Tag cerebral palsy

Never a good idea to perform CPR on oneself

Angel Ackerman Leave a comment

I have been staring at this blank screen for two days– staring at nothing but a title. Yes, the one you see up there.

As many of you already know I am a perpetual fall risk.

I have been trying for about two years to study and track when I fall. I have monitored the effects of my blood pressure, my allergies and even sodium, and now upon looking at the fall data from my Apple Watch I suspect hormones and the full moon may have an impact. Like the ocean and the tides, I suppose.

Sunporch as a cat haven

It has been almost a year since I bought this Apple Watch and it has been a year, a week and a couple days since I was last discharged from the hospital– my first ever hospitalization for a fall.

On Sunday, I went out to my sunporch, and a cat had vomited on one of my new chairs so I went to clean it. And after scrubbing the cat vomit out of the chair, I went to throw it into the garbage can that we keep on the porch as part of our package opening station.

Now, this is where I understand but I don’t understand. I knew and saw that the metal supports for one of the dog’s place-stay platforms were in front of the garbage can. Somehow, I caught my foot on it (Can we blame cerebral palsy or could it have happened to anyone?) and I tripped. Unable to catch my balance, I fell.

Sunporch last Christmas

I landed with my hands in fists against my sternum, as if giving CPR to myself. I landed on a large block of stone that forms the step to my front door. The edge of the stone block hit underneath my breasts at the spot where a bra band should be, but I was in my pajamas.

I knocked my elbow pretty badly (it’s bruised and bumpy) and I cut my leg and bruised my foot. But that blow to my chest– my full body weight– knocked the wind out of me. I walked into the house slowly and somehow ended up on the floor curled up against the dishwasher crying in pain as I pulled up my pajamas to see if I had any visible damage.

I did not.

But it hurt. It left my nerves shaken as these falls often do and it was VERY uncomfortable to sleep that night. I woke up in the morning curled up on my side so I took that as a good sign. It hurt mildly to stretch my arms or cough or laugh, but all-in-all I felt okay.

Today, I woke up feeling worse. I put on a workout top that supports everything so the weight of my breasts doesn’t add more discomfort. But it definitely hurts worse. And walking is uncomfortable. Walking fast enough and long enough to increase my breathing often makes me stop and wait.

On top of all that, I got on a scale today. I’ve gained another 10 pounds. I wish I could say I didn’t know how that was possible. But I know. I can’t believe I’ve gained another 10 pounds in about three weeks.

So I went back to calorie counting today. And more importantly nutrient and macro “counting.”

Hopefully tomorrow will be less painful– because I have a job interview for a little something that might fit nicely into my life.

The follow-up and the next fall

Angel Ackerman Leave a comment

Yesterday, I visited my primary care physician. He was thrilled because my blood pressure has stayed at 100-110/70 for the last six months. I am disappointed that my weight has not budged.

Around the last snow storm, I noticed my sinus troubles got so bad that only a day of Sudafed would stop my sneezing (see more here or via the publishing company’s Substack newsletter here) and that since then the mild lightheadness and congestion have not abated. And since I took a flying leap out the warehouse door March 1, 2023 and following that with stair acrobatics at home March 13, I had to ask my doctor– could my sinuses be contributing to my fall risk more than we realize?

So, he changed up my allergy medicine to move me from OTC remedies to prescription medication.

I also mentioned that my heart rate has been stable, even when I have no caffeine or overindulge in the stuff, and that salt has a strong effect on my heart and my weight. But I was no closer to keeping my heart rate under control first thing in the morning.

He asked me to tweak my beta blocker routine to take it before I get out of bed in the morning. And to be completely attentive to it at night. For a month, I am to take both half-pill doses as close to 7 o’clock as possible to see if that prevents my heart rate from jumping from 60 to 80 when I sit up, and then from having another jump from 80 to 100 when I stand. If that balances out my heart rate, he may move me to an extended release medication to maintain my heart rate. Especially since I have a small aneurysm in my brain.

The new allergy medicine he put me on– shifting me from Zyrtec and Flonase to prescription strength Claritin and Nasonex– was ready at my pharmacy by dinner time last night.

“It’s a preferred medication of your insurance,” my doctor said, “so it shouldn’t cost you too much.”

So, the teenager and I took the dog on a walk to CVS this morning where the generics of these two medications, for a one-month supply, cost $93. I know my Zyrtec and Flonase probably cost similar– but I never pay full-price. I use coupons and extra bucks and buy the generic, and on top of all that buy the twin pack and split it with my friend Nancy.

We walk home, and I don’t really complain about the price because I need to know if sinuses are increasing my fall risk and I want to know if I can reduce that risk so the investment is worth it.

On the way home, the dog was frolicking on a small hill, and she came trotting down to catch up with the teenager. She misjudged or maybe lost her footing and raced down the hill right at me, hit me in the legs and sent me flying. I landed on the sidewalk. My knee has a hearty scrape, my hands are sore, and my nervous system is done for the day.

Sometimes a random photo can make you smile

Angel Ackerman Leave a comment

Today was emotionally exhausting.

It’s been an emotionally hard week– in the anxiety-inducing way. Not in a bog panic attack way, but in the quiet worry eating you up inside way.

Tomorrow is Friday and out of my five goals I set for this week: I achieved one, ignored one, did the bare minimum on another, devoted 90% of my attention to the one and the final… Somehow, I forgot and thought I would do it tomorrow all at the same time.

So, I think tomorrow morning I’ll head over to Panera, have a good cup of coffee and force myself to do an hour of work on the project that I’ve been procrastinating and two hours-ish on the one I could have done more on.

I went grocery shopping yesterday. It’s probably not what everyday people consider grocery shopping but I went to Grocery Outlet and used their $5 off a $25 order coupon on $50 worth of groceries, half of which were for the Teenager who now has an ear infection after attending her first college fraternity party Friday night.

I snapped this photo while I was there because Stitch Fix always had these cookies in the breakroom and I got my trainer Andrew kind of hooked on them.

It felt good to at least get a few things into the house.

When I arrived home, I got the auto insurance bill last night and was shocked to learn my premium had gone up another 400– so that now for The Teenager and I it would cost $3785 for six months of car insurance.

This morning I had to call my former insurance carrier and see if they could beat the rate from my current one and they dropped it to less than half of what it was, though I took an increase in homeowners to do it but I now have better coverage. But that was a relief.

I also got a letter last night from OVR– the state Office of Vocational Services– confirming that I did indeed qualify for services and that I was classified as “most significantly disabled.” That’s merely a classification among the disabled people applying for service, which are also people looking for help with finding a job, receiving training or acquiring assistive technology. So, it’s a category within another specific category in a way.

But there’s a certain dehumanizing that happens with paperwork and services– and it doesn’t matter whether you are applying for a job, for disability-related services or care, or for food stamps. Just like in grant-writing, people and programs and outcomes are reduced to statistics and outcomes. Things that are measurable. Not the personalities or the feel-goodedness.

But then I look back to that photo of the cookies in Grocery Outlet and I can’t help but smile, because these are the moments of life that seem magical.

Welcome February or “Wow, it’s been a month!”

Angel Ackerman Leave a comment

I didn’t realize– or perhaps deep down inside I did– that I did not write in this blog at all in the month of January. I have written in the Parisian Phoenix blog, on my Substack, for the Lehigh Valley Armchair Substack, for Kiss and Tell magazine, for press releases and social media…

But not here.

I have spent much time applying for jobs, going on job interviews, and following up with second interviews, and working with my authors at our small publishing company, attending networking events, meeting with other writers and professionals, and grocery shopping at discount retailers like Grocery Outlet and the Dollar Tree.

(Grocery budget has been $25/week, but this week I splurged and bought a baker’s dozen bagels for $9.50 at Panera because they have a sale on Tuesday, and I used my CVS coupons and their sales to buy 2 boxes of KIND breakfast bars, a box of Grape Nuts and a box of Cocoa Krispies for $13.)

My personal favorite cheap meal this month has been these gnocchi from the Dollar Tree, served with a cream sauce I made with butter, lemon, and some artichoke hearts (using the oil they were marinated in). The artichoke hearts and the Barber Foods Chicken Stuffed with Broccoli and Cheese came from Grocery Outlet. The whole meal cost me about $3 per serving. And I used up some half and half that was on its last leg.

If it weren’t for car insurance for the teen and heat (I’ve been keeping the house at a balmy 60 degrees since I had to pay for $600 in furnace repairs in December), I have enough clients to keep me afloat indefinitely even after unemployment runs out in about six weeks. But the uncertainty of it all is hard. My biggest faux pas since my lay off was dropping the oil cap into the engine compartment of my car while topping off my fluids before a winter storm.

Luckily, good old Southern Candy and her son came to my aid and he fished it out for me– took him 45 minutes and the promise of the $50 cash I had in my wallet. I could hear my Dad laughing the entire time. I swear he’s been playing practical jokes on me from the afterlife with all of these little mechanical problems.

Like he’s checking to make sure I can take care of myself.

Sometimes, Daddy, I don’t know.

We had two snowstorms in January. During one of which, the first actually, one of the Teenager’s college friends spent the night. (Photo: Here they are at about 10 p.m. having a snowball fight with one of our neighbors, a high school friend of the Teen.) The College Friend hails from Los Angeles, so this was her first snow. And we bundled her up in home-knit hats and gloves and sent her out to shovel and play in my snow boots. Because Lord knows I am not going out in that if I don’t have to.

I drove over to the Bizzy Hizzy, the now nearly empty Stitch Fix warehouse, to show my daughter the old Freestyle and Pick carts that had been set out for the trash. The carts are laminated, corrugated cardboard so I imagined they deflated pretty badly in all the rain. I explained to her how we used to pick, and showed her the pencil cans we used to hold our water bottles and the heavy-duty page protectors that held the pack slips after installation of the Big Ass Fans blew them out of the carts. Three years, evaporated and erased.

I’m still working out with Andrew at Apex Training and meeting my strength goals even if I am failing at my weight goals. The Teen says I need to be more body-positive, but I know I am regularly showing more than 500 garbage calories into my body for the emotional sensation of it. And I also know that as someone with heart and mobility issues, being overweight is not helping.

In good news though, because I share so much about my journal both as someone with cerebral palsy and someone who finds strength training cool and empowering, several other members of my gym are now setting strength goals and strength training into their routines.

While visiting Nan the other day I got to meet a really cute dog. She’s a French sheep dog. Nan and her owner both told me her breed and now I don’t remember. I asked Siri and she suggested a Wheaten Terrier or a Goldendoodle and both of those are wrong. So, I googled French sheep dog breeds and it suggested a few and I immediately recognized the word “Briard.” And it is indeed a dog that would get stuck in briars.

And last week, the Echo City guys and I went out to Pints & Pies for burgers for the guys and pizza for me. It was a very tasty pizza. I have been dreaming of it and the cold Yuengling draft I had ever since.

The chiropractor, the dentist & the OVR counselor

Angel Ackerman Leave a comment

Greetings, my dear readers.

Today I had a lovely day with the chiropractor, then the dentist (then an iced coffee at Panera) and email exchanges with my OVR counselor.

So this will be a discussion of health, disability and my job search. I’m at the midpoint of my unemployment benefits and I’m freaking out a little.

Let’s back up…

I have only been visiting my beloved chiropractor (who used to be a physical therapist) Nicole Jenson of Back in Line Chiropractic and Wellness Center every three weeks or so, in part because without the physical labor of my warehouse job and without any complications in my gait I have not needed her. (And that’s kind of great because I also have terrible health insurance right now and no job.)

But today I went to see her, and she was very relieved to hear that my condition has been good and I have not had a fall since Sept. 30. And this was my second visit in a row with no symptoms to report. She was also very impressed with my progress with my fitness and strength coach Andrew at Apex Training. He has been pushing me hard with the weights and the core exercises all because of some pre-New Year’s resolutions we made at the gym.

  • Get weight under 150 (oh, how I was so close and failed so hard. I got down to 156 and stress ate my way to a new high)
  • Bench press 100 pounds (and I’m at 95 with more than a week to go)
  • Squat 150 pounds (Andrew sneaked this one in, and I have no idea if I’m near it)
  • Plank for 2 minutes (personal best currently at 1:10)

A dear friend pointed out that some of my exercise-induced asthma symptoms might actually be connected to caffeine intake, and Nicole definitely concurred that I needed to watch that also because of my balance issues.

And I’m still doing really well with balance and walking thanks to Andrew’s “lead with the knees” guidance.

After leaving Nicole’s, I headed to my six-month check up at the dentist. My dentist recently sold her practice– and she’s been my dentist for almost 35 years– but luckily the new dentist seems personable, smart and efficient. The staff complimented me on taking care of my beautiful teeth, to which I laughed and said, “really, let’s thank genetics because my dental habits are not what they once were.”

Then, at 1 p.m., I grabbed a KIND breakfast bar out of my bag for breakfast and headed through the Panera drive-through for an iced coffee. They offered a $3 per month subscription to their unlimited sip club for three months, and I love Panera’s iced coffee. So I treated myself. I had a meeting at Panera with the Echo City Team on Friday and I subscribed Friday a.m. I have since gone two more times.

By the time I got home, I had an email waiting from my OVR counselor. I decided that since I have some disability-related concerns about finding the right job for my next move, I would apply for assistance from the Office of Vocational Rehab. That way, the state knows I am doing everything I can to find a job. I spoke with my counselor on the phone yesterday, and had her chuckling. She said I am not her typical client, and in a way, it sounded like she was intrigued by seeing what she could do for me.

I compiled all the initial paperwork, and gave her another round today based on her subsequent requests. She’s had some interesting ideas on what her office might be able to do.

Then tonight at the gym, I was doing dumbbell rows with a 40-pound dumbbell and doing incline presses with a 35-pound dumbbell in each hand.

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.

The Reunion Dilemma

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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.

87% and placated

Angel Ackerman Leave a comment

Tomorrow is my last day at the Stitch Fix Bizzy Hizzy. Tomorrow is my last day, as I told my cat Fog, that my alarm will go off at 4 a.m.

Today, I am tired. My blood pressure seems to have come down, but my ears are ringing and my chest is tight. My workout last night worked out the kinks, and while I am stiff, very stiff, I don’t have any pain and my right leg which was giving me trouble yesterday has improved.

Speaking of my right leg (and hip), I managed to get off the floor from my knees leading with my right leg and not putting my hand on the ground not once but THREE times at the gym yesterday.

But what I really wanted to right about was the fact that yesterday at work was worse than the day before. I was back to table 33, which was the table I didn’t like on Monday. The line itself on 3B seems to catch in that area, so I spend much of the day fixing other people’s boxes as they clog the line. The support post for the line is immediately at my left, which means to put my box on the line, I need to lean forward or back. And every time I need a box, I have to wiggle it around the line.

On top of that, we’ve had a couple weeks of short days, so my body has forgotten how to work eight hours. And I don’t mean that as some sort of funny statement. My body relies on routine, because my lower body muscles can’t relax (that’s what spastic really means) and my brain can’t properly communicate with them (that’s the cerebral part of cerebral palsy; the palsy is the paralysis). So this is like starting a brand new job physically (which reminds me of all the terrifying parts of starting a new job).

On top of that, my meeting with the one person staying with the company that was supposed to talk about disability advocacy within Stitch Fix and how accommodations need to be consistent and fair… Well, while I adore and respect the person I met with… I got the feeling it was about placating me and not making change. The meeting was scheduled for 15 minutes (and is not an amount of time for meaningful dialogue). He listened and performed all the good listening skills. But he didn’t write anything down. He did not suggest a call for action. He did not even say what he could or couldn’t do.

He just basically said I was right and if I needed anything to let him know.

And then his phone buzzed. He got distracted. And he kept looking at his watch. Then he apologized and explained he had another meeting and had to go.

So my requests to write a letter to corporate have been ignored. My requests to discuss this with our human resource department have been ignored.

Needless to day, I went back to my station discouraged and a tad devalued. But that’s how it goes when you’re just a cog in the wheel and in this case, the wheel has been removed from the car and the car is trying to run on three wheels.

(Yes, I know my grammar is bad today with some truly admirable run-on sentences but it’s not even 5 a.m. and I’m exhausted, stressed and emotional.)

My Stitch Fix neighbor has been moved to table 68, so I don’t have her to offer any confirmation that this stuff is happening. And I keep stationed near all the pregnant women who get to request different help based on how they are feeling each day, while I have to advocate for my approved accommodations at least once a day.

I literally left the floor yesterday and went to the break room early when the same person who style carded my fix wrong (if you want to see the video of me tossing the whole fix in the return envelope unwrapped I’ll link it) took my empty cart and replaced it with another, which IS NOT HER JOB, and did not adapt the cart to match my accommodations. She then, seconds after, went to her pregnant friend behind me, emptied the bottom four shelves of her cart which IS NOT HER JOB and is not the accommodation I’ve seen done for anyone before, and then proceeded to help her fold her fixes.

Now, remember Sassy or Spicy or whatever her nickname was? She returned to the medical field, but she was part of our second shift crew. There was a day shift girl struggling after working hard all day. So Sassy helped her. She folded some clothes and gave them to her to scan and box. Sassy was chastised and told IT WAS A GROUNDS FOR TERMINATION. But, apparently, if you are friends and pregnant the rules are different.

Look– I have no issue with these people on a personal level, friends should do nice things for friends. BUT at work, in a large group setting, these small acts of friendship or kindness when not offered to EVERYONE around you regardless of how well you know them, especially if performed by a person in a position of authority, are favoritism. And allowing peers to treat peers differently based on personal relationships is also favoritism.

And favoritism can also be referred to as discrimination, and discrimination against certain groups, like say… the disabled… well, that’s illegal. On the federal level.

I really hoped if I were polite, and filled out all the paperwork, and kept asking, I could get them to listen. I can’t believe at my age I can be that naive.

I did 87% yesterday. And I busted my ass to do it. I almost asked to use my leave, but then I remembered numbers no longer count and it’s my final days of any income. So I suffered. And left in a lot of pain.

But my process lead made me laugh which lowered my heart rate which had been elevated all day. And then Gong Obsessed threatened to take a certain returns binner and his poorly performing peers into a classroom to tutor them in how the alphabet and numbers work, because “it might help them in their next job.”

And I got a craft paper dispenser to bring home, which they gave craft paper away a few weeks ago so I’ve been waiting.

More unintended advocacy and nursing a bruised soul

Angel Ackerman Leave a comment

Three more days.

Three more days and Mercury comes out of retrograde.

Three more days and my tenure at the Stitch Fix Bizzy Hizzy comes to an end.

I had a job interview yesterday that led to a second interview Monday.

And yesterday was the two year anniversary of Parisian Phoenix Publishing, and I found out yesterday that Parisian Phoenix did not make it to the finalist round of the Innovative Voices program of the Independent Book Publisher’s Association.

What do all these things– well, everything but the whole Mercury retrograde thing– have in common?

Me. Still talking about disability.

I’m struggling. Change happens. I get that. But I just feel like everything I’m trying to do becomes a pile of various obstacles, so am I on the wrong path? All summer I felt like maybe I was finally headed toward new beginnings and small successes, but now I have my doubts.

And even things that should be success feel like delayed failure.

I’ve gone over the finalist list for the IBPA Innovative Voices program twice now, and I asked The Teenager to take a look. And she confirmed what I thought. Every finalist is a person of color/BIPOC or representing the gay/LGTBQIA+ community. Not a single disability voice among them. And then the teenager said it, “Well, Mom, color and sexuality are how most places do their DEI.”

It has taken me 40 years to accept and embrace my disability, and now that I have not only accepted it but worked to be a voice of advocacy, I open myself up to a whole new level of hurt.

Which brings me to work today.

Monday my table got moved. Today it moved again. But surprise, surprise, I liked today’s table (even though the air was stale and hot). And then… it happened. Because I was on a different line, I had different support people. And the support person on my line did a very sloppy job of presenting my work. Meanwhile, on the other line, a different support person presented someone else with similar medical accommodations a cart that was tidy.

It might sound petty. But because the company allows each individual to work such situations out with their peers, this leads me to feel like the person who brought me my cart resents having to help me.

And so I went to my supervisor. And I reminded him that all I wanted was to be treated the same. This other person has a temporary (and technically voluntary) disability that has lasted about six weeks. I have been dealing with this for more than a year. I have been disabled and will be disabled my whole life. The person with the temporary disability gets fawned over by her peers– including one peer who literally marches up and down the aisle telling all of us to help her.

So today, she gets the work from the bottom of her cart placed into boxes with pack slips placed neatly on top, and I get my work thrown on top of the boxes which are placed on their side on the top of the cart in a great big heap.

And once again, I ask my supervisor to help me find out if Stitch Fix has a policy in place to promote consistency between disability and medical accommodations. He promises me a chat later.

I go back to my table. A lead brings my next cart, and she doesn’t address my accommodations at all.

When the outbound manager walks by, I mention this to her.

And in the afternoon, I sit down with my supervisor and a manager and we discuss again:

  • how my accommodations have been inconsistent and I don’t receive communication about how or if they will change.
  • how other people with what appears to be similar accommodations receive “better” or “more” attention than I do.
  • how too many people are given the power to make decisions about how their peers will be treated
  • how disability is an issue for any workforce, whether a person has a disability, ages into a disability or has a temporary disability.
  • how Stitch Fix’s approach to inclusion for disability (and their ‘communities’ to support such efforts) focus on mental health and neurodivergence
  • how Stitch Fix has made it difficult for me as a person with a permanent disability, especially since I was moved from the job I was hired to do and they changed how our job performance was measured.

Tomorrow I am sitting down with the health and safety manager for our facility, as he will be moving to the Phizzy in Phoenix. Whether you call it favoritism or discrimination, my experiences have been frustrating. The company maintains that medical accommodations are extremely personal, cannot be policed by leadership, and rely on relationships between peers which assume people will do the right thing.

So, what if they don’t?

I have been working with the same people for more than a year. They know. And I feel like this work-it-out-amongst-yourselves approach has led to people claiming medical accommodations when they don’t actually have then.

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.