Tomorrow is my birthday. I ended up taking voluntary time off from my day job to do some work for Parisian Phoenix Publishing and clean up the house. Neither of those activities lived up to my goals, but it’s been a very nice day.
I had more minor administrative stuff to do than I anticipated, but I did clean off the kitchen counters and use old glass beverage jars to sort and store my k-cups.
I arranged several meetings with my authors: to meet Joe Swarctz of Echo City Capers today to give him the latest shipment of Sometimes I Get… and tomorrow to see Larry Sceurman to get his copy of the final proof for Coffee in the Morning. Andrew had to cancel the gym today, so that made me a little sad, but gave me extra time not to rush around before a birthday dinner with the talented Joan Zachary.
Speaking of talent and birthdays, Gayle made me a font of my handwriting. And The Teenager already gave me my birthday present, a new pair of sewing scissors. Her dog ate the handles off my old pair. I haven’t sewn in a decade, but she has memories of me protecting those sewing scissors.
And apparently, she believes she ruined the blades long before the dog ate them. So her thoughtfulness and presentation and honestly made me tear up.
Around 10, I headed down to what is not my official spot– Big Papa’s Breakfast Bistro, on Northampton Street in Easton’s West Ward. I asked if I could sit in a corner, have a cup of coffee and work until my meeting with Joe over lunch at 11. I was welcomed. I also gave the restaurant my business card, explained who the various groups were that they would see me with, and that eventually I’d like to have events there. It was perfect. Exactly what I needed to finish some work.
He’s personable and easy on the eyes, but he certainly had his decisions made without listening to what I had to say. And when I got home and read his notes… I don’t know if I can say I felt betrayed or even insulted. I knew what was happening while I was there. It was a gut reaction and I felt myself shutting down.
He said I was fine, my heart monitor was fine, and my EKG was fine, and then he asked if I had any more episodes. I asked for clarification on what he meant by episode and explained that as of last week my heart rate had calmed by about 20 beats per minute. And that I had two more unexplained episodes of lightheadedness that almost ended in falls.
I pointed out that I wrote everything down if he had any questions about my symptoms and also said that I bought an Apple Watch.
He didn’t seem interested in any of it, only in my episode of a-fib. And then he noticed that my primary care doctor had ordered a tilt table test. “That’s odd,” he said, looking at my record.
“He wants to rule out POTS,” I said.
He gave a little nose grunt of disapproval.
“Do you have any questions?” he asked.
Not that I was willing to ask. Based on how he seemed to be judging my primary care physician there was no way in hell I was asking questions of this man.
When I read his summary of our visit when I looked at my online chart, he blatantly called out my primary care physician for considering POTS and said my symptoms were not consistent with that, and blamed my falls on my poor balance.
I might have cerebral palsy, but I don’t have “poor” balance. It’s not “good” but it’s not “poor” and I have the physical therapy records to prove it. Actually, I was released from physical therapy today. When these episodes happen, I can feel that the problem is not my legs. So my heart looks fine, and I’m very happy about that, but I’m angry that he just attributed the whole stint in the hospital as caused by my poor balance. The night of the accident I had been showing off to my trainer Andrew how well I could stand on one leg.
When I read his notes I got even more upset, because he’s blaming my orthostatic hypotension on dehydration and makes it sound as if I don’t drink water. I said symptoms are worse on the weekend, probably because I don’t drink as much water. I drink about 60 ounces at work alone, which means on a typical weekday I drink about 80 hours of water, maybe 8 ounces of another beverage and 12 ounces of coffee. Subtract about 60 ounces water off that on Saturday and Sunday.
And he also says I drink more now, especially when my blood pressure is low, and what I said was that I keep an electrolyte powder by my bed and mix a portion of that to drink in the morning if my blood pressure drops, as suggested by my primary care physician.
So I looked at my ekg– my heart shows a normal sinus rhythm and arrhythmia.
I emailed my primary care doctor and said the cardiologist is not a match and after I get the next couple weeks of appointments done, I want to follow up with him (my PCP) to talk about my medications. And I’m also thinking of asking about a registered dietician and some nutritional resources.
Today my heart rate is up. My blood pressure is low. I have headaches and everything in my body hurts.
I’ve been making friends in the writing community for decades, and collecting artists along the way. One of those writing friends is William D. Prystauk– from a chance meeting at a literary event for Kaylie Jones hosted by Laurie Lowenstein– which had to be 15 years ago.
Bill and I would meet for coffee at Lafayette College’s Skillman Library and talk writing for hours. We’ve even seen Gorbachev together. And he’s nailed my kid in the face with a frisbee, probably one of the first signs she had ADHD. She couldn’t stop talking long enough to notice the frisbee sailing toward her.
Bill is also the author of the Kink Noir series: Bloodletting, Punishment, Debauchery and Bondage. I asked him if he could bring Parisian Phoenix Publishingsome inventory for the upcoming April 29 celebration of National Independent Bookstore Day we are holding in collaboration with Easton’s Book and Puppet.
While Bill is not officially one of the Parisian Phoenix authors, he did appear in our 2022 anthology, Not an Able–Bodied White Man with Money. As publisher at Parisian Phoenix, I try to promote the hard work of authors that appear in our books, even if those other works do not appear in our stable. That’s one of the benefits of working with a tiny craft press.
Bill and I went to a new business in my neighborhood, Plants & Coffee. They literally opened last week. Bill and I are whores for good conversation, environment and taste-bud experiences. He tried their mango spritzer, and I went for the lavender rose basil spritzer. I love lavender. I love rose. And the mix… greenery surrounding us, the calming lavender and the exoticism of the rose, which reminds me of the Arab sections of Paris…
The shop itself is in a building where I once toured an apartment that could have come straight out of a 1970s porn set. The commercial space was most recently some sort of discount produce stand, and if I remember correctly had some makeshift arcade for a while, and prior to that what Bill referred to as the best Mexican food he’d ever had in this life at a place called “Garibaldi’s.” I remember it, but I never ate there.
So imagine my surprise when I walk into this gleaming space of black, cream and greenery. Small touches like books, retail items and couches providing so much softness and homey feel.
I will be back.
(Meanwhile The Teenager is at home getting her newly adopted rats situated.) They are fitting right in to the menagerie. She adopted them from the Harrisburg Humane Society.
And we also went for sushi at Jasmine, which I often think is Bill’s real reason for coming to see me.
Yesterday was Monday and I went for my second full physical therapy session. I admitted to him that the weekend got so crazy that time got away from me and I didn’t do as many stretches as the paper told me to. My therapist told me that was okay, as long as I was trying to walk as we practiced on the anti-gravity treadmill and kept stretching my hips to fight the internal rotation.
And I had another great session on the treadmill.
I also did extensive editing before and after physical therapy, to the point where I think I will have Larry Sceurman’s short stories ready for his approval tomorrow and I don’t see any reason why we wouldn’t send them to Gayle for design by early early April.
Later in the day, I went to the gym where we did primarily back and shoulders but also hip and core. That right hip, in a very specific location, was very unhappy with me. It’s something I’m going to have to look into with my physical therapist and my chiropractor and maybe my neurologist. My fitness coach Andrew wondered if it might be my IT band.
I noticed my fingers have not been tingling as they had.
I texted Gayle last night–if I made it up the stairs and to bed I would have earned my “fourteen days without a fall” graphic.
It arrived today.
I went to bed at 8 p.m. last night but couldn’t fall asleep until 9. I woke up around 2 a.m. and cuddled Louise for a while. I think she woke me, and I can’t help but wonder if she senses something about my heart rhythm. I heard my neighbor start his car at 5:45 and forced myself out of bed as my alarm was due to go off at 6.
I was exhausted. My blood pressure was perfect– 115/76– which made me think I should skip the morning coffee. But I needed to drive about 20 miles in morning highway traffic. I needed my wits about me.
A handful of peanuts, my SSRI, a beta blocker and a muscle relaxer, and a cup of coffee and I was good to go.
Hand therapy is always fascinating. Today I did the exercises I did last time (read about those here) and squeezed some putty. My therapist John took some measurements of my finger, and other than the swelling, there is only one angle that still has limited motion. So he gave me a piece of elastic and a safety pin to try and stretch it.
After hand therapy I called Nan, as I had promised to take her to the bank and to CVS. I had run out of Zyrtec the day before, and CVS had texted me and said my SSRI refill was ready. Still no word on my baclofen, the muscle relaxer prescribed by my neurologist. She had called me in late February (mere days before my first fall) and said she was sending in a prescription with six months of refills. The next day, CVS texted that they had received the prescription but the medicine was out of stock. I never heard from them again. I am almost out, but haven’t been taking it because they didn’t give it to me in the hospital.
I stopped along the way at Panera to use the bathroom and grab a cookie for breakfast. Panera makes an amazing oatmeal cookie with dried blueberries and raisins. When you consider the sodium, calories, sugar and protein, it’s one of the healthier choices. And it’s delicious. So I got one for me and for Nan.
I almost got back on the road forgetting my cookies, because I ran into a fellow library board member who called to me from across the store.
Once I picked Nan up we had a great time visiting her usual teller at the bank, whom we hadn’t seen in a while; going to the Dollar Tree (or as we like to say now the $1.25 cent store) for Easter decorations and cookies, where we ran into someone who lives in Nan’s old apartment building; and the most magic place of all– CVS.
We went to the pharmacy first. My SSRI was free, and I asked about my baclofen. They said my doctor canceled the order. I showed them the text, and I was told that was very weird and that I should call my doctor. I wonder if they asked her for a refill on the old prescription at the same time she sent a script for the new one, so she said no to their request, and they canceled both.
Nancy needed ibuprofen, a hair barrette and some Lysol wipes. I needed allergy medicine.
I had a coupon for $10 off 90 count Zyrtec or the house brand was on sale buy 1 get 1 50% off, with a $4 off coupon. I got 2-120 bottles for $40-something, versus the $60 the name brand would have cost for 90.
CVS brand pain relief was on sale, the big bottle was $19.49 and the smaller bottle was $14.49, but we had a coupon for $4 or $5 off $15 purchase, AND the smaller bottle had an expiration date of this summer versus late next spring like the bigger bottle. I had a 40% off coupon. So I thought that could cover the barrettes. The Lysol wipes were also on sale and we got the 35-count, and we had a 40-cent manufacturer coupon. (All the coupons came from the CVS app.) Nan’s total started around $32 and she ended up paying $19. In other words, she got everything for the original cost of the ibuprofen.
She loves accompanying me to CVS.
I brought Nan home, and when I got to my house I discovered that MY FIRST FIX ARRIVED FROM THE BIZZY HIZZY! I have been waiting to get a fix from Stitch Fix for 12 years! Joan opened it with me via Zoom.
I then ate a massive bowl of falafel and vegetables. I sent out a newsletter on Substack. Read that here. And attended a library board meeting tonight.
And don’t forget: Darrell Parry is hosting (and served as judge) for the Jean Corrie Poetry Reading & Ice Cream Social at Lafayette College Thursday. See the Substack or Facebook for details.
My body seems to have finally adjusted to my beta blockers. My blood pressure has stabilized around 110/70 for about a week now. If I have coffee it goes up to 120/80. I lived on caffeine and sugar yesterday to keep my energy up at The Greater Lehigh Valley Writers Group The Write Stuff Conference, which you can read about here.
Today, I have to deliver cats to a Feline Urban Rescue and Rehab “Meet the Cats” event at the Phllipsburg Petco. One of the organizers has a soft spot for my sweet Minerva and all of my fosters are long-termers at this point and need homes. But this means I need to sneak up on Minerva and Louise which is practically impossible.
But Sassy, my friend who recently left Stitch Fix to return to the medical field, texted me yesterday on her birthday to invite me to breakfast this morning. And she said she would call Southern Candy to join us. I was charged with selected a place.
Well, I said, if you don’t mind coming out my way, there’s a place I’ve wanted to try, Big Papa’s Restaurant and Catering in Easton. And so we did.
I ordered the State Theatre breakfast– scrambled eggs, cherry tomatoes, these adoarble square breakfast potatoes, and spinach. They didn’t have avocado. It was listed as also having avocado, but they offered me extra spinach. Sassy ordered The Big Papa Feast with a side of toast. Southern Candy had biscuits and gravy.
Sassy’s breakfast came with French toast and it was a full order of French Toast. She ordered bacon for her meat and it was a massive pile.
And the amount of food they served Southern Candy looked like two breakfasts to me.
The staff was delightful. The decor lovely. The colors and the music a little quirky and upbeat.
And the biscuits and gravy… their effort in making them homemade showed, but Candy said while delicious, their spices in the gravy wasn’t southern. So we’re going back in a few weeks so the chef can make them her way.
And we ended up being silly and doing a fashion show.
I had my full activity session at Physical Therapy today. I did my stretches, got strapped into the gait belt, and did a series of single leg stability exercises under the supervision of the computer’s measurements.
Then we headed to the zero-G treadmill. I was advised to make my feet and pants have contrast. So, I wore my bright green shoes, my purple polka-dot knee socks, and my black-and-white cat leggings from Purr Haus in Emmaus.
He chuckled while remarking that I certainly followed directions.
The Zero-G treadmill required some rubbery pants surrounded by what resembles a surgical/Elizabethan collar (cone of shame) that get zipped into a treadmill pretty much encased in plastic. When it filled with air, it reduced my body weight. I was able to walk the treadmill at 50% of my body weight.
The reason for contrast is that the treadmill offers an image of your feet. Three views on a monitor: front, side and back. So I was able to watch my feet, move my legs, angle my feet and reinforce the improved gait pattern by watching it as I walked.
I was only on the treadmill for 15 minutes, but it that time I discovered what part of my foot I normally don’t use. It was exhausting– and exhilarating– and so fun to show the Teenager the results when I got home.
But before I got home though I had an appointment to have my stitches out and on my goodness did I have the most personable and confident resident yet. I only had three stitches but that last one gave her a terrible time. It took her thirty minutes to get all of them out. I had her laughing and she was very patient and determined, and so afraid she was going to hurt me because “if it were me I’d be jumping out of my seat!”
She said I was the best patient ever, that I sat so still and I must have a high pain tolerance.
Between the two appointments, I stopped at Dunkin for a decaf coffee and saw they had a new “egg taco.” I read the nutritional info and with 500 mg of sodium, 180 calories and 8 grams protein, it had less salt and more protein and less calories than the avocado toast. I am so sad they no longer have the hummus.
When I got home, I did some little things and ate the homemade chicken and dumplings my Pennsylvania Dutch mother-in-law is known to deliver when people in the family are sick. And then I tried to take a nap, but a little birdie was guarding me.
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.
These are some of the people I spend my days with at my day job. I know their struggles. I see their growth. I feel their stagnancy when they experience it. And they share mine.
Our dear colleague Sassy has procured a new job– one in her field where she will help so many people, just like when she scraped me off the sidewalk earlier this month and stood by another work-friend’s side when she had a very severe heart attack. It’s no surprise that she’s returning to the medical profession where she can use her eagle eye, her sassy but loving mouth, and her wisdom to change people’s lives for the better.
As she changed ours.
These photos look a lot like our lunch table at work. The atmosphere was jovial and a little obnoxious, a lot like our lunch table at work.
We talk a lot about getting together outside of work for bowling or pizza or axe throwing or roller skating. But life happens and everyone has something going on so we don’t force the issue. But Sassy is leaving, and we talk a lot about tequila so this time the plans solidified.
And they involved tequila, in fancy margaritas– my first was cucumber– and Mexican food at a place that used to be a Pizza Hut decades ago (and I remember it as such) called My Tequila House. The food was amazing. The drink menu diverse. And next time, when I have more of a budget, we’re getting the duck carnitas tacos.
What amazes me about the event was how easily the conversation flowed, how different we all are as people but how we’ve all come together. We all worked together on second shift, “Midnight Society,” and moved together to the 4-day 10-hour shift “Sunday Cohort,” and now been relegated to Monday to Friday standard shift with those I lovingly refer to as “the day shift bitches.” These changes all happened with sixteen months or so, so at this point we’re all practically trauma-bonded, moving together through a world that keeps changing: new measurements, new overlords, soon new snacks. You get the idea.
Let your smile change the world, but don’t let the world change your smile
The youngest among us is barely legal drinking age, the older close to retirement. There’s Southern Candy, Sassy, My Faithful Reader, and some others who I might mention from time to time but who haven’t earned full pseudonyms… like the leader who’s also a very talented photographer, the young woman who encourages everyone while she herself has not only had to rebuild her own life but care for parents with serious health issues, the woman who has a sporty, young nephew and an adorable dog, and the supervisor who returned to work too early after surgery out of stubbornness and now advocates for everyone else’s recovery.
Sassy made us small gifts, gifts she made carefully with her own hands, delicate and beautiful. And meaningful. There’s a magic that occurs when people congregate, even more magic when they quietly support one another, and even more magic when something happens and they come together.
Part of that stems from corporate culture at our employer, more comes from the attitude we had on second shift. We learned to work as a team in an environment that focused on individual metrics in very simple, specific jobs. We had a chance to be different.
And even though our backgrounds range from various fields– restaurants, personal banking, medical, communications for me– that diversity strengthens our bond because we know who on the team will support us in what area when we need it. There’s a trust and a sense of integrity.
And as much as we love Sassy, I think we were celebrating our legacy as a team.
A while ago, The Teenager and I decided we wanted to try a Dairy Queen banana split. That we’d share one. And we decided tonight was the night.
We ordered one using the app, and when we arrived we were faced with two new ice cream options: the churro dipped cone and the end of the rainbow shake.
The banana split was delicious. Their strawberry topping was our favorite and it looked like they put two whole bananas in there.
But then The Teenager wanted to try the Rainbow Shake because it looked like it had the crunchies she loved from the cotton candy Blizzard.
So, she went into the Dairy Queen and ordered one. And the churro-dipped cone.
The shake was strawberry flavored and those crunchies tasted like sugary breakfast cereal.
Meanwhile, the ice cream cone tasted like the bastard child of Dairy Queen and Taco Bell, like someone had taken those cinnamon cream cheese balls they have right now and stuffed them with ice cream instead of whatever that cheesy stuff actually is.
It’s been six days since I touched base. My friend is home from the hospital and probably climbing the walls. I’ve been doing a lot of work on Parisian Phoenix stuff– getting the Substack off the ground, editing material for clients and my authors, and sending packages out.
Normally I go to the gym Monday, Wednesday and Friday but this week I haven’t felt well. Even after my chiropractor appointment on Monday, I still struggled with body pain in unusual places. My chiropractor confirmed that I was feeling more issues in my sacrum as opposed to my normal troubles in my hips. My quads bothered me for a while after that and the drop from warm weather to icy wintry mix made my knees burn. That was new. All of these sensations led to my right side feeling rubbery and unstable.
I’ve also had a lot of commitments recently and not enough down time, so that didn’t help.
Wednesday night I ended up skipping the gym because of pain and a meeting for the Lehigh Valley Book Festival that ran until 6 p.m., which meant I didn’t even get to my town until 6:30 p.m. and exercising in pain and hungry did not seem smart. You can read about my visit to Let’s Play Books on the Parisian Phoenix blog, here.
And when I got home, The Teenager had purchased cheese steaks at Joe’s Steaks in Phillipsburg. My standard order is a hot cheese steak, no onions, and an order of pizza rolls. She did not remember the pizza rolls.
I actually asked my boss to use two hours of my intermittent medical leave to come home and take a nap yesterday, because supporting my own weight and balancing was exhausting.
Best. Nap. Ever. I still feel achy today, but much better, probably because I had an appointment with my primary care physician. I thought it was for my annual physical, but apparently it was a six-month follow-up. Follow up for? Be darned if I remember. My mallet finger and the resulting leave from work because I was all out of whack?
I noticed while waiting for him that I was wearing two different shoes. They are the same shoe, but two different pairs in two different sizes. Interestingly, I put the smaller shoe on the smaller foot. Because it turns out my left foot is a size eight, but my right is 8.5.
He approved of my blood pressure numbers, didn’t say anything about the roller coaster of my weight, wondered if I had my anxiety under control, and asked about my service dog application. He thinks I have a cataract starting in my right eye, that I’m salt sensitive and that I need to take care of myself and (my words not his) calm the fuck down. Oh– and lay off the caffeinated beverages.
And as soon as I left the parking lot, I went to the Dunkin a block away and bought the new chocolate caramel cold brew. Even though I had chocolate in my coffee. But I figured this would be a candy bar, and I was right. My lunch consisted of cold brew, pistachios, apples and a KIND breakfast bar.
I returned to work, finished lunch with my friends and went out to the warehouse floor where I might have hit way over 100% thanks to the buzz from the coffee. I took the early release/voluntary time off and came home to packages!
We got two Freestyle packages from Stitch Fix, one from the Dizzy (in Dallas) and the Phizzy (in Phoenix) which The Teenager recorded me opening.
Our Little Dog Neighbor Sobaka is staying with us this week. So The Teenager and I took both dogs for a walk.
Angel Ackerman 