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.
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.
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.
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 returned to work today– after missing a couple hours Friday and all of Monday and Tuesday. I was nervous about undertaking the day with my strapped up tender fingers and sore body. But, to make the transition easier, today was the weekly safety team meeting and we had a special electricity training.
As one colleague said, the gist of it was, don’t touch an exposed live wire, don’t touch an exposed live wire in a puddle, and do not touch a person touching an exposed life wire.
It was a nice way to spend 25 minutes at 7 a.m.
Then at safety team I had the pleasure of hearing about the two incidents this week in the building, one paper cut at women’s outbound stylecarding and a “first aid incident” where an associate lost her balance and fell down the stairs. Yes, that would be me.
After that meeting, the safety manager who administered first aid on the day of the incident asked me how my finger was doing and I explained what the ortho had said, and that it wasn’t broken even though it looked broken on the x-ray… and he looked rather horrified.
“I had no idea,” he said. “I thought it was just a little cut.”
So did I, I replied, until I worked all day and it swelled to twice its size and turned really purple.
The warehouse supervisor who used to oversee our evening shift (the one present on the day of my fall who looked a tad panicked when she saw me after the fall) asked if she could speak with me after my meeting about my incident and the questions it raised for everyone.
Apparently, there has been some discussion among the management team about whether or not my employer should force me to file a workmen’s comp claim regarding the injury. In the end, they decided to leave the matter to me, assuring me their support regardless of my decision.
Technically, because it happened on their property as part of the work day, they bear responsibility, but because the fall stemmed from my pre-existing condition that also caused two more falls since then, no one on the management team wanted to make that decision for me. Because if I file a workmen’s comp claim, the company then controls the treatment of my injury and, in this case, this would mean my finger. But, because the injury is part of a larger whole, that would mean ignoring my balance and recent pain issues.
“You seem to have a really good relationship with your providers,” she said, “so we didn’t want to interfere with the care you receive from your primary care provider.”
Speaking of my primary care provider, I will be speaking to them tomorrow. And I’m assured that any time I miss due to appointments for this incident will not be included as part of my attendance record, even if that means I need physical therapy or hand rehab. Speaking of hand rehab, they have not returned my call.
All in all, it was a good day. I think I did 102%. But I have been encouraged to take advantage of more FMLA intermittent leave. And they are curious to see what legal will say about a service dog, as to their knowledge, no one in a warehouse has brought up the issue of a service dog.
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.
Angel Ackerman 