Evening of 3/13/23 (the fall)
It had been a busy day– maybe too busy: work, hand occupational therapy, a killer chest workout at the gym– but it was a good balance day. I could stand on one foot, I felt myself, and I was jovial. The only weird thing was on the 13th rep of every set of barbell bench presses, my right pinky would tingle. I even mentioned it to Andrew, and in the back of my mind, I was concerned because when my blood pressure spiked in early February, my right hand tingled.
I got home, had a lovely dinner with my daughter that included a massive bowl of brussel sprouts (which are one of my favorite things in the whole wide world) and made a cup of valerian tea to take to my room because I felt a little hyped up and it was almost bedtime.
I had the tea cup in my left hand, and my buddy straps for my sprained pinky on my right, and I was probably using the banister with my right hand. Three-quarters of the way up the steps, probably where the banister ends, I felt myself falling backwards. Just like a tree swaying in a storm (which considering the weather we’ve had recently sounds like the right metaphor). My normal falls start from my lower body. This did not.
I made a sound and started dropping f-bombs as I cascaded, according to the Teenager, sideways then straight out and dropped at a ninety degree angle onto the air conditioner. The Teenager ran to me. The air conditioner knocked the wind out of me, seriously knocked the wind out of me and now judging the bruise on my back it might have been a kidney punch from the stairs. I slowly rose and sat on the bottom step.
As I did so, I saw a frightening look on The Teenager’s face.
“I’m fine,” I assured her.
“No, Mom,” she said. “You’re not.”
Later she explained to me that blood was “pouring from my mouth” and she worried that I knocked teeth out. Honestly, from the pain in that moment, I feared I had broken my jaw (in part because in my chin-meets-sidewalk accident of spring 2010, the ER staff and the dentist marveled that I had taken enough impact to spit out teeth but had not broken my jaw).
The metal frame that holds the air conditioner in the window had sliced open my face under my lip. The tea cup had ended up between my breasts and smashed into pieces. I looked at my hands. They were covered in blood. And the floor. And the wall.
My pajamas were wet. And most of me had driblets of blood here and there. The Teenager got me a rag and a bag of frozen peas and we sat on the stairs for a minute and tried to stop the bleeding. The lightheadedness, feverishness and sweating started. I handed The Teenager my phone and told her to call Sassy, because she witnessed the last fall and this felt identical. I also checked my blood pressure: 106/81.
Sassy answered despite being at a restaurant with her family. It passed and I promised to keep an eye on myself and call my doctor in the morning. But when I looked in the mirror, I knew what my daughter described as a cut was a gash and it needed stitches.
I peeled off my pajama top. Blood streamed across my chest, perhaps from the tiny pricks made by the broken ceramic but more than likely from my face. I left on my fuzzy Cat-in-the-Hat pajama pants, threw on a tiny yoga tank and a Stitch Fix t-shirt and zipper hoodie and headed out the door in dirty slip-on sneakers and no socks.
In the Emergency Room: When the doctor listens and the patient acts responsibly
My daughter took my car and drives me to the hospital literally 600 steps away. She didn’t trust me to walk. It’s literally half way between our house and her high school, but she doesn’t know how to drive there so we wiggled around the neighborhood. We wandered in, registered, and were taken right back. 8:20 p.m.
The Teenager did have time to buy refreshments from the vending machine.
Once we got into our room, we saw nurses and a doctor very quickly. Our Emergency Room physician was amazing. I explained what happened, including my description of how my falls have not been normal, and he gave me three options.
He could stitch me up and send me home and I could be home by 9 p.m.
He could order bloodwork, fluids and an EKG, but then I would be there an hour or two.
He could go all out and order CT scans and all the things, but then I’d be there for hours.
I chose option 2. I already felt something was off, and I thought bloodwork would give us a starting point without going crazy like some sort of hypochondriac. (Speaking of hypochondriac, my current favorite podcast is Hypochondriactor with Sean Hayes and Dr. Prianka Wally.)
They even allowed me to throw out my rag and get a big old pack of gauze.
The nurse hooked me up to an IV of fluids just in case the incident was amplified by dehydration. Here is the first mistake we made, not putting on the hospital gown until after my IV was installed. So when they came in for my first EKG, I had to shimmy my shirt and tank down the IV line to the bed.
The poor technician with the EKG machine had a terrible time getting it to work and she was so close to the end of her shift and tired. The Teenager had her intrigued that she had found a half-iced tea, half-lemonade Monster in the vending machine. The technician ended up getting a second EKG machine and the doctor came in to do the stitches but decided to come back later.
That’s about when The Teenager almost sent Sobaka’s mom a text that I was in hospice, thanks to auto-correct.
And the blood pressure and heart rate go crazy
You know that look you never want to see? The one where the doctor almost gets an “oh shit” expression? Now remember– I came to the hospital for stitches. And I’ve been monitoring my blood pressure for six weeks. And maybe it had been a day or two since I checked it, because we went to Waffle House, had margaritas and ordered Dominos in the same weekend.
I was informed that my blood pressure was high and they were going to administer a beta blocker through my IV line. After it kicked in, I looked at the monitor and it said 150-something over 90-something. I’m glad they had it turned away from me before giving me the medicine.
The second EKG revealed I was in atrial fibrillation. And as my blood work started rolling in, it should my white blood count and TSH was high.
Meanwhile, I am texting my travel companion M, because he’s a medical technologist by trade and loves numbers.
They also asked when my last tetanus shot was, to which I responded, “two weeks ago.”
When the doctor came in to do my stitches, I asked if he could unhook me from the IV so I could use the restroom first. Because I don’t know about you, but I find it horribly difficult to handle pain when I need to pee.
The doctor finally had his chance to shoot up my face with lidocaine (that second shot was a bitch) and sew up my lip. We irrigated the wound by me holding a basin under my face and him pouring the solution over my face so I ended up with quite a bit of liquid and a little bit of blood on my gown and down my chest.
I got three stitches, and he did a nice job. Not that I have a whole lot of experience. I’ve only had stitches once before.
And then I got a third EKG from a new technician also about to end his shift.
That’s when the doctor said I was still in A-fib and he’d like to admit me for observation. If that was okay with me. And if the hospital administration would allow it. Which probably means if the insurance company would allow it.
Admission
At 11 p.m., I was wheeled into some narrow elevators and transferred to room 353, which had to have made M happy. All prime numbers. I was admitted to the med-surg floor and I think I might have been the youngest person in the hospital. As we rolled along, I noticed they have a whole lounge of the chair I love that the dog ate!
The nurse had some situation going on so it took us until 1:30 a.m. to finish my admission survey. I had fun with some of the questions: “Are you safe at home? Do you face any physical or verbal abuse?”
“Only from my cockatoo,” I replied.
They had to take photos of my bruises, too, and take my cardiac enzymes, blood work and vitals every few hours. And the floor seemed to be crazy until 2 a.m.– and remember, I had gotten up for work at 4 a.m. I managed to take two naps each about 45 minutes.
I thought I had turned off my work alarm, but I had not, so it went off at 4 a.m. and then the nurse started her rounds at 4:45 and my work friends started texting at 5. So I was up for the day, with no phone charger and a book by Katherine Ramsland as my entertainment. I read 150 pages.
I was delivered the most boring, high carbohydrate breakfast I have ever seen.
And the staff kept offering to bring me water, and when I said yes, they would disappear forever.
I met with the cardiologist, the occupational therapist, the physical therapist, and the hospitalist (who needs a caretaker for her beagle when she visits India for a month this summer).
By morning I was allowed to move independently, which meant I could use the bathroom without someone watching me walk. The staff quickly learned that although I have cerebral palsy, I am adequately mobile.
The cardiologist explained that we would start a beta blocker, as that is the easiest form of management, and based on the echocardiogram and the information from the heart monitor I will be soon wearing, we can determine if different or more aggressive treatment is needed.
Often, A-fib raises risk of stroke so patients often take blood thinners. My cardiologist and I agree that will my tendency to fall, those medications would do more harm than good.
Echocardiogram and therapists
The echocardiogram was fascinating. To see an ultrasound of my heart in motion was truly an amazing reminder of what a complex and marvelous machine the human body is. My mitral valve regurgitation did show up on the test, but even with that my heart function was normal. That was great to hear, because lord only knows I didn’t want to hear that the mitral valve was failing and confusing the rest of my heart. I have never had medical surgery and would like to keep it that way.
The occupational therapist I met asked me what my everyday challenges were. I answered that my biggest challenge was dealing with my socks and shoes. She showed me an extended shoe horn and a sock aid. The sock aid is basically a big piece of plastic pipe with a jump rope attached to it. You put the sock on the end of the pipe, stick your foot it and pull the tube away from the sock with the rope.
I think you probably kill the life span of your socks by stretching them out, but if it means you can put them on, that’s cool to know.
And the physical therapist okayed my gait and my walking, especially knowing that I was already scheduled to start fall prevention therapy on Monday.
I was able to order my own lunch, but even though I ordered the entree salad, I got something much blander. But compared to breakfast it was delicious.
The Teenager came around one, because the hospitalist said I would soon be discharged. The hospitalist had declared the fall was mechanical, even despite my protests it was not. She told me to follow up on that with my neurologist. And I plan to. The poor neurologist has been getting so many portal-based text messages from me.
The head nurse came in and gave me a gift blanket— that would have been nice to have the night before.
The nurse removed my IV and 2:30 and we left the hospital about 3:30. I filed my short term disability claim, made an appointment with my primary care physician and took my first set of meds. The Teenager made dinner and I was in bed, asleep by 5:30.
My bruises hurt. My lips are dry and sore but finally the cuts are healing enough that food doesn’t burn them.
I have proposed to my employer, and plan to bring paperwork to my doctor tomorrow, to leave me out of work for at least three weeks. I have six weeks of leave left. The three weeks would give me time to see if the medicine is working, finish hand rehab, participate in fall prevention, wear the heart monitor and take ALL that information to my neurologist.
Because no one wants me having another episode at the warehouse.
The cardiologist assures me that I can’t blame this on Waffle House, margaritas and Dominos, but how can we know that when the last fall down the stairs happened after Little Caesars, Taco Bell and Diet Coke. Coincidence? Do my overbooked days add to the triggers? The risk factors for A-fib include anxiety, being overweight, alcohol and caffeine. That’s my life in a nutshell.
I’m going to see Nicole today, not sure I need a chiropractor right now, but I had the appointment already and I like the idea of her checking my post-fall body.
I am so sick of disability-related posts. My goal today is to start the March newsletter for Parisian Phoenix, which I will be distributing via Substack. Yesterday felt like a beautiful spring day and today, today there is two inches of snow on the ground.
I’m tired. And sore. And stiff. I called out from work today, although I’m fairly certain I have no paid time off for it. The Teenager and I have major bills do this week, and they scare me, but I have (and she has) placed every spare penny we have into paying them. And they will be paid.
So, before I back up, and explain exactly what happened since I closed my computer yesterday afternoon, let me say that my plan has been to take better care of myself. To stop pushing myself to keep up with the people who don’t have the same issues that I have. To ask for help. To be honest– not only with others, but with myself.
I have planned to organize regular long weekends every three-to-four months to give my body time to recuperate from the stresses of being on my feet folding clothes all day, and to give myself time to finish larger projects for Parisian Phoenix Publishing. That hasn’t happened, in part because I’ve spent so much time sorting myself out with medical appointments, and also because November through February incorporates a lot of paid holiday time.
I closed my computer yesterday afternoon and The Teenager asked if I wanted to take the dog for a walk.
Now, let’s think about the conditions yesterday:
It was a beautiful pre-Spring day and the sun made everything alive.
I woke by alarm at 6 a.m. to meet Southern Candy at the diner, where I ate salty food and drank three cups of coffee so my blood pressure was creeping up.
I went to the orthopedist, but was unable to get an appointment with the hand rehab people.
I was going to the chiropractor in about an hour, for the appointment last week that I had to reschedule because of my fall.
I have not gone to the gym in a week because of the fall.
My legs are covered in painful bruises.
I was a little hungry.
I had taken Baclofen* in the morning, but not since.
Interesting side note: CVS ordered my baclofen refill last week, as they did not have it in stock, and I haven’t heard from them since.
I felt good. Nothing hurt. I hadn’t noticed any balance issues. So, although I felt a little wiped out, a short walk sounded good.
The Teenager suited up the dog and put her cat in the cat-backpack and we headed up the street. We made it halfway up the block, cat screaming in fear, when the dog noticed other dogs and got nervous. And I had what The Teenager called “a three-point fall.” I immediately assumed it was a basketball reference but she explained. I stumbled, froze in the air for a second, and then fall. I believe the fall at work was a three-point fall as well. That frozen time she witnessed was me actually making a decision what to do next. That is the second where I have to decide whether to fight the fall and try to regain my balance or use that second to frame the fall and try to control the impact.
In this case, I opted to throw the fall to the left to protect my already injured right hand.
The sidewalk and the meat of my palm met as I aimed for the grass, now a barely visible scrape. The Teenager declared we would turn around. I told her I could turn around and she could keep going, but she promptly declared this was a less-than-ideal experience for everybody.
Now, at this point, I have a new short-term disability claim open with Matrix, waiting to hear when and how often the hand rehab people want to see me. With past experience, I’m fairly certain it will be once a week. But, before committing to returning to work, I would prefer to talk to them and was hoping they would call back and see me today, and then, if necessary, I could email or hand-carry paperwork to my PCP to decide whether we would pursue the new STD claim for my hand or amend my intermittent leave parameters that cover my cerebral palsy.
My claims examiner is confused, and since I have not received all the information I need to make a decision, my answers are rather wishy-washy.
Also, the weather is calling for snow. And I have this nightmare of me leaving my house in a snowstorm when I already have mobility and hand issues.
I head to my beloved chiropractor, ready for her insight and her physical therapy knowledge. Meanwhile, my neurologist/physiatrist who I had had a brief texting conversation earlier in the day, texted and asked if anything else could be happening in my body to cause these issues. I’m typing the list of answers: lack of chiropractic care, lack of gym, lack of Baclofen, bruises on my legs, high blood pressure. I am scheduled to see her in early April.
And meanwhile– we still don’t have an answer for why my quads were burning a couple weeks ago and why my “normal” issues in my hip joints seem to be moving into my sacrum.
So when Nicole the Chiropractor gets her hands on me she declares that my hips and my sacrum are all locked up and my lower body is stiff. She gets everything moving and pushes everything around. And I stand up feeling like a jelly fish, so loose it takes me a while to remember how to walk.
I haven’t heard from the hand rehab people. The neurologist has probably finished her day. My right side is starting to ache a bit. I drive The Teenager to the post office and we stand in line behind a Karen who criticizes every customer in front of her for not using the post office correctly, gets to the counter, and very promptly gives my favorite postal clerk a hard time when she discovers that Priority Mail box she has packed her materials in is a Priority Mail box and will cost $17.10 to mail. Even before she hears this news, she badgers the postal clerk about how much it will be, and he’s confused because it’s a medium flat rate box so it’s $17.10. And she then snapped that she had to text the person receiving the package because that person will have to pay her back. The postal clerk suggests maybe she buy a different box from the postal supplies station in the lobby and then he could mail it for $10. But she grumpily agrees to pay the flat box rate.
We return from the post office– having mailed cookies to a friend of The Teenager who has joined the service– and I head into the house and realize I left my glasses in the car as my prescription sunglasses are on my face. I head back out to the garage and walk down the narrow cement steps to the car bay. Half way down, my ankle gives out, twists underneath me, and I somehow manage to lower myself to the ground without falling down the stairs.
I pick myself up. Everything feels solid. I text the neurologist. I return to the house. The Teenager expresses concern as I took too long to walk to the garage and back. I explain what happened.
She orders me out of the kitchen and she says she is going to make dinner and I am going to sit. I use the time to email my supervisors and call out for today, because I think it would be best if my body had some rest. I email my claim examiner and tell her to cancel my hand-related claim, because this whole incident is definitely something we have to deal with as a cerebral palsy issue. And I tell her if I need to contact my primary care doctor and have my intermittent leave parameters amended I will.
I ate a pile of peppermint kisses, a moon pie, and a rice krispie treat after dinner and washed it down with Diet Coke. Despite that, my weight is down more than two pounds this morning and my blood pressure is fine. My lower back and right side of my lower body hurts, but I’m hoping my morning dose of Baclofen will reduce the stress on my joints. My arm still hurts from my Tdap booster.
I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.
Meanwhile, forgive the cornucopia of prepositions in that title.
And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.
The disability/cerebral palsy/dog stuff
As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.
I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.
I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)
Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.
But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.
My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.
And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”
The Stitch Fix stuff
I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.
Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.
Or I’m guessing will lead to termination.
I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.
So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.
I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.
I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?
The fun Stitch Fix (fashion) stuff
There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…
And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.
I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.
The boring stuff
Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.
So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.
Angel Ackerman 