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.”
We did.
“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.
Me, in a chair identical to the one the dog ate, waiting at the hospital
I feel like garbage: exhausted, headachy, ears ringing, like I might come down with some horrible flu at any moment. I just got home from my CT scans, one with contrast, to double check that there is nothing interfering with blood flow between my brain and my heart. And upon attending a follow-up with one of my doctor’s residents today, they want to do a tilt table test to rule out POTS.
Awesome.
I just drank about 16 ounces of water and wolfed down an Abe’s Mom’s Gluten Free coffee cake muffin. I’m pretty sure it was nutritionally void but it tasted amazing. It tasted like the whole thing was made of coffee cake crumb topping.
Work this week has been really good– except for the fact that I was in intense pain Monday, and then I nailed it Tuesday (and discovered the extra energy came from my blood pressure being higher than normal), and then I hurt on Wednesday from overdoing it Tuesday.
I came home from work yesterday, went to the chiropractor, canceled my session at the gym and was asleep by 7 p.m. and I slept until 5 a.m.
Speaking of work… two bits of news from the Bizzy Hizzy. My favorite sinkhole opened again and it got filled again this week. And they were giving out random PVC pipe. Of course, the teenager wanted one.
I used the bathroom at the doctor’s office and I noticed a strange pattern on my favorite jean jacket. It looks like a rune. So, I posted it on social media. And it looks like a potential bad omen. It looks like Raido, “the journey,” backwards.
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.
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 returned to work today, after a month and two days away from the Stitch Fix Bizzy Hizzy.
My blood pressure started normal– which has been unusual– so I almost didn’t have my morning coffee. But it wasn’t quite 5 a.m. and I thought that I should find out how much caffeine does impact my blood pressure.
I went for my blood test, and my phlebotomist asked questions about working for Stitch Fix, and when I answered them, she initiated a conversation about how striving for a career isn’t as beneficial as we all once believed. She pointed to the medical industry. “It’s not easy. Everyone’s burnt out.”
I’ve said for years that I’m tired of the stress and I’m tired of an employer benefiting from my creative energy. I told her about my little side business and she nodded knowingly.
When I arrived at work, I found my name on the morning head count and went to find my table. My usual table. My boss stopped me and said he thought they changed my table, which another supervisor confirmed, but then someone was at the new table, so I was sent to my regular table.
“Welcome back,” she said. “Some things never change.”
“Well,” I replied, “they did paint the bathroom.”
Much to my surprise, they raised my table to the height I requested so that was amazing. And Southern Candy was across the aisle from me!
My entire day was delightful. It turned out the Bizzy was celebrating its 7th anniversary with a birthday party, pizza and cupcakes. The team got new, vibrant tie-dyed t-shirts and wore them for photographs. A lead brought one to me and I put it on over my existing t-shirt to join the crew.
I made more than 100% on my numbers, which no one expected me to do, and I was pretty proud of that until one little five minute interaction with someone who was “dealing with the rejects.” Now, I’ve had interactions with this person before and it’s the one person in the whole warehouse who lacks diplomacy in her people skills.
And the funny part of what I’m about to type is that in my previous interaction with her, about six months ago, her complaints about my work were quite similar.
She tossed the box on my table. She might have dropped it, but it seemed like she was throwing it with emphasis.
“I’ve had to deal with six of your rejects today,” she said.
I was embarrassed, and running through everything I might have done six times. I’d completed 100 boxes at this point.
“I’m sorry,” I said. “Let me see.”
She moves aside and points dramatically at the fix. “Your sticker is off center.”
“I can redo it,” I said and reached for the package.
“I’ll rewrap it,” she snapped at me.
“I’ll be more careful,” I said. “But it’s my first day back today, so I must have turned it and not noticed that it was off center.”
“Well, you have to go slower.”
“If you see anything else I need to be aware of, please let me know,” I said.
And she left.
I don’t like the way she handled the interaction. As a figure in a position of authority, she did not have to wait until six of my boxes had such a rookie mistake to mention it to me. Maybe, if she’d mentioned it at box three, she wouldn’t have been so annoyed with me. I know why it happened– and why I didn’t notice– and I spent the rest of my day being ornery about my sticker placement.
I don’t mind feedback. I love being told how I’m doing. Here’s another way she could have approached it: “Hey, Angel, I’ve been fixing rejects today and several of yours have had off center stickers. Can you address that?”
I am so sick of medical-related posts. I want to get back to the silliness I enjoy everyday, and straighten out the mess my finances are in, and get back to work before the mortgage is due. But there’s so many questions I have– and have to admit– that idea of taking another fall like my last one is terrifying.
My normal, stumble-over-my-own-feet kind of falls are scary enough. But these… the sensation of suddenly being in the air with no tactile connection to the mechanics of the fall… are different.
The brain fog is still heavy, and I think most of what I am struggling with now are side effects from the beta blocker, or potentially hormonal, and I thought I had a TSH check today at my local quest. It was part of why I didn’t go back to work today, I wanted to discuss the heart monitor, my TSH levels and my orthostatic hypotension with my doctor. (Orthostatic hypotension means blood pressure that drops too low when you recline or lie down.)
I’m going to tell the story a little backwards…
Tuesday Morning
I originally set my alarm for 4:45 a.m. I planned for today to be a practice wake-up day for work tomorrow and I have a 6:40 a.m. appointment for a TSH blood draw at Quest. Then, I would hopefully discuss with my doctor today the state of my orthostatic hypotension (confirming that it is orthostatic hypotension and that I am not at an increased risk of falling since my work involves standing all day), the results of the Zio heart monitor and my TSH levels.
The cardiologist sent his report last night — the Zio patch heart monitor did not detect any afib, and he would like to keep me on the beta blocker as long as I tolerate it.
And again, if I’m honest, I think the beta blocker is causing the orthostatic hypotension, but in general, I think it has helped calm my system down a lot.
I woke at 2 a.m. I’ve been drinking electrolyte water in the evening and in the morning as suggested by my doctor, which meant it was 2 a.m. and I really had to use the bathroom. But, being the neurotic little patient I am, I had to take my blood pressure to see what happened when I moved around in the middle of the night.
When I woke up, my blood pressure was 96/56, when I arrived in the bathroom it was 113/80, after I relieved myself it was 118/74, and when I woke up at 5:45 a.m., it was 100/56. I had changed my alarm in the middle of the night, forgetting I wanted to take a shower and do stuff. When I realized in the Quest parking lot that my appointment was for tomorrow and not today, my blood pressure was 111/73. So I came home, made coffee, had breakfast (see the brioche bagel at the end of this post) and my blood pressure dropped to 103/64 by 7:30 a.m.
I am trying to incorporate more of my stretches into my daily activities, especially when transitioning from standing to sitting and vice versa. My physical therapy is going very well, but I feel bad that I don’t keep up with it nearly enough at home, but I have so much on my mind with my hand, lingering bruising from the fall which I can’t believe it’s been a month, my blood pressure, and lightheadedness.
Luckily, I try to get to the gym between physical therapy appointments and I try to do balance exercises and finger stretches as part of my day-to-day.
Some random fun food stuff
Yesterday, the Teenager gave me $100 and asked if I could do her grocery shopping for her. Because it’s Easter week, a lot of her pet sitting clients need her. She has almost 20 visits a day most days. I went to Grocery Outlet and bought things I knew she would eat and from her list. For breakfast: muffins, Morningstar breakfast patties, Danish banana pancake balls (which are so good), brioche bagels, orange-pineapple juice, Cookie Crisp, milk. For lunch: salami rounds from Hillshire, snack packs of cheese and meat, precooked bacon, pepperoni sticks. For snacks: salad fixings, bananas, clementines, baby carrots, hummus, diet sodas, Dr. Pepper, and sweet tea. For quick dinners: ramen broth, spaghetti, pasta, red sauce, sliced black olives. My total came to $84. Teenager said she might send me grocery shopping all the time.
The banana pancakes are very good in the air fryer.
I had one of the brioche bagels. They are fiendishly soft and freakishly just a brioche with a hole in the middle.
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.
Angel Ackerman 