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.
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.
I started my day with some blogging before starting the morning round of doctors and my final day with the Zioheart monitor. I left at 8:30 for my chiropractor appointment, which also involves some physical therapy stretching and some balance assessment. With Nicole’s background, she serves an important cog in the wheel to know what she’s seeing and feeling as my body goes through it’s day to day.
But I’ve been feeling physically great, even if the beta blockers leave me prone to crashing and sometimes my blood pressure falling too low, but hey– that’s part of what the heart monitor is all about.
I went to the chiropractor and tried to demonstrate my impressive “trying to walk like a normal person” skills. And Nicole was encouraging. It’s exhausting and requires ridiculous amounts of focus, so I’m hoping it makes a difference to my hip issues and my femoral anteversion.
My chiropractor is just-about next door to the Lafayette College Store, where I needed to pick up some copies of our Not an Able-Bodied White Man with Money anthology that we provided for last night’s Jean Corrie Poetry Reading and Ice Cream Social. You can read about that on the Parisian Phoenix Publishing web site here.
They were having a store meeting when I arrived, so I excused myself to a couch by the store manager’s office to wait for Gayle who wanted one of Maryann Riker’s unique handmade journals. I’m in the middle of Suzanne Mattaboni’s Pencraft award winning novel, Once in a Lifetime so I can safely amuse myself.
They also have some fascinating tile in the bathroom.
When she arrived, we went for a walk around College Hill, which Gayle had not visited since she left her job at Lafayette College circa 2015.
We walked about 4,000 steps and I stumbled three times and caught myself every one. It’s the longest walk I’ve taken since my hospitalization.
And I asked The Teen to evaluate my walking and she immediately said, “Nope. Your left foot is still messed up.”
And I was trying so hard.
Gayle and I then met up with Joan and the guys from Echo City Capers, where we discussed our upcoming events and book launches.
Then I came home and ripped off the Zio monitor, only to realize quite quickly why it itched so badly.
Our long-term foster Minerva is off to a habitat at the Phillipsburg Petco tonight.
Are you sick of hearing about these nuisance trials and tribulations? I am a tad tired of living them, but sometimes health problems force us to pause, reflect, organize and refocus. That’s how I prefer to look at it, and since I can’t change the circumstance, what I can do is use every moment to my advantage.
Somewhere in Thursday afternoon, I realized that I would not be at work on Friday for the release of Thurston Gill’s book, The Phulasso Devotional. I had scheduled a Facebook event for the launch and planned on recording him opening the box of books at 6 a.m. and then posting it as part of the event.
But now, I was home sick, and my employer most certainly does not want me on site while I am even more of a fall risk than I normally am. I opened the box of books at home on Facebook live and while I was recording, my Zio heart monitor arrived. (if you want to see that, click here.)
The day prior, the company had contacted me that they were having problems with my insurance company, which turned out to be because they spelled my name wrong (memories of Valentine’s Day in Mrs. Sanders’ second grade class serviced, my earliest memories of “Angel” becoming “Angle”) and they were missing a digit from my member number for my insurance company.
The Teenager assisted me in applying said device, after shaving my chest, sandpapering it, and then wiping it down with alcohol. She’s nervous it’s not quite straight and left enough, and the device itself doesn’t give you much indication how or if it is working so I guess we wait and see. I figure if the placement had to be exact, they wouldn’t let you do it at home. I would assume that most medical professionals think most people are idiots who don’t follow directions. Because really– aren’t most people idiots who don’t follow directions?
Now, my friend who had the heart attack on February 15 had a heart monitor. Not this one, but similar of course. She had a thing she had to carry with her. All I have is what is on my chest. I remember my friend saying that she didn’t know if she should hit the button or not. Because the idea is, if you feel a symptom you hit the button and log the symptom in the provided booklet or in the app. But when symptoms are things like “heart racing” or “anxiety,” it’s hard to quantify that.
Compared to how I feel right this second, my heart was racing all day yesterday. But I also know my blood pressure when I got up today was 97/56. Once I got moving, it increased to 101/67. After strong coffee, black licorice, cantaloupe, a big glass of water and my beta blocker, it ended up 110/66.
In other news, my stitches have rotated a bit and don’t poke me in the lip anymore and I think the swelling has gone down. That makes life more comfortable. I’m not doing enough hand rehab, but I’ve been using and bending the fingers in ways that mimic the exercises without sitting down and making a formal effort to do them.
I return to the gym Monday, to do what I would refer to ask a gentle workout, to get back in the swing of things and see how it goes. By Wednesday I hope to do closer to a real workout, because the heart monitor has to get a good replication of my life.
Luckily, if such a thing can be lucky, one fall happened before the gym and the later one occurred after. Based on that, it looks like exertion in the gym has nothing to do with it. Unless of course, it turns out that exertion at work is equivalent to exertion at the gym, which we won’t know unless I manage to stand at a table and fold clothes for eight hours. Who has that many clothes?
I do have to clean my closet and weed out old clothes, but I don’t want to fold all my clothes.