Well… That’s a first

Every week, usually during the weekend, I walk down to my local CVS. It’s about a half mile away, and between my daughter and I, we usually have a prescription to retrieve. And if you buy items at CVS regularly, it triggers a variety of digital coupons that can have a domino effect and yield good deals.

Today I had about $5 in ExtraBucks, plus a $2 off a $12 purchase, plus some digital manufacturer coupons in the CVS app, and some product-specific CVS coupons that I planned to add to a 30% your full-price purchase coupon.

I bought a 90 count of Total Home kitchen trash bags (which were similar in price to a 100 bag box at Target), plus eight-gallon trash bags that were expensive for the number of bags in the box. BUT– I had a $5 off $15 coupon for Total Home trash liners AND the 30% total full-price purchase coupon, and the $20 box of 13-gallon bags would guarantee I hit the minimum after the 30% reduction.

Eva needed large bandages and some first aid cream, which was also full price. My bill came to about $43 and after coupons and discounts was $20.31.

On the walk home, I stumbled walking up my least favorite hill. I could feel my feet dragging but just didn’t have the strength to fight them. Here’s the odd thing– I lost my balance because my toes were dragging upward along the sidewalk. My arms went out, and normally at this point I do a bit of a corkscrew roll to minimize the damage as I attempt to fling myself onto grass.

But today something very unusual happened.

I recovered my balance. My hands hit the ground, but my body bent more like a hinge instead of crashing into the concrete. I didn’t even scrape my palms. I bent; I stood up. I walked home.

Never in my life have I recovered my balance once I put out my hands and braced for the fall.

Never. Ever.

Now, when I got up this morning, I gave myself a stern talking to because I did not go to 8:30 a.m. Boot Camp with Greg at Apex, my favorite local private gym. My back hurt and I was groggy and a host of other excuses. So I made myself promise that I would walk to CVS.

I need to do some straight leg deadlifts and other exercises for my back and legs but I’m not that motivated yet. And I stumbled at home trying to walk around the vacuum cleaner at the bottom of the stairs (Eva got a new vacuum cleaner, well, her third of the same model) and tripped after the CVS trip over a huge cardboard box right in front of my eyes. But neither led to a fall. Let me repeat, neither led to a fall.

I’m having more leg, hip and knee pain than usual, perhaps due to the dampness, the rain and the drop in temperature. Who knows?

I checked my phone and before I left for CVS in the first place my walking asymmetry spiked to 36% and before and after the near-miss fall registered at 2%. Now, let me reiterate (as my favorite doctor would say) that these phone figures are far from precise or even scientific, but they do seem to accurately reflect trends in my gait. My fall risk/walking steadiness consistently gets classified as “okay.”

But when you look at the last six months, you can see a drop. And while both are still within the range for “okay,” I wonder about it.

And for the record, last night, at my four-hour shift for my very part-time job that has somehow become 23 hours a week (thanks to some staffing issues and I can understand that), I worked at least five different positions.

I did some standing still, then a lot of walking around across a nice stretch of distance, and then I stood still some more until 2.5 hours into my shift, I was asked to cover a break delivering food inside the restaurant. At the beginning of that change, twice over the first five minutes, the asymmetry registered as seven percent. Did I notice it? No. Did it happen beyond those two instances? No. And after that 30 minutes, I went back to a position where I primarily stood still but also did a lot of stocking which meant moving to various storage locations and lifting boxes of various weights.

And the pace of the restaurant means my heart rate is usually between 120-130 for my whole shift. I noticed last night it reached 172 bpm. That’s my maximum heart rate at my age! My heart is supposed to be physically incapable of doing more than 170 bpm.

As I promised my doctor, I have been taking my allergy medicine, watching my blood pressure and taking the appropriate prescriptions and taking my baclofen. I’ve been good about taking at least 10 mg before my shifts.

PS– the anecdotal evidence is mounting that the Twinings Sleep + vanilla and cinnamon tea with melatonin not only tastes like a baked good, but it also increases the amount of deep sleep I get. I will still keep Traditional Medicinals Valerian in my rotation, but Twinings is a definite win.

PPS– I ate almost a whole can of salt & vinegar Pringles last night and gained a pound overnight. And because of how Omada measures your success as an average of the whole week, they have my weight listed as 163.5. It was 161.5 yesterday and 162.5 today.

The Day the Garbage Trucks Swarmed

My shift at the restaurant Thursday evening went much easier than Wednesday— though I couldn’t bend and reach the floor and I took a lot of Baclofen.

And my left hand strangely hurt last night in the fifth metatarsal, in the same spot where I broke my right hand what had to be a decade or more ago.

Today I slept until 8 a.m. when my Goffin’s cockatoo, Nala, screamed, probably concerned that I died in my sleep.

I stripped my bed, started laundry, drank some coffee and used household chores as my warmup for a home workout. (After clearing my business email and banking stuff.)

The scale showed another pound gone. Soon I might hit the ten-pound mark.

Nothing like 30 or 40 pound cat litter boxes to practice farmer’s carry. And five trips up and down the stairs gets the heart rate up.

I did a pretty solid shoulder workout today, 22 minutes of just weights— including push press, dumbbell row, shoulder lateral raise.

Did some more wash, handled some more email and spoke with one of the Parisian Phoenix authors about a presentation we have been invited to give at Hellertown Library.

I did the dishes, started cooking some chicken livers for the dog, and made myself a big salad with lots of carrots.

I went to Panera for a while to work on my background material for the stories I am writing for Armchair Lehigh Valley regarding the May 20 primary.

And I got my schedule from the restaurant— 4 days in a row and 22 hours. I messaged my boss on Slack to warn her that that may be a struggle for me. She hired me so quickly I never had a chance to tell her about my cerebral palsy. She hired me to work 10-12 hours a week in the dining room, so I didn’t think I would have to.

But here I am, working 20+ hours all over the place.

I wasn’t sure how to bring it up, and I feel it’s better to do these things in person, but at least on Slack there’s a paper trail.

It turned out to be a great conversation. One we will continue in person. As I suspected, she’s short-staffed and I can really use the money so I didn’t want to complain.

Eva picked me up and we stopped at Grocery Outlet. And as soon as we got home, three garbage trucks swarmed us and our house.

I made a vegetable lovers DiGiorno thin crust pizza and split it with Eva and watched some more of The Pitt. Then I came up to make my bed, clean litter boxes, feed the bird, and get the cats water before my shower.

Now it is almost 8 p.m. and I plan to read until I am sleepy.

Yesterday was hard

I don’t want to write this. I am tired and I want to go to bed and pray that I am not in too much pain to sleep. I won’t post it until tomorrow (Hence referring to today as yesterday in the title.)

Nothing bad happened. It was just a bad day physically, and it’s been a long time since a day hit me this hard.

I need to write about it though, because I am under strict instructions from my doctor to pay attention and note anything unusual because she’s heard some of my symptoms and said that if I were any other patient I’d be going for tests.

And if I don’t write this blog, I will forget today was a bad day physically.

It started nicely enough. Visted Nancy Scott and noticed then that climbing the stairs felt more stiff than usual.

Ate decently. Tried a sample meal replacement bar for breakfast and ate a HUGE brunch of potato, broccoli, multi color peppers, egg and feta. Had two pieces of licorice and a whole bunch of unsweetened and barely caffeinated tea.

I noticed while changing into my work uniform that my knuckles felt achy and weak and like I was about to injure my middle finger as I did with my mallet finger/sock incident of 2022. (If you want to read more about my mallet finger, click here.) This sensation returned again at the end of the night before I showered.

I took 10 mg of baclofen. In the morning, I took five.

Left for work at 1:30. So here’s the big reveal– in addition to my publishing company, I took what was supposed to be a very part-time job at Chick-Fil-A. My reasons for selecting that particular job were very specific. That might be a good topic for another post.

Once I arrive, I grab some Coke Zero. I usually stick to unsweetened iced tea or seltzer while I’m at the restaurant, but tonight I needed something a little extra. The back of my right thigh is spasming.

I started my shift running people their food inside the restaurant. It’s not my strongest position, but I like the movement. Then, I went to the drive-thru window for an hour, before I went back to running. My legs felt very heavy and clumsy the whole time.

Then, I went on break. And I ate a fruit cup. Everything still felt hard to move.(I walked a total of 15,000 steps today and two hours of my shift registered as exercise on my Apple Watch.) While outside I started stumbling, and twice I almost pelted some cars with bags of food.

And it was cold outside! Then, the icy rain started. Eventually, I got a poncho, and after about two hours I went inside and washed my hands for five straight minutes trying to get them warm again. At this point, my lower half hurts and I can’t bend and reach the floor.

And one of my supervisors accidentally clocks me in the cheekbone with his elbow. Hard.

I finally leave, and my phone alerts me that my heart rate is high. It hovered around 120-135 most of my shift. It usually does.

My toe hurts– not sure if I’m getting a blister or the toe I almost broke or the neuroma giving me trouble.

I came home, showered and made myself some food. And took 20 mg of baclofen. Making my grand total for the day 35 mg. I think. My blood pressure is also trending upward, at 112/78.

My phone says my average walking asymmetry for the day was 2.5 percent, but I noticed there was a lot of asymmetry. Often when my numbers are bad, they are a lot higher but only happen once. This was happening frequently. It looks like it was happening a dozen times an hour.

So, I came home wet, cold, stumbling and hurting.

I record this now to improve my memory of what the bad days feel like.

“Make Good Decisions”

I visited my neurologist/physiatrist yesterday for my four-month follow-up. Four months ago she recommended I join the Thrive medical fitness program with the hospital network. I met with her in November to discuss how I could move forward with exercise and strength training; I was scared that I would hurt myself working out alone.

According to her records, I lost six pounds! She was very happy to hear about and see for herself the gains I’d made in my strength. She reminded me that I was still “young enough” to keep making gains, whereas at a certain point the aging process makes it so that all we can do is maintain our strength.

I told her about my bumpy February, complete with several unexplained falls. She has some concerns about this, concerns that are mitigated by my fall-free March. I told her my theory that the change of seasons and sinus “stuff” might impact my balance– referring to my serious falls of March 2023– and reporting that I had not resumed taking my allergy medicine after a winter hiatus.

There are some other signs, some dealing with episodic urge incontinence and a recent bout of constipation, the strange weakness and sensations in my fingers, and my typical hyperreflexia that could suggest an issue with my spinal cord in my neck. So if anything changes or becomes more persistent, I have to let her know immediately and not “downplay” it. She referred to me as one of those patients who is “a trooper” and just keeps going.

So she wrote in my after visit summary as my main instruction to “make good decisions.”

How many of us could curtail a lot of our health problems if we followed that advice?

My next steps will be to focus on working out and continuing my progress with strength training and weight loss, reduce caffeine intake, and improve my cardiofitness. My next appointment is scheduled for the day after my cardiologist appointment, so hopefully I will have some positive trends to report to both of them.

My neurologist also made me promise that when I get my service dog, she gets to meet him/her sooner rather than later.

Balance Assessment at Susquehanna Service Dogs

About three years ago, Eva– my daughter, in the beginning of her career as a pet caregiver and dog trainer– said she wanted to train me a service dog. She wanted something to babysit me once she left home or when I was home alone.

She showed me some videos and I did some research and thought she had a point. When she leaves home, I will be a 50-something woman living alone with a history of falls and accidents. The presence of a dog in my life would keep me active and prevent spasticity issues, improve my gait as a dog’s gait never falters, and perform small tasks like bringing me my phone or picking items off the floor.

I have no doubt that with the right puppy and the time, Eva could train a service dog. But I suggested that for our first experience in the realm of service dogs, we should apply to an official service dog program.

Working with a program would teach us how the dogs are trained, give us support, guarantee good breeding and the physical fitness of the dog, and have some added legitimacy should people question my dog’s work.

Now there are no rules that prevent individuals from training their own service dogs. I think this is why one can encounter a variety of “fake” service dogs doing public access work. [I saw two service animals in the same restaurant this week. One looked like a well-trained Labradoodle with a handler who wasn’t cognizant of her surroundings. The Labradoodle was lying across the main floor area of the restaurant and not tucked under a table. The second was a small dog, perhaps some sort of schnauzer who barked and begged and whined and scratched at its owner’s leg for food the entire time. So, either that handler was having a medical emergency and the dog’s alerts were being ignored or the dog was not properly trained. A working dog should not make noise in public and it should not be distracted by food.]

I understand that training a dog with an agency or a professional trainer is expensive, but people who insist on using dogs for public access that are not properly trained make life harder for those people who have working dogs that don’t misbehave. Improperly trained dogs with public access are the dogs more prone to cause an incident with another dog.

And once I pay for my dog– which will take ALL of my savings– if that dog is attacked or threatened while working in public, that could impact its ability to do its job in the future. My dog might become afraid and unable to focus on its job. So I will have invested all of my money in a dog that won’t leave the house.

In the United States, there are no rules or governing agencies that regulate service dogs. There are, however, rules about what people can ask to a handler of a service dog– Does this dog do work that mitigates your disability? What tasks does the dog do? That’s it.

I have chronicled my service dog adventures on this blog. Here are most of the entries. (I am also working on a disability memoir.) There’s a lot to the process. My dog will be a light mobility dog.

They say the average placement takes four years start-to-finish. We filled out the application with Susquehanna Service Dogs in Summer 2022. I went to their facility and had an interview, fill out a survey of my life and health every six months, did an assessment while working with a dog where they recorded me, brought Eva with me to do public access work in a mall, passed a home visit, collaborated with a case worker to develop a plan of what my dog would actually need to do, and now yesterday, I went back to the facility with Eva for a balance assessment.

They had a mobility professional join us– I believe she was a physical therapist– and I worked with the dog and showed them how I get up off the floor and answered questions about my life and recent fall history. I love when Eva can come because she can tell them her insights. Apparently, she was annoyed because physically I was having a good day yesterday.

I worked with Captain. What we learned was that my dog will need to walk on my right. The dogs are trained to walk on the left, but when the dog is on my left I struggle to walk in a straight line. When the dog is on my right, my posture and ambulation is much more natural.

We also decided that my dog will be guided by a leash, versus a strap or a mobility harness. A mobility harness is rigid and has the most feedback between human and dog. In the photos, I am using a red strap on the far right. The strap was okay, and it’s an intermediary step between the harness and the leash, but it didn’t feel natural. (And the benefit of using leash only is that it gives the dog more freedom and space to get out of the way when I fall. Some dogs are trained to do things when a handler starts to fall, but I want my dog out of the way.)

It also seems like I’m at the proper place in the timeline. The next step: When they have a group of dogs that are flexible enough to work on the right and the right size to work with me, I will get to meet them. It might take a few meetings to find the right dog. Once the right dog is selected and assigned, I believe they will do any specialized training while boarding on site and then I go to their facility for a three-week training session.

The dog itself has to be two-years-old and fully grown and cleared by a veterinarian before entering the work force. Moibility dogs have some of the hardest and most physical jobs out there for service dogs.

The close-out of my medical fitness program

Monday is my last session as part of the Thrive medical fitness program at St. Luke’s. Working with the trainers in the program has reminded me of some hard truths– and the part that’s hard is the reality of your own habits and thinking patterns.

The numbers show some nice progress. I lost four pounds of fat and gained one pound of muscle. (And had I eaten better imagine what those numbers could have been.) My blood pressure according to their records has stayed the same, but based on my home readings has gone down and requires less medication. The strength-based tests– well, I kicked butt.

I certainly feel better, and stronger, though I still have work to do on my cardiofitness. That won’t really improve until I commit to more cardiovascular exercise, even if it is just walks around the neighborhood. I would love to return to riding my bike again, but there’s a fear factor there. It’s an activity I don’t want to do alone, which is also true of walking.

But here are the lessons:

  • When my body hurts and locks up, strength-training stretches all those muscles and gets rid of the pain.
  • I can only lose about a pound a week if I eat well and exercise at least three times a week. Diet alone won’t do it. And my food choices don’t have to be perfect but they have to be solid.
  • Salt is my nemesis. Too little and I experience orthostatic hypotension and lightheadedness, too much and I end up with as much as five pounds water weight.
  • I must be choosy about my fast food. Domino’s or Little Caesars pizza will put me in a coma, and I will sleep so well, but the impact will show on my heart rate, blood pressure and weight. Wing Stop has no benefits, only the effects of the salt. I now keep various processed chicken products in the freezer because while they are not a wholesome choice, I can make my own sauces to replicate Wing Stop and save the truly detrimental health effects. Taco Bell in small doses can be tolerated, and I usually get a cheap box deal and make the items all vegetarian. It adds some extra fiber and vegetable matter to the mix.
  • And out of all the fast food chains– I can navigate the menu at Chick-Fil-A and not notice any real impact. Their fruit cup and kale crunch salad, especially when paired with grilled nuggets, are solid choices. They also have a chicken (or vegetarian) cool wrap, which, while it is calorie dense, is easy and quick to eat– with a good portion of lettuce and cabbage. (Yes, they also have amazing salads, but those big salads are realistically three portions. That’s a lot of salad and chicken. A lot.)

Do I have the discipline to not only continue but improve upon this progress? I don’t know. Honestly. IF I made a commitment to meal planning and cooking, I could. But with money and time always an issue, I don’t know. With stress leading me to seek comfort in my favorite foods– did you know they have Sour Patch Kid Jelly Beans? Eva says they flipped Sour Patch Kids inside out… With fatigue influencing my choices– caffeine and sugary carbohydrates, anyone?

Will I get up in the morning, drink a glass of water, and commit to some sort of exercise in my home gym?

Damned if I know.

Stay tuned.

The Ups and Downs of February

Lately, I’ve felt like nothing about my life is out-of-the-ordinary or interesting. Maybe that’s true, maybe it’s not.

But this week has been a humdinger. On Monday night, I came home from my supplementary part-time job (because as I’ve heard other people phrase it, “Winter is a hard time for small business” and I found what I think might be an awesome 10-hour-a-week job for me– if my body can handle it). I took a few Tylenol PM because my body was aching and I hadn’t used that particular medication in a long time. But, it’s spring kinda-sorta, and I haven’t been consistent with any antihistamines so I choked on the damn pills because of the allergy-related mucus.

Now, that’s not the end of the world, except I managed to recoil away from the bathroom sink and hit my face on the wooden shelf we use as a cabinet. I hit right along the cheekbone and it hurt like heck and managed to leave a narrow bruise almost parallel to my nose.

Now– some update/backstory as I move forward here– I am two months in to my three-month program at St. Luke’s medical fitness program Thrive. I have worked with several of the trainers (Alex, Claudia, Jim) and I can feel a difference since I returned to the gym. And this week I trained with Alex after several weeks primarily with Jim and Alex noticed I needed to up a bunch of my weights and he’s looking into changing my program.

Jim taught me some stretches for my IT band, because I’ve been having some new issues with spasms in that region, and my chiropractor had determined during our visit Wednesday that I had locked up my right knee. That’s totally new.

My blood pressure and heart rate has been weird. My heartrate has been high at random periods and at one point on Monday it dropped from 120 to 60 and went back up to 130 which could be a sign of afib. And then my blood pressure would come in at 120/65, which normally my blood pressure is 115/70 or 95/65 and now it’s blending the two.

I really have the feeling that to keep my weight and blood pressure under control I have to be very meticulous about what I eat. I am still struggling with that same five pounds. If I do my strength training and my workouts, walk at least 5,000 steps a day, and eat what a lot of people would call “clean” foods, I can lose weight and keep my blood pressure low (with an occasional salty snack when it dips too low). But even if I skip a workout, the weight comes back. It got so frustrating– that nothing ever changes– that I stopped tracking in my fancy fitness journal. And if I’m discouraged now, what happens in April when my program ends?

Thursday evening I had another great workout with Alex. I was mentioning that it had been almost two years to the day since I had my afib incident. I’m really starting to wonder if the change in the weather, and allergies, has something more to do with all this.

Thursday night I came home, showered, and went to bed, only to discover that one of the household cats was in my room and did not want to be. So I got up to let her out. And when I turned to get back into bed I don’t know if I tripped over something or if I misjudged where the space was to walk, but I fell.

Onto a stainless steel litter box.

Hard.

I took a photo of the bruise on the back of my knee today (it’s Sunday) and it’s blurry because it’s at a strange angle. I have another on my arm, that one’s less vivid but bigger.

On Friday, I did a lot of work for Parisian Phoenix Publishing and even agreed to pick up some extra hours Saturday night at the part-time job. Then, I had a really nice business meeting to brainstorm some strategy for 2025 and that included a beer and some wings (and some really yummy thin Triscuits. I had never had thin Triscuits before).

But then Saturday, I woke up with some sort of gastrointestinal issue. It didn’t seem severe enough to be a stomach bug, but I couldn’t come up with any food items that would have given me food poisoning. So I found someone to cover my shift and slept most of the day (and read Fourth Wing when I was awake).

Because I barely moved yesterday my body is painfully protesting walking. My lower body muscles don’t receive messages from my brain like they are supposed to, that’s due to the cerebral palsy. When I have a lazy day like I did yesterday, my legs literally forget what to do. There will be stretching today.

And it’s interesting that I think spring might have something to do with the stuff that keeps happening in March– because March is Cerebral Palsy Awareness Month.

A Clean Start?

My hope for the new year was to finish the book A People’s Guide to Publishing and use it as a guide for making goals for the publishing company for 2025 and to maybe, perhaps, finally finish my business plan.

With the ailment I inherited from the college student, I didn’t do nearly as much I had hoped over the holiday season, except for reading light fare like Blubber and binging old movies (Practical Magic, The Dream Team, A League of Their Own).

This year has been challenging– even with my attempts to get my act together– I am still where I was six months ago when I joined the Omada program.

But with my colonoscopy which happened December 30, and getting cleared for the Thrive Medical Fitness program at St. Luke’s Hospital Dec. 27, with my first workout scheduled for Jan. 1, I literally had a clean start.

A new year. A clean colon.

And then the dog ate a lot of the leftover Christmas cookies.

So now I won’t be tempted to eat them.

Back to the gym

Wednesday’s exercises

I did my first workout with Alex at the St. Luke’s Sports and Performance Center at the Anderson Campus on Wednesday morning at 8 a.m. That was the “push” workout. The exercises reminded me a lot of the workouts Andrew and I did together at Apex Training. When I told Andrew about it later, he remarked, “the basics always work.”

I survived the workout well, and the next day my chest muscles in the area of my shoulders and armpits reminded me that I had exercised the day before. Alex has me using the treadmill for 15 minutes, with the goal of getting my heart rate to 120-130. It’s embarrassing how challenging the treadmill can be for me, all that walking fast and making sure my feet do the right things. I so envy the people who don’t have to hold on for dear life.

Friday’s exercises

Today we did the “pull” workout. I even brought an earphone so I could listen to a podcast on my treadmill walk. The fifteen-minute walk allows me to cover a half-mile. I know that’s rather pitiful, but we all start somewhere. Alex is learning that I can handle a lot more weight than he suspects when it comes to upper body exercises, and like Andrew, he loves to make that sadistic little statement of “looks like that was too easy.”

Alex wanted to see me four times a week, but he’s only at the Anderson Campus one day next week. So, I asked, where he would be. And he said Phillipsburg. And if you know me, you know I know Phillipsburg.

He looked surprised if I could come to Phillipsburg and I asked if that were okay or if it were too stalkerish… I’m literally in the middle of the two facilities.

I’ll be seeing him in Phillipsbug on Tuesday and Thursday afternoon and then on Friday afternoon in Bethlehem Township. We scheduled all that when I saw him Wednesday, and today he said he was very excited to see me in Phillipsburg next week because that’s the gym he spends the most time in and it’s less cluttered.

When I left the hospital today, everything hurt. But I was proud.

Functional Fitness

My dear friend Thurston has been writing about what he calls “crisis conditioning” and functional aging as part of his Phulasso Living newsletter. (Read more about that in his own words here.) After a traumatic and severe leg break in Autumn 2023, he experienced his own fitness challenges. As an active guy, and a strong “in-shape” kind of guy, I think it surprised him how much energy and muscle power it took to have a mobility issue like his broken leg. He had to rely on mobility aids to get around his house (after weeks in bed) and I remember him commenting to me about how his strength did not guarantee that he had the upper body strength to support his own body weight.

The world suddenly looks very different when you face a flight of stairs with a pair of crutches or worse– a walker.

Thurston’s career has focused on safety and emergency preparedness. I think his accident may have changed his view on how much he can trust his own body, or perhaps how much he can take his body for granted, because in some ways, aging is a crisis event. Aging makes it harder to recover from injuries and from workouts. Aging makes it harder to maintain and even harder to build muscle.

But I have often viewed my own body as an unreliable partner. And something Thurston said in his newsletter hit the nail on the head.

After achieving a great deal of progress up until the spring and summer, I noticed something that really frustrated me. If I missed 3 or more days of exercise, I experienced stiffness and pain, and the number of repetitions and sets in my exercise routine would decrease! It was almost as if I hadn’t been doing much exercise at all.

–Thurston D. Gill, Jr.

I have been strength training on and off since college– which is 30 years now. I spent almost 10 years working at Target in a physically demanding job. As I approached 40, after a broken hand, I recommitted to my own fitness. And at 46-ish, I joined a private gym and hired a strength coach. I was a consistent client at Apex Training for three years, even when I had to scrape pennies together to pay for it, until my trainer had a family emergency that put a pause in our relationship and suddenly, I no longer had the money.

What Thurston describes is what I experience. That is what cerebral palsy does to me. My muscles in my legs and lower body never relax. They never get the message from the brain to relax. To facilitate better motion, I stretch and strength train and go to balance and gait physical therapy to show them rather than tell them what to do.

And the more I do it, the more that becomes their default.

And if I don’t do it, they forget.

I guess Thurston and I are both telling you not to take your body for granted, but to also realize that you need a plan to maintain your health and your strength because you never know what might happen. When I broke my hand, it was my dominant hand. That happened when I was in my late 30s.

Would it be more difficult now, a decade later, to do all those everyday tasks with my left hand?

What if I suddenly did have to use crutches?

If I fell, do I have enough upper body strength to pull myself across the floor? Into a chair?

Can I balance on one foot? For how long? Can I do it on each leg?

How do I carry items upstairs if I need one hand to hold the railing?

Can I navigate without relying on my eyesight?

Can I still walk a mile? Two? (If the car breaks down in the middle of nowhere…)

Do I have the strength to change a tire?

Gunk and other updates

It is Saturday, December 28, around 8:30 a.m. when I start this. Do not expect much eloquence from me, as the gunk Eva passed on to me from her recent illness is still interfering with my ability to think and sleep. It has instead given me a lovely cough, which now after more than a week is getting “wet” and “productive.”

I FINALLY finished my medical intake at the St. Luke’s Medical Fitness program. Because of my paused membership, I’m not sure when my end date in the Thrive program is but let’s assume mid-February for now. This whole journey started in early November when I visited my neurologist-physiatrist to talk to her about my recent mobility issues and any concerns she had about me returning to an exercise program.

The older I get, the more I worry that my cerebral palsy will cause me to hurt myself because I tend not to notice when my body is doing the wrong things.

Eva has worked really hard on remodeling the garage and including a space for a home gym, so I need to pay some attention to myself in that regard. But I’m out of shape, and falling more than usual, so I’m scared.

My neurologist referred me to the medical fitness program, and I had my first medical intake appointment on November 11. My blood pressure spiked during that appointment, so they sent me home without doing the baseline exercise portion of the intake. I returned two days later, and they almost sent me to the ER because my blood pressure was still bad.

Here are the previous entries recalling all of that, when it was happening.

Two trips to the primary care doctor, two trips to the cardiologist, and two or three falls (depending how you count, one was a trip, but I still believe it happened because of balance issues which makes it a fall) later, my blood pressure seems under control again.

And of course, yesterday, when I turned up at the gym in the basement of the hospital, it was 130/90.

Since I’ve been fighting the gunk, I almost canceled the appointment, but I filled a water bottle with my electrolyte flavor, grabbed a scarf, forgot a mask, and hopped in the car. My fear was that if I canceled the appointment, the intake would have to wait until after my colonoscopy and I was worried that one thing would lead to another and I’d never get this done.

When I arrived, I forgot my water bottle in the car, still couldn’t find a mask, and realized I had no idea where my membership/gym tag was. In the back of my mind, I knew I had packed a gym bag at my last attempt and that the tag was in the gym bag. But where was the gym bag? And what bag did I use?

Lots of hand sanitizer and frequent hand washing and I refused to shake the young man’s hand. I also told him if I continued to cough and he had to send me home, I understood. But I reiterated that I had had many trials to get to this point and I would rather be sent home than continue the cycle of not trying.

Onto the fancy scale I went (168) and I know that body fat percentage was in the forties, wish I could remember what it was when I was super lean a decade ago. Turns out that information may only exist in paper journals in my attic.

39-year-old Angel … with something to prove before hitting 40

The Angel in the pictures is 45 pounds lighter than me, and I think those 45 pounds, age and stress have had a ridiculous impact on my blood pressure and my mobility. (And for the record– the sweatpants worn by Angel in the pictures were my favorite sweatpants ever.)

I have learned that my body reacts strongly to salt and sugar, and that I “do better” when I cook, and that I have no self-control with processed snack foods like potato chips and doritos.

The trainer I met with yesterday talked about maximum heart rate and how hearts slow down as we age. The highest my heart rate reached in 2024, according to my AppleWatch, was 186. 207 was the highest since I got the watch. The online calculators I have seen suggest that my maximum heart rate for my age is between 170 and 179.

The trainer, and maybe his name was Ryan but maybe I invented that, would like to see me four times a week. I still have the mental mindset to make this work, but my physical stamina and fortitude have worn me out to the point where I can talk myself out of my own efforts.

I found this post from when I started my journey with Apex Training in 2021.

Maybe, someday, I will get my discipline under control and be one of those old ladies who powerlift. Screw the whole red hat/purple dress thing.

Meanwhile, Monday is my first colonoscopy. It was supposed to be the Monday after Thanksgiving but the doctor had a death in the family. Tomorrow I start my official bowel prep, and it scares me, because I get shaky without food, and low blood pressure without salt, and I already have a mobility disability. Then they will knock me out on Monday, and I tend to have a heavy reaction to medications and anesthesia. So none of this makes me comfortable. The actual colonoscopy, that doesn’t scare me. But everything else does.

So tomorrow, unless I experience miraculous healing today, I will be expelling mucus from my lungs and all the poop from my bum.

This Christmas (2024)

If I’ve said it once, I’ve said it multiple times this year. 2024 has brought with it profound hopes and joys, and also some challenges and disappointments. I hate when people say “it’s been a good year” or even a “bad year” because our measures of time are such arbitrary concepts.

I would like to take stock of my life not in calendar years but more in marks of what I have achieved in my various stages and ages.

I believe after November’s blood pressure scare we have that under control. I have an appointment to return to the medical fitness program Friday, and have in the last four months successfully lost 4-5 pounds. Considering my affinity for stress eating, the low level of weight loss is not surprising.

Food certainly plays an important role in my heart health as my blood pressure and weight respond clearly and drastically based on my sugar and salt consumption.

Eva had a double ear infection, sore throat, laryngitis and vertigo three-ish weeks ago, and she is still recovering from that– and she has shared with me whatever gunk started her troubles. I had a small fever last Tuesday night and struggled with an excess of clear phlegm and a cough for the last week. I have coughed more and more at night for the last few days, hours each night according to my AppleWatch, and finally expelled some pale yellow mucus and blood from my nose at 5 a.m. this morning. With luck and dreams I can hope that was the “infection,” and perhaps I can start to mend.

Eva and I haven’t fully embraced Christmas in recent years, especially since my father’s death three years ago and the increasingly-distanced behavior of my parental family. But at the same time, despite my health challenging me, trying to grow my business and watching my financial security evaporate, and in general surrendering a lot of items and ideals that were important if not central to me, I find myself closer to peace than I have been in a long time.

I meet people every day who, in some cases, inspire me, and in other cases, remind me who I don’t want to be. I still spend too much time mourning the past and not enough celebrating the future.

I had coffee with an impressive woman last week– Lenore Kantor– at Plants & Coffee.

Let me share with you these holiday-themed photos I took there.

When one is battling health problems or illness, especially at the holidays, it offers so much time to think undistracted by the work we just don’t have the mental or physical energy to do.

And in my case, I have explored some of Roku TV’s nostalgic offerings for Generation X (and earlier). I have watched Bewitched, I Dream of Jeannie, Diff’rent Strokes and Pink Panther recently while AppleTV offered me a free month so I am binging La Maison.