Category fitness

Do I need to put on clothes today?

Angel Ackerman Leave a comment

Tonight I have a long-for-me shift at the fast food restaurant. 4 p.m. to 10 p.m.

Tomorrow I have a very busy day– gynecologist appointment at 7:30 a.m., helping Nan with her stuff around 9:15 a.m., teaching in the afternoon.

Thursday, we are recording our radio program at WDVR. Then, selling chicken from 4 p.m. to 9 p.m.

So, today I wanted to send out our acceptance letters for the Greater Lehigh Valley Writers Group The Write Stuff conference, March 11-13, 2027 at the Homewood Suites by Hilton in Center Valley, Pa. And I almost sent one so far. It’s ten minutes from noon.

Did I do things? Yes. Were they important? Yes.

Just not what I intended.

One of the items I have needed to do is grab a few groceries. I have been very careful with my diet lately (which has led to a new number today, one I haven’t seen in more than a year if not since the pandemic when I started rapidly gaining weight). And my daughter made me get dressed and go to Aldi.

Why Aldi? I wanted chicken salad and shelled endamame.

They didn’t have chicken salad and only had whole edamame. I didn’t want whole. I also wanted a salad and all their greens and pre-bagged salad mixes looked past their prime. So I came home with baby carrots (which I don’t eat, and I was hoping to make carrot pickles but I didn’t get the vinegar…), plain greek yogurt (because the flavors have too much sugar, but I probably won’t eat the plain), half and half (but I did not get coffee), crab cakes, and cheese. And bologna. Cheap cheap bologna because despite my primarily vegan tendencies I just really needed a bologna and cheese sandwich.

And two boxes of protein bars since I didn’t buy much food.

I did not want to get dressed. Until later.

Yesterday, I had my annual physical with my primary care physician. It was the first appointment of the day, and he spent 45 minutes with me. I had told myself that I did not intend to bring anything up. That I wanted to get in and out, continue my own experiments into diet, exercise and sleep, and ask for follow-up bloodwork.

He went through my late June bloodwork I did for him and the mid-August bloodwork I did for the life insurance company, with me, and requested I do another A1C and some vitamin D and some stored Ferritin… He was surprised to see– that as I told him– my “bad” cholesterol and my weight change very quickly according to what I eat. It’s how I gained almost 15 pounds this winter and lost it since July.

I still think I am among a rare amount of people who really pay attention to their bodies and try to understand and improve. He also asked how long I’ve been off my blood pressure meds– and I said– “about a year,” and then I reminded him that my cardiologist knows, or at least I told her I would probably stop taking them.

“Your blood pressure is great,” he said.

“The pills didn’t help,” I replied. I was prescribed the beta blocker because of my single incidence of afib. I stayed on it because I hoped it would help my anxiety– specifically the way my heart will sometimes race for hours for no reason. But the medicine never stopped that. If anything (and I have yet to prove this, my evidence so far is purely anecdotal, it’s food. I think the right blend of high sodium and refined white carbohydrates makes my heart want to explode.)

And my blood pressure has maintained itself in a healthy zone the entire time I have been unmedicated.

But then my doctor found out, I have been having stress dreams, disrupted sleep routines and general poor sleep since incorporating more “easy food” and less of my “outside aisles of the grocery store” home cooking. And now he’s worried about sleep apnea, my tendency to display symptoms of mild clinical depression, and my inability to relax (or have fun). He offered me a temporary antidepressant, and I declined.

And then today I remembered… I have been on the waitlist for a psychiatrist appointment for almost a year. During my routine physicals last fall I talked with my entire care team (primary care, cardiologist, mental health therapist, and neurologist) about the prospect of trying a low dose of valium as a breakthrough medication.

According to my research, doctors often give valium to children with cerebral palsy to calm spasticity and help them sleep. I asked my team about it. No one has experience with that sort of thing so they referred me to psych. So I reminded my doctor of this is an email. I told him that on bad days I often take 60 mg of baclofen– so could we try a small dose of valium in a small amount of pills to see if I took 2 mg of valium instead of all the baclofen if that would calm my muscles, alleviate my twitching hamstring, settle my heart, reduce my spasticity, and allow me to (1) stretch everything, (2) sleep better and therefore (3) recover better.

Remember– my leg muscles are unable to relax. I can’t even describe what it feels like. Sometimes it feels like my calves are so tight they burn. Sometimes my thighs feel like bricks. So if my doctor thinks I might benefit from a little something… this might be the something.

And on my one tangent for today: I have been binge-watching Nurse Jackie. I never liked Jackie, found her repulsive as a person but the older I get the more I recognize the accuracy of the depiction of people in addiction. And my daughter brought up something vital to consider:

Is Nurse Jackie an unreliable narrator?

My daughter votes yes, because there’s no way that an addict taking as much shit as she does (especially as a nurse) could appear to have her shit together as well as she does.

Interesting thought.

I have reached the midpoint in the series, and I’ve never watched this much before. And she has entered rehab and thrown her husband out of the house. And I’m thinking about it.

Meanwhile, my daughter has been tracing ADHD and autism in her family tree. My daughter– from a young age– has been super keyed in to people’s minds, patterns and habits. And just like she’s freakishly good at seeing every ripple in a dog’s body language, she’s damn accurate with her psychiatric diagnoses. And she’s finishing her bachelor’s in psych at Lafayette, she’s also developed some ideas about medication (so I asked her to do one of her recent psychopharmacology assignments on valium). She’s wondering if I might have ADHD.

My response is typically that it doesn’t matter.

I have a disability. One that stems from lack of oxygen at birth. One known to affect GABA in the body.

I score fairly high on the ACE scale for childhood trauma.

My parents were alcoholics.

Did I inherit generational trauma? Probably. Do I exhibit everything from OCD to depression to anxiety? Yes. Because my brain never learned how to feel safe and/or let its guard down. I never relax. The last time I felt truly relaxed was during some good adult physical activities that I don’t get nearly enough of. And do you know how much I need to trust my partner to let that happen?

My daughter believes something interesting about this whole ADHD hypothesis. She basically said I have not allowed myself to fail enough to recognize the truth it what she’s said. AND that because of that no clinician could ever diagnose me.

Strange food for thought.

Reflections on Health Improvement (and other updates)

Angel Ackerman 1 Comment

Part One: Reflections on Life Insurance

Earlier this month, I received a letter from my life insurance company. When I turned 50, my term life insurance policy could no longer continue at the rates I had paid for 20 years… after all, I am old now and the likelihood of my death exponentially increases.

I thought I had reduced the coverage– after all, the house is almost paid for now and the child is almost out of college so the need to have a healthy policy no longer seemed so important. Now I just want to make sure the child can burn me up and dispose of my ashes. Apparently, I never complete the process and find myself receiving a new letter that my premiums are almost doubling, after they almost tripled last year.

I called the company, spoke with an agent, and reduced my current coverage. But to maintain a long-term policy at stable rates, I needed to prove I was insurable. I scheduled an appointment for two weeks out to have bloodwork, urine and measurements done as part of a physical. For that two weeks, I drank no Diet Coke, ate no added sugar, avoided salt and processed food, ate lots of fruits and vegetables, drank ridiculous amounts of water and took my vitamins.

I lost seven pounds in that two weeks. All while thinking about the fact that life is so much harder when you’re not traditionally healthy. It doesn’t matter if you’re fat or disabled or diabetic. Part of the issue with my life insurance stemmed from the fact that I had an incident of Afib with RVR after a bad fall four years ago. Here’s some of that saga.

I believe, and my cardiologist agrees, that the Afib occurred due to bodily trauma. It was my second hard fall in two weeks that required medical attention and my body had enough. I have not been taking any medication, and my blood pressure has been fine. (And part of me still wonders if food doesn’t play an issue in that.)

But I find myself thinking once again about the gatekeepers who decide what our lives and our bodies are worth, and yes, I’m referring to life insurance and medical insurance companies. It’s exhausting to have to prove to corporations and to doctors what goes on in our bodies.

I finally had a chance to look up the numbers for my test results (and I downloaded the PDF and sent it to my doctor). Most everything looks really good and even the results in the cautionary zone of normal (all the stuff that relates to blood sugar and what not) are still normal. So, we’ll see if the insurance company declares me healthy.

Part Two: Service Dog Update

Yesterday while I was in Maplewood, N.J., with R. Diskin Black, the poet and writer and YA novelist who wrote The Night of Swaying Grass, (an experience I wrote about on my Substack newsletter here and hope to write more here in another entry) I checked my email while we were preparing to leave the diner where we had a classic New Jersey meal: eggs and hashbrowns at two in the afternoon.

I had an email from my service dog program where I have been on the waiting list for a couple years now. This might be the first post I made about filling out the application. 4 years and one month ago. They said then that the process took 4-5 years. This is a post about my early in-person interview. And here’s one from my most recent visit to the training center.

ANYWAY.

The email was from Deb Tack, the executive director at Susquehanna Service Dogs. I open it.

Hi Angel,

I am reaching out today to extend an invitation for a Meet the Dogs session. Please read the following information on how to sign uo and what to expect:

I froze. “Meet the Dogs.” Does that mean what I think it means? My heart skipped a beat.

Now, a few weeks ago, I admitted to Eva that I often felt like I was a failure because I haven’t been able to pay off a $20,000 personal loan I took out when I lost my job at Stitch Fix. It hangs over my head like a car payment without the car. I mentioned that in all this time I haven’t touched any of the money that I have saved to pay for my service dog (some of which came from that $20,000 loan) and that maybe that shows that I should be working harder to pay down my debts, that I do waste too much money, and maybe I should use some of that service dog money to reconfigure some household debts.

“But,” I said, “If I did that, the service dog people would tell me my dog was ready.”

So… Is my dog ready?

I didn’t finish reading the email. I mentioned it to Ray, who in his professional life was a lawyer. I offhandedly mentioned, “Of course, this could happen now. I have my little part-time job in a restaurant so I wouldn’t be able to bring a dog.”

“Why not?” he asked.

“It’s food service. I could bring the dog there to eat, but I can’t bring the dog behind the counter.”

“Isn’t that discrimination?” he replied.

“Put your lawyer brain away!” I told him.

We continued our outing, and checked the oil in my car with a dryer sheet from Food Lion, and read the email in the car, quickly, and forwarded it to Eva without finishing it.

I texted her.

I sent you an email. If you want to call and talk about it, give me ten minutes to find the highway.

Eva, the practical one, replied: I’m leaving for work. We’ll talk when you get home.

When I get home, I don’t have a chance to talk to Eva right away. I book an appointment for September 25, because it’s the only day that Eva and I can both go. It means I have to reschedule my day trip with another author, Geraldine Donaher, but I think she’ll understand. Or so I hope. Then– and only then– do I print and read the letter.

– What is goal of Meet the Dogs? The goal of a Meet the Dogs session is to begin to understand what type of dog you fit best with and what definitive task list our trainers will need to train your dog to perform. We intentionally invite more Partners than there are dogs available to ensure that we are able to make a match. Not every Partner will match during their first session, and some may need to come back for multiple sessions in order to find their match. Overall, our goal is to match you with a dog that you will be able to have a successful bond and work well with for many years to come. 

– What happens during a session? Members of the Partner Services and Training staff will meet with you for your session. First, we will spend time discussing any pertinent updates and then delve into which tasks and cues would be most beneficial, as well as places that a trainer should focus on taking your future dog to train. Then, you will have the opportunity to meet 2 to 5 dogs-in-training, work with each individually for a brief period and provide your feedback. 

– What happens after my session? Following the session, the SSD team will meet to discuss their observations of the interactions with each dog along with the dogs’ responses and strengths.  Approximately six weeks following your Meet the Dogs session, you will receive an email regarding whether you have received a tentative match along with information regarding Team Training. 

– Can I bring someone to the session with me? Absolutely- We highly encourage that a support person/s are present. While they will not interact with the dogs during the session, they will be able to be a second set of eyes, help with building the task list and take pictures and videos should you choose. 

As you can see, there’s a lot of “maybe” in this whole letter– and there’s more when you schedule the appointment. The confirmation reads:

“More potential partners have been invited than there are available dogs to help us ensure we find the right placement for each dog. We know everyone has waited a long time, and those who do not receive a tentative match will experience disappointment.”

No, I won’t be disappointed. I have no doubt the dogs will know. The right dog will find me and any potential disappointment will be flanked by resolution and commitment– that the closer I get to meeting my dog, the more I have to take care of myself, the less excuses I have, so that my service dog and I will have a good life together. When I think back to the animals in my life that meant the most to me, I didn’t pick them. They picked me.

And this dog– this dog is a working dog. This dog has to want to work for me.

Some things are worth the wait.

Some general background

I have applied for a light mobility service dog to improve my gait and help me recover from falls. Statistics show that walking with a dog automatically helps people with an unsteady gait walk better, and my dog will do small tasks of retrieval (fist aid kid, light folding stool), potentially carry items if I need my hands, get my phone if I need help, or pick up items from the floor if I can’t bend. Crazy to think that the steady walk of a dog, and being near it, could decrease my likelihood of falling.

The program with which I am working breeds their own puppies, sends the puppies to families for raising and basic obedience, and only when they are two years old can a dog ethically be cleared for light mobility work. The dog must be cleared by a veterinarian to be healthy enough, big enough and have the bone structure to do such work. If I understand correctly, once the dogs return from their puppy raiser families, they learn certain tasks ALL their dogs learn. Like how to walk with different gear.

And depending on the type of mobility gear– only certain dogs will do that work. A mobility service dog can wear a hard hardness, a soft harness with strap, or just a leash. The bulkier the gear required, the more likely a dog might not want to wear it. In my case, I would be fine with just a leash, though a strap might not be the worst thing.

But there is one potential hang-up for my dog… In my evaluations, if I remember correctly, we determined that while they train the dogs to walk on the left, my dog needs to walk on the right, and the ambassador dog I was working with did not like walking on the wrong side and fought me a little. Apparently, according to Eva, I walk like a drunk with the dog on the left and walk in a straight line with the dog on the right.

Once the dogs are tentatively matched– and the dog could still wash out so even that is not guaranteed– the dog spends time training for the tasks for its handler’s specific needs. Then, a few months later, the dog and its handler spend more than two weeks in an intense in-house training program.

So, it’s an exciting time, and either way, I’ll meet some cool dogs.

Why the Disability Struggle Impacts All Humans

Angel Ackerman 1 Comment

It’s Monday morning, and while my red blood count maintains there is nothing wrong, my body shows the signs of anemia, which feel better when I follow a strict regimen of healthy eating, vitamin D and iron supplements… but that is something my primary care physician and I will discuss at my annual physical in September. And he will probably express disappointment that I have regained the ten pounds I lost last year.

It’s true for all of us– when we’re sick or weak or broken, we take care of ourselves (or we try to, I hope) and when we feel better, the routines that help us maintain that wellness fall to the wayside and lean toward repeating the same problems. I know I have a 20-year history of struggling with low ferritin reserves, why don’t I do better to always keep a routine of quasi-regular supplements?

Many disabilities are permanent but not progressive. And most people experience disability at some point in their lifetime– either congenital, temporary or permanent. Any person with a disability or aging person can explain the weight of co-morbidity, that while their various issues alone may not be progressive, when combined with our temporary or new ailments can make life exponentially harder.

My mother struggles to understand how I could be so easygoing and mobile as a kid while experiencing more falls and discomfort now. As my mother, she is no stranger to the aches and pains and limitations of aging, but she didn’t connect that the running and playing and constant activity I had as a child kept my muscles looser and healthy in a way that I can’t match as a fairly sedentary adult. That’s part of the reason why I’ve usually had a part-time job that requires movement and pursued strength training as a hobby.

I know that I need to lose 30 to 40 pounds. As a person aging with cerebral palsy, this would help my cardiovascular system and help take so much stress off my musculoskeletal system. But I have learned, through years of strength training and nutritional counseling that my body reacts strongly to salt and sugar, which means if I wish to lose weight I need to not only increase my activity level, but also cook whole foods, every time. The vicious circle of “I don’t exercise enough because my body hurts/I can’t breath/I’m tired” perpetuates itself because the only way to get past the discomfort is to do it… and survive and persist. (And then there’s the ironic reality that you can overdo it, and hurt yourself trying to do what’s right.)

This is not a disability struggle. It’s a human one.

All people experience a disappointment in and/or failure of their body. It’s a point Johanna Hevda and Julia Watts Belser both point out in their work. They claim that everyone experiences disability within their lifetime, but I extend that same idea to say that all people at some point experience some sort of body dysmorphia. Even if your body works, and is completely normal, people will experience dissatisfaction with it at some point. Maybe you hate your hair, struggle with your weight, identify as trans, wish you were a better athlete. All of these experiences have nothing to do with disability, but stem from the body.

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.

Disability Pride Month is celebrated in July because that’s the month when the Americans with Disabilities Act was passed. I didn’t put that together until today, so if you needed that tidbit of knowledge, there you go. I happened to order a whole bunch of disability-themed books in late June because my good friend Nancy Scott told me I should be doing more writing in that space, and she’s right, and she’s tired of hearing me say, “when I write my medical advocacy memoir.”

The four books from the disability space that I read this Disability Pride Month:

  1. How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva
  2. A Disability History of The United States by Kim E. Nielsen
  3. Fifty Years of Walking with Friends by DeAnna Quietwater Noriega
  4. Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser

I have been working to expand my collection of books by writers with disabilities. I currently have read books that range from poetry to books with characters on the autism spectrum, though none of these books include my fascination with medical fiction, a realm where Michael Crichton and Frieda McFadden spend some time, and one of my favorite memoirs (An Exact Replica of a Figment of My Imagination) which covers pregnancy and pregnancy loss simultaneously. My Goodreads shelf of “disability” books is visible here.

Poets with disabilities on my read list include Jennifer Bartlett, Larry Eigner, Susan Glass and Nancy Scott. Twentieth-century memoirists on my shelf who explore cerebral palsy include Christy Brown and Marie Killilea, and then there are the people I know, like Tylia Flores (we connected via the Internet) and Peter Altschul (who like DeAnna above is a member of the Behind Our Eyes writing group).

Here’s a very brief review for each of these four books:

A copy of A Disability History of the United States
  1. On Hedva: I already wrote a long piece about this one, primarily to keep my own notes accessible for future use. You can read that here. Hedva is a queer writer who uses they/them pronouns and has issues with chronic pain and bipolar depression. Their essays are not a cohesive unit, but based on an essay that gained them a publishing contract when it went viral. Their greater thoughts about disability are steeped in personal experience, and often tied to their sexual experiences. But this author challenges us to view the difference between capacity and capability, just because we are capable of something does not mean we have the capacity to do it.
  2. On Neilson: Nielson ended up researching disability as an accident (or serendipity?) as she worked on her history dissertation. Hedva writes philosophically about the capitalist resistance to disabled bodies (as we are worthless if we are not productive to society) and Nielson uses her history background to explore how the capitalist framework has disenfranchised all bodies that are not able-bodied white men, which I found hysterical because one of my publishing company’s initial projects was an anthology, Not an Able-Bodied White Man with Money. See that book here. She weaves together the plights of women, people of color, and people with disabilities into the same historical framework– all of them had bodies deemed inadequate and incapable and inferior by white men.
  3. On Noreiga: This was my first time reading one of Noriega’s books. She’s a self-published author of indigenous heritage who lost her sight as a child. As someone on the waiting list for a service dog, I thought it would be fun to start with her experiences with her (I believe) eight seeing-eye guide dogs. The memoir covered the first decade-ish of Noreiga’s life in autobiography format. The final chapters each provided a summary of her later-in-life seeing-eye guide dogs. While the book did offer insight as to how these dogs perform their complex duties and build relationships with their handlers, the primary focus of the book is Noreiga’s college years and first few years of marriage.
  4. On Watts: Nancy Scott ordered a Braille copy of this from the library at the same time that I ordered the print copy, and that was sheer coincidence. Some of Watts’ ideas are beautiful, like her interpretation of observing the weekly Sabbath as a tribute to not only spirituality but also to her body as an opportunity for rest. Like Heva and Nielson, she laments the push for capitalist societies for valuing bodies only on their capacity to do work– but I think all of these writers need to consider the role of industrialization in all of this. We are no longer in agrarian societies where families live and work together communally and therefore can cater the work to individual strengths and weaknesses. Watts treads a strange line. As a queer rabbi with cerebral palsy and a wheelchair user, she tends to tell us minimal information about herself, yet connect her spiritual journey to her physical one without giving us all the details. In many passages, her affluence shows through, that her financial resources and life situation have provided her with more opportunity that the average disabled person. And she seems to have a fascination with the potential amount of times blindness appears in the Old Testament. As said before, her ideas and themes overlap with Hedva and Nielson, and she focuses on building a relationship with God where you are whole and representative of God in your broken/disabled state. She applies this to beaity standards as well.

I will be revisiting some of these thoughts in my Substack this week,

Thoughts raised by Johanna Hedva

Angel Ackerman Leave a comment
Screenshot of the Goodreads review that is also quoted in the blog piece

I put Johanna Hedva’s How to Tell When We Will Die: On Pain, Disability and Doom on my wish list probably when it was a new release.

The cover design is lovely and the bio of the author is enough to draw interest:

Johanna Hedva (they/them) is a Korean American writer, artist and musician who was raised in Los Angeles by a family of witches and now lives in LA and Berlin…

I guess the first step of my thoughts on the book would be to share my Goodreads review with you.

I gave the book five stars even though the most Generation X parts of my soul wanted to give it four, because despite how much I disagree with some of her points– I can’t stop thinking about them.

My Goodreads Review

“I almost read this in one day– Johanna Hedva’s essays are poetic, academic, and provocative. Johanna has a variety of physical and mental health issues that them outside the realm of standard able-bodies. Yet, sexually and identity also play a huge role in their experience.

Johanna is about a decade younger than me, and in many ways I do not agree with their statements and conclusions, (I am a GenX white woman with cerebral palsy from a low socio-economic background and family of addicts, and if I try really hard and expend a lot of energy I can pass as able-bodied– some similarities to Johanna, enough to understand them) but their philosophy is never wrong.

When talking to my congenitally blind friend, who is a Boomer, about this collection, my friend said, “sounds like I wouldn’t like her.” And I said that she probably wouldn’t, but she still might like the book.

This book has a lot to chew on.”

So what are some of their thoughts and my thoughts on their thoughts?

Random comments first.

  1. The title is a shout-out to astrology.
  2. Their book deal for this collection stemmed from the essay Sick Woman Theory which went viral. The attention it garnered made them more of a figurehead and/or activist than they ever intended to be. The essay Sick Woman Theory is not nearly as interesting as her response to that essay, Why It’s Taking So Long.
  3. As a member of GenX, I have some discomfort with how the queer community throws around labels. Johanna identifies as a queer, and not as a woman, which is fine, but I guess I remember the days when people didn’t need to define their identity as concisely as we do now. You didn’t need to label every aspect in which you are weird. It’s okay to just be different.

So let’s look closer at some of their points.

Essay One: “How to Tell When We Will Die”

Opening paragraph:

“Heroes die on the battlefield, never from chronic pain. Diarrhea never makes its way into myth. Tragedies are devoid of menstrual cramps.” Johanna has my full attention. On the second page of the essay, they talk about the representation of disability in early and twentieth century film, and how disabled people become “flattened by some insidious super-cripple myth.” Throughout this first essay, Johanna is tossing around some serious academic critical theory before suddenly turning into memoir…

They speak about not receiving a diagnosis for their ailments until in graduate school (despite later saying that the conditions were inherited from their mother and grandmother, so I think the statement should have been that they could not get a label on the diagnosis– she does state that doctors were “baffled” by her symptoms and “dismissive of their validity.”). And they mention that they stayed on for a second master’s degree to keep their student medical benefits to the tune of $250,000, that led to a career in the arts where they refused any job that did not meet their aesthetic. They chose poverty. They chose art.

I’m wondering why– even if they didn’t want a standard job with employee-sponsored health insurance– they didn’t just buy health insurance or take on medical debt instead of a quarter of a million dollars in student loans.

But then there are gems like “You do not have to be disabled to experience ableism” and “no matter how it arrives, disability will arrive for everyone, sooner or later” (which they repeat in the last essay.) And Johanna points out that the biggest ableist fantasy is that we control our bodies, and we will always be able to control our bodies.

Johanna talks a lot about her mother’s addictions, and the abuse they suffered at their mother’s hands, and of their own mental health issues. Her first suicide attempt happened at age nine, when she took a bottle of sleeping pills, and when she did not die, she carried on with her life.

We are more than 25 pages into the book when we learn that mental health plays a significant role in her disability, which we later (not in this essay) learn includes endometriosis and chronic shingles. I understand that people with disabilities do not owe any sort of explanation of their ailments to anyone, but if you are writing a book about disability, I believe that information should be front and center.

And in this essay she mentions her love of death and doom metal. You can hear some of her music here on YouTube.

Essay Two: “Sick Woman Theory“

The essay that started it all. I think it’s really important to understand that they called it “sick woman theory” because regardless of how they identify, the medical establishment and the world consider them a “sick woman” and they are seen as a “sick woman.” They frame their theory that our capitalist world is designed for the existence of “white, straight, healthy, neurotypical, upper- and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and maybe explicit by their society, at the expense of everyone else.” To a certain extent, I want to call out a “Yes, bitch,” (as they toss around this phrase) but at the same token– would the experience be the same in the developping world/Global south.

Essay Three: “The Blast Radius of Disability”

I have to say that I love this concept, “The Blast Radius of Disability.” Disability doesn’t effect one person, one episode, or one place or time. Instead, it impacts everything around it, everyhing that it touches. Johanna speaks of time dvided into before and after sickmess, but I can’t help but wonder how they can divide time in such a way when mental illness entered their life so early they can’t really remember a before, can they?

It is in this essay that Johanna mentions that individuals with disabilities must operate according to “crip time” not clock time, doing things as the body deems itself capable not as the world says we have to do them. On one hand, I understand the point, but that’s not how the world works. I have to believe that there has to be a balance, of not overdoing things in order to conform to the mainstream standard and hurt oneself in the process. And there’s an inference that the entire world runs on the same precision, which isn’t true. There is “island time,” “Latin time,” and “African time.” Each culture has its own realtionship with time, so maybe they need to find a place and a rhythm that works for them.

Essay Four: “In Defense of De-Persons”

A discussion of capitalism and mental illness.

Essay Five: “Get Well Soon”

“Are these my limits, or are these the limits of the world?” Johanna reminds us that disability is part of a dichotomy– the ill being inactive while the healthy take action, the disabled remain still while the rest of the world creates revolutions.

Essay Six: “Notes on Activism (aka Notes on Failure)”

Organizing is exhausting, Johanna begins. Activism, they write, “reminds us how the world actually is, not now how we would like it to be.” Activism often comes off with hypocrisy– like buying your anti-racism books off Amazon.com. Their other question: How can you balance the need as an activism to care for others, yet also take care of yourself?

Essay Seven: “Letter to A Young Doctor”

I didn’t like this one. It seemed to repeat some of other concepts. Johanna tells this doctor all the other things they have already told us and will tell us differently in future essays. The doctor approached Johanna asking for advice.

Essay Eight: “Soft Blues”

Or “The Summer of the 12-inch cock.” The first several essays that are reflections on Johanna’s sexuality. And an in-depth exploration of her experience in a mental hospital for depression that led to her experiencing an entire summer of bipolar mania.

Essay Nine: “Can I Hit You?”

The BDSM essay. Which has the most amazing line: “Pain is the price I must pay to be awake to life.”

Essay Ten: “The Freak”

Another relationship essay. The only highlight I have in the whole essay is when Johanna discusses capability and capacity. They remind us that just because we are capable of something does not mean we have the capacity for it at this time.

Essay Eleven: “Notes on Trash Talk (aka Notes on Community)”

Interesting essay where Johanna gives a view of their obsession with fighting, boxing, wrestling and MMA, and how the way a coach talks to a losing athlete is the type of trash talk we could use more of as disabled people.

The next few essays are all Johanna’s entertainment criticism. I will skip those, even though they do circle around to disability as it all does.

Essay Fifteen: “Notes on Ambition (aka Notes on Survival)“

This is a complex one– looking at what we all need, versus what we want, and how many of our ambitions are actually motivating us toward ideals that might not be our own.

Essay Sixteen: “Hedva’s Disability Rider.”

They explore this rider more in a later essay, the one I mention that speaks back to the original “Sick Woman Theory” and presents the repercussions. But here, Hedva gives us the document they send to institutions that invite her to perform. I feel like some of the items on the rider should not be listed as conditions for employment, but instead factors of how much they should charge for their fee. If you know you need a business class airline seat on the aisle, you make sure you only say yes if the organizers give you enough money. Some of the informational items are valid: like allergies. But Johanna also uses the rider as a way to advocate for everyone with disabilities and call attention to how excluded people with disabilities are. They ask for sign language interpreters, live captioning, all-gender restrooms, wheelchair accessibility and audio description.

They say they know they won’t get all of it, but they like to have the conversation and point out how unaccessible and exclusionary the world is.

And this is why hardcore advocacy is exhausting, friends.

While we would like to invite all the people with disabilities to everything, why provide the services if the people aren’t there? I know Nan and I have attended shows at DeSales University where they have one performance with audio description and live captions. These shows are made accessible with grants. Start there.

Essay Seventeen: “Room Day”

Johanna’s partner is Johannes, a German citizen, which is why they now live in Berlin most of the year so they can get better medical care. She does not mention her partner until essay seventeen. The partner to whom the book is dedicated.

Essay Eighteen: “Soft Until It Gets Hard”

How can you not love this title? Another relationship essay.

Essay Nineteen: “Why It’s Taking So Long”

In this essay, Johanna discusses the rider and how when they send the rider to an individual, they would prefer not to see that individual in the context of the institution but as a person with whom they can have a conversation. Teaching moments? Which is exactly what they say later on the page when they discuss they are now part of a “learning experience” that they did not want to be. And here’s another great observation– if an invitation comes in for any event that involves the concept of care in any way and is being organized by solely white women, Johanna won’t do it.

The essay falters between the idea that Johanna never wanted to be an advocate but now that they have the power, they feel a requirement to advocate for everyone.

Here are some great points:

  • Capitalism is so demanding, it makes us all more disabled
  • Even when we are told we “have to,” humans can’t truly do anything alone
  • It’s a fallacy that all you need is will, and the proper manifestation of it
  • Care is often framed as debt
  • You might be winning, but maybe there’s no prize

Essay Twenty: “The Hag in Charge”

A lovely adventure through Greece that offers some recollection of Johanna’s poverty and her spiritual beliefs.

A line that reminded me of Nan, who says this often: some disabled people (Nan and I like to say it’s normally able-bodied people who become disabled) have a fantasy of healing, “and then hate themselves when it fails to arrive for them.”

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.

The finger and the feast

Angel Ackerman 1 Comment

Maybe the title is a misnomer.

There is no feast, but I like alliteration.

I went to the hospital yesterday for a specialty diagnostic ultrasound of the middle finger of my right hand. I’ve been having issues with it for six months. There were about four instances, about once a month where when I reached for something, it felt like the finger exploded and I screamed out. The pain only lasted 20-30 seconds, but the whole experience reminded me of when I had a mallet finger on the neighboring ring finger. And I keep expecting to see that finger drooping.

[If you would like to learn more about mallet finger: here is the blog entry about my um… accident… where I sustained an injury removing my socks. This is the entry about meeting with the orthopedic specialist.]

And every time I move the top of my finger independently of my other fingers, it clicks. Not painfully, but it’s noticeable. It’s just weird.

Today I had to go to St Lukes Bethlehem, which is the main urban campus of the hospital network because if the specialty nature of the ultrasound. I did not know that the parking deck was under construction. And for the first time in my life, I had to use valet parking. I technically had enough time to look for parking in the neighborhoods near the hospital but… I thought that stress would be higher than just using the valet service.

I checked in at the kiosk, and thinking about it now I never had the chance to check if my Able Pay was on my file because I will be paying for this test out of pocket. I have a high deductible medical plan and I have about $1,200 left of my $3,500 annual individual deductible. Able Pay gets me a discount on procedures and offers me interest-free payment plans.

Of course they asked if I might have had a fall and I had to tell them, “Of course I might have had a fall, but not one I can connect to this problem.”

The test itself involved the doctor and the radiologist– and the doctor could feel my clicking finger. BUT because of the nature of the click, remember it only happens if the finger is acting independently, he couldn’t get an image of it. The way he held my finger to get the image prevented the click. OR he couldn’t get the ultrasound into the proper place at the right time.

He found fluid around the joint, but he couldn’t say whether or not it caused or was related to the click. And he couldn’t see anything wrong.

He said he could “grill me” longer and keep trying weird things to take the image, but we both decided it wasn’t necessary. If he didn’t see anything structurally worrying AND I no longer have the pain– then I’m satisfied.

My neurologist asked if I wanted to see a hand specialist as a next step to examine the inflammation. I said no, unless the pain returns.

In the meantime, influenced by my experience at the Hindu temple and my recent overeating/ weight gain, I have done an impressive (in my opinion) job removing animal products and artificial sweeteners from my diet. I am working to reduce caffeine consumption but that has not been as successful.

So far this week, I have had no meat, milk only in my coffee, two servings of cheese, and I may have consumed eggs in baked goods that I did not make. But the main baked good in question is packaged gingerbread cookies that came from Grocery Outlet. They are GMO-free and I have eaten four small cookies (which comes out to one per day).

The scale is three pounds down, which might be because I moved the scale and this is an old house. I am also surprised that my protein levels have still been hitting 60-80 grams a day.

Eliminating animal products and artificial sweeteners is a great way to be mindful about eating. Sure, I want to promote preserving resources and eliminate animal suffering, but there is less food noise to contend with if you start with the vegan options and ask “will one of these work?” and the bonus is that I end up getting more fiber and meeting my fruit and vegetable goals because plant-based non-manufactured foods are often the most nutrient dense.

Today I visit the ENT to set up an old lady hearing test.