I am so sick of medical-related posts. I want to get back to the silliness I enjoy everyday, and straighten out the mess my finances are in, and get back to work before the mortgage is due. But there’s so many questions I have– and have to admit– that idea of taking another fall like my last one is terrifying.
My normal, stumble-over-my-own-feet kind of falls are scary enough. But these… the sensation of suddenly being in the air with no tactile connection to the mechanics of the fall… are different.
The brain fog is still heavy, and I think most of what I am struggling with now are side effects from the beta blocker, or potentially hormonal, and I thought I had a TSH check today at my local quest. It was part of why I didn’t go back to work today, I wanted to discuss the heart monitor, my TSH levels and my orthostatic hypotension with my doctor. (Orthostatic hypotension means blood pressure that drops too low when you recline or lie down.)
I’m going to tell the story a little backwards…
Tuesday Morning
I originally set my alarm for 4:45 a.m. I planned for today to be a practice wake-up day for work tomorrow and I have a 6:40 a.m. appointment for a TSH blood draw at Quest. Then, I would hopefully discuss with my doctor today the state of my orthostatic hypotension (confirming that it is orthostatic hypotension and that I am not at an increased risk of falling since my work involves standing all day), the results of the Zio heart monitor and my TSH levels.
The cardiologist sent his report last night — the Zio patch heart monitor did not detect any afib, and he would like to keep me on the beta blocker as long as I tolerate it.
And again, if I’m honest, I think the beta blocker is causing the orthostatic hypotension, but in general, I think it has helped calm my system down a lot.
I woke at 2 a.m. I’ve been drinking electrolyte water in the evening and in the morning as suggested by my doctor, which meant it was 2 a.m. and I really had to use the bathroom. But, being the neurotic little patient I am, I had to take my blood pressure to see what happened when I moved around in the middle of the night.
When I woke up, my blood pressure was 96/56, when I arrived in the bathroom it was 113/80, after I relieved myself it was 118/74, and when I woke up at 5:45 a.m., it was 100/56. I had changed my alarm in the middle of the night, forgetting I wanted to take a shower and do stuff. When I realized in the Quest parking lot that my appointment was for tomorrow and not today, my blood pressure was 111/73. So I came home, made coffee, had breakfast (see the brioche bagel at the end of this post) and my blood pressure dropped to 103/64 by 7:30 a.m.
I am trying to incorporate more of my stretches into my daily activities, especially when transitioning from standing to sitting and vice versa. My physical therapy is going very well, but I feel bad that I don’t keep up with it nearly enough at home, but I have so much on my mind with my hand, lingering bruising from the fall which I can’t believe it’s been a month, my blood pressure, and lightheadedness.
Luckily, I try to get to the gym between physical therapy appointments and I try to do balance exercises and finger stretches as part of my day-to-day.
Some random fun food stuff
Yesterday, the Teenager gave me $100 and asked if I could do her grocery shopping for her. Because it’s Easter week, a lot of her pet sitting clients need her. She has almost 20 visits a day most days. I went to Grocery Outlet and bought things I knew she would eat and from her list. For breakfast: muffins, Morningstar breakfast patties, Danish banana pancake balls (which are so good), brioche bagels, orange-pineapple juice, Cookie Crisp, milk. For lunch: salami rounds from Hillshire, snack packs of cheese and meat, precooked bacon, pepperoni sticks. For snacks: salad fixings, bananas, clementines, baby carrots, hummus, diet sodas, Dr. Pepper, and sweet tea. For quick dinners: ramen broth, spaghetti, pasta, red sauce, sliced black olives. My total came to $84. Teenager said she might send me grocery shopping all the time.
The banana pancakes are very good in the air fryer.
I had one of the brioche bagels. They are fiendishly soft and freakishly just a brioche with a hole in the middle.
7:30 a.m., Wednesday, April 5: Yesterday I was discharged from hand rehab with John at The Institute for Hand and Upper Extremity Rehabilitation. My hand strength in my right hand is stronger than my left hand, so even though my pinky doesn’t quite have all the functionality it should, John thinks with proper use and exercise at home I can handle recovery.
As John said, implying that he could trust me to monitor and invest in my own hand health, “with everything you have on your plate, this is a mere flesh wound.”
Indeed.
With that, I had my last session of rolling and smashing silly putty and twirling balls in my hand. Really, hand therapy is not that far from children’s play. As an adult, there’s not enough activities that involve silly putty.
After a weekend of high blood pressure, my body suddenly feels low– and my blood pressure is on the low side, even after coffee, and I’m light-headed and feel as if my blood sugar could be low, despite snacking on a slice of fresh pizzeria pizza (I found that real pizza versus Dominoes or frozen varieties does not have the sodium and preservatives that impact my numbers) when I took my evening dose of Lopressor. I ate breakfast, and that helped some, but not enough. I also had an 8-ounce glass of water.
So, as my primary care doctor is signing off on me returning to work on Monday and we’re still waiting for my cardiologist’s report, I’m terrified that something might happen today. But I don’t want to manifest my own misfortune. It’s interesting to note that today was supposed to be my first day back to work, but I still have physical therapy during the day this week, and I felt better knowing my cardiologist should have the info he needs by then in case we need to make adjustments to my treatment plan.
The manufacturer of the Zio sent a push notification to my phone that they received my device and will have the data to my doctor soon.
My left hip, according to my physical therapist, was tight Monday, and now my right hip is giving me issues, the kind of issues it often has when compensating for the left hip.
I should have taken a shower last night, but I thought it would be nice to shower in the morning, but then I remembered I have physical therapy and the gym today… but I might have to take two showers today. I need to see if I can shake this feeling of brain fog and lightheadedness. By then, it will be 8 a.m. and I can call my doctor’s office. They are next door to physical therapy so maybe one of the medical assistants can take my blood pressure. Because my neurologist would be mad at me if I ignore this.
8:20 a.m. After a hot shower and exposure to The Teenager’s work drama– not being able to get into a client’s house to feed the dog– my blood pressure is now high. So I don’t know whether to call the doctor or not. I put on my sports bra inside out and my shirt backwards.
8:30 a.m.I called the doctor’s office. They won’t let a nurse or medical assistant take my blood pressure because they would like a doctor there because of my history. I have an 11:15 a.m. appointment, directly after my physical therapy, with one of the residents, I think, because it says my doctor’s name but that’s not what she told me. But it usually shows the resident’s names so we’ll see.
9 a.m. I decide to play with the Stitch Fix style algorithm before leaving as I only have a couple minutes. This will be important later… because brain fog. That was another symptom I’m struggling with– I put on my sports bra inside out and my shirt backwards.
Brief interlude while I am thinking of it. My hospital EOB came yesterday, as did updates as to some of my other medical visits. It’s obscene to see the battle between medical providers and private insurance companies. When did this become an acceptable model of business? The hospital charged my insurance company almost $18, 500 for one day of services. The insurance company pays a pre-negotiated rate of $2,500 and I get bill about $300.
In a similar fashion– the medical office billed the insurance company for the resident who so patiently spent 30 minutes removing three stitches from my face. It was itemized as “surgery” and the provider billed $66, of which the insurance company paid $13. And left $1.50 for me. So this poor resident, who worked her way through medical school and had to dig the stitches out of my scabby face, isn’t even worth $30/hour?
9:40 a.m. I arrived at Physical Therapy to sit and read my book until my appointment. Yesterday, I finished Susie Bright’s How to Read/Write an Erotic Story and I have every intention of finishing Suzanne Mattaboni’s Once in a Lifetime today.
10 a.m. or there-abouts: physical therapy with Jimmy, instead of Eric, because it’s Eric’s birthday, and his colleagues suggest that this might not be his first thirtieth birthday. I am also informed that the goal today is to poke fun at Eric as much as possible because he’s not there to defend himself.
Summary of Physical Therapy: I worked hard and found myself pushing and having good balance despite the issues with my quasi-lightheadedness. As usual, my left side is tighter than my left, but I notice as the day goes on my discomfort on the right seems to be correcting itself.
I also told my physical therapist about The Institute for Hand and Upper Extremity Rehabilitation and my mallet finger that I did last year, right before Easter. I explained how I ruptured the tendon pulling my socks off. He’s now afraid to take his socks off.
10:40 a.m. I stop at the car to update my notes and drink some water. This massive Audi SUV is parked next to me, requiring that I turned sideways to slip into my car. I take my blood pressure: 122/71.
10:50 a.m. I walk down to the primary care office, and finally put the facts together that between the physical therapy office and the family practice, there is a pediatrician. That’s why I always hear screaming children though the wall. I use the rest room and open my book.
11 a.m. My doctor’s assistant takes me back to the exam room, and confirms that I will be seeing my doctor. She’s the same person I correspond with through the portal, and who fills out all my paperwork with the patience of a saint. She doesn’t weigh me and this disappoints me because I think all this healthy eating has resulted in a smidge of weight loss.
If we’re honest, I feel silly. My head still doesn’t feel right, but I’m fine… I mean I’m going to be cautious but it could be so many things: blood sugar, blood pressure, the beta blocker, allergies or even the pollution from the major industrial fire a mile away yesterday or heck even stress… but the neurologist said… Everyone in the office, including the doctor, reassured me that I did the right thing since no one wants me to fall again.
My blood pressure was 120/77, which is pretty darn close to my car reading so that proves that my monitor is reading my blood pressure accurately and the presence of the doctors does not cause my blood pressure to increase.
Alpha Books J Journal
11:10 a.m. the assistant leaves and I open up the final pages of my book. And I finish it in five minutes.
11:30 a.m. the doctor arrives. He sees my Alpha Books J journal in my lap and starts asking questions. Then he asks why I am there– that my chart just says “high blood pressure.” I explain that no, it’s actually lightheadedness that started with low blood pressure but hasn’t abated since my blood pressure returned to normal levels, and that the neurologist made me promise not to ignore symptoms like lightheadedness.
I explain that I got out of bed a tad clumsier than usual, after ten minutes of trying to force myself up despite 9.5 hours sleep, and I just attributed it to stiff cerebral palsy legs. But as I went downstairs and turned the lights on, I realized I was a tad lightheaded.
I poured a glass of water, took my blood pressure and my meds, and made a cup of weak (for me) coffee and finished my water and had fruit and toast.
I pass the doctor my list of blood pressure readings and tell him my first of the day was 102/68, followed by 108/65 an hour later.
He peruses the list I gave him and asks, “do you have some fancy blood pressure device that takes your blood pressure every hour?”
“No,” I say. “I’m just neurotic.”
He chuckles. “It’s not bad,” he says. “It gives me data to work with. I have patients I can’t get to take their blood pressure once a day.”
“I know you’re going to ask me what happens in certain situations, so I just want to see if I can anticipate the questions so I have the answers. Like there’s definitely a difference when I eat pizza from the local pizzeria that uses real ingredients versus Dominoes.”
He mentions I should track my pulse. I told him I look at it when I take my blood pressure because the neurologist mentioned it but I haven’t written it down. I haven’t noticed anything. And I didn’t tell him about the symptom diary I started. But I did come home and add heart rate to my iPhone tracking info. I really need an Apple Watch. Okay, I want an Apple Watch, but I refuse to consider buying one until my business computer is paid off and I replenish my savings and pay off the credit card bills I ran up during this hiatus from work.
He performs some basic exams, and has the nurse take my blood pressure lying down, then sitting, then standing up. If the low pressure is caused by gravitational pull on my body, or something like that, my blood pressure will drop as I quickly force myself upright.
My blood pressure spiked (142/100) suggesting that I tensed, which I did, because the sudden movement made me feel like I was swaying. And I braced my muscles, afraid I might fall.
So, the next test in our journey through Angel’s recent career as a face-diving professional, is to half the dosage of my Lopressor. My doctor thinks he found a note made while I was in the hospital that the IV medication made me dizzy and that’s why they switched me to the oral tablets. I don’t recall this, but a lot happened that night… so I asked The Teen much later, and she said no, my memory is correct. I read the note the doctor found, and I believe, though I could be wrong, that the real problem is doctors have no skill at writing and this leads to misinterpretation. Ooooh, maybe I need to start a “Clearer Writing Styles for Doctors” workshop.
And since my echocardiogram was perfect, and he reviewed it there with me, but I’d already read it, he wondered if the beta blocker was necessary at all (ironic since he was trying to get me on blood pressure medication for the last two-plus years) and/or if the Afib was an isolated incident. I dispute this theory, because I had two unexplained, nearly identical falls within two weeks.
My doctor reduced my beta blocker in half, which meant I had to remember to go buy a pill splitter because I already have the tiniest pills I ever saw. And he also suggested taking some sort of hydration beverage into my bedroom– a G2 gatorade or a Propel– to drink before getting out of bed.
And he closed with something like, “these are the kind of things I have to tell my patients who are 70 or 80, but unlike them, you’ll listen.”
Then he asks, “when is your next appointment?”
Not until August, I reply. He looks to me in disbelief. “I want to see you before that.”
And he sends a note to the cardiologist that he reduced my beta blocker and asks him to review the data from the Zio patch. The same Zio patch that just returned to the manufacturer yesterday.
I mention I will see the cardiologist May 5, if that matters when scheduling our next rendez-vous.
“I want you to check in in the next couple days,” he directs me, “and I want to see you next week.”
“How about April 20?” I ask. “It’s in the middle of now and April 5 and I already have to take the day off for some CT scans at the hospital and physical therapy.”
I’m going back April 20, at 8:30 in the morning, to meet with one of the residents. I didn’t think to check which one.
12:10 p.m. I leave and head to my friend Maryann Ignatz’s house to bring her some books she ordered and visit.
2 p.m. CVS. The computers have gone insane. I don’t think this will impact me as I peruse the aisles. My list is simple: a better lotion for scar care, an electrolyte drink, a blood pressure monitor, and a pill splitter.
Now, I have a borrowed monitor and I’d rather have an Apple Watch connected to a wireless monitor cuff…
And the only thing on the list today I need right away is the pill splitter.
So I find one for $8.49 and I have a 40% off coupon that expires today. I also find Propel dry powder packets that go into a water bottle– I think $3.49 for ten packets. On Amazon, the already constituted Propel Water in the same flavor costs $8.38 for 12 bottles, which is 70 cents a bottle or twice the price. I even placed one of my reusable water bottles by my bed, and I picked one with a screw-on lid designed for my bike so it’s less likely to spill.
The blood pressure monitors start at $62, and the $62 one provide $10 in Extra Bucks, but I don’t want to spend that much now.
And the only lotions “better” than the ones I have at home start at $10 and the ones specifically for scars are $20.
And on top of all that, the system doesn’t really register my Extra Care card, so it says I was logged in, but it didn’t use my coupon.
I never pay full price at CVS.
And we’re not going to talk about the fact that they were sold out of jelly beans.
3:30 p.m. I make a run to the bank and take the dog for a trip to Dunkin’ for Munchkins. Oh, and the teen. I eat too many jelly munchkins, drink a cold brew and eat one of their salty processed sandwiches, their completely not-a-Grilled Cheese with their sun-dried tomatoes. Not worth the money I paid. My blood pressure does not change. I cancel the gym for tonight because I still don’t feel stable.
I come home and I cut a pill. The Teenager then insists she can do it better and that I’m sloppy.
vegan tofu salad with lime dressing and cucumbers
4 p.m. I spend some time with my cockatoo, and tend to some self-care details and start laundry.
6 p.m. The Teen and I make salads with tofu nuggets and romaine and cucumbers. The Teen devours heaps of romaine and cucumber. With a homemade fresh lime dressing.
I mention to the Teen that KFC has nuggets now.
“Really, Mom?” she protests. “You expect me to eat tofu after mentioning KFC?”
And then I proceed to drop the knife several times while chopping vegetables. I’m amazed I still have all my toes. Brain fog is so real.
6:45 p.m. I text the neurologist just to update her.
7 p.m. I place my last load of laundry into the dryer and find a half pill of my beta blocker on the table.
I call the teen’s name.
“Did I not take this with dinner? Did I miss my mouth?”
“I doubt you missed your mouth,” she reassures me. “It probably just slipped out of the bottle.”
“I could count them,” I say.
“And if there is an even number, you fucked up,” she says.
It was an odd number.
7:30 p.m. I finally retire to my room hoping to start a new book as part of my pre-bed, no screens ritual. I make the bed, feed the cats, put my Propel packets in my drawer and organize my lotion (for scar massage on my finger and my face) and my water bottle. But first I have to finish this blog entry. And I notice– to my chagrin– that somehow this morning I changed my next Fix from May 18 to April 18. Hopefully I can change it back before the stylist grabs it, because my charge card needs to take a little vacation from my wallet until I rebuild my rocky finances.
And that, friends, was my day. Louise the Tripod is snuggled against me, kicking me with her back feet and snoring. I still need to give the bird water, make my Propel, brush my teeth and massage my scars. So, if you think I’ve been over here partying during this short-term disability leave, I have not.
Yesterday was Monday and I went for my second full physical therapy session. I admitted to him that the weekend got so crazy that time got away from me and I didn’t do as many stretches as the paper told me to. My therapist told me that was okay, as long as I was trying to walk as we practiced on the anti-gravity treadmill and kept stretching my hips to fight the internal rotation.
And I had another great session on the treadmill.
I also did extensive editing before and after physical therapy, to the point where I think I will have Larry Sceurman’s short stories ready for his approval tomorrow and I don’t see any reason why we wouldn’t send them to Gayle for design by early early April.
Later in the day, I went to the gym where we did primarily back and shoulders but also hip and core. That right hip, in a very specific location, was very unhappy with me. It’s something I’m going to have to look into with my physical therapist and my chiropractor and maybe my neurologist. My fitness coach Andrew wondered if it might be my IT band.
I noticed my fingers have not been tingling as they had.
I texted Gayle last night–if I made it up the stairs and to bed I would have earned my “fourteen days without a fall” graphic.
It arrived today.
I went to bed at 8 p.m. last night but couldn’t fall asleep until 9. I woke up around 2 a.m. and cuddled Louise for a while. I think she woke me, and I can’t help but wonder if she senses something about my heart rhythm. I heard my neighbor start his car at 5:45 and forced myself out of bed as my alarm was due to go off at 6.
I was exhausted. My blood pressure was perfect– 115/76– which made me think I should skip the morning coffee. But I needed to drive about 20 miles in morning highway traffic. I needed my wits about me.
A handful of peanuts, my SSRI, a beta blocker and a muscle relaxer, and a cup of coffee and I was good to go.
Hand therapy is always fascinating. Today I did the exercises I did last time (read about those here) and squeezed some putty. My therapist John took some measurements of my finger, and other than the swelling, there is only one angle that still has limited motion. So he gave me a piece of elastic and a safety pin to try and stretch it.
After hand therapy I called Nan, as I had promised to take her to the bank and to CVS. I had run out of Zyrtec the day before, and CVS had texted me and said my SSRI refill was ready. Still no word on my baclofen, the muscle relaxer prescribed by my neurologist. She had called me in late February (mere days before my first fall) and said she was sending in a prescription with six months of refills. The next day, CVS texted that they had received the prescription but the medicine was out of stock. I never heard from them again. I am almost out, but haven’t been taking it because they didn’t give it to me in the hospital.
I stopped along the way at Panera to use the bathroom and grab a cookie for breakfast. Panera makes an amazing oatmeal cookie with dried blueberries and raisins. When you consider the sodium, calories, sugar and protein, it’s one of the healthier choices. And it’s delicious. So I got one for me and for Nan.
I almost got back on the road forgetting my cookies, because I ran into a fellow library board member who called to me from across the store.
Once I picked Nan up we had a great time visiting her usual teller at the bank, whom we hadn’t seen in a while; going to the Dollar Tree (or as we like to say now the $1.25 cent store) for Easter decorations and cookies, where we ran into someone who lives in Nan’s old apartment building; and the most magic place of all– CVS.
We went to the pharmacy first. My SSRI was free, and I asked about my baclofen. They said my doctor canceled the order. I showed them the text, and I was told that was very weird and that I should call my doctor. I wonder if they asked her for a refill on the old prescription at the same time she sent a script for the new one, so she said no to their request, and they canceled both.
Nancy needed ibuprofen, a hair barrette and some Lysol wipes. I needed allergy medicine.
I had a coupon for $10 off 90 count Zyrtec or the house brand was on sale buy 1 get 1 50% off, with a $4 off coupon. I got 2-120 bottles for $40-something, versus the $60 the name brand would have cost for 90.
CVS brand pain relief was on sale, the big bottle was $19.49 and the smaller bottle was $14.49, but we had a coupon for $4 or $5 off $15 purchase, AND the smaller bottle had an expiration date of this summer versus late next spring like the bigger bottle. I had a 40% off coupon. So I thought that could cover the barrettes. The Lysol wipes were also on sale and we got the 35-count, and we had a 40-cent manufacturer coupon. (All the coupons came from the CVS app.) Nan’s total started around $32 and she ended up paying $19. In other words, she got everything for the original cost of the ibuprofen.
She loves accompanying me to CVS.
I brought Nan home, and when I got to my house I discovered that MY FIRST FIX ARRIVED FROM THE BIZZY HIZZY! I have been waiting to get a fix from Stitch Fix for 12 years! Joan opened it with me via Zoom.
I then ate a massive bowl of falafel and vegetables. I sent out a newsletter on Substack. Read that here. And attended a library board meeting tonight.
And don’t forget: Darrell Parry is hosting (and served as judge) for the Jean Corrie Poetry Reading & Ice Cream Social at Lafayette College Thursday. See the Substack or Facebook for details.
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.
The Teenager and I left for a bizarre mini-round trip down to the atrium outside the Bass Pro Shop at the dying Harrisburg Mall. I say dying, because the folks at Susquehanna Service Dogs reported that they will soon have to find a new spot to do their evaluations as the mall will soon be razed, except for the Bass Pro Shop.
The mall provides an open but indoor public environment for service dog trainers, handlers and dogs themselves to work with people who may wish to pursue a service dog. These dogs are commitments, and the idea of navigating in the world with a large dog can be overwhelming.Therefore, it’s logical to let people considering a dog the opportunity to see how it feels, in public, to work with a dog.
I had to bring a support person with me today, and that was The Teenager. I worked with the trainer and the dog, Katydid, the same dog I worked with at my in-person interview in late November. The Teenager walked behind with the case manager, who asked questions about what I could use in a service animal and filmed my interactions with the dog.
I thought my right leg was being obstinate, it felt stiff and rickety. The Teenager reported that the right leg looked great, even faced the correct direction, whereas my left leg “looked like a worm on a string.”
Everyone had a great time, and I walked about 4,000 steps with my friend, Katydid, exploring the different between leash walking, strap walking and a hard harness. The hard harness makes it really easy to feel my place in the physical space and match the dog’s gait with more confidence than with the leash or the strap, but it may also be just as good to have a thicker, sturdier strap on the dog that could give the same feel as the harness and be easier for the dog to wear. And I bet over time, as the dog team works together, both the dog and the handler develop a rhythm.
The dog can be trained to counterbalance, to retrieve things, to find help, to empty the dryer, to bring your phone, to help you up, etc. Your dog can learn where your first aid kit is and to bring it when you fall and need to clean your wounds. It’s truly amazing to see these animals excitingly perform tasks, especially these ambassador dogs who will gladly work with anyone who has treats.
The Teenager and I made an adventure out of the day– stopping at Sheetz for drinks, where we discovered this Sheetz had an entire aisle of slushy machines. We loaded up on slushy and sodas, ranging from cherry Coke Zero to Mango Pepsi to Cheerwine.
The mall itself also fascinated The Teenager, with its taxidermy animals and its creepy trees in the Enchanted Forest children’s area. The creepy tree looked eerily similar to the one in The Teenager’s bedroom.
We also visited 2nd and Charles where she read The Unofficial SIMS cookbook and had to buy a new floormat for the porch, a Dungeon and Dragons mat that reads, “Roll for Initiative.” She is her father’s child.
And then on the way home we stopped at Cracker Barrel, because that’s just the tradition when this family goes on any sort of road trip. I think we had the sweetest waitress ever. And The Teenager picked out a gigantic jawbreaker and a roll of Bubble Tape bubble gum that came with a label maker emoji toy. And I picked out the butterscotch peanut butter cups which I shared with The Teen in the car.
So someone I know, who shall remain nameless unless she outs herself, tagged me in this Facebook post:
She invited me to consider it, which I would if it weren’t two hours every Friday for six weeks.
Speaking of falls, the teenager asked for some bathroom toiletry storage devices so I bought these:
The wall-mounted shelf is ridiculously sturdy. All came from Target.com.
I “treated” myself to some grip-circles to reduce the likelihood of falling. And they are pretty.
The sight of everything organized made me happy. As did dinner.
Dinner was Banza chickpea rotini with Hungryroot Alfredo sauce, fresh spinach, my homemade roasted tomatoes from the farm and chicken bruschetta burgers broken into “meatballs.”
Sometimes, these entries feel repetitive. I hope they don’t feel like that to you, the reader. But, in many ways, life is certainly repetitive.
Whether it be the old house always needs attention, the dog is always sick, a struggle with weight, mental or physical illness, a bad boss or money problems, each of us seems to have that troubling thing with which we grapple.
If you don’t have that thing, I would love to read your memoir (or maybe not— I might throw it across the room).
So if you keep stopping by or my blog posts keep popping up somewhere in your life, I know I’ve been talking about cerebral palsy a lot. It’s that thing for me, especially right now, as I topple through the second half of my forties.
I have spend most of my life— until the last decade really— denying that that thing made my life difficult. I laughed off accidents, tried to hide my legs, carefully picked my shoes and didn’t talk about it.
But also, and very important in the chronology, until that point, it hadn’t really been an issue. I occasionally feel down, scraped some knees and hands and laughed about it.
But then I started breaking bones, having issues with my spine and hip, and when I fall now, it’s more serious that wash up some scraped flesh and laugh it off.
So, if you don’t already realize, these blog posts are meant to be informative for those seeking situations involving demiplegic spastic cerebral palsy, but also chronicle my acceptance and journey into how to live my life with my disability instead of pretending it doesn’t exist.
We’re learning to co-exist, cerebral palsy and I, in a way that allows me to stay active, be whole, and keep myself safe.
On Monday, I had an uncharacteristic fall at work that seemed to come randomly out of nowhere. I wrote about it here. It scared me because it didn’t feel like my other falls.
I left work at 11 a.m. and came home to rest and write and emotionally decompress. I was scheduled to go to the gym at 6 p.m.
I texted Andrew, my strength and fitness coach at Apex Training. He moved my session to earlier in the day and The Teenager and F. Bean Barker accompanied me to the gym to study my walking and confer with Andrew about the possibility of a work out.
F. Bean Barker, hard at work
We scarcely made it two blocks and The Teen says, “Holy Shit, Mom. You’re right knee is hitting your left leg. You can’t feel that?”
She proceeds to mimic my gait. After half a block, she looks back at me and says, “No wonder your body hurts so much all the time, my hip is killing me already.”
It might seem mocking for her to imitate me on a city street, but for me it’s helpful since I can’t see myself move. That’s why I also like her accompanying me to various assessments as she has no problem telling doctors, “She’s having a good day today. When she’s tired that leg is much fuckier.”
She and Andrew studied me and they stared in bewilderment. They agreed that my left hip was definitely out-of-whack. The Teen left and Andrew got me stretching and doing a thorough workout that safely challenged the muscles that seemed to be malfunctioning.
As happened on Monday when I was achy, the workout made me feel better (which is why I didn’t want to cancel). I have never been good at not overdoing it, so the concept of “being gentle with myself” as my therapist says and “taking it easy” (both emotionally and physically) as my dad would remind me if he were still here, does not come easily to me. It’s especially hard because spasticity means my muscles don’t relax, so motion and exercise really can relieve my symptoms. But if my issues are joint and/or fatigue related exercise can make it worse. And I don’t often know which course of action will help.
I proposed this theory to Andrew: Since cerebral palsy means the brain and the nervous system can’t always communicate, I feel like sometimes those messages goes haywire. That’s when a good, supervised workout (where Andrew can guide my motions and direct me as to what body parts are doing unnatural things) helps my brain re-learn those communication skills. The muscles start to do what they should do because I am thinking consciously about how to do it, which helps the muscles get into the groove, and from there muscle memory takes over, and through doing, the brain resets.
Just my theory.
I woke up Thursday morning with minimal discomfort from my fall (and a new lump and bruise where I walked into a weight bench at the gym, which made Andrew feel terrible). I was looking forward to my appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center on College Hill in Easton, Pa.
Her daughter had joined her in the office. That made it interesting to have a different kind of conversation about my condition. I was a good example of two things: every patient is different and some patients have self-awareness about their body. And according to Nicole, I am one of the most self-aware in the practice. I was also an unusual example of someone who often “does better” in heels because of the fact that my heel parts (tendons? ligaments?) are so tight. I’m a toe-walker. My heels natural fall at an angle so a slight “kitten” heel replicates the shape of my feet.
I told Nicole about the latest “random” fall and this worried her, because she’s noticed (and I have tracked on a calendar) that my falls have gone from every six weeks to every two weeks. I mentioned that I applied for a mobility service dog through Susquehanna Service Dogs. She loved this. She agrees that I am the perfect candidate for this and that a dog could be a game changer.
I explained that I had mailed the application last week (Friday to be exact) and that The Teenager and Little Dog’s Mom had said they would write my letters of support (which means they support the placement of the dog with me and will take responsibility for making sure I take proper care of the dog once it is in my home). The Teenager planted the idea of a service dog in my head and it took some time, research and more falls to help me accept the idea that I have a disability and that a dog would be able not only to help, but would probably improve (and protect) my quality of life. The Teenager works for a local pet care company.
Little Dog’s Mom has known me for 20 years, trusts me to care for Her Ladyship Sobaka, and is a very responsible dog owner who takes often thrice-daily walks and has a magnificent fenced back yard. A potential service dog would have my small yard for potty breaks and the opportunity to run and play across the street at Little Dog’s house.
My doctor’s office assured me that if I bring the medical assessment form with me to my August 19 check-in, that my primary care physician would not only fill out the form but he would also do it while I was there. I asked my estranged husband of twenty years (and The Teen’s father), the president of the cat rescue where I foster (who left the social work business after decades to open Apricity Pet Care), and my therapist (who has known me for a decade and whose wife is a physical therapist) to fill out the personal reference forms. They all agreed. But back to the chiropractor…
Nicole also said to stand on one foot throughout the day to stabilize my leg muscles. Physical therapy is a fascinating science, the simplest movements can impose the greatest change. My blind friend Nancy discovered that a good portion of her shoulder pain and finger numbness stemmed from not stretching her neck up. As a blind person, she never has a need to turn her head toward the sky or ceiling or someone speaking from the stairs or seeking something on the top shelf by looking for it.
When her very clever physical therapist suggested stretching her neck regularly, her symptoms decreased significantly.
There it is. A lot of words. A lot of thoughts. I’m hoping this post will give you food for thought, reassure you that I am not totally a disaster waiting to happen and/or offer you information on my journey and hope for you if you need it.
It’s Wednesday. That’s my Friday. Wednesday is typically both hectic and easy at the Stitch Fix Bizzy Hizzy (Pennsylvania warehouse).
I’ve been performing at 100% all week— probably 106% yesterday— and my body has been protesting. A lot of dull pain and stiffness. I was honest with Andrew, my fitness and strength coach at Apex Training, that I have been struggling with my leg and spine.
So, Monday night, coincidentally the only day I worked a full-hour shift this week, I went to the gym but only focused on upper body. And I felt so much better and woke up as close to I get to ready to take over the world.
And yesterday, Tuesday, I excelled at work and came home stiff but still had an enjoyable evening. I thought it might be a good idea to take one of my muscle relaxers. It’s not a strong dose, but I hoped that they would ease the stiffness and allow by body to recover.
I woke up dragging, but managed to pull myself together. I had a cup of coffee and did what I could around the house. Put on my new cat leggings from Purr Haus. More about that here. (And I believe women of a certain age should not wear graphic prints on their bums and I am in that category. I have ventured outside my comfort zone.) Grabbed my lunch out of the fridge and left for work.
Went into the building, said hello to my friends and colleagues in the main break room. Walked down the central aisle with my big yellow purse and in the middle of the room, with open space everywhere and with no one and nothing near me, I face-planted onto the hard, austere floor.
On of my Monday through Friday colleagues came to help me up. I stood tall. Went to the cubby holes where we store our stuff and put my purse down. I took my water bottle and went to the bathroom and the water filling station.
I had just lived that scene in every underdog teen movie or television show. You know the one— where the dork gets tripped by the cool kid and throws their lunch tray across the room.
In the bathroom, I noticed that I ripped my brand new pants. I had scraped my knee but no bleeding.
I went back to the break room and couldn’t stop myself from crying. One of my colleagues, part of “the Sunday cohort” with me, gave me a light hug while I collected myself, assured me the pants could be repaired, and made me laugh.
When I got to my table for the day, I noticed that not only did my thumb hurt, but I had a tiny bruise under my fingernail.
I went to my supervisor and asked if I could leave at 11 instead of 3. The whole incident has me upset.
The falling is easy. Hell, getting up and doing what you have to is easy. But the fear is getting to me. The fear of when the next fall will come, how it will happen and what will happen to me clouds my brain.
Tomorrow I visit my hand specialist for my one month check up. Tuesday I see my family doctor/primary care physician about going back to work.
The increased sessions at Apex Training have shown me how weak my core has gotten as I struggle with issues in my S1 joint, lower back (retrolisthesis) and hips (femoral anteversion). But the uptick in training has helped me with balance, range of motion, and eliminating hip pain.
But I’ve also learned motion is crucial, as being active, on my feet and doing things is the only way to prevent intense stiffness.
And then after a great workout with Andrew at Apex, I fell on the way home. It’s the second time in a week I just randomly fell. Did I trip over my own two feet? Maybe. Did I just lose my balance? Maybe.
But these are the types of incidents I worry about, especially when I have a cast on my finger and work in a warehouse.
I fell a block away from home. I managed to throw myself into the grass instead of the sidewalk. That saved me scrapes and bruises. But I fell on my face and bent my glasses.
Luckily, the teenager could bend them back.
This time, the disability leave from work, is about gaining strength, learning more about my body and giving myself time to heal. But it (more of it than I expected) also is teaching me about the balance between fighting and surrendering.
Tonight was the last official night of “Midnight Society” at the Stitch Fix Bizzy Hizzy and they closed the warehouse at 7:30 p.m.
I say last “official” night because I just heard from my supervisor (at least until the new shift starts Sunday) and my favorite security guard/philosopher that there are a handful of people who can’t transition until after Christmas— and Stitch Fix will let them continue working their traditional hours until then.
That was a really nice move on the business’s part. Too nice in my opinion. I have squeezed a couple months of doctors appointments, tests and physical therapy into two weeks. So part of me is a little jealous.
We start our new work arrangement Sunday.
In other news, my blind friend Nancy and I both had physical therapy today. And Aîné and Brigid of the Celtic Pride got spayed so they are ready for adoption!
But back to physical therapy. Nan and I went together. She’s having issues with her shoulder and numbness in her finger.
I have pain in my spine and fall a lot.
I had to ride a stationary bike for eight minutes. She warmed up on a hand contraption.
I did my Cobra poses, and my physical therapist did that thing where he presses on my spine as if pushing it back into place.
I did deadlifts with a 20 lb kettlebell. I had to lay on my stomach and bend my leg at the knee and lift it off the table. That was harder than it sounds.
I stood on a soft cushion square and moved my leg out using my hip while keeping my knee soft. I also did that kicking back.
I did bridges.
I took a giant ball, held it to the wall with my back, and squared as low as I could.
Meanwhile some teenager stood on a balance ball on one leg, tossed a ball onto a trampoline and caught it ALL while standing on one leg.
I can stand on one leg for nine seconds.
On the floor.
This kid was standing on a ball meant to destabilize you.
And throwing a ball.
I am in total envy.
Meanwhile Nan was teaching the staff to read Braille and how to use a white cane.
And the staff was heartily confused at the fact that friends would come to physical therapy together.
After physical therapy, I turned to Nan. “You what to come to my house for grilled cheese?”
Her answer was a hearty yes. I made hers with Colby Jack, Cheddar and Lebanon Bologna and mine with habanero cheddar and Vevan vegan mozza-melts.
The mozza-melts taste and melt like real cheese, but sadly they have no protein. At all. So while they are a cruelty free version of cheese, they have no nutritional value.
Angel Ackerman 