Tag health and fitness

All things fitness, mobility and service dog

Angel Ackerman Leave a comment

The last week or so I feel like my strength in the gym (Apex Training) has been dead on– the lifts have come easily and even as my feet/lower body doesn’t cooperate, I seem to get the job done without compromising my other body parts. Andrew, my fitness trainer and strength coach, has been a wonderful support and motivator as life has gotten dramatic and hectic for both of us.

Today I lifted a new PR on bench press– I am up to 80 pounds! As for flexibility and core strength, from my angle it fluctuates every day but Andrew points out a lot of his observations which suggest I am improving more than I might realize. I have noticed that I stumble less, even as my toes drag and my balance falters, knock on wood I have not fallen since Sept. 30.

I have gained back all of the weight I lost, between gin sours and peanut m&m’s and all sorts of chips from the Dollar Tree. And too much pizza! Even with The Teenager home after having her wisdom teeth plus a back molar removed, I’m still eating too much junk– milkshakes, cheese curds, the Wawa chicken fingers and french fries, Macs received for free with minimum purchase of a Diet Coke for me and a Sprite for the Teen all in the name of surgery recovery.

Meanwhile, I can see my muscles gain definition so I know if I’d stop putting junk in my body ALL THE TIME, I could really lean out and have great tone. But the immediate satisfaction of treats and savory, salty foods steals my discipline and knowledge every time.

As if that alone weren’t enough to kick my ass back where it needs to be, I’m starting to believe that the occasional out-of-breath episodes I’m having are symptoms of exercise-induced asthma. My allergies have been bad. The weight doesn’t help. And I noticed more and more that it comes on all of a sudden, even when I’m walking on a flat surface setting my own pace and not with anyone else, and I cannot get air into my lungs until I repeatedly take breaths through my nose and get a breath deep into my chest.

Today, it happened at the gym. I have never had anything like this happen at the gym. I was doing sets of 25 crunches on the exercise ball and really had trouble catching my breath at the end of the set. And I love those crunches! I normally knock them out like a beast!

Light Mobility Service Dog Update

Yesterday I was scheduled to meet with my caseworker at Susquehanna Service Dogs on Zoom. She asked if we could please reschedule for today and as I kept the end of the week open not knowing how the Teen would do with surgery, it worked out fine.

Today the Teen, myself and the caseworker met to discuss what my dog might be trained to do as a task for me, any concerns I might have, and some more updates about my lifestyle. The number one goal I have for this endeavor is to be able to go on walks by myself without fear. I miss my days of going for a 4-mile walk in the morning. I want that piece of mind. The other tasks that I asked for are help retrieving things from the ground when I can’t bend, carrying items I might have in my hand if I find myself struggling for balance, and getting a first aid kit if I need one.

Pregaming Thanksgiving

Angel Ackerman 1 Comment

If you miss my ridiculous banter, you may want to visit ParisianPhoenix.com because most of my activities now relate to the publishing company because I’m trying to develop enough business to make a living now that Stitch Fix has closed its Bethlehem warehouse.

Speaking of Stitch Fix, one of my friends who has gotten fixes religiously since I started with the company got an email today that whatever warehouse shipped her fix instead of ours did not scan the package as it left the facility so neither Stitch Fix nor the carrier has a record of it. Therefore, if she does not receive a fix today or tomorrow, she is to let them know as then they have reason to believe it is lost.

Yup. Did I ever mention that we were the most efficient, safest working warehouse in the network?

Random Cat Photo:
Touch of Gray

Anyway, back to my day. I started my day assisting the Teenager with course registration at her college. She is studying BS psychology and had a good plan. She had courses and backup courses and I planned on catching up with my NaNoWriMo word count (if you don’t know what NaNo is or you have opinions about the NaNo controversary, my take is here) before meeting Nan and a poet friend.

She could not get into ANY of her classes, nor ANY of her backups, nor ANY classes at all in her department. With my help, we found Intro to Women’s/Gender/Sexuality studies, Theory of Religion and Intro to Sociology. She’s also hoping– but probably doesn’t have a chance–to get into astronomy. The professor was on of her pet-sitting clients.

With this new course load, I think she should apply for an interdisciplinary major of her own design, the new BA in Cult Leadership.

I managed to pull 500 words for my novel before heading out to get Nan.

I decided to give Nan her “Christmas present” early. I put that in quotes because I would have gotten it for her regardless of the season. It kept popping up on the available Amazon Vine items that I can review. If you’ve heard about Nan enough, I probably don’t have to tell you she LOVES NASA. She has followed the space program since before man landed on the moon.

Nan won’t go out for the day if there’s a NASA event going on. She has cable simply so she can watch NASA TV.

I got her a decorative desk piece that has an astronaut on the moon with some sort of moon lander or rover. And the space suit has a ledge where you can place your cell phone and the lander thing is a pencil can. The most impractical gift for a blind person. It’s a sculpture you can’t see, with features for items you don’t use.

I’m relieved to say– she loved it. She loves that she can put her two pens that she keeps for sighted friends on her desk. She loves that the sculpture has enough detail that she can look at it. And she loves that for the first time, she has something space-themed she can display.

We took it up to her room and arranged it on her desk and headed to our appointment. We had made arrangements to meet a new friend, we’ll call her the Italian Poet. We were workshopping some of her poems.

Now here’s some motivation/inertia for you: If you write, paint, photograph, whatever, you must find others who share your artistic sensibilities and draw from their energy. Sometimes you share feedback, sometimes you seek inspiration together. Sometimes you learn, sometimes you teach. But the union of people in a space can build spirits and keep you going.

And after Italian Poet encouraged me to pursue my educational goals and I prodded her to finish her Ph.D., Nan and I embarked on our annual tradition: Gobbler bowls at Wawa.

We live a simple existence. Then we taste-tested a peppermint watermelon sparkling water. Nan did not approve. I did. But, as Nan says, I do seek out the weird stuff.

The Teenager used Nan and I for a photography project.

I went to the gym for leg day where I squat 120 pounds on the barbell for eight solid reps. Definitely liking that!’

100 by Christmas

Angel Ackerman Leave a comment
Yes, that’s Andrew and I

My trainer Andrew announced that he thought I could bench 100 lbs by Christmas. This was after I benched 80 lbs for three solid reps. It was a new personal record for me and another reinforcement that I have regained strength in 2023, despite the health issues.

I told him that after the Christmas season challenges we already have listed on the public goal board at the gym, we need to add the next goals for my birthday in late May and another set for my 50th birthday in 2025.

But, even while my strength increases, my stress eating continues. Now, I aim for 1300-1500 calories a day so that even if I “binge” I don’t do too much damage. Nowadays, I often hit 2000 calories only on a bad eating day.

Today for breakfast I did not go for my usual bagel with cream cheese, avocado or even more decadent brie. I had one serving of Cabot cottage cheese (it’s very decadent and smooth), a golden kiwi, about a cup of raspberries, and a cold matcha latte, my style, made with sweetened matcha powder, unflavored whey powder and unsweetened, organic coconut milk that was delightfully hearty and robust. The breakfast came to 400 calories– including the cup of coffee with half and half I had four hours earlier (and come to think of it, I never finished it. Not only did it have lots of satisfying fat to tide me, but it also had 27 grams of protein.

I have a networking event I plan to attend later in the day, at a brewery, so I had lunch at 2 p.m. and decided to stay with the high protein low cal effort. I used a whole wheat tortilla to hold almost a cup of chopped romaine lettuce and a serving of Penn Valley homestyle chicken salad. I added a small glass of diet Ocean Spray ruby red grapefruit juice and a dessert– Chobani zero sugar Greek yogurt. That meal was a little more than 400 calories and also 27 grams of protein, but I did not finish the yogurt.

Tomorrow I have a working interview, my second, for a job where I would need black pants. So, yesterday Southern Candy, The Teenager and I went to the thrift store. My four pairs of pants came to about $8, and three of them fit.

The Reunion Dilemma

Angel Ackerman Leave a comment

Tonight is my 30th High School Reunion, scheduled in the casual and amazing environment of Richmond Brewing. Our classmates own the establishment and have agreed to let us assemble and celebrate without a lot of formal to-do.

But I don’t know if I’m going to go.

I was on the reunion committee. I love the food and the beer at Richmond Brewing. It should be fun.

But I’m stressed and if I’m honest, I’m scared. And I think this is probably the first time I really wished my service dog was already here. Because having that dog would relieve some of the physical barriers to attending, which might help my emotional issues.

I’m already showered and dressed and ready to mingle. But I’m struggling with my own mobility today– which if you aren’t a regular reader I have diplegic spastic cerebral palsy which means I have issues controlling my legs. Last weekend I took a medium fall. I didn’t do any permanent damage, though I did damage my expensive glasses, probably delayed healing of my sprained right pinky, and got myself some nasty bruises and bumps on the head.

But today I fell again. This is is going to sound ridiculous (my trainer Andrew can probably vouch for me here, I think he’s seen it happen) but I can’t pick up my feet today. Primarily my right one. It’s dragging. It got caught in the cracks between the sidewalk and down I went. No damage, my Apple Watch didn’t even alert.

Which is probably a good thing as I’ve been enrolled in the Women’s Heart Health and Mobility Study at Brigham & Women’s Hospital in Massachusetts and when I fall and my watch registers it, they call to check on me. I talked with them for a half hour on Monday.

I fell on the way to the gym, and my workout went fine, although at the same time, I struggled with some muscle control.

I went over to the Christ United Methodist Church for their craft and vendor fair where Joe Swarctz, our fearless illustrator and the creator of Echo City Capers, was selling the latest in children’s books. I didn’t fall, but every bump on the sidewalk or imperfection in the floor challenged my balance.

The Teenager has to work tonight, so I’ll be on my own for the reunion tonight. And I’m scared. It’s about 30 minutes up there, and with my recent layoff gas money is tight, plus I won’t be able to have a beer. And it would have been my father’s 75th birthday today, if he were still with us, so that has me in a horrible, dejected mood.

If I had my service dog, I would feel safer. I would at least feel more secure about my ability to navigate walking. And I would know that I would have another living thing there that could help me if something did happen. I know that all of my classmates at the Reunion would be helpful, but there’s a certain comfort from those who already know what you need and how to help. Because it’s a dreadful feeling when you have an accident in public, and people want to help and no one quite knows what to do or they do too much or the wrong thing.

I’m not sure what to do, but I know the choice is stressing me out.

But if my balance is already significantly compromised, I don’t know if traipsing around an old barn is a good idea.

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

Angel Ackerman Leave a comment

I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

7 more days

Angel Ackerman Leave a comment

I wake up at 4 a.m. It’s ridiculously early, but it allows me a bit of writing and thinking time before delving into my day. And the reality is here that I only have to do it seven more times. Some of my friends are leaving Stitch Fix this week, one is done tomorrow. We are all human so some people leaving tomorrow I won’t miss, and many I’ll never talk to again.

Every job loss experience is different– and no matter how much warning you have or how prepared you think you are, it takes a toll.

People will offer advice, or enthusiastically recommend avenues of employment that won’t work. Some people begin to critique your finances, which isn’t any of their business, as they gently suggest maybe you shouldn’t have taken your daughter to the movies last week. (We saw Strays and the Barbie movie, because both have some significant statements on society’s behavior while maintaining humor and also, well, being a certain level of amusingly dumb.)

My daughter started college at Lafayette, and I wanted to celebrate this milestone with her, but we both have more commitments than time and sense. So to sit in the dark together and laugh seemed a good use of our time and money.

My doctor sent me a note that he’s concerned about my elevated cholesterol, total 183, “bad” cholesterol 107, which has me a tad perplexed because it’s been at this level for three years and we all know my diet needs work and has had some recent challenges, especially when I’ve used fast food to quickly raise my sodium levels.

I reviewed my food diary from this summer and there were only two instances all summer where my daily cholesterol was more than 200 mg/day, when the daily recommendation is under 300 mg/day. I think as I focus more on returning to a better weight, as I work to improve my mobility, this situation should improve. Probably more than half my diet is plant-based.

Speaking of health and mobility, Susquehanna Service Dogs sent me my paperwork for my six month check in. Everyone on the wait list must check in every six months.

Today I go to the gynecologist for my annual. Tomorrow I have my final check-in with my neurologist/phsyiatrist before losing my insurance. (We’re going to discuss my increased stiffness and recent reliance on my chiropractor and my urinary issues.) And Friday I visit my chiropractor.

I also received my first shipment of products through Amazon Vine. Amazon contacted me since I tend to leave reviews on the products I buy and offered to make me an official product tester. They asked me to test a purse organizer, which seems a strange product to offer, but The Teenager has put the item to work. We also received a pair of pet nail trimmers, which were very nice, and a bird toy which the cats loved but Nala is not so sure yet.

A day with the firecracker (some fun at the warehouse, and a trip to the doctor)

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Work

I came into work today feeling my oats for some reason. I don’t even know why, but I quickly got sassy and playful. I started my day with strong numbers– but immediately I noticed one of my peers running support kept coming into my valley to give her friend work, when she wasn’t really in charge of our valley.

And the work she was bringing her friend was the easy work, the work I’m supposed to have access too and this support person didn’t share any with me. Just took it all to her friend– who has no reason to need the work that requires less bending.

I look around and I see other who have been given the same accommodation I have, but mine have not been adjusted for the day. And I don’t think the person I saw with three carts adapted has official medical paperwork. Yet, I had to trade work with a neighbor because my work did not meet my documented needs.

So I mentioned to my supervisor, maybe we could sit down with P&C (People and Culture, Stitch Fix’s HR department) to offer some final insight that the company does not seem to have appropriate, consistent policies in place to meet workers’ needs when it comes to reasonable, official ADA protected accommodations.

Not even thirty minutes later, the person who brought preferential work to her friend (who is the same person who messed up my fix last month if you were here for that saga) brought another cart of that work to my neighbor, I can’t recall if she has a name in this blog, so I’ll just call her my neighbor and fan (as she is reading my Fashion and Fiends novel series. Please buy books. I am losing my job after all.) My neighbor gave her the nastiest glare, and she walked off the floor and went to someone to complain. Then, she gave me the work.

The person who brought it to her apologized, and my neighbor explained to her very politely that I have documented medical issues. She said she didn’t know, but that’s malarkey because she told me to my face that she would only give me the work when she was certain she had enough for everyone else.

So she knows better, because she was admonished before. Even my neighbor mentioned that is really is ridiculous that every day I have to advocate for myself. And they had a really good system in place in the beginning, but too many people complained that they didn’t think it was fair.

But on the happy side, we had a popcorn chicken luncheon and left work at noon so that gave me a chance to rest before my physical and keep editing Road Trip, the fourth full novel of Fashion and Fiends.

Medical

When I arrived at my primary care physician’s office, half the office had lost power. Mercury is indeed in retrograde. I have lost four pounds recently. My blood pressure is good. I had no new complaints and I thanked the team for being so diligent and willing to listen to me throughout the craziness of 2023.

And to think– salt may have been the culprit all along.

My primary care physician read my neurologist’s notes and called her “smart” and “good” and liked her assessments and her approach to my care. So I mentioned to him that I have two questions I ask every new doctor.

  1. What do you see when you examine me?
  2. If I add you to my team, when should I call you?

This allows me to digest their observations and learn from them and know exactly which doctor to call and under what circumstances.

Then my doctor and I discussed medications, and I confirmed that I’ve felt great since weaning off my SSRI and that my new cardiologist and I agree that once I get through this job loss and transition into whatever else is next we will probably discontinue the beta blocker.

It’s always a good idea, he said, to minimize one’s medications.

I mentioned that I just didn’t think it would be a good idea to have an SSRI, a muscle relaxer and a beta blocker in my system. That’s why when he called and told me to stop the SSRI, I had already been lowering my dose.

I added to the conversation that I knew I had a responsibility to do what I could to solve the problem, because the medical establishment would eventually start throwing more pills at me if I didn’t improve. And that that is not a criticism of doctors, but an admission that I felt something was off so if I did everything I could do to give the doctors more clues, it would hopefully lead to answers.

He paused for a minute, and agreed with me, and basically thanked me for taking responsibility for myself and my health.

The Gym

Today, Andrew tried to cripple me with a leg workout. I can feel him challenging my range of motion and I love it. I did manage to deadlift about 120 lbs.

Everything Wrong with America

Angel Ackerman Leave a comment

I miss my more carefree days– which didn’t seem carefree, until now, when I have several appointments after each 8-hour workday in the warehouse, health issues to sort, a job hunt and debt to pay. Life is never simple or easy for most of us, but 2023 has, for me, felt like eternal optimism and hope while being bludgeoned. I get my proverbial sh*t together, and something outside of my control decides to parachute into my life.

When Stitch Fix announced closing the Bizzy Hizzy, they scheduled all sorts of guests and workshops for us as displaced employees. My separation date is September 15, so I have four more weeks, or two more paychecks, depending how you look at it. One of the workshops Stitch Fix hosted, and paid us to attend, was a visit from the state “Rapid Response” team to explain how unemployment and career services from the state work. They handed us a booklet that told us how to survive our layoff. (Surviving a Layoff: Your Guide to a Soft Landing and a Smooth Re-entry by Harry Dahlstrom. Mr. Dahlstrom, I’m sure you’re a very intelligent and likable person, but your advice is written for middle class Americans with two cars and their own house.)

“Remember that emergency fund with three-months pay stashed away…” Oh, Mr. Dahlstrom. Do you not have a child going to college this fall? Or medical debt? Or a used car that needs constant repairs? Or a teenager whose car insurance costs $500/month because of an accident? That’s just me. Others might have a disabled or unemployed spouse, student loans, bad credit that led to predatory loans for everyday items… or maybe they just recently got this job and had been using their credit cards to survive.

“Reduce your thermostat to 68 degrees.” Oh, Mr. Dahlstrom, mine has been at 64 for two decades.

“Trim your entertainment.” I don’t have cable. I don’t have any streaming services (though the Teenager has Spotify, which she pays for, and she also bought HBO Max and made for the year upfront.) I don’t even have home internet, relying on my phone’s hotspot and public connections. I think the last time I went to a movie was two years ago.

“Prepare a weekly menu” and “put back 10 percent of the things in your [grocery] basket.” Oh, Mr. Dahlstrom. I spend $250 on groceries for myself each month, that does not include the Teenager as she buys her own groceries. And I do get coffee or a donut out, which adds up to about $25 a month, which I consider reasonable as, as you mention, I search for discounts.

Other advice includes: “collect old debts,” “turn unwanted things into cash,” “change your lifestyle,” and “bring in the paying customers” using a talent or skill. Because my half-a-double home that I pay about $900/month for is full of useful items? I haven’t even had a vacation in about five years. And my talent? It brings in about $150/month on a good month.

“Unload the family jewels.” Mr. Dahlstrom, I’m so frugal I wouldn’t even let my husband buy me a diamond for my engagement ring. When we got married, we used Irish claddaghs so all I had to do was switch it to the other hand. I don’t own a single piece of jewelry or any item worth anything. My car is a 2015, my computer is a mid-range model, even my Brooks Brothers suit is 15 years old at this point.

But this is what’s wrong with our country. As a society, we assume everyone “poor” or experiencing financial trouble or unemployment is in that situation because they are irresponsible, stupid or did something wrong. And sometimes that poverty or situational bad luck is due to society’s expectations.

For example, starting with my generation (the GenXers) we insisted that our kids go to college and saddled them with loans to do it. Then, we flooded the market with bachelor’s degrees, which rendered them meaningless, and started pumping up the value of master’s degrees. For those of us associated with the arts or wishing to pursue an academic trajectory, a Ph.D. is now required and some perfectly talented individuals with MFAs are now trapped in a life of eternal adjunct status.

And the poor Millennials also fell victim to this higher education fiasco except the cost has skyrocketed and these poor kids are starting their lives with student loan payments that rival my mortgage and they can’t land a job with a living wage so they work in warehouses with the same people who skipped the education in the first place.

Now, add to that the way the medical system works. In my opinion, and this is just my opinion, more people than ever need some sort of medical support in their life. Whether it be disability, illness, mental health struggles or maintenance medication, it seems like more people than ever spend a ridiculous amount of their income on healthcare.

I have been extremely fortunate that my mathematical brain allowed me to calculate costs and I determined that the free to me high deductible health plan, when you included the employer contribution to my health savings account and a $50 contribution from me to that same HSA each paycheck, paid for most of my medical costs this year (except for my mental health therapist, who for some reason, the medical insurance company likes to pretend doesn’t exist. They just won’t communicate with him or pay him).

Now, before I continue on this rant, I don’t understand why healthcare in this country is primarily connected to employers and employment. Why is it an employer’s responsibility to provide access to healthcare? Eliminating this ridiculous practice might be a good first step to getting healthcare under control. If you meet certain criteria, you can qualify for government-sponsored insurance, which also dictates the level of care you receive, and the open marketplace for healthcare is expensive.

I just don’t understand why everyone isn’t pushed to the open marketplace OR why everyone can’t qualify for government insurance. If everyone went to the open marketplace and insurance companies had to compete for individuals instead of corporations perhaps the access to care would change. In other words– even a company like Stitch Fix– has thousands of employees. If insurance company had to court those individuals and families, they would have to work a lot harder to court them versus convincing one corporation to allow them to insure a large group of individuals.

I missed a month of wages after my hospitalization, which due to the one week waiting period, even with my employer-sponsored short term disability insurance, only provided three weeks of wages at less than 67% of my normal wage, and on top of that the company administering those payments misplaced my paperwork which meant I had to repeating submit paperwork and did not get the last week of those wages until one full month after I returned to work. And my doctor had to submit three sets of paperwork. Which, technically, costs $25 a form for the doctor to submit.

And because I have a congenital and permanent mobility disability, I always need physical therapy. But physical therapy sessions cost hundreds of dollars and insurance companies limit access to them. So I hired a personal trainer and pay him $25 a session (which bless him, he has now reduced his rate to contribute toward my fund to pay for my service dog which is another $5,000) and I bet Mr. Dahlstrom would say I should eliminate that from my budget as an extraneous expense.

But Mr. Dahlstrom, I imagine, does not live with a disability and has probably never experience what it’s like to have a leg that just suddenly stops working or a hip that feels like it’s waving to people from my butt. And since my muscles and my brain literally cannot communicate, I have to physically show them what to do so that movement is reduced to muscle memory and does not have to include the brain.

In closing, I’m going to end this long and winding blog post with a celebration that also highlights everything wrong with America. My friend Southern Candy from Stitch Fix turned 65 yesterday and she asked to go to Shady Maple Smorgasbord. That place was SO BIG, I think my whole d*mn town could have dined together. They had so much food and so many cooking stations I think we could have fed a village from a developing nation for a week.

The staff was amazing. The food was quite good. The gift shop was enormous. And in general, it looked like people were only taking what they could eat. But we all ate too much. I had three dinners and two desserts and spend several hours thinking I might vomit. The cajun catfish and the carrot souffle were my favorite. And I really wanted to punch an old man in the face because as I was reaching for the last piece of coconut custard pie, he snatched it away from me.

And the reality of how much food, how many steaks, how many excess calories we were all consuming filled me with such guilt and shame. Our culture, and you can disagree with me, is so centered on gluttony and selfishness. So while I was happy to spend time with my friend, and take a road trip with her, and laugh with her– I have to ask: how can such a place exist? I’m sure the intent, because Shady Maple started decades ago, was to provide a place where people could dine and have a wide variety of choice and not have to chose, or for families to dine together while pleasing difficult eaters. But this was insane.

Who are these descriptions for? A rant on internet image descriptions (endorsed by a blind person)

Angel Ackerman 1 Comment

There is a new accommodation popular on the internet– image descriptions. Nancy and I were talking about it last night, because she has her cell phone now and is receiving email and interacting with the web it new ways.

She asked a question that has bothered me about these descriptions since I first encountered them– who benefits from them? Depending how the description is written, it doesn’t help and if the text near the image is well written (in an email, newsletter or blog) a description should be in the text. (But I’m also trained by my experiences with Nancy.)

If I described a selfie of me as a woman about 5′ 4″, brown eyes, glasses and brown hair in a floral dress many of those details mean nothing to a blind person. Details that matter would be I have wild curly hair that flows past my shoulders, I have uneven fingernails but smooth skin, and a long sundress with ruffles and a kick pleat on both sides. And when I walk, my gait has a scuffle to it due to my cerebral palsy.

See the difference? Pun intended.

Most of the images I see described feel like they were written for someone who had seen at one point. A congenitally blind person does not attach meaning to colors or conjure the same connection to concepts like “sky” that a sighted person does. Just like when I interact with darkness, while I use techniques Nan taught me as to not harm myself, my concept of that condition and hers are different. When the electricity goes out at night, nothing changes in Nan’s world except the television won’t work.

I feel like too many attempts to acknowledge and address the needs of the disabled focus on the experience and needs of the able-bodied who become disabled which are often different from the needs of the congenitally disabled, even if the impairment is the same. In my experience, the able-bodied community wants to fix disability and would rather see the disabled person function in the same manner as the “normal way” rather than adjust their expectations and methodology to accept a method easier on the person with the disability.

Again, in my experience, people with disability learn the “right way” and must struggle with the “right way” and even accommodations can focus on allowing the person to perform the task the “right way,” until the disabled person, a clever occupational therapist, or empathetic mentor finally discover an alternative method that might not look like the right way at all.

And sometimes that makes the able-bodied community uncomfortable. Consider the brouhaha one can often encounter when dealing with handicapped parking spaces and who deserves them and the “rules” regarding having a service dog in public.

And on top of all this, we have the able-bodied community who experiences temporary disability or permanent disability. When these people can’t go of their “right way,” that is when we start to see efforts to make the disabled experience feel more like the able-bodied one. It’s actually person who went blind at 30 or the person slowly experiencing vision loss who wants to hear about the color of my hair.

And those seem to be the type of accommodations that “catch on” and “stick.” Because it’s an activity easier for the person extending the gesture. The sighted person writing the description looks at themselves as if looking in the mirror instead of imagining how someone might find him in a dark cave. And the answer is not “with a flashlight.”

In more personal news, thanks to the hard work of my chiropractor, Nicole Jensen, and my trainer at Apex, Andrew, my body might be overcoming its last episode. It’s annoying to think I must maintain three workouts a week to keep my body from seizing up and forgetting how muscles work.

Yesterday, I could feel my leg pulling and turning wooden as I like to say. I can only describe it as I can feel it pull away from my body. It no longer listens to my nervous system and it feels like I have to pick it up and drag it with me as if it were a prosthetic.

So, after Nicole got everything aligned Wednesday, and an upper body/core session with Andrew after chiropractic care, and some reflection Thursday from my new cardiologist, I walked to the gym Friday. We did legs and some barbell squats. And some planks. I haven’t done planks in ages. Held steady for a minute.

Andrew asked me functional questions about what my legs were doing and I had to remind him, “I can only tell you what it feels like, I really on your observation to tell me what’s actually happening.”

Because with cerebral palsy, my muscles rely on repetition and routine to remember how to function. As I understand it, my brain’s instructions just don’t make it there. So my lower limbs just do what they want, until I consciously connect them all and just like learning to fold clothes into perfect little 9×9 squares as I do at Stitch Fix– it only works when the action is embedded into muscle memory and the thousand steps it takes to execute just happen without thought. THAT is what I am hoping to achieve. But as I learn what to correct and how, someone (and that’s Andrew) needs to observe me to make sure I don’t miss anything.

Just some Saturday musings.

Feeling heard (and a week gone by)

Angel Ackerman 3 Comments

Folks, I don’t feel like writing this. I’ve had so many demands on my time that I don’t even think about what I can write or when I might have the time to do it. I’ve had one job interview, told one I wasn’t interested and have a third coming up Monday. Today was the first day at least this week that I didn’t feel like my leg would fail to support me.

I had some incidents last week where my overscheduled life led to idiocy (like leaving the rats in their play area, leaving the house and driving 20 minutes away before I remembered them) and some joyful times too, but honestly I feel like I write my calendar out on Sunday and don’t even have a chance to look at it until Thursday.

I gave my doctor the new paperwork for the absence management company last Thursday and I haven’t seen any evidence that they received it. I continue to struggle through my issues at work (though today was the day where I didn’t feel like my body was falling apart all day but more on that in a minute) meanwhile… I have a hard time keeping my feelings in check when I see others milking whatever they can to get special treatment at work.

One woman had a migraine all week but did her job.

Today we had a massive barbecue at work, and an appreciation luncheon yesterday, as the local managers rush to spend their budgets before we lose our jobs. Despite this feasting, I have lost 2 pounds according to the doctor’s office (and I hope that it might be more since I have increased my sodium so much that their should be some water retention with that).

In the photos, you can see some of us going through the food line, my friends concentrating on their bingo cards, and a friend’s demolished plate.

After all of this, I went to a new cardiologist. A female. I swear I know her from my nonprofit work and I have to wonder if she served on a board somewhere I worked. Yesterday, I went to the chiropractor, my beloved Nicole Jensen of Back in Line, and then went to work out with Andrew at Apex Training.

So, I told everyone my theory. And to date, no one, including the new cardiologist, has disagreed.

Fact: In January, my blood pressure went up. I don’t know why. I was taking Lexapro at the time to try and keep my blood pressure lower, because it was due to stress (and I had lost my father a year early and don’t hear from my other family members, even when I try to reach out so the idea of a low dose SSRI didn’t seem like a bad idea). I had been on that medication about a year. I also take baclofen to help my legs move better, which I started more consistently in November, but had been taking since May. My doctor advised me to watch my diet and my sodium.

Event 1: March 1 I dove down the eight concrete stairs at work, smashed my finger (in a bad sprain that has left it still quite bent) and almost passed out after the event. My blood pressure was fine.

Anecdotal evidence: I had eaten a lot of fast food that weekend.

Sidenote: Saw the hand rehab specialist/occupational therapist for the first time during the day March 13, went to work late, and had set up balance physical therapy to begin March 20 at the request of my doctor.

Event 2: At the end of the day March 13, about 7:30 p.m., I fell down the stairs going up to my room after a big meal. I had had Little Ceasars and Taco Bell that weekend. The bruising on my back knocked the wind out of me and my face was gushing blood where I had slammed it into the air conditioner that my daughter had rested on the floor. Went to the ER for stitches, found out I was in afib.

It took some time after that to get the results of the heart monitor back (I’m fine), and it took some dickering so the beta blocker didn’t give me low blood pressure and postural hypotension. But I kept having episodes of each.

Later, in June, I was told to stop taking the SSRI because I had a risk of fatal arrhythmia.

I asked my doctor to see the nutritionist and she said I was not eating enough salt because of the cardiac diet recommended and washing what sodium I did eat out of my system. Within three days, I felt 90% of myself.

Now, I mention all of this because one of my original theories about why this had happened addressed salt. I had thought the universe was punishing me for eating all that bad food, and my first cardiologist whom I saw in the hospital, pushed the idea away. And that’s why I went to a new doctor.

I also believe the afib could have been caused by the bodily trauma of my fall down the stairs. And that I feel so awful when my blood pressure is 110/60 because of my cerebral palsy– that my body just needs more than that to make this body move.

And my new doctor believes that I’m on the right track. That:

  1. Lack of salt might have initiated the symptoms which led to the falls in the first place.
  2. I might never have an incident of afib again.
  3. And — when I’m ready– we can potentially change or eliminate the beta blocker.

Honestly, with losing my job this fall, I’m not sure now is the time to take my heart off anything that helps keep me calm. She also mentioned that I might do better on an extended release formula.

That’s all I got. And this took up the last of my free time. Sigh.