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.
I’ve been sipping strong coffee for about 90 minutes now, munching pistachios as I take my morning beta blocker. I have been trying to get my meds to 6 a.m. and 6 p.m. I don’t want to take them at the time I get up for work, because who wants to wake at 4 a.m. on a day off? The hospital gave me them at 9:30… but in the evening I’m usually asleep by then and working on a typical day. 8:30 a.m. is my morning break at work, so that would make sense from a practical point of view, but it would also mean having a snack at 8 p.m. and not getting to sleep until 9 which means the most sleep I will ever get is 7 hours. 6 a.m. and 6 p.m. sound ideal because I usually arrive at work at 6 a.m. and have a small breakfast and 6 p.m. is dinner.
But today I slept until 7.
Oops.
But when I got downstairs, my legs felt persnickety and my blood pressure was perfect if not a little low– so I went ahead and made the strong coffee. And I took my baclofen for the first time since before I went into the hospital.
One of the generalist’s at the hospital thought the baclofen might be causing some of my issues. Which makes this a test? Maybe?
But this is not a post about my Zio heart monitor or my scabs slowly crumbling down my face, though those things are fun. My gash is healing rapidly and well. I wanted to talk a bit about my weekend and what’s up with the publishing company.
Many of these thoughts will be further explored as part of the Parisian Phoenix blog and Substack newsletter. We’ve migrated from Mailchimp to Substack for better visibility and the prospect of building more paid resources and services for writers and readers. If you didn’t read this week’s recent release, check it out here.
Friday night, a journalist friend and her partner came to visit. I had planned to go visit her, but this close to my hospitalization I wasn’t sure driving on the highway by myself for an hour was a good idea. They have also been involved with cat rescue, so she’s offered some support on realigning the cat book. I’m helping her (I hope) with some of her goals and we’re both trying to help people find ways to publish their books.
My unsolicited submissions pile is growing rapidly.
Meanwhile, the dog is keeping an eye on me.
In the afternoon yesterday, I visited my “office” at Panera where our photographer Joan touched base with me regarding her activities at the Greater Lehigh Valley Writers Group conference this coming weekend. She’s not fooling me– I know my friends are doing wellness checks.
But I had the most amazing meeting with the duo behind Echo City Capers, and we have a handshake agreement to launch some projects together which will allow Parisian Phoenix Publishing to kickstart Parisian Phoenix Kittens with a second edition of an Echo City Capers Jr. book, a children’s book from Darrell Parry (and maybe someday a puzzle book/older kid story– hint hint Darrell) and perhaps event a story in the vein of Eric Carle from Larry Sceurman.
It’s thrilling to watch a simple “let’s introduce ourselves” coffee meeting can explode into ideas and mutual support.
That little meeting went two hours and when they saw our physical books, they were pleased. They immediately saw the love and attention we give to our titles at Parisian Phoenix, and without even meeting Gayle yet, I think they “know” and trust her.
I ended my afternoon romp with a visit to Larry, to deliver some publicity materials and give him and his wife, Barbara, a copy of Thurston’s book.
When I left, I felt like my blood sugar was dropping. I found a cherry Pop Tart that the Teenager had left in my car more than a year ago and came home and made a lovely lamb dinner. (The teenager saw lamb and potatoes in the skillet and immediately claimed the leftovers.) My blood pressure was high, but it was also time to take my beta blocker.
Finally, I slithered to my bed– exhausted, when I didn’t even do much– in great anticipation to finish Katherine Ramsland’s I Scream Man and Echo City Capers YA Graphic Novel printed in Canada, Who Turned the Lights Out?
I was so tickled and delighted to read the wit, the humor and the “smarts” in this little volume, which the type is uniquely done and the paper quality gorgeous. It made me very sad to put the book down to sleep.
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.
TRIGGER WARNING: This blog posts contains descriptions of a fall and medical treatment.
Listen, this one is going to be long. I spent almost a day in the hospital under observation on the general med-surg floor without my laptop or my phone charger. And the special type of not knowing in the hospital means you can’t trust them when they say you’re going home until they pull the IV out of your arm.
I’m going to use subheadings and break it up with photos. Gayle says I need to start writing a television sit-com. I would– but I’m not a screenwriter. Maybe I’ll change this into a play at some point.
The Unexpected End to the Evening of 3/13/23 (the fall)
It had been a busy day– maybe too busy: work, hand occupational therapy, a killer chest workout at the gym– but it was a good balance day. I could stand on one foot, I felt myself, and I was jovial. The only weird thing was on the 13th rep of every set of barbell bench presses, my right pinky would tingle. I even mentioned it to Andrew, and in the back of my mind, I was concerned because when my blood pressure spiked in early February, my right hand tingled.
I got home, had a lovely dinner with my daughter that included a massive bowl of brussel sprouts (which are one of my favorite things in the whole wide world) and made a cup of valerian tea to take to my room because I felt a little hyped up and it was almost bedtime.
I had the tea cup in my left hand, and my buddy straps for my sprained pinky on my right, and I was probably using the banister with my right hand. Three-quarters of the way up the steps, probably where the banister ends, I felt myself falling backwards. Just like a tree swaying in a storm (which considering the weather we’ve had recently sounds like the right metaphor). My normal falls start from my lower body. This did not.
I made a sound and started dropping f-bombs as I cascaded, according to the Teenager, sideways then straight out and dropped at a ninety degree angle onto the air conditioner. The Teenager ran to me. The air conditioner knocked the wind out of me, seriously knocked the wind out of me and now judging the bruise on my back it might have been a kidney punch from the stairs. I slowly rose and sat on the bottom step.
As I did so, I saw a frightening look on The Teenager’s face.
“I’m fine,” I assured her.
“No, Mom,” she said. “You’re not.”
Later she explained to me that blood was “pouring from my mouth” and she worried that I knocked teeth out. Honestly, from the pain in that moment, I feared I had broken my jaw (in part because in my chin-meets-sidewalk accident of spring 2010, the ER staff and the dentist marveled that I had taken enough impact to spit out teeth but had not broken my jaw).
The metal frame that holds the air conditioner in the window had sliced open my face under my lip. The tea cup had ended up between my breasts and smashed into pieces. I looked at my hands. They were covered in blood. And the floor. And the wall.
My pajamas were wet. And most of me had driblets of blood here and there. The Teenager got me a rag and a bag of frozen peas and we sat on the stairs for a minute and tried to stop the bleeding. The lightheadedness, feverishness and sweating started. I handed The Teenager my phone and told her to call Sassy, because she witnessed the last fall and this felt identical. I also checked my blood pressure: 106/81.
Sassy answered despite being at a restaurant with her family. It passed and I promised to keep an eye on myself and call my doctor in the morning. But when I looked in the mirror, I knew what my daughter described as a cut was a gash and it needed stitches.
I peeled off my pajama top. Blood streamed across my chest, perhaps from the tiny pricks made by the broken ceramic but more than likely from my face. I left on my fuzzy Cat-in-the-Hat pajama pants, threw on a tiny yoga tank and a Stitch Fix t-shirt and zipper hoodie and headed out the door in dirty slip-on sneakers and no socks.
In the Emergency Room: When the doctor listens and the patient acts responsibly
My daughter took my car and drives me to the hospital literally 600 steps away. She didn’t trust me to walk. It’s literally half way between our house and her high school, but she doesn’t know how to drive there so we wiggled around the neighborhood. We wandered in, registered, and were taken right back. 8:20 p.m.
The Teenager did have time to buy refreshments from the vending machine.
Once we got into our room, we saw nurses and a doctor very quickly. Our Emergency Room physician was amazing. I explained what happened, including my description of how my falls have not been normal, and he gave me three options.
He could stitch me up and send me home and I could be home by 9 p.m.
He could order bloodwork, fluids and an EKG, but then I would be there an hour or two.
He could go all out and order CT scans and all the things, but then I’d be there for hours.
I chose option 2. I already felt something was off, and I thought bloodwork would give us a starting point without going crazy like some sort of hypochondriac. (Speaking of hypochondriac, my current favorite podcast is Hypochondriactor with Sean Hayes and Dr. Prianka Wally.)
They even allowed me to throw out my rag and get a big old pack of gauze.
The nurse hooked me up to an IV of fluids just in case the incident was amplified by dehydration. Here is the first mistake we made, not putting on the hospital gown until after my IV was installed. So when they came in for my first EKG, I had to shimmy my shirt and tank down the IV line to the bed.
The poor technician with the EKG machine had a terrible time getting it to work and she was so close to the end of her shift and tired. The Teenager had her intrigued that she had found a half-iced tea, half-lemonade Monster in the vending machine. The technician ended up getting a second EKG machine and the doctor came in to do the stitches but decided to come back later.
That’s about when The Teenager almost sent Sobaka’s mom a text that I was in hospice, thanks to auto-correct.
And the blood pressure and heart rate go crazy
You know that look you never want to see? The one where the doctor almost gets an “oh shit” expression? Now remember– I came to the hospital for stitches. And I’ve been monitoring my blood pressure for six weeks. And maybe it had been a day or two since I checked it, because we went to Waffle House, had margaritas and ordered Dominos in the same weekend.
I was informed that my blood pressure was high and they were going to administer a beta blocker through my IV line. After it kicked in, I looked at the monitor and it said 150-something over 90-something. I’m glad they had it turned away from me before giving me the medicine.
The second EKG revealed I was in atrial fibrillation. And as my blood work started rolling in, it should my white blood count and TSH was high.
Meanwhile, I am texting my travel companion M, because he’s a medical technologist by trade and loves numbers.
They also asked when my last tetanus shot was, to which I responded, “two weeks ago.”
When the doctor came in to do my stitches, I asked if he could unhook me from the IV so I could use the restroom first. Because I don’t know about you, but I find it horribly difficult to handle pain when I need to pee.
The doctor finally had his chance to shoot up my face with lidocaine (that second shot was a bitch) and sew up my lip. We irrigated the wound by me holding a basin under my face and him pouring the solution over my face so I ended up with quite a bit of liquid and a little bit of blood on my gown and down my chest.
I got three stitches, and he did a nice job. Not that I have a whole lot of experience. I’ve only had stitches once before.
And then I got a third EKG from a new technician also about to end his shift.
That’s when the doctor said I was still in A-fib and he’d like to admit me for observation. If that was okay with me. And if the hospital administration would allow it. Which probably means if the insurance company would allow it.
Admission
At 11 p.m., I was wheeled into some narrow elevators and transferred to room 353, which had to have made M happy. All prime numbers. I was admitted to the med-surg floor and I think I might have been the youngest person in the hospital. As we rolled along, I noticed they have a whole lounge of the chair I love that the dog ate!
The nurse had some situation going on so it took us until 1:30 a.m. to finish my admission survey. I had fun with some of the questions: “Are you safe at home? Do you face any physical or verbal abuse?”
“Only from my cockatoo,” I replied.
They had to take photos of my bruises, too, and take my cardiac enzymes, blood work and vitals every few hours. And the floor seemed to be crazy until 2 a.m.– and remember, I had gotten up for work at 4 a.m. I managed to take two naps each about 45 minutes.
I thought I had turned off my work alarm, but I had not, so it went off at 4 a.m. and then the nurse started her rounds at 4:45 and my work friends started texting at 5. So I was up for the day, with no phone charger and a book by Katherine Ramsland as my entertainment. I read 150 pages.
I was delivered the most boring, high carbohydrate breakfast I have ever seen.
And the staff kept offering to bring me water, and when I said yes, they would disappear forever.
I met with the cardiologist, the occupational therapist, the physical therapist, and the hospitalist (who needs a caretaker for her beagle when she visits India for a month this summer).
By morning I was allowed to move independently, which meant I could use the bathroom without someone watching me walk. The staff quickly learned that although I have cerebral palsy, I am adequately mobile.
The cardiologist explained that we would start a beta blocker, as that is the easiest form of management, and based on the echocardiogram and the information from the heart monitor I will be soon wearing, we can determine if different or more aggressive treatment is needed.
Often, A-fib raises risk of stroke so patients often take blood thinners. My cardiologist and I agree that will my tendency to fall, those medications would do more harm than good.
Echocardiogram and therapists
The echocardiogram was fascinating. To see an ultrasound of my heart in motion was truly an amazing reminder of what a complex and marvelous machine the human body is. My mitral valve regurgitation did show up on the test, but even with that my heart function was normal. That was great to hear, because lord only knows I didn’t want to hear that the mitral valve was failing and confusing the rest of my heart. I have never had medical surgery and would like to keep it that way.
The occupational therapist I met asked me what my everyday challenges were. I answered that my biggest challenge was dealing with my socks and shoes. She showed me an extended shoe horn and a sock aid. The sock aid is basically a big piece of plastic pipe with a jump rope attached to it. You put the sock on the end of the pipe, stick your foot it and pull the tube away from the sock with the rope.
I think you probably kill the life span of your socks by stretching them out, but if it means you can put them on, that’s cool to know.
And the physical therapist okayed my gait and my walking, especially knowing that I was already scheduled to start fall prevention therapy on Monday.
I was able to order my own lunch, but even though I ordered the entree salad, I got something much blander. But compared to breakfast it was delicious.
The Teenager came around one, because the hospitalist said I would soon be discharged. The hospitalist had declared the fall was mechanical, even despite my protests it was not. She told me to follow up on that with my neurologist. And I plan to. The poor neurologist has been getting so many portal-based text messages from me.
The head nurse came in and gave me a gift blanket— that would have been nice to have the night before.
The nurse removed my IV and 2:30 and we left the hospital about 3:30. I filed my short term disability claim, made an appointment with my primary care physician and took my first set of meds. The Teenager made dinner and I was in bed, asleep by 5:30.
My bruises hurt. My lips are dry and sore but finally the cuts are healing enough that food doesn’t burn them.
I have proposed to my employer, and plan to bring paperwork to my doctor tomorrow, to leave me out of work for at least three weeks. I have six weeks of leave left. The three weeks would give me time to see if the medicine is working, finish hand rehab, participate in fall prevention, wear the heart monitor and take ALL that information to my neurologist.
Because no one wants me having another episode at the warehouse.
The cardiologist assures me that I can’t blame this on Waffle House, margaritas and Dominos, but how can we know that when the last fall down the stairs happened after Little Caesars, Taco Bell and Diet Coke. Coincidence? Do my overbooked days add to the triggers? The risk factors for A-fib include anxiety, being overweight, alcohol and caffeine. That’s my life in a nutshell.
I’m going to see Nicole today, not sure I need a chiropractor right now, but I had the appointment already and I like the idea of her checking my post-fall body.
I was rather indifferent to the prospect of last night being Sunday and today launching another week of folding clothes.
We kidnapped the neighbor’s dog yesterday– they are away on vacation and the dog sitter hadn’t yet fully transitioned into the role of caretaker and the dog thought he had been abandoned forever. His family is usually with him 24/7 and he didn’t understand the change in household routine. As our house is attached to his, he followed us from room to room barking. So, we texted his family, and the Teenager left a note for the dog sitter and kidnapped the dog. He started barking at 8 a.m., we kidnapped him around 10:30, and his pet sitter returned around 1 p.m. He had been in to check on him at 6 a.m., so the doggy panic was an exaggeration.
I finished proofreading Rachel Thompson’s new fiction anthology and went to bed after the time change to start a new work week and occupational therapy at The Institute for Hand and Upper Extremity Rehabilitation. So I guess I might be considered excited.
My process lead at work informed me that today was my last day in “focus” (or performance-related probation). All I needed was to hit 100% and I would be considered fully performing again. I’m still a little miffed that I was placed in such a situation to start with, as the reason I fell into this category was a lack of adherence to my accommodations.
And hitting numbers today was a challenge. In addition to my sprained finger, the mysterious issue in my hip, quad and glute that may be am injury from my fall or the item that caused my fall, the rain making other injuries hurt, my lack of medication because CVS has been out of my muscle relaxers for two weeks, I also had to advocate for myself because new support people rotated into our department and one of them didn’t know about my limitations.
Luckily, we had an awesome time at lunch because Sassy had made us chicken, rice and potato salad. If you saw my pictures from over the weekend (click here), these look very similar.
I left work at 2:15 to make the 24 minute drive to the hand rehab office for my 3 p.m. appointment. Traffic made it so I arrived at 2:50. They have a new receptionist– which explains why she couldn’t find my records, why she didn’t call me back like she said she would, and why she never sent me the link for my initial paperwork.
The therapist remembered me from my mallet finger, and informed me that the joint in the middle of the pinky finger is the most unforgiving joints on the hand when it comes to recovering from an injury. Likely, I have been taking care of mine and while it is swollen and my range of motion is limited, with heat and massage, it did respond to gentle manipulation. I had five exercises I needed to do for my mallet finger.
I have those five, and an additional five, to do 3-5 times per day (depending on the exercise), with massage.
The traffic on the highway was miserable, so I detoured for a decaf iced coffee and a tiny order of munchkins as my pre-workout. And much to my surprise, this Dunkin, the one I used to frequent when I was managing editor of The Lehigh Valley News Group, had cinnamon sugar munchkins. Had I known that… Those are my favorite and I have not had them in years.
I had a kickass upper body workout that worked a lot of my balance, and it was a good balance day, and for dinner The Teenager let me have most of the Brussel sprouts. A good day indeed.
And by my count, I did hit 100% today at work. We shall see tomorrow.
So, I left work for an early lunch yesterday to go visit my primary care provider. I had an appointment with one of his residents for paperwork for an update of my intermittent FMLA leave. She gave me a once over and went to bring my paperwork to my doctor, at which point he came in and gave me a little fist bump and a sad, concerned look.
“What happened?” he asked.
Concerned that I had fallen again, but also impressed that I had spiraled down 7 concrete steps with no other injuries other than a sprained pinky and some horrible bruises, he referred me to physical therapy for fall prevention. I’ll probably be the youngest person in there.
I start hand rehab on Monday at The Institute for Hand and Upper Extremity Rehabilitation, the same occupational therapy practice that handled my mallet finger last year.
I made an appointment for a consultation with the physical therapist on March 20.
But yesterday my tailbone area started hurting again and today my knee hurt and my right quad was burning. The leg felt stiff and off and it felt reminiscent of the early days of pain I had in February. And I was worried that whatever caused my recent fall– because I still don’t have any clues as to the specifics of why it happened– might be starting again.
So I left work early to go to see my beloved Nicole Jensen of Back in Line Chiropractic and Wellness Center. She said I wasn’t crooked, I wasn’t that tight or spastic, and that it sounded like my issues could just be nerve and muscle tissue still recovering from the fall. She actually said I felt better than usual, that even my feet were facing the right direction.
That was a relief. But I wanted to have her insight to get the neurologist, my primary care physician and the physical therapist coordinated. Because every clue we have is a step in the right direction.
And I have to wonder… Does my body feel painful, awkward and hard to control because it’s moving more correctly and healing and I’m not used to that?
I am so sick of disability-related posts. My goal today is to start the March newsletter for Parisian Phoenix, which I will be distributing via Substack. Yesterday felt like a beautiful spring day and today, today there is two inches of snow on the ground.
I’m tired. And sore. And stiff. I called out from work today, although I’m fairly certain I have no paid time off for it. The Teenager and I have major bills do this week, and they scare me, but I have (and she has) placed every spare penny we have into paying them. And they will be paid.
So, before I back up, and explain exactly what happened since I closed my computer yesterday afternoon, let me say that my plan has been to take better care of myself. To stop pushing myself to keep up with the people who don’t have the same issues that I have. To ask for help. To be honest– not only with others, but with myself.
I have planned to organize regular long weekends every three-to-four months to give my body time to recuperate from the stresses of being on my feet folding clothes all day, and to give myself time to finish larger projects for Parisian Phoenix Publishing. That hasn’t happened, in part because I’ve spent so much time sorting myself out with medical appointments, and also because November through February incorporates a lot of paid holiday time.
I closed my computer yesterday afternoon and The Teenager asked if I wanted to take the dog for a walk.
Now, let’s think about the conditions yesterday:
It was a beautiful pre-Spring day and the sun made everything alive.
I woke by alarm at 6 a.m. to meet Southern Candy at the diner, where I ate salty food and drank three cups of coffee so my blood pressure was creeping up.
I went to the orthopedist, but was unable to get an appointment with the hand rehab people.
I was going to the chiropractor in about an hour, for the appointment last week that I had to reschedule because of my fall.
I have not gone to the gym in a week because of the fall.
My legs are covered in painful bruises.
I was a little hungry.
I had taken Baclofen* in the morning, but not since.
Interesting side note: CVS ordered my baclofen refill last week, as they did not have it in stock, and I haven’t heard from them since.
I felt good. Nothing hurt. I hadn’t noticed any balance issues. So, although I felt a little wiped out, a short walk sounded good.
The Teenager suited up the dog and put her cat in the cat-backpack and we headed up the street. We made it halfway up the block, cat screaming in fear, when the dog noticed other dogs and got nervous. And I had what The Teenager called “a three-point fall.” I immediately assumed it was a basketball reference but she explained. I stumbled, froze in the air for a second, and then fall. I believe the fall at work was a three-point fall as well. That frozen time she witnessed was me actually making a decision what to do next. That is the second where I have to decide whether to fight the fall and try to regain my balance or use that second to frame the fall and try to control the impact.
In this case, I opted to throw the fall to the left to protect my already injured right hand.
The sidewalk and the meat of my palm met as I aimed for the grass, now a barely visible scrape. The Teenager declared we would turn around. I told her I could turn around and she could keep going, but she promptly declared this was a less-than-ideal experience for everybody.
Now, at this point, I have a new short-term disability claim open with Matrix, waiting to hear when and how often the hand rehab people want to see me. With past experience, I’m fairly certain it will be once a week. But, before committing to returning to work, I would prefer to talk to them and was hoping they would call back and see me today, and then, if necessary, I could email or hand-carry paperwork to my PCP to decide whether we would pursue the new STD claim for my hand or amend my intermittent leave parameters that cover my cerebral palsy.
My claims examiner is confused, and since I have not received all the information I need to make a decision, my answers are rather wishy-washy.
Also, the weather is calling for snow. And I have this nightmare of me leaving my house in a snowstorm when I already have mobility and hand issues.
I head to my beloved chiropractor, ready for her insight and her physical therapy knowledge. Meanwhile, my neurologist/physiatrist who I had had a brief texting conversation earlier in the day, texted and asked if anything else could be happening in my body to cause these issues. I’m typing the list of answers: lack of chiropractic care, lack of gym, lack of Baclofen, bruises on my legs, high blood pressure. I am scheduled to see her in early April.
And meanwhile– we still don’t have an answer for why my quads were burning a couple weeks ago and why my “normal” issues in my hip joints seem to be moving into my sacrum.
So when Nicole the Chiropractor gets her hands on me she declares that my hips and my sacrum are all locked up and my lower body is stiff. She gets everything moving and pushes everything around. And I stand up feeling like a jelly fish, so loose it takes me a while to remember how to walk.
I haven’t heard from the hand rehab people. The neurologist has probably finished her day. My right side is starting to ache a bit. I drive The Teenager to the post office and we stand in line behind a Karen who criticizes every customer in front of her for not using the post office correctly, gets to the counter, and very promptly gives my favorite postal clerk a hard time when she discovers that Priority Mail box she has packed her materials in is a Priority Mail box and will cost $17.10 to mail. Even before she hears this news, she badgers the postal clerk about how much it will be, and he’s confused because it’s a medium flat rate box so it’s $17.10. And she then snapped that she had to text the person receiving the package because that person will have to pay her back. The postal clerk suggests maybe she buy a different box from the postal supplies station in the lobby and then he could mail it for $10. But she grumpily agrees to pay the flat box rate.
We return from the post office– having mailed cookies to a friend of The Teenager who has joined the service– and I head into the house and realize I left my glasses in the car as my prescription sunglasses are on my face. I head back out to the garage and walk down the narrow cement steps to the car bay. Half way down, my ankle gives out, twists underneath me, and I somehow manage to lower myself to the ground without falling down the stairs.
I pick myself up. Everything feels solid. I text the neurologist. I return to the house. The Teenager expresses concern as I took too long to walk to the garage and back. I explain what happened.
She orders me out of the kitchen and she says she is going to make dinner and I am going to sit. I use the time to email my supervisors and call out for today, because I think it would be best if my body had some rest. I email my claim examiner and tell her to cancel my hand-related claim, because this whole incident is definitely something we have to deal with as a cerebral palsy issue. And I tell her if I need to contact my primary care doctor and have my intermittent leave parameters amended I will.
I ate a pile of peppermint kisses, a moon pie, and a rice krispie treat after dinner and washed it down with Diet Coke. Despite that, my weight is down more than two pounds this morning and my blood pressure is fine. My lower back and right side of my lower body hurts, but I’m hoping my morning dose of Baclofen will reduce the stress on my joints. My arm still hurts from my Tdap booster.
It recently came to my attention that March is Cerebral Palsy Awareness Month, in addition to Women’s History Month. So as a tribute, I fell down the stairs leaving work on March 1. Seven cement stairs.
I have a massive bruise on my thigh, a knot of a bruise on my left calf, a swollen pinky that looks like a dog bit it, and wounded pride. As many injuries do, my finger throbbed and ached most of the night.
At work, I was frustrated, cranky and tired and moving so slow. By my calculations, I did 110% on Wednesday and now 88% on Thursday. WTF? I asked myself. Meanwhile I hear my blind friend Nancy Scott’s voice in my head, “Angel, you did too much.”
Several managers came over to ask how I was, I said I was okay but my finger was swollen and would not bend. They all mentioned I might see the safety manager later in the day. I didn’t. The person checking in on me most was my process lead, who also has a disability, and I told him I knew I wouldn’t finish at 100%. But apparently he didn’t know I had thrown myself down the steps.
The conversation went something like this:
“What happened? Did you miss a step?”
“I was on the landing and I lost my footing, and I had that split second to regain my footing but there wasn’t enough room on the landing so I thought I could gain my balance by kind of trotting down the steps but I missed the first step.”
“So where did you end up?”
“At the bottom.”
“So you fell down ALL the steps.”
“Yeah.”
I think I had 24 boxes of refix yesterday so that meant I dealt with a lot of carts, which slowed me down further. And my neurologist warned me that any injury might short circuit the relationship between my mind and my body. My brain and my legs don’t have many communication skills as it is and anything going on with another part of my body will muddy up the whole situation.
My leader assured me that we could come up with a plan, but that still frustrated me, because I’m already on a probation of sorts (which stemmed from a work-related cerebral palsy “flare-up”) and I see this as an endless cycle of me doing my job and then falling behind and getting in trouble. And the more they push me, the more rapidly the situation will repeat. Another friend who used to work for a big local employer in administration said she’s glad this happened because it might make my disability more real for them.
But anyway, after work, I had a lovely conversation with Thurston, our Parisian Phoenix author who has a devotional coming out this month when a certain publisher gets herself sorted, about his book and the future.
When I got home, I removed my final band-aid of the day and had a weird gut feeling something was wrong. Like this needs a doctor wrong. So, bribing The Teenager with a pizza from one of our favorite pizza places that she forgot existed, we went to Urgent Care. Between her ear infections and my injuries, we spent a lot of time there.
The doctor seemed a little perplexed that I broke my “middle phalanx” of my pinky falling down seven cement steps. They expected more damage. What can I say? I have skills. And that friend I mentioned above? She broke several ribs falling down the stairs in her house and ended up as an inpatient in the hospital so she’s jealous right now.
So, once I get a tetanus shot and a splint, we head out. We stopped at Antonios Pizza and Ice Cream at the 25th Street Shopping Center and order a pesto pizza. We haven’t been there in 2-3 years because… Covid… life crazy… lazy… Dominos is cheap and easy and there is an app.
They recognized us! They recognized us, our order, and to prove it they pointed to the booth we used to sit in as a family.
And they love Stitch Fix! The Teenager opened the box and ate a slice in the pizzeria while we pointed out what Stitch Fix clothes we had on our body. And then I had to show off and fold my sweater into a 9×9 square.
It was the kind of small town encounter I love about our urban corner of the universe.
Angel Ackerman 