Tag disability

We now have a deep freezer

Angel Ackerman 1 Comment

We recently got an old, hand-me-down deep freezer.

And at the same time, the federal government shutdown and Pennsylvania state budget impasse have complicated SNAP benefits for families who have them.

I heard on the news that 1-in-8 Americans have SNAP (Supplemental Nutrition or “food stamps”). I heard one story this morning about an unemployed widow with a 15-year-old son whose soundbite suggested she sent him to school so he could eat breakfast and lunch.

I hope she’s sending him to school for an education, first and foremost.

I consider myself a fiscally-conservative Democrat who believes that education and healthcare should be attainable and fair. I would love to have a Ph.D., but I can’t afford to finish my masters and I refuse to go into debt for it. I also have a disability, and even when I am well-employed I often have to make choices about my medical care.

Right now, I have my own small business. I work a part-time job in the food service industry to provide some reliable income on a steady timeline. I am an adjunct instructor at my local community college, and if you break it down to an hourly rate, I probably make a similar wage at my fast food job (because of the fact that I did not have the money to finish my degrees). And I have freelance writing and editing jobs and a mini author’s assistant job.

And I’m always on the look out for more. Applied for another this morning.

I started my career in public relations, and ended up in print journalism, which led to a long career of lay-offs as newspapers died. I worked in non-profit communications and development, where I learned a massive amount of useful skills like grant writing but also experienced a ridiculous amount of toxic managerial behavior. Some people work in the non-profit sector because they want to make the world a better place, but at the same time, many of those people have either childhood trauma and/or personal insecurities that create some challenging environments in an already difficult field.

I mention all of this because I have experience with unemployment. I have experience with being the single mom with maybe enough resources to survive a month. I was a single mom raising a teenager who lost her job during the pandemic and did not find out if she qualified for unemployment until the weekend after she accepted a new job. I was unemployed for four months and had opened my home to one of my daughter’s friends who didn’t feel safe in her own home.

I applied for public assistance because I was volunteering at a non-profit that provides services for people exiting human trafficking situations and my “boss” suggested it. Because I had no income and I had an official dependent, I received more than $700/month in food stamps. And Medicaid. Which was a great help. Even though I only received food stamps for four months, I rationed them so they lasted almost a year.

I had accepted a job in the warehouse at Stitch Fix. I loved that job, and the company, but after three years they decided to close our warehouse. After three years at a wage where my take-home pay was the same as what I had made as the development manager for a small non-profit with a two-million-dollar annual budget (thanks to the fact that Stitch Fix offered their employees free medical benefits), I found myself laid off again.

And when my unemployment ran out, I once again applied for food stamps. I had gone on multiple interviews, built up my small business, but still struggled with the cost of my medical care– my estranged husband put me on his benefits but my medicine was $50-$100 a month and all my doctor’s appointments I had to pay out of pocket because of the high deductible. So I really hoped I would qualify for Medicaid again. And I did.

I also qualified for $525 in food stamps.

Around this same time, Trump got re-elected and the cheap refrigerator I bought started freezing the food in the refrigerator and not freezing the food in the freezer. But I couldn’t afford a new fridge– and I still can’t– so we started buying only what we could eat in a few days, or foods that could safely thaw and refreeze.

Lettuce is not one of them, if you were curious.

The point of all this is to ask: Regardless of how you feel about who uses food stamps or how the government distributes them or whether or not people try hard enough or work hard enough, why is no one asking why we have a system where 1-in-eight Americans qualifies for food stamps?

I have seen and heard so many things about the system, and I have known people who work in the branches of government that distribute these types of assistance and they are all people who want to help. I have met people afraid to work because they might lose assistance, and I have seen people who need the help lose it because they made too much money. (And, like me, it’s usually people who need medical care.)

I have about $2,300 left on my deductible this year, and I have spent almost an equal amount if you read my EOBs from the insurance company. I’m losing my hearing in one ear and I need a hearing test and a visit with the audiologist. The muscles in my one leg have been spasming 24-hours-a-day for almost a year now and I just blamed it on my cerebral palsy but my neurologist has concerns that previously noted damage to my spine (from all these years of walking crooked) may have caused nerve damage in my lower back. And my one finger has been doing crazy things for about a year.

That’s probably at least $6,000 worth of tests. Do I just try to schedule it all before the end of the year and finance the $2,000+ remaining of the deductible on a credit card? Or Able Pay? or do I wait until I am better off financially?

Back to the deep freezer. A friend of the family was hoping to get a decade-plus year old freezer out of his house. We took it. We took all the stuff from our cheap refrigerator that needed better freezer conditions and piled it in. And I thought– when Trump was elected an I was worried about the future of food stamps, I didn’t have a freezer to fill. I did however invest in every non-perishable food item I could tolerate.

Dried Beans. Plain-old Rice. Canned Fruit. Canned Vegs. Nutritional Yeast. Some condiments. Canned Tuna. Spam. Canned Chicken.

My childhood traumas leave me to ruminate frequently about food scarcity, financial security and general stability. I will probably always behave as if every trip to the grocery store is the last one I can afford. And I have done my grocery shopping at the Dollar Tree and the Grocery Outlet because I only had $20 left to feed us for the week.

The Office of Vocational Rehab considers me the most severely tier of worker, whereas the federal government says I do not qualify for disability because I work so much and at so many jobs. But the federal government doesn’t take into consideration that I have to work that hard to make ends meet. And I don’t always succeed and I often hurt myself doing it. And I just work past it.

But how do you determine an equitable way to decide who deserves help? And I ask a third time: Why does 1-in-eight Americans receive food stamps? What is wrong with our society if 1-in-eight people cannot afford to feed themselves according to the criteria the government sets forth?

Food for thought.

On writing, living and working (with a disability)

Angel Ackerman 1 Comment

I pride myself on being able to write just about anything at any time with no fear of writers block.

But lately, I haven’t been keeping this blog up-to-date. I think it’s because I’m doing so much that I don’t have enough stillness to think, reflect and write. I still have the thoughts, but I don’t have the time to germinate themes and record them and so I lose the moment.

Last night, I was a guest speaker at the Behind Our Eyes writing group for writers with disabilities. Nan has been a part of that group probably for most of its 19+ year existence, but I am a relative newcomer. I joined because I read Nan’s email and work so closely with her as a writer that I already knew most of the members in the creepy troll way.

Nan pointed out to the group that I was a gifted cook and bargain hunter, and that she hopes I commit more time to my disability memoir because I have some insights that the world needs to hear. And maybe they are things I also need to remember.

I overdid it last week. The last few weeks have been insane. I haven’t been eating right, or sleeping well, or giving myself any breathing room. I saw my cardiologist last week, and I mentioned to her that I don’t know if my blood pressure medications are the most efficient way to stabilize my heart rate.

The backstory

So, in March 2023, I had two bad falls down stairs in close proximity– 2 weeks apart. Neither were traditional mechanical falls of the type I am used to, those from lack of proper muscle control due to cerebral palsy. The first occurred as I was hurriedly leaving work to go to the chiropractor. I dove down the cement stairs and ended up severely spraining my pinky. Most dumb injury ever, and my pinky is still bent.

I didn’t know it at the time, but my eating habits had flooded my system with salt when I misbehaved, and then when I suddenly returned to my normal diet and drank the massive amounts of water I had always consumed, well, I washed all the sodium from my body, causing low blood pressure and dizziness (orthostatic hypotension).

With cerebral palsy impacting my gait, and allergies/congestion also challenging my balance, a sudden drop in blood pressure may have caused the fall. (I suggest this because I did almost pass out in the moments after the incident.)

Almost two weeks later, I was carrying a cup of tea upstairs when I had a nothing fall triggered by my head and not my legs. My daughter watched it happen. I plummeted out and down and into an air conditioner that was on the floor. I split open my chin directly under my lip. I definitely needed stitches so we headed to the emergency room.

I told the doctor that I knew mechanical falls and these weren’t from my legs, and he gave me some options:

  1. He could stitch me up and send me home in a matter of minutes.
  2. He could order every test and I’d be there all night.

I asked if there was an option in the middle, and he suggested starting with some bloodwork. But they also noticed my blood pressure hadn’t come down so they put me on a heart monitor and very quickly noticed that I was in Afib with OVR.

So it looked like I would be there all night anyway.

They eventually labeled the whole incident as idiopathic and put me on a low-dose beta blocker to make sure I stayed in rhythm. I invested in an AppleWatch to try and get information about what my heart was doing.

Fast forward to present-day

I have had no incidents of Afib since that initial one. But each fall, my blood pressure has risen in the autumn. Is it allergies causing stress on my body? Is it the stress of the end of the year and all the obligations of adulthood like taxes and paying for fuel oil? Is it just the looming presence of Christmas? Or is it the change in the seasons and the shorter days? Or a figment of my imagination?

In the autumn, I struggle more with anxiety. My primary care physician has talked with me several times about the impact of stress and anxiety on heart health. I have been in and out of psychotherapy for 15 years showing symptoms of depression and generalized anxiety disorder.

So I asked my primary care doctor, my cardiologist, and my psychologist if I might need an anti-anxiety med instead of the combination of other meds for high blood pressure. Because typically my diastolic pressure is typically good, and high in response to stress, but it’s not uncommon for my systolic pressure to stay high even when my heart is at rest, sometimes elevated for days even with a now higher dose of the beta blocker.

I take a muscle relaxer for spasticity several times a day and some anti-anxiety meds can also treat this, allowing me to reduce the amount of medications I am taking. A standard low-dose beta blocker and muscle relaxer for maintenance and on days that I am anxious, an anti-anxiety med instead. So now I’m on the hunt for a psychiatrist to get an evaluation.

Which brings me back to last week

Last week was brutal. I was booked every day from 8 a.m. to at least 10 p.m. And Saturday I attended Collingswood Book Festival as an author with Pennwriters Area 6. I met with clients everyday, taught my college class, went to WDIY to talk about advertising my business (and hopefully make some new friends)…

And I still worked part-time. I don’t talk much about the job I have in a local fast-food restaurant, a job I took last January because after a year of relying on Parisian Phoenix Publishing for my income, the realities of first quarter in the business world were making me nervous. And since royalties pay out three months after sales, I know how much money is coming and when.

And 90% of the time, the evening fast food job suits me perfectly and feeds me. The general manager was an English teacher until this year and understands my business and my frequent time off requests.

But last week I had two long shifts back to back where I was assigned jobs that were physically challenging for me. And I haven’t been in that much pain and discomfort in a long time.

And so even though I still have more work than time, and business can be as stressful as it is rewarding, I will try to go easier on myself. I only have two fast food shifts this week, and they are both on the longer side… but my days aren’t packed nearly as tight.

End of Summer Update

Angel Ackerman 1 Comment

More than a month has passed again. Since I last blogged, I have taught three classes at Northampton Community College in their creative writing program. Well, it’s one class and I’ve taught for three weeks. I am the instructor for their publishing class, “Paths to Publication for the Aspiring Author.”

My falls have been minor. A little too frequent, but they typically classify as trips and I have managed not to significantly hurt myself when I go down. Though I hate that they are happening about every other week.

I had two of my four annual doctor visits– gynecologist yesterday and primary care provider today. I even got my pneumonia vaccine, since the recommendations have changed from age 65 to age 50. Shingles will be next.

I have officially lost ten pounds during the last year. It’s not as much progress as I would like to see, but it was enough to please my doctor. He says my efforts in weight, nutrition, rest and exercise will have a huge impact on my life in ten or twenty years.

Though I am still a big fall risk.

I did finally get some medication issues straightened out between CVS and my insurance company. The insurance company kept refusing to pay for my pills until my neurologist changed the dosage of the individual pills from 5 to 10 mg. If I need five, I need to cut them in half– but at least they are paid for!

The Day the Garbage Trucks Swarmed

Angel Ackerman Leave a comment

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

Angel Ackerman 3 Comments

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.

Balance Assessment at Susquehanna Service Dogs

Angel Ackerman 1 Comment

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

Angel Ackerman 1 Comment

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

Angel Ackerman Leave a comment

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.

Fitness update

Angel Ackerman 1 Comment

I have completed SIX workouts as part of the St. Luke’s Thrive medical fitness program with trainer Alex who will be starting his Ph.D. program in physical therapy this summer. I have attended and completed one boot camp workout at Apex Training, the gym where I trained regularly from Summer 2020 to March 2024.

I have tried to start taking my supplements again: multivitamin, calcium + D, iron, and zinc. I have increased my daily step goal AND my dosages of my muscle relaxer.

Hopefully soon I will start using my home gym, see some consistent weight loss, and start taking the dog for a walk regularly.

And now, for the past week, I have struggled to keep my blood pressure UP.

I met Alex at the gym today for a 7 a.m. workout. He had the early shift so he started at 5 a.m. and I had my butt on the treadmill by 6:45 a.m. We did a pull workout today. I didn’t have as much flexibility as I do later in the day but for the first time in a week I am looser and more mobile after the workout. Typically, I am sore and achy and want to sleep for a week.

The push workouts hit me harder than the pull workouts.

Alex thinks we’ve hit the muscle memory plateau– he’s commented during my last couple workouts that I have jumped weights amazingly fast, that he has never seen someone progress that quickly. I tried to warn him, but I guess seeing it with his own eyes still impressed him. But now we’re getting in the neighborhood of my old weights and he’s seeing me struggle more.

It’s a riot that I can do bicep curls with 15 pounds on each arm but I’ll want to cry if I have to walk across the room with a resistance band around my thighs. Ah, the dichotomy of diplegia spastic cerebral palsy.

But I have also noticed that A. There is a lot of people hanging out at the gym early in the morning and B. There are some old ladies lifting HEAVY weights. Good for them! Go, Ladies!

I’m thinking more and more about long-term habits and choices and how I will keep myself engaged.

A Clean Start?

Angel Ackerman 3 Comments

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?