Today I received a paycheck. I haven’t had one of those in two months. I have been keeping my house afloat on $900 in disability payments (and denied the last $450 I was entitled to because the absence management company keeps losing the fax), savings and credit cards.
In two hours I will be leaving to drive over to my hand specialist/orthopedic surgeon about my sprained pinky. Despite the therapy, despite the time that has elapsed, it’s still tender, doesn’t bend all the way and has a rather distorted knuckle. Monday is my first appointment with my cardiologist.
My heart rate has been normal most of this week. But yesterday was a little rough– heart rate variations and fatigue throughout the day. I had a lot of muscular pain in my right hip, which extended into my back and quad, and worked overtime at the Bizzy Hizzy. So, I ate a lot of snacks, took ibuprofen, drank a lot of water, and ate my sorrow in the form of about 2,000 calories of burger, onion rings and blizzard at Dairy Queen.
My boss asked me if anything had changed to cause my discomfort. And as usual, Angel hadn’t changed one thing but several. I had worked hard the day before and perhaps I overdid it, because I had been behind in my numbers. Then, I went to the chiropractor, and when she touched me, it felt different. She often has to do things to my legs I don’t understand, but that right hip often feels like my pelvic bone is at the wrong angle. And when she touched it, the way she does every week, it burned instead of ached.
After the chiropractor, I went to the gym. And Andrew subjected me to leg-and-core day. Because he loves me.
I had a nice dinner after that of kale, potatoes and chicken. And I was in bed by 8 p.m. (Don’t judge me! I wake at 4 a.m.) At a minute or two before 9, I had to use the bathroom. And these days, I can’t take my chances. For some reason, I can’t always hold it. I have some retrolisthesis, and there is some theorizing that it might press on a nerve occasionally that interrupts that signal.
I stumbled from my bed, entered the bathroom, and next thing I knew I was kissing my ceramic tile and my Apple Watch was having a tantrum on my wrist. The Teenager ran up the stairs.
“Mom, are you okay?”
The shower shelf had started to fall off the wall earlier in the day. I had decided to be proactive and I removed it. I set it against the bathroom wall to rehang. In my evening stupor, I did not have my glasses on. The pale silver shelf blended in with the beige tile and I stepped right on the damn thing.
“Mom?” the Teenager said. “Why is your watch freaking out?”
Apple Fall Detection has received some mixed reviews. But this time it nailed it. My watch progressively buzzed until I looked at the screen and responded to it.
“It looks like you have taken a hard fall.”
And there were two options. “I’m okay.” And a big red emergency button. I hit “I’m okay.”
That’s how I went from 50 days without a fall to one. Sigh.
In the last of the medical update, I’ve been receiving a lot of repeated phone calls that never leave messages. So, I answered one yesterday that looked like an important phone number. And it was 11:22, so close enough to work lunch that I could step off the floor if I needed to,
It was the neurosurgeon. My neurologist had told me she was going to refer me to neurovascular to have my aneurysm checked. Apparently, they call you and ask your symptoms so the doctor can decide if your head is going to explode and if he needs to see you tomorrow versus in a couple months. So, I answered her questions.
“Have you ever had brain surgery before?”
Oh, I don’t intend to have brain surgery at all, I think. “No.”
“Do you have any allergies to the dye used in MRIs or CTs?”
“No,” I said. “I just had my first CT with contrast and tolerated the dye well. But I have a tooth implant, so an MRI might be out of the question.”
(Which is a shame as I would love to see my brain via an fMRI.)
Questions about my symptoms. Headaches? Yes. Vision trouble? Not really. Weak arms? No. But I have a tingling pinky no one can explain. Lightheadedness or dizziness? Yes, but we attributed that to low blood pressure and side effects of the beta blocker. Slurring words? Not slurring, but completely losing. But I have a history of anemia. Incontinence? Lately, yes.
“Do you have difficulty walking?”
I chuckled. “That’s loaded question. I have cerebral palsy.”
“Oh, let me write that down for the doctor.”
“Spastic diplegia if you want to be specific,” I told her.
“When did your symptoms start?”
“Well…”
I told her they found the aneurysm after a CT scan meant to check if blood wasn’t getting to my brain properly after my second fall in March landed me in the hospital. And here we are.
I need this weekend. Badly. And I’ll be taking Nan, my blind friend the space nerd, to Lehigh Valley Space Fest on Sunday.
It happened again yesterday. A work colleague reminded me that she was old and 50, at which point I had to say, “well so am I.”
After some back and forth, it was determined that I am a year younger than her, as my 48th birthday is in less that three weeks and her 49th is in June.
I have so much to say, and so much on my mind, that the words overwhelm me and don’t emerge as they should. But, here is my attempt.
Let me just say– so it looks less like I am whining– that yesterday was probably the first day since late January that I did not feel my heart pounding in my chest. Even at the gym. The Apple Watch reports that even as Andrew had me standing on balance trainers while swinging the heavy ropes, my heart rate stayed at around 150 beats per minute.
Yesterday I also felt strong and steady walking around all day. My back and hip pain never got over a three, and dissipated as soon as I got home from work. I didn’t feel like I was swaying standing there at my table.
Which, if you are curious, the Apple Watch counts folding clothes as steps, especially when it’s the aerobic clothes folding we do at Stitch Fix. So, I’m now routinely getting 15,000+ steps a day. I know they are not steps, per se, but it is activity. And about five minutes a day of folding clothes the watch registers as exercise.
My blood pressure has consistently been about 98/54 upon waking, 125/80 most of the working day, and 115/70 in the evening. I keep an electrolyte beverage at my bedside (electrolyte powder plus if you are curious) and chug about six ounces before getting out of bed. I’d have more, as the doctor suggested a full 16 ounces, but I have noticed that I have a tendency toward incontinence these days. If I feel I need to use the restroom, I have to go right away or I might pee myself on the way to the bathroom. It’s happened at home several times that once I registered the sensation, I just can’t hold it until I reach the toilet. Not fun.
And my pinky still tingles at work, during exercise and during postural changes– or so I think. I’m trying to figure it out.
The tilt table test to rule out Postural Orthostatic Tachycardia Syndrome (POTS) is May 17. And my neurologist will be referring me to neurovascular for the aneurysm they found in my head on my CT scan. But good news, she said, is that she doesn’t think the aneurysm has anything to do with my symptoms.
My short term disability provided by my employer only provided two weeks pay of my one month leave, and it was only 66% of my wage at that. I’m still bickering with them over the last week, because they claim my doctor hasn’t sent appropriate notes to justify my last week. I know my doctor’s office faxed the forms twice and I sent screen shots of the office notes. Now the absence management company has switched my examiner.
This remains extra frustrating because my initial fall, on Stitch Fix property, happened March 1. I filed a claim at that point, and missed some working time because of the incident but no full days. I don’t think. They canceled that claim, and when I ended up in the hospital the evening of March 13, I had worked a full day that day so that meant my waiting week started March 14. All this bickering over $450.
In the meantime, my car insurance had been due on the day I ended up in the hospital and I ended up paying it from my hospital bed by credit card. Because I hadn’t anticipated being out of work mostly unpaid for a month, I had business and other household expenses, primarily groceries, on that card, with The Teenager’s unexpected car repairs, and a balance from the ceiling repair we had last year. By the end of April, I had $5,000 on my American Express. And not a dime in my checkbook or savings account.
I used my rest time during the weekend to research a personal loan. And I closed on that with my bank of 20+ years yesterday. I’ve been paying $300+ a month on credit card debt. This allows me to pay them off, have a bit of a cushion, and repay at a rate of 6%. That’s the one good thing about having a high credit score in a bad economy, it’s cheap and easy to borrow money. It certainly makes me uncomfortable to have “more debt” but I have to remind myself it’s the same amount of debt, just more manageable.
It’s a lot. It’s a lot to think about when you balance it all with the fact that I have a disability, work full-time, have a side business where many people depend on me, and I’m a mom. The jury is still out on whether whatever happened to be in March was a “single” event or whether now on top of everything else, I have a chronic condition.
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.
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 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.
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.
I had my full activity session at Physical Therapy today. I did my stretches, got strapped into the gait belt, and did a series of single leg stability exercises under the supervision of the computer’s measurements.
Then we headed to the zero-G treadmill. I was advised to make my feet and pants have contrast. So, I wore my bright green shoes, my purple polka-dot knee socks, and my black-and-white cat leggings from Purr Haus in Emmaus.
He chuckled while remarking that I certainly followed directions.
The Zero-G treadmill required some rubbery pants surrounded by what resembles a surgical/Elizabethan collar (cone of shame) that get zipped into a treadmill pretty much encased in plastic. When it filled with air, it reduced my body weight. I was able to walk the treadmill at 50% of my body weight.
The reason for contrast is that the treadmill offers an image of your feet. Three views on a monitor: front, side and back. So I was able to watch my feet, move my legs, angle my feet and reinforce the improved gait pattern by watching it as I walked.
I was only on the treadmill for 15 minutes, but it that time I discovered what part of my foot I normally don’t use. It was exhausting– and exhilarating– and so fun to show the Teenager the results when I got home.
But before I got home though I had an appointment to have my stitches out and on my goodness did I have the most personable and confident resident yet. I only had three stitches but that last one gave her a terrible time. It took her thirty minutes to get all of them out. I had her laughing and she was very patient and determined, and so afraid she was going to hurt me because “if it were me I’d be jumping out of my seat!”
She said I was the best patient ever, that I sat so still and I must have a high pain tolerance.
Between the two appointments, I stopped at Dunkin for a decaf coffee and saw they had a new “egg taco.” I read the nutritional info and with 500 mg of sodium, 180 calories and 8 grams protein, it had less salt and more protein and less calories than the avocado toast. I am so sad they no longer have the hummus.
When I got home, I did some little things and ate the homemade chicken and dumplings my Pennsylvania Dutch mother-in-law is known to deliver when people in the family are sick. And then I tried to take a nap, but a little birdie was guarding me.
Here I am, looking less exhausted and beaten. My scabs were flaking off and healing nicely but some of them cracked today (vigorous chewing? It happened at lunch time) and started bleeding. I’m still impressed at how quickly the body can heal, but these stitches feel like flies on my face.
I left the house early today to visit Koch 33 Collision. In early February, a work colleague’s car happened to give mine a love bite on the entrance ramp of 22– this was early on in the days of my unknown cardiac troubles when the symptoms were starting to show. I remember not because my heart had anything to do with that situation but because I joked about minor car accidents just adding more stress to my life. The estimate will cost less than $1500, hopefully the insurance companies can agree to that.
When I came home, I made myself my first cup of coffee for the day. I have slowly been changing my morning coffee habit into a morning water habit, unless my blood pressure is low, then I go ahead and make the coffee (which my occupational therapist at hand rehab thought was hysterical).
“What?” I said. “This is my first week on this medication and my blood pressure has been low when I have to take it. They don’t know what caused my a-fib, so I can’t skip the dose, but I also can’t take a beta blocker with a blood pressure of 97/56.”
Today my blood pressure was perfect so no coffee.
The neurologist’s office called and moved my appointment up a week from 4/4 to 3/30. I mentioned the report from the physical therapist should be in my chart, and that the news looked good, and that my body had adjusted to the beta blocker so my blood pressure and my blood sugar seemed to be stabilizing.
Gayle had promised me a new graphic every week I made it without a fall. Unfortunately, I was on day seven when the last fall occurred so I never earned it. But today is day eight. So I definitely made it seven days. And I display my new badge proudly.
I worked on Larry Sceurman’s short story “The Vanity Demon” for his upcoming anthology, Coffee in the Morning. I’ve reached the point in the editing schedule where I should edit one story a day to kick back to Larry for final tweaks before sending to Gayle for layout.
Speaking of stories and Larry Sceurman, Gayle, Nan and I spoke to the Apex Writers Group last night on Zoom, about 21 people attended our presentation. The participants seemed most interested in book construction, so Larry’s book, The Death of Big Butch, allowed us to show how we used text and book design to reinforce the nostalgic feel of the 1970s.
I also received my latest copy of the Greater Lehigh Valley Writers Group newsletter, which included my first official “Podcasts for Writers” column. If you’d like to read all of it, it appears here. More of these lists will be printed and organized in my paid Substack archives.
The Teenager came home from work and we had to run some errands. Somehow, we ended up at my hand rehab appointment more than an hour early. We visited Josh Early Candies, which killed some time. But with our meager budgets we could not afford fancy chocolates.
We ended up at Grocery Outlet, but not our local store, one on the other end of the Lehigh Valley. And we hadn’t made it 20 feet into the store when I spotted Silk Very Vanilla Soy Milk in juice boxes. Now this is The Teenager’s favorite milk for drinking.
She almost bought a pop-top can of artichoke hearts to eat in the car but proclaimed that would be a new low, even by her standards. I bought myself a pack of Maple Donuts because it was time for my afternoon snack, and I seem to do better if I save a carb-y item for around 2 p.m.
The Teenager then made a noise and I wasn’t sure what was wrong and she said it was sad how happy we were wandering around a discount grocery store. I lamented that it was a shame Nan could not be with us. And I didn’t know if that would be a good time to also mention that Gayle and I had exchanged emails with a ridiculous amount of excitement about customized packing tape from Sticker Mule.
Gayle had said she had to check out the template because it was something the business should do when we had more money and I quickly said that despite the fact that we recently printed a new book, this was something we obviously needed. And then she totally outdid herself on the design, so if Sticker Mule delivers a good products, it’s going to be so amazing that you will have to order books just so you can receive a package from us.I pack a good looking parcel to start with, so this will up our game.
When I showed Gayle’s proposed design to The Teenager, the Teenager also got excited and I bet her father would, too, because he did spent most of her life to date as a shipper-receiver so our whole family has an acute appreciation and enthusiasm for packing tape.
But this is taking up way to much space– The Saga of Angel and Gayle and their Polka Dot Packing Tape.
The Teenager and I sat in the parking lot eating Maple Donuts. Maple Donuts are always delicious, but they are not maple flavored. These donuts had a sell by date of March 27 and it’s only March 21 so I knew they would be melt-in-your-mouth soft. And they had cinnamon sugar. I LOVE A GOOD CINNAMON DOUGHNUT.
I ate two cinnamon. They glided down my gullet and I couldn’t help myself from also having a plain cake doughnut. I have no self-control.
The Teenager whipped out a Silk soy milk.
“Are you going to drink that warm?” I asked.
“Room temperature,” she answered. “Do you think I ever drank these cold? How do you think they came out of my lunch box?”
,
Hearing her reminisce about having these in her lunch box reminded me of how many times I worked hard to find sales and coupons and deals to buy them for her because I knew she loved them– and other than that she only got Juicy Juice or Adam and Eve juices because I was very strict on what I fed her and Silk in juice boxes was so expensive compared to the half gallons. And sometimes I worked hard to save money on all the other groceries so I had the $10 extra to buy her favorite milk for her lunch.
And they are delicious.
The half gallons supposedly are only sold at Dollar General these days but we still haven’t found one in our area that sells them.
Once we headed to The Institute for Hand and Upper Extremity Rehabilitation, we had our cravings satisfied.
The Hand Report
When I arrived at therapy, they wrapped my hand in a moist heated pack for twenty minutes and it’s the best twenty minutes of my life. My therapist heard my tale of falling down the stairs and landing in the hospital in the hours after my previous visit, and he said I win for the most interesting story of the day.
Then, he proceeded to talk with me about things I could do at home to prevent future falls and make my life safer– because he is, at the end of the day, at occupational therapist. It was a great talk. It was an even better conversation because he gave me a hand massage during it.
My mobility has improved greatly, and even though it is still swollen, I can make a fist! I did several exercises there. My therapist mentioned that next time we will focus on strength, because he believes he can trust my previous experiences to make sure I follow through with a home rehab plan, he wants to be sure I have full hand strength so that I can fully grip the banister.
“Not that I’m picking on you,” he added.
I did four sets of exercises. First I picked up handfuls of these six-sided dice and dropped them all so that the six was facing up. Then I held the big ball in my hand and drew the alphabet in the air with only my hand and my wrist, not my arm. Then I squeezed the red ball. For the final exercise, I had two balls the size of a golf ball but a tad lighter. I rolled them across my fingers and then tried to reverse the order on the way back.
A brief summary for anyone new here: I am getting closer to 48-years-old every day. I have spastic diplegia cerebral palsy which is a bunch of fancy words that mean my leg muscles don’t relax, my brain and my lower body don’t communicate well, and my hips, knees and ankles don’t work efficiently or even have a normal constitution.
I walk funny— I have an abnormal gait where my leg scissors and I toe walk. Decades of walking funny can cause wear-and-tear on the body.
But the last six weeks have thrown some new challenges at me: high blood pressure, unusual falls and now atrial fibrillation with rapid ventricular response.
The Splinter
Last night I got a massive splinter deep in my foot, in a place so deep that we couldn’t dig it out without really tearing a hole in my foot. So I asked the Teenager to slap a raisin on it and she did.
This did draw the splinter to the surface more but I haven’t removed it yet. The start of my last raisin-splinter journey happened a little more than a year ago. Read about that here. Especially if you want to hear how my splinter improved my gait and my hip pain and how the raisin and my cockatoo got the splinter out.
The Chiropractor
I visited Nicole Jensen of Back in Line Chiropractor and Wellness Center today— where she commented how loose everything was and how my body parts were all facing the right directions.
Feet facing feet directions
She got me ready for physical therapy where I’d be the youngest person in balance therapy today.
Physical therapy for balance and fall prevention
I have spent a lot of time in physical therapy — about every two years I turn up for few weeks with a physical therapist because even though a lot of it tends to be a repeat and I know what to do, it’s important to have an outside professional evaluate my status so I know I am doing the right thing for the problem.
In this case, we discovered:
The physical therapist approved of some of Nicole’s phrases for things— like “make my feet do feet things.”
My fitness coach Andrew and I are doing all the right things at Apex Training, using my sense of my body and Nicole’s insights on what my innards are doing.
The physical therapist is also impressed at my capacity to manage to take what could be catastrophic falls with relative ease. The Teenager says it’s because I “puddle,” relinquishing myself to the process instead of fighting it and tending up.
My static balance is impressive, but my dynamic balance “throws everything off,” meaning standing still I’m good, but moving or on an unstable surface, the issues can occur.
We will be working on exercises that open the hips and rotate the knees outward. And doing some gait work with a zero-gravity treadmill.
The physical therapist was also impressed with my ability to self-correct my gait, but I don’t know if he picked up on how much focus and energy that requires.
Angel Ackerman 