Tag cerebral palsy

Disability Lit Review, part one

Angel Ackerman Leave a comment

Let me offer a bit of an author’s note on this one, or perhaps a caveat, that I only got five hours of sleep last night, and my body hurts today. This is the third night this week I got six hours or less of sleep, due to some fairly intense routine change that is kicking my ass. And the pain I am experiencing today is not my standard everyday pain, but similar pain in a more twitchy and unnerving form.

And this may lead to some of my more strident tones. Or perhaps I always feel my opinions with a certain sharpness, but ordinarily I present them after the application of a filter.

I will try to keep my aggressive aggravation to myself, but no promises.

Earlier this month, I drafted a “bird piece” for the Behind Our Eyes anthology, a collection in the works to highlight the members of the Behind Our Eyes email-based writers group for writers with disabilities. I joined the group a couple years ago after participating on the fringes through Nancy Scott, who, in cheap amusement and most things disability, is my partner in crime. I normally lurk in the group, but recently heard they were actively looking for bird stories. The anthology features a variety of sections and one themed block focuses on animals.

I wrote a creative non-ficiton piece about my Goffin’s cockatoo and I navigating disability together, with a present-day, present tense story of Nala plucking her feathers due to her anxiety and me trying to figure out why. The plucking led to her not being able to fly, which gave her a temporary mobility disability. So I used this present-day situation to frame flashbacks exploring why Nala was anxious, but also looking at my mobility disability and the similarities and conditions that made us good for one another. The anthology committee wanted just a bird story, so they’ll be publishing the present-day section of my interactions with Nala.

This was the first of two pieces I wished to submit to disability-associated anthologies. I have drafted the second, but that one is specifically for disabled voices to share what we wished the outside world understood. I revisited my first draft, and tightened it somewhat, and thought the piece sounded like an introductory chapter to my upcoming medical advocacy memoir. That piece has two themes– the beginning talks about how my family had too many problems for me to realize I was “disabled” which seques into the second half, about me finding out my body and assembling an adequate medical team.

Nan has been encouraging me to write more in the disability space, her paraphrased quote being that I could have a real impact there. And in my experience, there are two main types of voices in the world of disability literature. The most mainstream voice is the voice of the writer-first– commonly a writer who experienced illness or disability not from birth, with either some sort of privilege or talent. The second is the disability activist who is not a writer, but congenitally-disabled and fighting for their right and the resources to exist. (And I guess the third would be the hobby disabled memoirist.)

I find myself crossing all these categories. I have the natural writing talent, my background as a professional journalist, my credentials as an academic and historian, and the experience of a congenital disability. Yet, I have the privilege of being a white woman, and if I can borrow the term, I can “pass” as an able-bodied person if I focus really hard and am having a good day. I have the type of cerebral palsy that you might not notice or that might make you stare at my feet and knees.

This morning on social media, I saw a post from a disabled Iraqi/Afghan War veteran stating that he needed to retire his service dog as she had had a seizure. The man said that his career involved much travel and public speaking as an influencer and motivational speaker. I searched the internet for him and found a very basic web site, some YouTube videos and an Instagram, but no information about him or the experiences that lead him to be a motivational speaker.

Now, in everyday life, people with disabilities do not owe information or an explanation to anyone regarding details about their private lives or medical conditions. But if you build a career on your experience coming back from a disability, I think some of that information is owed to prove the validity of that expertise. (And if you are an influencer, a Google search should turn up some information about you.)

What I am about to say next is going to make me sound like an ass, and I mention to not to invalidate the experience of people with disabilities who fit the categories as I am about to describe– but the lived experience of a Cis white heterosexual male in the United States of America who develops a disability after voluntary service with the military is very different from the experience of a person who has never been able to walk, has a limb difference, total blindness or any of the multitude of disabilities that occur at birth.

(Add in family resources, and there’s another layer of complexity.)

Some people have more choices. Some people have more privilege.

ALL people living with ANY TYPE of chronic illness or disability deserve the same respect, but one must understand that they all come from different places. As all humans do.

This has led me into a brief literature review of the disability space, one I have only explored via finding books written by ordinary people on their experience with disability. My list included the third anthology from Behind Our Eyes and a service dog memoir by one of its members, Peter Altschul. I have a collection of books with connections to cerebral palsy: several modern memoirs by Tylia Flores, a pre mid-20th century memoir by Dubliner Christy Brown, and Karen, a parent’s cerebral palsy memoir that takes place about 10 years after Christy Brown, and then poetry and academic work by Jennifer Bartlett. And a highly academic poetry book by blind poet Susan Glass.

A copy of A Disability History of the United States

I recognized my need to diversify… especially as I start more work on my medical advocacy memoir and consider making more deliberate strides into this space.

Here’s what I ordered:

  • A Disability History of the United States by Kim E. Nielsen. I believe this was Nielsen’s Ph.D. thesis in history. In her introduction, she mentions that she is a white woman of certain privilege, and she ended up in this space by accident, with no connection to disability. Then, shortly after receiving a publishing contract for this book, her teen daughter contracted an illness that made her a wheelchair user and gave her a more personal glimpse of the issues she had talked about.

I finished this book yesterday, and it’s definitely an important work, exploring hundreds of years of attitudes and events about disabled bodies. Nielsen aligns disability rights with other civil rights, for women, for Blacks, for gays. She presents the idea that any body that is not strong, healthy, heterosexual, white and male faces the same discrimination and lack of belonging in the American social structure. And ALL of these bodies are disabled and deemed as unsatisfactory as part of the capitalistic labor machine.

It’s an important work that shows how ideas about disability evolved and how legal status/rights have changed.

Today I started:

  • How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva. This is Johanna’s fourth book, and the bio on the back lists them as a Korean American writer, artist and musician raised in Los Angeles raised by a family of witches.
A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Their introduction mirrors a lot of the same concepts about the issues disabled people create for American capitalism. Their experience though is one of disability after chronic illness. I have only reached page 28, and Johanna mentions a decade of chasing a diagnosis, but states that they inherited chronic illness from their mother and grandmother– which leads me to wonder why a diagnosis was such a mystery?

I suspect the reality is that Johanna had trouble finding a doctor to label the diagnosis officially, which is the “doctors are idiots” and the “American healthcare is broken” problem not that Johanna didn’t know what was wrong.

I hope Johanna eventually shares their disability with the reader, but as of yet it has not happened, and again– I know no one is entitled to know the private details of another person’s medical situation, but it is important when one is standing in a public space claiming authority regarding such issues.

The other two books on my new acquisitions are:

  • Fifty Years of Walking with Friends, another guide dog memoir by BOE member DeAnna Quietwater Noriega. I added this one to the list because of Noriega’s Native American heritage.
  • Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Bessler Watts. Julia is a queer rabbi. This book was recommended and you had me at queer rabbi.

Seasonal summary and hoping for new beginnings

Angel Ackerman Leave a comment

My daughter is in the garage doing yoga right now– an old set of yoga DVDs I found on a discount pile somewhere 20 years ago. I used to used those DVDs once or twice a day, each routine a mere 20 minutes, and its impact huge on my body. I should be out there with her right now, but although it is 8:30 in the morning on a Sunday, I am already knee-deep in work. So maybe after my 9 a.m. meeting I will give it a go on my own.

I’ve had some successes in life lately, but health and fitness is not one of them. I’ve been struggling with my mobility since before my trip to Ireland in March. Some of that is due to lack of movement in my routine. Some is due to lack of chiropractic care and not enough stretching. Some is weight.

But now I’m experiencing more and more symptoms of anemia. What started as mistyping words– not misspelling but using completely different words: “basket” coming out of my fingers instead of “basic” and “winter” instead of “window”– has nos (and I just typed “not” instead of “now”) escalated to incidents of brain fog (driving past the bank instead of to the bank) and drinking too many caffeinated beverages without feeling their impact and literally not being able to keep my eyes open at 2 or 3 p.m. despite having healthy sleep hygiene and getting to bed on time. And all of these symptoms get worse with the heat and the sun. Which is also classic anemia.

I scheduled my annual blood work for tomorrow morning at 6:45 a.m. It’s not due until September so the insurance company will probably love that. I also left a message for my chiropractor, Nicole Jensen at Back in Line, because even though it puts a strain on my finances, I need the care.

My right leg is definitely leaning into its femoral anteversion, and the best way I can describe it is like I have a tree trunk instead of a leg that I’m dragging around. And then once it’s a little straighter and not locked into a weird position, any yoga I do will help keep things limber.

I started taking my vitamins last week: vitamin D/calcium with breakfast, iron with lunch, and vitamin C with dinner if I remember).

I’ve also cleaned up my diet and I think I can say that except for breakfast with Laurel at Panera on Tuesday, all food has been prepared at home. I have tried to make sure I get more fresh fruits and vegetables and include a protein with every meal. With this routine, I have lost five pounds this week. And I know that is all the sodium/water weight leaving my system. But if I with another 7 pounds off this summer, I could be at the weight I was last fall when I saw my primary care physician last fall.

Both Eva and I have struggled with motivation to eat so far this spring/summer season… We’ve both been busy, stressed and exhausted. Eva’s taking an online American Sign Language class through Purdue University and her midterm is tomorrow. It’s really cool to watch her learn. And to help her study.

We’ve both taken to finding items that are easier to eat. Often these are easy-to-grab meat products and snacks for her, and meal-prepped items like overnight oats for me. Last night we both needed something for dinner so I made tuna fish sandwiches which also helped us use some of the aging iceberg lettuce in the fridge. I’ve been adding kale to everything I can, especially pasta and eggs. My other coup was a make-your-own quesadilla bar– I had flour tortillas, corn tortillas and refried beans from the dollar store, all items I keep on hand (in addition to beans I cooked from dry and froze, in seven different varieties); we had lettuce, tomato, and onion left over from burger night; and on a whim, I had just purchased sour cream and a huge block of cheddar. We even had fresh limes to give everything a citrus kick.

Speaking of food, I’ve been tracking my food in the Omada app again. I still believe the Omada program is a waste. If you have issues with food and weight and health and don’t have a previous understanding of nutrition I can’t see it helping. It only helps me because it reminds me what I’ve eaten, how I’m trending and gives me some basic nutritional summaries. But the fact that my insurance company gets charged $30/month just because I stepped on a scale is nuts. My coach is really good, but for the most part she can’t tell me anything I don’t already know.

So much of health is making the hard and responsible choices.

And doing what you need to do.

It’s also the only app/system that gets worse over time. Their AI-driven logging system can’t identify basic foods, and when you try to edit the listings with information from the actual label, it just ignores you. Omada does not believe in tracking calories. It encourages instead you make better, educated decisions based on your hunger and how you feel. I understand that calorie-counting can lead to some psychological issues, but in the end, weight loss is math. They do track fiber, added sugar, protein and saturated fat. But not sodium. If you have a chronic weight or heart problem, you need to understand sodium.

And they encourage you to aim for 50% nutritous. I average 50% on any given day. Today I’m at 57% so far, but I’m due for lunch. That may change. Now, if you know me, you know– I try to make my meal choices as close to vegan and minimally processed as possible. I had gestational diabetes when I was pregnant with Eva, and trying to eat 2800 calories in six meals a day with no sugar on a vegetarian diet got me very bored. Thank God I decided to incorporate tuna into my routine. I can still remember some of those routines. My ten-thirty a.m. snack was large curd cottage cheese and usually strawberries or raspberries and my 8 p.m. snack was decaf coffee and unsweetened soy milk. (I had to do something to make the “milk” drinkable.) I still can’t look at a plate of food without seeing its protein and carbohydrate estimates in my head.

screenshot of the Omada app showing the list of protein, fiber, fat and sugar stats

Most people don’t have my experiences. And I know myself. For instance, if I eat a meal out, even if I make the good choices, I will gain 3 pounds the next day.

Most people don’t stay invested in their choices like I do– so if I only eat 50% nutritious, how does a standard American diet rank? I wouldn’t want to know.

So far today, I have had:

  • about 16 ounces iced coffee with a healthy pour of half and half. (That comes in at 50% because the coffee is considered a healthy drink, even if I drink it at every meal. The half and half on the other hand is not nutritious, because of its saturated fat content, but it has calcium, vitamin D and protein and isn’t sweetened or processed like other creamers.)
  • For breakfast, a little more than half an apple with skin on, with cinnamon sugar and mixed nuts. Water, 30 ounces, and one scoop of my Powdervitamin electrolyte powder which has no calories, is the most dense with minerals and salt, and sweetened with stevia. But because of the sugar on my apples and the powder, that again ranks my meal as only 50% nutritious. I could have used a processed caramel fruit dip or an icing and Omada would have ranked my choice as just as it did when I added just a touch of sugar. And the electrolyte powder gets treated like a sugary Gatorade even though I need that supplement to prevent orthostatic hypotension because I don’t eat many sodium-rich foods and I drink so much water. How many other people drink 50+ ounces of fluid before 9 a.m.????

My plan remains simple… More movement, more yoga, eating at home, and not eating due to stress. And in a few months or maybe a year I will write a blog post like this. Again. Which I do so frequently. As I struggle and fail and disappoint myself. But permanent change is a long game and it’s hard when the only person who holds the power and the motivation is yourself.

The Medical Refund I Didn’t Ask For

Angel Ackerman 1 Comment

I keep promising myself that I won’t let this blog anguish and fade into nothing, and then I fail. If you miss me, check out Parisian Phoenix Publishing on the web or social media or sign up for my weekly-ish Substack newsletter. (Which you can do here.)

While I keep intending to do more jovial hometown adventures and life updates about the cats, the bird or the dog, it doesn’t happen. (We have TWO dogs this week as we have a jovial mutt with us as a boarding client. He’s a joy to be around, and he’s such a confident and stereotypical dog compared to our depression-prone backyard-bred pit mix.)

Eva’s dog has received a custom muzzle as a safeguard against her fear-based reactivity. And the difference it makes in our ability to trust her with new dogs and people and her comfort while wearing it is amazing. If you have a dog with issues, a custom muzzle is a game-changer.

But today I want to talk about what happened when I returned from Ireland regarding my emergency room visit two months prior. And I might sound like a conspiracy theorist, but it is what it is.

I have a high-deductible, employer-sponspored health plan through my husband, but as we are separated, I do not ask him to use his HSA. The HSA absorbs a lot of those out-of-pocket expenses. And my husband’s employer gives him money for the HSA as an incentive to take the high-deductible plan.

I have done the math. As a family, we have had the high-deductible PPO plan for 20 years. It sounds scary at first, but the monthly premiums are way cheaper than the other plans and the PPO allows us to see any doctor we want when we want, and when you have chronic issues, that’s important. I briefly had an HMO in the late 1990s when I had never had any health insurance before and no real medical treatment post age five, and my primary care doctor sent me to a podiatrist who specialized in ankles for my gait issues because he was pretty much the only provider in network. He told me there was nothing anyone could do without finding a provider in a major city.

And by the way, he was wrong.

If you don’t know, a high-deductible plan means that the insurance company pays nothing of any of your expenses until the deductible is met. In my case, that’s $3,500. BUT, my out-of-pocket maximum is $5,000 a year.

The ER Bills

As you may recall, (if not here it is: the original post and the ortho follow-up) in early January I had a fall and I debated between going to the ER or the urgent care because of my history with afib after bodily trauma… I was not in afib, but I did break my thumb, which has not fully recovered.

That fall led to about $800 in out-of-pocket orthopedic specialist bills and about $3,000 for the emergency room. Now, I use AblePay which allowed me to schedule payments for these services and gain a cash discount. For the ER bill, I opted to pay more than $2,000 in one lump sum of my American Express because it allowed me the largest discount. I then used the AmEx PlanIt feature to schedule that into monthly payments for a fee instead of accruing interest. In the end, I didn’t save money but it allowed me to space the payments.

But then… randomly, a full month after I paid 100% of the ER bill in a lump sum of on my credit card, my insurance company (Capital Blue Cross) decided to renegotiate the bill– which remember, they did not pay. I did.

I did not know this was happening. I was less than $200 away from my out-of-pocket maximum for the year so I scheduled regular chiropractor appointments and a mental health check-in with my therapist. The chiropractor appointments help me not twist my body into weird contortions that further cause complications from my irregular gait, and since my chiropractor Nicole was originally a physical therapist, she helps me stretch and monitors my gait to make sure my feet “do feet things.”

So, while I have debt from the ER visit, I can now have chiropractor appointments every other week for a small coinsurance amount ($40). And that is a huge help to my mobility.

On a Friday afternoon, I get an email from AblePay and a notification from AmEx that I had a $1700 refund on my recent medical bill. Which sounds great, right?

I logged onto Capital Blue to see what was going on, and indeed they had renegotiated my bill, which rolled back my previously met deductible and out-of-pocket maximum. And I had two chiropractor appointments and two therapist appointments that I was now responsible for. That’s about $700.

And I know what you are thinking, that still leaves me $1,000 ahead. But oh no it does not. Because remember, I had only paid one payment of my planned credit card charge. So the whole refund went to the charge, and I still needed to pay the remaining several hundred.

I negotiated a payment plan with my therapist and canceled all my upcoming chiropractor appointments.

I wish I could tell you that was where the story ends.

Present Day Repercussions

When I was in Ireland, I walked a lot more than usual. A lot more. As it was a relatively last-minute trip, I didn’t have a chance to try and get myself in shape. So I attributed the discomfort to my out-of-shape-ed-ness and called it a day.

But I am experiencing problems again. For the last week, I have been experiencing increased muscle pain in both my legs. My left leg usually does not hurt. My right leg always hurts. Like every day, I experience at least a pain level one but typically two or three. It’s like there is a braid of muscle that splits the back of my thigh muscle and presents with a constant pulsing, ache. But increasingly, my calves are experiencing extreme, painful muscle stiffness, in both legs, and my knees hurt.

My flexibility is better than usual, and I have no problems with my back, but if I touch the floor, it kills me to straighten my legs.

And this morning, after a week or so of this, and several days of feeling like my legs aren’t attached to my body when I walk, I started to cry. I caught myself, but I still started to cry. I took an extra dose of my baclofen– at double strength, and that made the calf pain go away. But I’m struggling to use my legs. And I’m getting damn tired of it.

I have tried to find and label what muscle hurts, but I can’t.

I suspect I need physical therapy. I have tried to take short but regular walks, making sure that I hit at least 5,000 steps daily, but I think it’s too little too late, and my muscles have forgotten how motion works. This winter was hard, long and cold; and with my part-time fast food job laying me off, I don’t stand and walk as much as I have during the last year.

But that leg pain I refer to as a braid? That started shortly after Stitch Fix closed. I think because I went from a job where I stood eight hours a day to a sedentary job. That’s almost three years of the same pain. That has now intensified.

So, why don’t I call the neurologist?

Because she costs $220.

And if she wants tests, I can’t afford those.

And If she agrees that I need physical therapy to stretch out and retrain muscles, that’s thousands of dollars. It sounds ridiculous. That a six-week physical therapy session would rack of thousands of dollars, but when I broke my ankle, which was TEN years ago, that cost me $5,500. That deductible and co-insurance adds up.

This is when I miss my Medicaid.

Becuase I work hard, everyday, and I just can’t afford the treatment and maintenance that would improve my quality of life.

And it sucks.

To make a choice everyday to deny yourself care you need.

Because of money.

And I believe– and maybe I’m wrong– that Capital One renegotiated my ER bill because I hit that out-of-pocket maximum and they didn’t want to pay my upcoming bills.

Our health care system, specifically for-profit, employer-sponsored health insurance, sucks.

It’s broken.

Broken Thumb

Angel Ackerman 3 Comments

In 2023, I had two falls close together (two bouts tumbling down the stairs in two weeks) and in general, I tend to fall more in winter (and not even outoor falls due to weather and ice). These two factors and my hospitalization with AFib after my falls in 2023 led me to go to the emergency room yesterday because of my fall at lunch time on Wednesday.

(For more info on my hospitalization in 2023, click here.)

I just wanted to make sure that this fall didn’t lead to a sequence of falls.

In similar cautiousness, today I visited my old ortho practice from when I broke my ankle in 2016. That’s the infamous “I broke my ankle and went to the Chinese buffet before heading to urgent care for an x-ray” incident. Read more about that here.

I felt silly, because my injury is pretty minor compared to other orthopedic cases. The ER told me that if it didn’t feel better in two weeks to follow up with ortho.

But I know from past breaks that the first two weeks is when the healing really solidifies and if it heals wrong, I would have more problems. And I wanted better direction on how to splint it, a better splint, and confirmation it was broken.

It is. In two places in the knuckle.

This is my right hand. At this point only one finger of my right hand has not been screwed up in some capacity.

And the doctor seemed to agree with my fastidiousness. He gave me a better splint and some first aid tape and told me to come back in four weeks for a follow up and new x-rays. His assistant gave me some Coban tape and some buddy strips for the splint.

I have a high-deductible insurance plan and I do not have an HSA, so I know I will pay more than I want to for this, but it’s my dominant hand and I need it to work.

Playing my favorite game: ER or urgent care?

Angel Ackerman 2 Comments

Yesterday, in a strange turn of events, I had a fall. More of a trip.

But let’s back up. Remember that tire incident from my last post? The day after that post (which was not the same day as the incident) I came down with an ailment that still has me congested and softly coughing.

I have to wonder if I had COVID.

It’s only been the last few days that I’ve felt myself. And that might contribute to the perfect storm that put me in this position.

I forgot to take my baclofen yesterday and all I had before I went to pick up Nan for our errands was coffee and a couple Munchkins. (With Eva on vacation, those of us left behind had to take the dog to the Dunkin Drive Thru window.) I even forgot to take my blood pressure.

When I got home, it was probably 11:40. I had coffee from Panera and groceries in the car, as well as some plastic bins from the dollar store to organize the deep freezer.

I brought the coffee in first and got the dog out of the crate. The backyard had a lot of dog poo, and I wasn’t sure she peed.

So I put on her collar and her prong, leashed her up and checked for dogs and people. We went across the yard.., and the mailman popped off a porch four houses down.

I had not put on my hands-free, waist, back-up leash. So I dropped to my knees to better control the dog lunging at the mail carrier. I got her settled (the dog, not the mail lady) and put her back in the house.

I went to the store to get the items from the dollar store. The mail lady approached me to give me the mail. I accepted it, placing it in the large-ish plastic basin containing all the items from the dollar store.

I turned, got my foot caught on the dog’s outdoor place stay, and fell. I fell with a bit of a twist, landing both on my stuff and on my right thumb.

Assymmetry percentage

I landed on the sidewalk and along the steps.

I smashed the basin. It never even made it into the house.

The fall probably happened around 12:20. My watch didn’t register it as a hard fall, probably because the basin broke my fall and prevented more serious injury.

The thumb hurt but it moved well, so I took my Baclofen, had some lunch and sat down for a while. My phone suggested my gait had been awful that day.

Thumb directly after accident

At 5 p.m., I did a shift as the front counter bagger at Chick-Fil-A. 4 hours.

Had dinner. Came home. Went to bed.

Woke suddenly in the middle of the night. My thumb hurt and it was bending less than it was earlier. I went back to sleep, planning to go to urgent care in the morning. The recycling truck came around at a bit after 4 a.m., woke me, and I couldn’t get back to sleep. I decided that even though I got less than five hours sleep I would just get up.

When I looked at my phone, I noticed a series of notifications. Apparently, my heart rate had been high while I was sleeping. Since I had that afib incident after my falls in 2023, I did an ecg on my phone. It was fine.

I headed for the bathroom. And as soon as I opened my bedroom door, I had to fight not to urinate on myself. With no warning. As I got closer to the bathroom, it was harder not to lose control– and in the end I didn’t really make it.

Thumb in the ER

Now my thumb would not bend at all.

I began to wonder: Do I have too many complexities for Urgent Care? With my disability and my heart history…

At 5:30 a.m., I decided to bite the bullet and walk to the ER.

A ten-lead echocardiogram was normal. Thumb shows a possible chip fracture.

I came home and called my neurologist, who is also a physiatrist, leaving a message in case she wanted to see me since I had a weird combination of symptoms. The person who assisted me asked me all sorts of questions.

While on hold with their office, I looked up the number for the Institute for Hand and Upper Extremity Rehabilitaton. I have worked with their therapists for two of my previous finger injuries on my right hand. They are now closed.

The person on the line with me from the neurologist’s office suggested I call the orthopedic specialist, especially since it’s the same doctor whom I consulted with when I broke my ankle ten years ago. The ER advised I call them if it got worse or did not improve.

But I would like to confirm whether or not it is broken and get a better treatment plan than this huge, cheap splint the ER gave me.

The person on the phone at the ortho’s office assured me that it was smart to be seen, right away, versus waiting for time to pass. She even had a cancellation for tomorrow morning.

So I guess we’ll have more updates tomorrow.

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!

Ruminations on a fall

Angel Ackerman 1 Comment

It’s been a month this time– since my last entry and since my last fall. I wasn’t going to share this fall. I wanted to keep it to myself because it’s circumstances were mortifying enough. No need to share with the world.

But then a friend fell down the stairs. And I sent my regards, asked how she was feeling, and we had a conversation about the mental toll falls take.

I fall a lot.

Before my fall in July, I was thinking to myself, “It’s been about six months.” And I felt smug. And just now I went to my phone where my watch records hard falls and I manually enter the smaller one and I realized… for most of 2025, I have had a fall worthy of noting just about every month. And that “six months” I had in my mind– it was two months.

It felt like a lifetime.

Here’s the thing…

When something happens and a person falls, that person knows why it happened, brushes themselves off, and goes about their business. But when a scary fall happens… Well, maybe you just misjudged or your balance was off or your body didn’t do what you expected it to do… It’s not about injury. It’s about your body failing you.

It’s a special mind game when you can no longer trust your body.

Most people will experience this type of fall in their lifetime, and most of us will have more than one instance. Falls can often be the first sign that something is off.

It could be as simple as being tired, the kind that comes from not sleeping well or working too hard.

It could be blood pressure fluctuations or allergies impacting the sinuses.

It could be the failure of a certain muscle or neurological dysfunction.

And sometimes it could be a simple trip because your body couldn’t compensate as quickly as it needed to. (Or your eyesight failed and you didn’t see something you should have.)

These falls are terrifying. The mental anguish is more confusing and painful that the bruises or lacerations. The embarrassment, especially if you fall doing something simple, is so crushing.

My recent fall?

It barely left a mark on me. But, if I’m honest, it still reverberates through me even today, five days later.

Now, if you are reading this you probably know me or you’ve read some of my stuff before. I have a lot of eclectic interests so I’m not going to assume you’re here for or familiar with my disability content. But if you don’t know, I have diplegia spastic cerebral palsy, and I spend a good deal of my life as a fall risk.

I run a small publishing company putting out 10-12 books a year. I help freelance clients with their own book projects. I cover my county for a local political newsletter run by former staffers of our local daily newspaper. I write horror novels. And as of this fall, I am teaching a three-credit class at Northampton Community College.

But sometimes that’s not enough to pay the bills. So I have a part-time job in the evening.

And I fell at that job on Friday night.

In front of a LOT of people. But not one of my co-workers or supervisors saw, so that made me feel super vulnerable and invisible. On top of mortified.

And my daughter is livid, ranting about how I shouldn’t have been in a position alone where that could happen.

I’ve been under some stress, and my blood pressure has been all over the place with no logic. Allergies have been terrible. Some weeks I sleep decently, but last week I did not.

I walked about 3,000 steps in the 90 minutes before I fell, about 3.75 hours into a 4.5 hour shift. So I was certainly tired.

And even though I know and understand that I have falls, it still shakes me to the core when I have one. So, I can only imagine what it feels like when it’s not something that happens to you.

In other news, I may need to do a cat update soon. Our 14-year-old tripod cancer survivor is scheduled for euthasia Tuesday. This is the second cat I have lost in two months.

Some days go off the rails (or weird reasons why I didn’t get my work done)

Angel Ackerman 1 Comment

Whether you’re a small business owner like me or a homemaker or someone who works a corporate 9 to 5 or whatever, it often feels impossible to make a dent in life’s responsibilities.

I think as I get older, and as one friend keeps reminding me I have a significant birthday coming up in May, I realize it doesn’t matter. Stuff eventually gets done or it doesn’t and the important/necessary stuff rises to the top.

Or maybe that’s just because I’m good at prioritizing and fairly awesome at time management.

The last week or so has been exhausting and/or exciting depending on your point of view. I’ve scheduled a storytelling/written word workshop with Larry Sceurman at Hellertown Library at the end of May. I’m strategizing a memoir workshop this summer in the suburbs of Philadelphia. I helped with and sold books at a storytelling event at Bethlehem’s Ice House (hosted by Patchwork Storytelling Guild). I sold books and talked with poets at the third annual Poet Palooza 3 at Book & Puppet Company in downtown Easton.

I received word that Lehigh Valley Community Foundation approved my application for a Pennsylvania Creative Entrepreneurship grant, which I will use for national and local advertising. I performed my duties as president at Greater Lehigh Valley Writers Group and heard a fantastic presentation by Jill Peters.

And book orders have picked up. Still not to the level as last year, but enough to give me hope. I am finishing my local candidate profiles for Armchair Lehigh Valley.

Yesterday I went to the eye doctor and spent more than $500 for exam and glasses (at which point I was told, before being given the price, that they knocked 30% off everything because my insurance was crap). I tried on every pair of Parisian Phoenix pink glasses.

That got me thinking– as everything often does– that with glasses normally being updated every two years I pay about $30/month for eyesight.

And walking home from the eye doctor, I fell. So that sucked. But I’m fine, so yeah!

I received a call from my life insurance company today that I scheduled last week to convert my term life insurance into something more permanent. The bad news is, it’s probably going to cost triple my current policy. But that’s an conversation for me and another agent next week. Sigh. The insurance person kept me on the phone for 45 minutes and we may be continuing the conversation this weekend as she has an idea for a book.

In other news, my blind friend Nan received a print poetry book from a small press recently. We had ordered a braille one, and so I tracked down their email and reached out to see if there had been a mistake. Turns out they made an error so Nan will be getting her book. It felt good to resolve that and get her the book. And I wanted the small press to know there is a real need for these braille books.

Also today I applied for and received a business American Express. I’ve had a personal AmEx for quite some time but now the business is established enough that it can have and should have its own card. No more Ingram bills on my personal card. Yay! (And yes, I do have business banking, but the business account doesn’t always have the assets for large print orders.)

Finally, let me offer you this photo of Eva’s dog wearing Gayle’s sticker from Jury Duty.