Last night, after the representative from Susquehanna Service Dogs left, The Teenager and I went to Taco Bell because it was late and I was famished. Despite eating my meal and half of the teenagers– somehow I woke this morning extremely lightheaded and with a blood pressure of 110/60. The issue did not resolve until 5 hours later.
When we settled into the house last night, I noticed a wrapper on the floor.
“Hey, when did you get Nutter Butters?” I asked the Teenager.
Apparently, the dog had stolen them and eaten most of the pack. The dog just looked at us guiltily and wagged her tail.
And we had bought her a cheesy roll at Taco Bell.
I told some leads and supervisors about my service dog approval at work today and then when those closest to me had heard the news from me, I sent an official email.
It’s not my most eloquent work, because I’m utterly exhausted. It says, “I have been placed on the list for a service dog. It’s about a three year wait because they raise a puppy with my input for me. I don’t know what the next three years will bring— but regardless of whether I still work here or move on, I would like to initiate a conversation about whether a service dog would be considered a reasonable accommodation. Legally, it is considered reasonable if it helps me with my disability while at work, does not put any person or company interest in danger, and if the dog would be safe and not exposed to danger for its own welfare. The dog could help prevent falls and help me get clothes and other items out of the cart and off the floor.
We have a couple years to pursue this conversation and I have 2-3 years to raise the $5,000 to pay for the dog. So to have that investment pay off, I want to bring the dog to work.Also I am working with Susquehanna Service Dogs which is a very reputable and supportive program.”
One of the other people at work asked me what I would name the dog. I pointed out that I think financial donors get to name the puppies and so once I met my puppy and learned its name I would probably develop a nickname for it. He wants to know the potential nicknames.
I haven’t named a dog since the late 1970s. Preschooler me named our Old English sheep dog mutt “Cheezie” because she liked cheese.
And a local professional offered me a discount on his services so that I could use the extra funds to put aside for my service dog. That was super kind, and just goes to show that when you walk in the world with kindness and try to support those who support your community, that the karma comes back.
I came home from work and The Teenager had planted my flower from Southern Candy, exactly as I envisioned it.
I did some work for the publishing company, drank a cup of coffee and headed to the gym since I missed Wednesday having fallen asleep at 6 p.m. Andrew promised to go easy on me, because lately my blood pressure is high, my heart rate is low, and my blood oxygen keeps dipping to 94%.
I had a great workout, and even made it home without a fall or incident.
I shared my basic granola formula with Andrew, made salmon and couscous for dinner, and finished the gummy bears with The Teenager.
Being that it’s Friday night, I’m up a little late as The Teenager and I were talking about service dog gear, Gunnar kennels, and ADA service dog rule cards.
Then I came up to take my shower and Opie shot out of my room and Louise followed him. Louise is the tripod foster from Feline Urban Rescue and Rehab scheduled for adoption June 10. She hasn’t voluntarily left my room since I worked second shift. When the house was quiet at 1 a.m. she would normally follow me to the bathroom.
Despite waking yesterday 15 minutes before my alarm and falling asleep face down in my pillow as I tried to lift my phone off my desk to start my day, yesterday started as a decent day. It was slow, and everything seemed to annoy me. My body hurt, my heart rate and blood pressure seemed off, but my work metrics were good. Too good.
I was very thirsty all day, and ended up stepping away from my station three times during the day to use the restroom– which is not me– but my current symptoms include not being able to tell how urgent the signal to urinate is so waiting too long or not responding immediately might result in an uncomfortable outcome.
I returned to eating “real food” after a weekend of salty and sweet treats for my birthday, which made my body feel generally bloated and sluggish but had stabilized some of my postural issues.
And my hand, the one where the medical professional had done an exploratory IV last week, turned multiple colors that didn’t exist there over the weekend.
The coffee shop I had selected to meet Natalie Lowell of Exquisite Page turned out to be closed on Monday, as was my second choice, so she suggested the old familiar Terra Cafe. I had a lovely London Fog and the discussion flowed easily.
I learned along the way to the cafe that the Meet-and-Greet scheduled for FURR Louise for June 10 was actually a sight-unseen adoption, which makes me nervous with special needs cats and this one has been in my bedroom for two years and sleeping in my arms at night for at least six months.
I ate a small snack. From there I went to the gym, where Andrew– despite our schedules keeping us apart for a week– put me through a brutal workout, which really wasn’t that brutal but it felt brutal, reinforcing the idea that maybe my recent health problems are just a ramification of being 25 pounds overweight and out-of-shape.
And then I had a good old-fashioned fall on the way home. The kind that scraped my hands and bruised my thigh and chewed up the flesh of my shoulder. After a conversation with my Apple Watch, (“Looks like you had a hard fall.” “I fell, but I’m okay.”) I headed home, my pride more battered than anything else.
The Teenager made an enjoyable dinner and I had a Hostess cupcake. I could have finished the strawberry cream puffs from Sheetz. Those were surprisingly amazing.
By the time I took my shower, my wounds stung and my left hand was trembling. My heart rate and heart rate variability were low, my blood oxygen was 97% and my blood pressure was high. I decided to write a small blog entry, but when I opened my computer I saw a message from Gayle.
The content led me to believe that I sent her the wrong edited file of Larry Sceurman’s Coffee in the Morning, and so I opted to go to bed. When I woke this morning, I had received the truest of all motivational messages from Gayle.
DO NOT SECOND GUESS YOURSELF
So when I get home from work today, I’ll have to check the file. When I have more wits about me.
While normally my self-confidence wavers, Gayle’s right. I do not second guess myself. I move forward often boldly in a direction without worrying about the consequences.
I’m not sure I feel better today. That remains to be seen. I had strange dreams last night. A toilet falling over while I was using it. Having unexpected and messy female troubles. And my favorite– sitting next to my father after dinner at the table as we always did. He would be smoking his cigarettes and perhaps having a cup of coffee. The Teenager and my stepmom were sharing cheesecake as if nothing were wrong, and not offering me any. And then I realized that my father is dead, and that The Teenager and my stepmom didn’t see him. He was there just for me.
And once I realized that, he was gone, and all I had left in me was to weep.
I had fallen alseep last night with tears in my eyes. And I woke with Louise in my arms and tears in my eyes again, but this time, with the strength to face a new day.
Today I slept in until nearly 6 a.m., waking only when I heard The Teenager rise and leave the house for her dog walk client. I laid in bed until almost 6:20. To me, that is the ultimate laziness as I usually begin work at 6:30 a.m.
It’s been another delightful birthday day of celebration. I started the morning with breakfast with some of my Stitch Fix crew, with Southern Candy arriving at Big Papa’s early to bestow the table with some decorations.
There were cards and laughter and Southern Candy ordered her regular biscuits and gravy only to discover the biscuits were not biscuits but English muffins. So much commotion ensued of the giggling and carrying on sort, making jokes about what to call biscuits and gravy that does not contain biscuits, because English muffins with gravy sounds gross.
We had a discussion about making our own biscuits and bringing them and comparing making biscuits with shortening versus lard.
I ordered a spinach, green pepper and feta omelet hoping that the vegetables would help heal the damage done by my weekend of caffeine, sugar, fat and grease.
That might be too much to hope for as my blood pressure was 116/96.
The next item on the agenda was to take FURR foster tripod Louise to a meet-and-greet event at the Phillipsburg Petco, where she behaved like a trooper (even if she did spill her litter box so she could hide under it).
I was able to finish the last set of changes to Coffee in the Morning by Larry Sceurman on the laptop while chatting with another FURR volunteer to happens to be the only person I know eagerly and reliably waiting for my next novel.
I came home, cleaned up my room and finished Netflix’s Queen Charlotte, which, as all the Bridgerton tales do, has quite the sentimentality regarding love and relationships.
I also ate a rather large “elephant ear” with The Teenager that Little Dog’s mom had procured.
I’m off to check my blood pressure, take my evening meds, pack a lunch, and decide on dinner. But I just may allow myself a birthday beverage– as my birthday weekend officially launched with a gin gimlet with photography Joan and her other half, Randy.
Yesterday was my official birthday and the festivities exhausted me so heartily that I have waited until this morning to write about it. Since the medical establishment has not discovered rhyme or reason about my recent health issues, I made the decision earlier this weekend to eat what I felt like consuming, have a good time and return to my disciplined habits tomorrow.
Currently, I am sipping my peppermint coffee, while combating a vague lightheadedness and lower blood pressure and taking my beta blocker. I miss the robustness of my strong Supercoffee dark roast and had I known my blood pressure was low, I would have made some, but I feared it was high from my diet of Sheetz spicy chicken sandwich, jalapeno poppers and a premium sampler of salty fried snacks, pastries upon pastries, and sugary candy galore… because it was my birthday.
Little Dog stayed with us for a few days and her mother returned for her yesterday, bringing with her the largest pastry I have ever seen which I later discovered was an elephant ear and what I am eating now, which appears to be some sort of blueberry scone with a touch of lemon if I am not mistaken. But someone must tell whatever bakery Jan is visiting that the term “elephant ear” is not meant to be life size.
The Teenager wanted so terribly to take me for a nice meal of my choice, but I told her– you know what I want? Some decadent road trip snacks to eat on our way to Pocono Raceway for the Sports Car Club of America Road Racing Northern New Jersey Region Joe DeLuca and Linda Gronlund Freedom Major. (scca.com)
One of my high school peers works as an official at the track, so he invited the Teenager and I to come sit in the pits and watch as many classes as we wished and potentially stay for the cookout at the end of the day.
But I get ahead of myself.
The Writing Stuff
Little Dog and I slept in until a delightful 5:30 a.m. yesterday and then I copyedited the text for the next title in production for Parisian Phoenix Publishing. (We have 11 titles out now, one a tad delayed but due out as soon as we make the final tweaks, and this new one is #13, which since it is a tarot journal seems apropos.) Anyone who wishes to make my birthday even more exciting should consider buying one or several of our books. Here is the whole list on Amazon, including one book that’s not ours but shares a title and confuses the algorithm.
I finished the text of the tarot book, sent it to Gayle to mock up some design while we wait for the author to approve the text, and then headed to a meeting at Panera Bread with Larry Sceurman to retrieve his final proof on Coffee in the Morning. As it was my birthday, Panera gave me a free pastry after I already ordered my asiago bagel with chive cream cheese and Larry paid for my refreshments due to my day of birth.
I am happy to report that the changes to Coffee in the Morning are minor, and very good catches on the part of Larry and his wife, Barbara. The team spirit at Parisian Phoenix creates an atmosphere where we all really are putting our best foot forward and making sure we all look good in the end.
From there Larry and I attended the Greater Lehigh Valley Writers Group to surprise Darrell Parry, who was giving the morning presentation and afternoon workshop on poetry. I may have left with an invitation to be the October speaker and a nomination to serve as the group’s president. More on that here.
With my commitment to attend the races, I could not stay for the afternoon workshop. I went home and collected the Teenager and we drove over to Sheetz to gather our road trip snacks, redeem birthday points for gas ($2.92 a gallon) and head to Pocono Raceway with a Spotify playlist The Teenager carefully curated.
The Racing Stuff
I have not visited Pocono Raceway in 30 years. This area used to have two major racetracks, Pocono and Nazareth, and Darrell lived about a mile from the Nazareth track. It closed shortly after we graduated college, which is also damn near 30 years ago. I am not a NASCAR or Formula One fan, but my life tends to intersect with motorsports. My dad was a diesel mechanic known to race microstock, participate in tractor pulls and ride his Harley, anything to tinker with an engine.
When the Teenager was a year old, we went to the dirt track every Friday night to watch him race and when his racetrack closed, he told me not to attend his new venue as he deemed it too dirty and not family-friendly enough for the baby. I also have vague memories of going to drag races in New Jersey during my own childhood.
Once we found Bob and Erica up at Pocono, we settled in for our first class, Ford spec. Next came I believe a GT Lite class. Then the little min-formula one type cars with the small engines. The last class we saw was the Miata spec class, with three Minis and a Chevy Aveo sharing the track with them.
I definitely enjoyed the spec classes, as the cars are so similar that the race relies more on the prowess of the driver versus the classes where the cars have so many differences. In the mixed classes, the gaps between cars are much wider and that makes the race less interesting from a spectator perspective. The slow cars tend to be less interesting to watch also as they take so long to go around the track that you almost forget they are out there.
We stopped at Wawa on the way home for water and due to sale prices I ended up with fancy Hawaiian volcanic water for the same price as Deer Park.
And the special thank you goes to Santander Bank for making me feel ancient by sending me an email to remind me that my oldest account with them dates back almost 24 years and that they wish me a happy birthday.
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.
I almost didn’t write this one. It’s been a long day, and I’m tired, and achy, and cranky. This morning started off-kilter when I couldn’t find my car keys (they were in my pants pocket in the dirty laundry basket), had left my sweatshirt in the car and it was cold, and I should have had more breakfast.
My Apple Watch is doing its job– and it does seem to track significant leaps in heart beat when I rise, 30-35 beats per minute, but I don’t know how long that has to last to qualify as POTS. (And I have a note to call and schedule the tilt table test Tuesday afternoon.) Right now, I am just collecting data. And those numbers tell me when to give my body a minute to right itself. Regardless of what my diagnosis is.
When I got to work, a colleague told me she called the cat rescue and the person she spoke with didn’t know anyone with my name. That was certainly odd.
I started out strong, as I often do in the morning, preparing 8-9 fixes every half hour. But by first break my hip started acting up, which made the day harder and I fell behind. By ONE fix. But of course break is 10 minutes, so then it was four fixes. But by lunch I was only half a fix behind.
I didn’t have many calories with lunch. The portion of hearty vegan barley soup I had left was smaller than I expected. But by second break I was officially at the company numbers, which meant I’d be a little behind when I returned. But I had work that was easier for me, so I was confident that despite my inability to bend, I’d get the job done.
But then I saw a notification from my medical portal. My CT results were in.
Normal. Normal. Normal. That’s what I saw as I skimmed the report. Normal. Normal. Then… “suspected 2 mm laterally directed left paraophthalmic ICA aneurysm. Recommended follow-up with neurovascular service.”I freaked out internally. Started shaking a bit. I was prepared for a lot of things but an aneurysm never entered my mind. Pun intended. Note: I was reading this at work, and I only get ten minute breaks so I wasn’t reading for comprehension. Over the course of the afternoon, I realized this was small. And I calmed down fairly quickly. So this was about surprise. And I told my friends, “Well, now we wait. The faster I get a phone call from the doctor, the worse the news is, right?”
The nerves gave me the energy to finish at my target number to make my employer happy.
I then headed to physical therapy, where I was honest with my physical therapist about everything. And before we got started he fixed my back and hip. Those people are incredible. I noticed while doing my exercises– the clamshells were much harder and the stability exercises… I was falling backwards instead of forward. When I stand on one leg I normally fall forward. I almost fell right off the machine, and backward, which would have been terrible as the physical therapist was with another patient and no one had a gait belt on me.
But remember what I said about lunch? I was starving. And I seemed to be recreating the same scenario as some of my other falls– busy day, discomfort, hunger… if I went home and ate a big meal (which diverts blood into digestion), would I fall?
I went home and The Teenager promised me a big dinner of chicken parm, cheesy garlic bread and brussel sprouts. I warned her that large meals might be part of the fall formula, so she followed me to my room after we ate. She stated that she didn’t like the way I was wobbling.
Good news is I haven’t had any low blood pressure since I ate that entire Little Caesars pizza Saturday night. Bad news is, the binge made me regain the five pounds I lost.
But at least in my dreams last night I had a good time– as I was apparently dating a man with dark hair and a Tesla. I very much enjoyed his company, and he appeared to enjoy mine. This wasn’t our first date, but it was definitely a new relationship.
If you visited the Parisian Phoenix blog yesterday, you know I had a busy day and really my weekend has been a buzz of activity. The Teenager cleaned the house in hoping not to kill her cat-allergic Uncle Tom when he came to visit today and help her with her many projects she has planned: a catio, fixing the door, and improving some other animal conditions. Plus, he wanted to meet the ratty rats as his wife had rats while they lived in their apartment.
This morning, I was lying in bed, thinking more and more about the possibility of POTS. It makes sense, but at this point I don’t want to get my hopes up on a diagnosis. I’ve been tracking my eating habits, my symptoms, my heart rate, my sleep, my blood pressure and it’s exhausting.
And I’m on a beta blocker now, so what if the doctors are struggling to diagnose me because they don’t have conclusive data.
I wrote a long email to two of my friends and bared my soul amount my medical concerns and how I felt about this current journey I am on.
And then I found myself on Apple.com, looking at the Apple Watch I picked out for myself to buy as soon as I paid off the computer on which I am typing. And then the Teenager’s car insurance doubled. And I ended up in the hospital. And we had the plumber visit. And a fuel oil delivery. And in the last six weeks every dime of my savings has left.
But I need answers.
And with the new Apple Card, the Apple Watch is only $17/month for a series eight.
I texted Southern Candy. “I’m about to do something impulsive and I need to talk through it.”
“I think it would be a good investment if it could help you with all of this,” she said.
So I ordered one.
And said I would pick it up at my local Apple Store.
And when I told Gayle she agreed.
I walked down to Big Papas to meet the girls for breakfast– and this time the girls included one of the guys. It was a group of us from the Bizzy Hizzy and we had a great time laughing and eating the entire place including the biggest pancakes I ever saw in my life.
In the afternoon, the teen and I embarked on our adventures. We put gas in the car at the Penn Jersey Mart which finally has gas again after months of needing new tanks. They have an amazing selection of candy, so of course the Teenager went in and bought candy and sodas, because after those massive pancakes I obviously needed more sugar.
We got stuck in a laborious traffic jam on the highway, so we ate candy and chatted. We picked up my watch and headed to Grocery Outlet because The Teen has restricted grocery budget for this week and I got her so much food last time for $80 she wanted me in charge again. This time I came in at $41. And she added on a handful of items (a cake, a meat and cheese platter, and some meat sticks from Tillamook) that added on another $15.
She’s delighted with the results. Especially since she’s never seen a Pepperidge Farm cake and they had several. And I hate to tell her for the 1800th time that her great-grandmother used to always keep one in the freezer and she never quite managed to thaw it all the way, so frozen cake was common.
So we took it home, invited her father and had partially frozen cake in honor of his grandmother.
“Frozen cake is kind of good,” the Teenager decided.
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.
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.
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.
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.
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!”
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.
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.”
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.
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.
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.