Category disability

Return to the gym and other small successes after a week where cerebral palsy gave me hell

Angel Ackerman Leave a comment

It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.

I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Cream flavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.

The importance of exercise when you have a disability

Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.

(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)

Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.

That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.

And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.

These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)

In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.

Mundane things like food and mail order packages

Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.

screenshot from Goodreads

Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…

I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.

To bring things back around to happier things… and more references to Parisian Phoenix Publishing… (Please buy books!!!)

I prepared a special mail order package with a signed copy of The Death of Big Butch. I will be headed to the post office today.

What I ate Friday:

  • 4:30 a.m., one cup Friendly’s Peppermint Stick coffee, with half and half
  • 5 a.m., first breakfast, honey nut Chex with Silk protein cashew-almond non-dairy milk
  • 8:30 a.m., second breakfast, salted and roasted pistachios, mango jerky from Solely
  • 11:30 a.m., lunch, vegan tofu spring rolls and cabbage, diet Pepsi
  • 3 p.m., snack, iced coffee with half and half and cinnamon a very berry oatmeal cookie from Panera
  • 7 p.m., dinner, black bean and sheep cheese lasagne with cheddar and mole sauce on green lentil noodles and plantain chips
  • 8 p.m., tequila shooter with pink Himalayan sea salt and a slice of lemon

(and about 60 ounces of water)

I struggled to put my underwear on, but I hit metrics at work

Angel Ackerman Leave a comment

Today I felt stiff, and a little achy, but I felt myself, and I hit the metrics at work. I’m heading back to the gym tomorrow.

  • I soooooo wanted to stop for a cold brew from Dunkin after work to celebrate making my numbers. But I didn’t.
  • I’m more or less down five pounds.
  • My blood pressure is much more normal now.
  • I finally got a good night’s sleep.
  • I still can’t really bend, so there’s no easy way to retrieve stuff from the floor, put on my socks and shoes, or slap on my underwear.
  • The next novel in the Fashion and Fiends series is at 40,000 words.
  • I had my second visit with a coach from Modern Health today. She’s adorable, and I have six more free sessions for the year. She saw Nala and fell in love with my naughty-feathered brat.
  • I am swimming in things that need to be done for Parisian Phoenix.
  • The rescheduled service dog canine therapeutic evaluation is Monday.
  • I have been taking my vitamins.

What I ate today:

  • 4:30 a.m., one cup Supercoffee, dark roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter, mango jerky from Solely
  • 8:30 a.m., second breakfast, Quest protein bar, birthday cake flavor, 3-4 ounces cranberry juice cocktail
  • 11:30 a.m., lunch, stuffed pepper soup, diet Pepsi, one peppermint Hershey kiss
  • 1:30 p.m., Hippeas chickpea vegan cheese snacks
  • 4 p.m., Coke Zero
  • 6 p.m., dinner, sprouted flatbread airfried chips with paprika, sprouted hot dog bun with half a chicken burger, dip made with various leftovers: chicken, brie, cheddar, kale, diced carrots, Buffalo cauliflower “rice”

(and about 36 ounces of water, working on 12 more ounces as I write this)

How long do I push and how hard do I fight? Questions I have to ask as a warehouse worker with cerebral palsy

Angel Ackerman Leave a comment

The animals are all eating dinner. The Teenager has gone to care for her last client of the day. I am emotionally wiped out from all the events of the day, or the week, or maybe the last couple weeks. My friend from work, a beautiful and sassy Puerto Rican woman whom we shall call Spicy (because of her outspoken Aries nature and her abundance of passion), told me I should go home and drink some tequila.

I’m still waiting for initial contact from the insurance company of the person who hit me Friday night after work. Unfortunately, I did hear from my insurance company about my six-month-bill due next month. It doubled in cost to more than $3,000. I’m just flabbergasted.

I always have a lot on my mind and a lot of responsibility on my shoulders, and I know with my volunteer work, I put a lot of the pressure on myself by saying yes to things.

I visited my chiropractor after work, actually having left early because someone else must have booked my 3:45 appointment. She believes my current issues probably stemmed from the change at work, and started with my back and then effected my hip.

Part of me wants to write this post and submit it to the online social media forum for people with disabilities, The Mighty, because I want a conversation, but I also don’t want to risk exposing myself to issues with my employer.

So, let’s see. Summary: I work in a warehouse folding clothes. I completely disclosed my disability to the person hiring me. This was more than two years ago. In the last year-ish, we’ve had our jobs changed, our shifts changed twice meaning we’ve worked three different schedules in that time, and a recent change (December 2022) in how they measure our performance.

But, you might think, how many ways are there to count how many clothes you fold in a day?

Well, when I was hired, they took the average of how many clothes you folded over the week. If the goal was 100 a day, then if you got 98, 100, 100, 102, 100 you passed the week without incident. I succeeded with this system. I might have several days at 102 or 103 and then a day at 95. And as long as you were consistently about 90 nobody cared. Realistically, my numbers were probably 90, 98, 100, 100, 105.

Now, we work in series of 20-day blocks, and we’re allowed to miss 100 twice in that block. They look at every day independently. I knew I could not reach that expectation. I asked my neurologist to fill out accommodations paperwork. My company has been fantastic working out accommodations for me– but what to do about the days I’m more crippled than usual?

To address this, I applied for intermittent FMLA leave. The company that administers it first granted me six hours every six months. So, I did a new set after talking with my examiner, and despite my listing weekly doctors’ appointments I got the equivalent of one day a month. And because I’ve been experiencing such issues lately, and with my almost cardiac scare last week, and my service dog appointments, I have no paid time off left. I will not have that time replenished for about a month.

That brings me to the present. So, even though I did 100, 100, 110 and 90 last week, I’m already one day down. Then they moved me to a different department Friday, and my body doesn’t handle change well.

Monday I did 86% while in complete discomfort and periodic intense pain. Yesterday I did 93% while in moderate pain. They wrote me up with a first warning today. Apparently each warning comes with a month of focus on an improvement plan, during which they lower expectations. I’m told I only have to hit 90%. Today I think I hit 95%. I can’t say exactly because I had an emergency preparedness training, a safety committee meeting, a sit-down with my boss so he could administer my warning and I left early for a doctor appointment.

When I signed the paperwork, I mentioned that my lack of performance is a direct result of issues stemming from my disability which may or may not have been caused by the change in my working conditions on Friday.

I’m trying to do everything right. But it’s damn hard and I’m damn tired.

Now… the questions I wish to ask and address do not relate specifically to my company or my boss. I think the situation I am facing mimics what we see in the medical industry as well. We no longer live in a society where doctors and bosses have the power to make individual decisions.

In the interest of fairness and preventing discrimination, we have blanket rubrics that determine how every person needs to be treated. My boss knows I work hard, and he knows I will come through in the long haul. His sidekick who interacts with us all on the floor has a disability himself.

And it’s not like I was hired last week. I was hired more than two years ago. And that person who took a chance on me? They got rid of her in well-publicized lay-offs.

Apparently, they have four rounds of warnings before you “separate.” But if I recover from this current cerebral palsy episode of malfunctioning body parts, hit my numbers, and then experience something similar in a couple months, do I get another first warning? Or does it progress to second? Do I care if they “separate” me? They changed the job I was hired to do into one I cannot do, and I can’t do it because of a disability they know I have.

This is when I also mentioned that I only intend to use that leave time for unexpected occurrences. That when appointments are scheduled I will continue to used my paid time, my unpaid time and voluntary time off when offered.

The advice I was given was to have new papers filled out (the third set in as many months) requesting a full week of time off every month. That implied to me that only answer is to call off when I have any sort of discomfort– because if I show up in the building and leave when I’ve already fallen behind that will count toward my misses. But I have no paid time left, and my official leave only covers one day a month.

And sometimes the motion of the day resets my misfiring muscles.

Part of me is done fighting. I love my job. I love the company. I do hate my current schedule. But I like the routine of it all, I like that it leaves my mind free for my own endeavors. If I did give up on striving to meet the standards, I wouldn’t quit. I would still give as much as I could until the end.

But I just keep asking: when do I give up? Will I ever reach the point where I can do my job without hurting myself and will they ever reach the point where they stop upending the process of what we do? I don’t know the answer.

In better news, our neighbor brought us a fresh fruit arrangement. Which the Teenager and I devoured.

In case I forget to say later (it’s only 5:30 p.m. and there will be tequila in my future):

My blood pressure has been damn near perfect.

What I ate today:

  • 4:30 a.m., one cup Suprcoffe coffee, dark roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter, banana
  • 8:30 a.m., second breakfast, plantain chips,* peanut butter
  • 11:30 a.m., lunch, stuffed pepper soup, diet pepsi
  • 4 p.m., herbal iced tea (rooibos)
  • 4:30 p.m, four slices cantaloupe, two balls honeydew, one strawberry, one massive pineapple heart covered with milk chocolate and sprinkles
  • 6 p.m., planned dinner, green salad, tequila

(and about 56 ounces of water)

*the plantain chips have some nutrients and are pretty low in sodium

Incremental progress brings joy

Angel Ackerman Leave a comment

If you follow my blog, you may know that I have cerebral palsy and this week has been my first episode of true discomfort and pain probably in six months. My blood pressure continues to improve with my return to a healthy diet.

Being a few days in to whatever this recent situation is, I took it easy on Sunday and struggled with intermittent but intense pain in my lower body yesterday– primarily lower back and hip on my right side and quads on both sides. My legs burned as I tried to stand, and my back and hip would experience searing pain that felt almost electrical if I moved wrong, and no matter what I did I could not ascertain what “wrong” was. I would say my pain level yesterday was about an eight.

Last night, I slathered myself with a sample of Mountain Ice that photographer Joan gave me and went to bed early. (Mountain Ice feels very similar to the Arthritis Relief CBD cream I order from Charlotte’s Web, which I haven’t had to use in months!) I woke every couple hours in pain and had to stretch and rotate.

Little foster cat tripod Louise slept in my armpit with my arm scooped around her all night, which she never does when I am restless. I think she knew I was hurting.

I thought I felt a little better this morning, but very quickly at work the familiar pains returned. Yet, they did not impact my performance as much as they had the day before. I didn’t have the burning in my legs, though I did still experience some shooting pain, especially when I tried to walk after standing at my table for two hours. I would say the pain was about a six today.

And then my poor toe– if you’ve been around my blogs for a while you’ll know I have a toe that burns as well– it started bothering me again for the first time in weeks. I’ve been religious about putting my gel sock on my toe and the irritated, swollen portion of the toe had completely healed. Not any more.

I ended the day at slightly more than 93% of fully performing according to the Stitch Fix metrics, which yesterday I ended at 86% so that pleased me.

I see the chiropractor tomorrow, so I hope her combined chiro/physical therapy brain can offer some insight into what happened. I regretfully canceled the gym for tomorrow as if the trend continues, I don’t want to risk impeding further improvement by overdoing it.

What I ate today:

  • 4:30 a.m., one cup Eight of Clock coffee, medium roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter
  • 8:30 a.m., second breakfast, Fage Greek Yogurt with honey
  • 11:30 a.m., lunch, overnight protein oats with cacao, peanut butter and chia, banana, an unsweetened latte from the work machine, one peppermint Hershey Kiss
  • 4 p.m., herbal iced tea (rooibos)
  • 5 p.m., penne with red sauce, three small meatballs, air-fried asparagus

(and about 56 ounces of water)

My pain was terrible but Southern Candy’s soup was delicious

Angel Ackerman Leave a comment

I have made some amazing meals this weekend, all while trying to adhere to a lower sugar, lower salt, lower caffeine diet. I can’t even remember Friday, after I wrote last, but suffice to say, it happened. Gayle, my dear friend and art director, said she would bring me a wrist blood pressure cuff when we had our Parisian Phoenix meeting on Saturday. (Which, since that meeting I have built a rather cumbersome but functional direct buy web site if anyone wishes to buy books. Click here. I could really use some support, and some reviews, as the expenses right now are racking up quicker than the sales.)

Oh wait– I remember Friday! We were moved to inbound processing at work and I left feeling achy and crooked after tagging shirts and pants all day. Andrew at the gym led me through a tough upper body workout with more cardio than I enjoy after work,

I went for my blood work Saturday morning in the bitter, bitter cold (and found out Sunday morning that everything, even my vitamin D and my iron, are in healthy ranges. My LDL did get a cautionary note at 105, but since it was 107 last year and 109 the year before that, I think it will be under 100 soon.

When I got to Panera I ordered a large fountain drink and a cookie– I had perused the menu in the app the night before and had determined that the oatmeal berry cookies was the lowest calorie, lowest sodium item in the place. And the coffee, well I love Panera’s iced coffee and if we had one closer to my neighborhood I would be a member of the sips club.

I have limited my caffeine intake to one cup at 4:30 a.m. so since my blood work Saturday was fasting, I skipped morning coffee in favor of this iced coffee. The cookie, by the way, was amazing. It even had dried blueberries. It was a fair better option than any of their scrumptious breads since the breads are all laced with salt.

And I was good and did not refill my coffee.

After Saturday’s meeting, I did a lot of work, some reading, some dishes and laundry (including watching Minions: Rise of Gru while folding wash). My blood pressure seemed to be coming under control.

On Sunday I felt something in my lower back and hip. So I tried to take it easy but still do some chores around the house and bad web design for Parisian Phoenix.

I woke up today and I felt stiff but okay. I arrived at work, and within the first few minutes I knew I was not okay. By the end of the first hour I was down to 96% on my performance and my left side was burning. I made it through the day, but it was hard. And annoying. Because it’s probably been six months since I experienced pain like this.

But work had one extremely bright spot– Southern Candy made stuffed pepper soup. She brought in a massive batch of this stuff so a gang of us could have it for lunch. It was amazing! I had two bowls. It hit the spot after these bitter cold days.

It’s 6 p.m. now, and The Teenager made the Crabbiless Crab Cake recipe from the Imus Ranch Cookbook for dinner, an old family favorite. And I allowed myself some Coke Zero. My first Coke Zero in nearly a week.

I didn’t get as many steps in and chores done as I would have liked today, but I’m hoping to feel better tomorrow.

What I ate today:

  • 4:30 a.m., one cup Supercoffee with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter
  • 8:30 a.m., second breakfast, Fage Greek Yogurt with honey, apple slices
  • 11:30 a.m., lunch, two bowls stuffed pepper soup
  • 4 p.m., about 12 ounces of Coke Zero
  • 5:30 p.m., two Crabbiless Crab Cakes
  • 6:30 p.m., Yogi honey lavender herbal tea

(and about 56 ounces of water)

And the medical fun continues… not the outcome I expected

Angel Ackerman Leave a comment

So… when last we left our quest with the absence management company, I had mentioned that I sent my PCP an already completed form to expand the intermittent leave I had requested from work. Honestly, it’s getting more stressful than it is worth.

The doctor’s office sent me a message on Thursday last week that they had faxed the paperwork and I could pick it up when I was in the neighborhood so that I had the master copy in case the management company lost the fax like they did when the neurologist faxed it.

On Friday, I stopped by my therapist’s office and picked up the paperwork for my psychiatric evaluation for my service dog. During our chat, I mentioned that I had this physical feeling of anxiety that had not lifted since Tuesday, some tightness when I breathe, and the inability to relax, and I suspected high blood pressure since I was having headaches and constantly ringing ears.

He requested I have the doctor’s office run additional blood work and check my blood pressure. I said I would mention it. And that I was stopping in for my paperwork Tuesday, had my iron and Vitamin D blood draws scheduled for the following Saturday, and my annual check-up toward the end of the month.

The psychiatric evaluation mentions my struggles with stress and my past trauma and notes how I have worked through stuff, and also mentions that I display intermittent symptoms of general anxiety disorder and mild, recurrent major depressive disorder episodes. And I noted the diagnostic codes were the generic ones that don’t really say I have the condition, but that I’m teetering on the edge of it. (Is this why my health insurance won’t pay him? Do I not ‘require’ therapy in their corporate eyes?)

Then during the weekend, my fingers starting tingling. I contacted the doctor’s office and mentioned what my therapist had suggested and the staff scheduled me for a visit with the nurse today when I stopped to pick up my leave paperwork. And the doctor included some more blood work slips for me to add to my collection.

Meanwhile, I reduced my caffeine intake to two normal cups of coffee in the morning instead of my turbo-charged Supercoffee.

And today I tossed on my “Emotional Support Animal” t-shirt and for the first time since I have reached double-digits wore pigtails. And my new red glasses.

The Teenager called this my “Punky Brewster turns 40” look.

And then I took my vitamins for the second day in a row.

I did great at work today– I did 145 fixes, that’s 111%

Meanwhile… I’m out of PTO so my request off for the rescheduled service dog canine therapeutic evaluation was denied. I am fairly certain I can work that out with my supervisor.

I leave work, arrive at the doctor’s office, and when she’s available the nurse takes my blood pressure and doesn’t tell me what it is.

“We’ll do it again in a minute.”

The second result, based on her reaction, was no better than the first.

“The first reading was 150/98,” she said.

That sounded bad.

“The second reading was 150/96.”

That was not better.

She excused herself, and returned a few moments later, having discussed with her colleagues whether they should keep me in the office until they talk to the doctor, or if I could go home and they would get in touch with me later. Luckily, I was dismissed.

I came home, scanned the medical paperwork for the absence management company, emailed it and made myself a glass of cashew/almond protein milk with cacao powder. It wasn’t bad, for unsweetened non-dairy chocolate milk.

The examiner from the absence management company said she approved a leave of 1 day/8 hours a month, which is exactly what was put in one question in one segment of the paperwork. What is all the other information in the other four pages for????

And I’m loading up on water and I need to swear off the Little Caesars pizza and the savory food binges.

And to think it’s only Tuesday.

Busy, busy: Taking care of yourself takes time (but we always make time for adventures)

Angel Ackerman Leave a comment

It’s been what, a week?, since I wrote in this forum. I know, I know.

I have been trying to write. I have plans to brainstorm ideas for BookTok, projects to edit, and I decided to make short, very real, unedited videos for BookTube.

But, as I left myself 30 minutes to write this blog entry and “wasted” 15 minutes of that panicking over a medical form (all part of “things that have happened since last week”) I may have to leave you with a list:

  • The Intermittent Leave I submitted to my PCP was illegible once printed out, so I typed a new one over the weekend and sent it to the doctor’s office. I had not heard from them, so I double-checked the email this morning and thought the form I sent them was blank. I panicked, discovered my eyes had misled me, but had already messaged the office so now I probably have high blood pressure and look like an ass.
  • My favorite foster, Khloe the Sassy Princess and Cuddler, went to Chaar in Forks Township in search of a home. I went to visit her before the gym Wednesday and she made me biscuits.
  • My workouts have been brutal… I mean amazing, really I do. I’ve been doing what feels like some great weights and focusing so hard on form.
  • We had a heating oil delivery yesterday and I hadn’t anticipated that for another three weeks. $700. Ouch.
  • I had brussel sprouts three times this week. I do love my brussel sprouts.
  • I saw Nan Tuesday night and we practically made a comedy routine out of reading her junk mail.
  • My creative brain is swimming with ideas. Is that because I have no time?
  • I am soooooo close to fully performing at work. They messed up my accommodations Tuesday. My percentages are 98%, 103%, 103%. Accommodations make a difference.

But here’s my big take away:

Feel free to let me know your opinion.

Regardless of whether you have a disability or not, and that can even be a personal determination, getting older sucks… anyway… Taking care of yourself takes a lot of time. Monitoring your habits (food, sleep, exercise), health and treatments take so much time. Finding and visiting doctors. Physical therapy, training sessions or independent-led exercise. It’s ridiculous. Filling out that intermittent leave paperwork really drove home how much time I spend taking care of myself.

Maybe it is easier to neglect oneself. Maybe it would be so much less stressful to eat what I want, accept my “limitations” and live a more sedentary life. Maybe it is easier to stop fighting and be miserable. Maybe it takes an exhausting amount of energy to take care of oneself.

I’m a doer, a fighter. It’s who I am. So I will never stop trying. But now I think I see why some folks don’t.

Anatomy of a Sick Day, part 2 (or why people with special needs are exhausted by advocating for themselves)

Angel Ackerman Leave a comment

In the last few months, I made a promise to myself to be kinder to my body and give it more rest when my cerebral palsy-related issues flare. That was part of my logic in filing for intermittent leave, so I could feel less guilty about calling out. Because while I don’t call off often, and while I have a legit disability, I am after all American and consumed with a drive to push myself past pain and perform at all costs.

So the fact that I laid in bed for an hour this morning contemplating the benefits and the detrimental effects of not going to work, and still called out is a big deal to me. Being a good employee is a big deal to me.

But as soon as I posted my last blog entry, Anatomy of a Sick Day, I checked my personal email only to receive an email from my very nice claims administrator for the absence management company hired by Stitch Fix to handle leaves.

My sick day was being approved only as a courtesy as I had already used up my leave time for the year. I had a medical appointment in early November which launched this whole journey (Is it Time for Botox… in my Hips?) and followed up on a visit with the podiatrist where I was diagnosed with two Morton’s Neuroma (The Stabby Toe and The Challenging Gait).

I have chronicled my frustrations with this whole process in blog posts like WTF? Another Cerebral Palsy Aware Day and Toe-Day at Work.

I have had two falls since early November, and significant work changes throughout the fall. My right side has taken a lot of abuse in all of these falls and changes, and my toe still burns more than it should.

But somehow, despite have a neurological condition that has changed my bone and tendon structure, made it difficult for me to walk, and left me with muscles in my lower body that never relax, the absence management company approved my leave for up to three hours twice a year.

SIX HOURS A YEAR.

How is that helpful?!?!?!?

I reviewed the initial letters and paperwork and found that my very, very helpful and talented neurologist wrote that I should have leave for 1-2 episodes per year of an undermined length. She physically wrote in her own handwriting “undetermined” and explained that my cerebral palsy made me an increased fall risk.

And they decided that the only leave I needed was for regular twice-a-year visits to my neurologist. Why would I pay $30 per form to have special leave for two appointments per year?!?!?

To settle my nerves– because even after I wrote back to them that she requested leave for episodes not appointments they would not budge and said my only recourse was to have more paperwork completed, at my expense– I called my blind friend, Nan. Nan has a lifelong history of advocating for oneself and at this point even she is frustrated and exhausted by the constant mental gymnastics it takes to get the most basic attention.

She moved to a retirement community in September, since as a blind person she will lose her independence if she relocates at a period of time when she no longer can re-learn a setting. She told me how she asked an administrator to read her the activities calendar. The administrator read her one week. And told her to call for help getting more info.

At this point, it’s been almost six months. Nan’s rent is significant, and it would have taken 5-10 more minutes for the administrator to go ahead and finish the month. Yes, Nan can call someone to update her on the day’s activities, but as someone who never neglected to point out the accommodations she would need, shouldn’t some of this help be automatic by now?

Anyway, I’m going to download the medical forms and start filling them out myself, and see if my PCP will just sign them.

Ridiculous.

Anatomy of a sick day (and a really cute Stitch Fix Freestyle blouse)

Angel Ackerman Leave a comment

The Teenager received her remaining Freestyle packages from Stitch Fix yesterday– one from the warehouse in Indiana and one from the warehouse scheduled to close in Utah.

So, before I launch into another blog post about the frustrations of learning the limits of my own body, I waited to share this photo of her in a super adorable top I found for her on the web site. I’ve probably folded and shipped at least 20 or 30 of these. Every time I’ve dealt with it I’ve struggled with its fluidity, wrap front and floppy sleeves. I’ve thought to myself: This must be a difficult shirt to wear.

When it arrived at my house, I thought, “oh it’s that shirt.”

And when the teenager put it on, I saw that she pulled it off beautifully. In my opinion, she looks way better than the model on the web site.

Now onto the cerebral palsy update…

It’s been two years since I started this journey to learn what cerebral palsy actually is, how my body works, and what I can expect as I age. I had no real medical treatment from age five to age 20, which means this is all very new to me. And fascinating.

And it’s been a month since Stitch Fix changed their metric measurement system in our warehouse and graciously implemented my workplace accommodations. Keep in mind that until five years ago I did not consider myself disabled and I worked really hard to do and appear as typically-abled as possible. When I started with Stitch Fix, I mentioned my disability in my interview and it is because of the culture at Stitch Fix that I had the resources and the space to explore my physical condition.

Stitch Fix is in the news right now for some changes, including closing the Utah “hizzy” and asking the CEO to step down. The founder has resumed the role of CEO for now. So, this post is about me and my journey, but I also wanted to point out that it wouldn’t be possible with the support of my colleagues at Stitch Fix.

Last week was rocky. I did a shift on the men’s side of the warehouse, then returned to my home department on the women’s side to find that the support on the women’s side hadn’t completely worked out the kinks. I just repeated to myself that we were all adjusting, and this was a big change that impacted more than just me, and I jotted down the inconsistencies I noticed and pointed them out verbally but not in writing to ask questions about how my accommodations would work and how they effect operations in our department.

Because one incident of an accommodation not being met is a coincidence, multiple is a trend. And none of my concerns became a trend. But I did experience a fall last week, which undid my most recent chiropractic adjustment. Stress may have played a role in that fall.

The great news is that yesterday went without a hitch and I even got a chance to talk to more of my peers, hopefully reducing any tension that may have been introduced by my accommodations changing how the department operates. My numbers have steadily remained where they should be, and on Friday I even hit 105%.

Bad news is… I felt so good yesterday and was working hard and hitting numbers… and I did not take my Baclofen. I don’t normally take it on weekends, and I honestly don’t recall if I took it yesterday morning. I know I did not take it with lunch like I normally do.

Then, being the person I am, I went to the gym and completed my regular weight training which, on Mondays, focuses on upper body.

I came home, showered, had dinner, and by the time I did some other household chores, I dropped into bed a little later than usual. I woke up slightly before midnight with my legs very tight and my shoulder throbbing. It took about two hours to go back to sleep. At four, when my alarm went off, I got up and fed the cats and visited the bathroom. I stretched and changed the toilet paper roll.

I felt much better, but did I feel good enough to go to work? My brain said, “sure.” My body replied, “well, a hard day’s work might stress your already achy body more. And that would perpetuate the cycle.” My brain added, “And you’ve had somewhere between four and five hours sleep. Is it really wise to go to work sleep-deprived? You’re a fall risk on a good day.”

I reset my alarm for five a.m. It never went off because I laid in bed the whole time pondering what to do.

I hate “calling out sick.”

And then, after looking at my PTO bank, my brain said, “this is why you have an intermittent leave. This is a disability-related absence.” But of course, being me, I had to debate whether or not to go in late. I didn’t know when I would wake up if I went back to sleep.

So, I emailed my supervisors and “called out.”

I got out of bed at seven feeling even better than I did at four, though my shoulder still hurt and my healed mallet finger was very stiff and uncomfortable. But now at least I had had seven hours sleep.

I realized when taking my morning medication that I had not taken my Baclofen regularly. This may have proven that it does make a difference, a difference I might not notice until it exits my system. And I also recognize that I very much need to be sure to use both my left and my right sides when I retrieve and empty the fixes that come to my station.

A lot of trial and error.

The latest fall

Angel Ackerman Leave a comment

You know those workplace counters that say things like “X days since our last injury”?

I keep one of those in my head.

My last fall was November 3, 2022. The post-cortisone face plant. That was my last fall, until yesterday. Update counter. It had been two months since our last fall. The stumbles have been happening for about a week. I’ve noticed that’s how they “start.” I start to trip more. But I stay on my feet and I credit my workouts and my improved mobility and balance.

And then I fall.

Maybe the workouts, the chiropractor, and healthy eating do nothing to improve my odds. Maybe I would be a complete disaster without them. I don’t know. I’ve been taking my new medicine, even taking my vitamins (and I got battery-operated toothbrushes, testing the idea of getting a real electric toothbrush).

Yesterday, after a poor night’s sleep and a hard, stressful day at work (those details are recorded in an email to myself at work that I will not send unless the person who did not follow my accommodations says anything to anybody about me alerting my supervisor to her behavior), I came out of my garage, tripped over the stepping stone on the walk and landed after a corkscrew roll in the mud and concrete.

Watch the opening sequence of Netflix’s Special with Ryan O’Connell (season one, episode one) and you will get the idea.

I’m 47-years-old. I don’t like being face down on the concrete with my body in mud. And yes, my first thought was, “Damn, my sweatshirt is dirty now.”

I’m covered in minor scrapes. My hands. My right elbow (which still hasn’t fully recovered from the fall in November). My shoulder (though I can’t see to tell). My right hip. One of my left knee. Two on my right.

It shakes my spirit.

I also stepped on the scale for the first time since before Christmas. I had lost five pounds. I’ve gained those back plus two more. I keep thinking if I can get my weight down, my body might struggle less.

But then emotional eating sets in.

And so I ordered Wing Zone. Boneless wings and a BIG order of fries.

I’m not getting on a scale today.

Or tomorrow.