Tag cerebral palsy

Monday visit with a new hand specialist at OAA

Angel Ackerman Leave a comment

I can’t believe what a magnificent, crisp and sunny March morning today has become. I spent the weekend working on the final tidbits of Thurston Gill’s devotional coming out this month at Parisian Phoenix Publishing, visiting the Lafayette College Store to purchase Echo City Caper books for an upcoming meeting, delivering marketing materials to author Larry Sceurman and his wife Barbara, writing how-to instructions on how to leave book reviews online (do you need instructions like that? If so, read them here.), and proofreading the latest anthology from self-published author, R. (Rachel) C. Thom(pson). In between these activities, I did laundry, vacuumed my room, continued a book rearranging project, and stripped/remade my bed.

All with my pinky in a cumbersome splint.

Southern Candy came to visit yesterday afternoon. We played three wicked games of Uno with the Teenager. I won two and The Teenager won one. It felt good to laugh.

Southern Candy and I both had doctor appointments today that kept us out of work, so we met at Bethlehem Diner for breakfast before I headed to OAA Orthopedic Specialists on Centronia Road, behind Josh Early Candies, on Hamilton Street in what I think is South Whitehall Township with an Allentown mailing address. [Note on the diner: speaking of Rachel, I’ve dined with her at that restaurant before she moved to Florida and looking at the dessert case, I must go back for coffee and baked goods.]

The finger is looking and feeling much better. Discoloration and swelling has greatly reduced. The bruises on my leg look worse than and feel worse than my finger.

I saw a new doctor today. While waiting in one of the exam rooms at OAA– the same practice that treated my mallet finger last spring– I noticed a framed newspaper article on the wall by someone I know. So I texted her. We had a brief exchange and that was a wonderful reminder of how small the Lehigh Valley can be.

My new doctor informed me that the OAA offices recently had a ransomware virus and they traced it to a fake xray disc, so now they have to be very carefully how they look at images. It makes me wonder if soon we will be going back to the days of oversized manila envelopes and transporting films.

He then very kindly and patiently described my injury in a way that I wished I remembered better. He believes I almost dislocated this pinky, and probably bent my ringfinger back. The momentum probably caused ligaments to pull, and dislodged a scrap of bone like a piece of dirt clinging to the roots of a weed when you’re cleaning the garden. That’s the exact description he used. It looks like a fracture of the phalanx but it’s more like a chip off the bone where the ligament was holding on. So it’s a sprain.

He saw the mallet finger in my file from last year, and we talked about the folks at the Institute for Hand and Upper Extremity rehab, because he wants to refer me there and follow up in two months. He ditched the splint from urgent care, and said all that will do is make my finger stiff and increase the chances that my knuckle will get swollen and bulbous.

Instead, he wrapped my ringfinger and pinky snugly together with some velcro so my ring finger can be the new splint. “Wherever the ringfinger goes, the pinky tags along,” he said.

I told him the hand rehab people did a fantastic job overseeing my recovery from mallet finger so I am happy to visit them again. He pointed out that people often underestimate the importance of the pinky, and don’t realize it’s role in overall grip strength. And that injuries like the mallet finger and the one I have now have much better outcomes with swift and proper treatment, but too often people let them go a week or two before seeking care.

That made me feel a lot better, because I felt a little silly seeing a fancy hand specialist for a pinky. But, as I told him, as someone with cerebral palsy, I’m a little too aware of how quickly one injury can spiral into different complications.

88%, a gut feeling, a pizza and some Stitch Fix fans

Angel Ackerman Leave a comment

It recently came to my attention that March is Cerebral Palsy Awareness Month, in addition to Women’s History Month. So as a tribute, I fell down the stairs leaving work on March 1. Seven cement stairs.

I have a massive bruise on my thigh, a knot of a bruise on my left calf, a swollen pinky that looks like a dog bit it, and wounded pride. As many injuries do, my finger throbbed and ached most of the night.

At work, I was frustrated, cranky and tired and moving so slow. By my calculations, I did 110% on Wednesday and now 88% on Thursday. WTF? I asked myself. Meanwhile I hear my blind friend Nancy Scott’s voice in my head, “Angel, you did too much.”

Several managers came over to ask how I was, I said I was okay but my finger was swollen and would not bend. They all mentioned I might see the safety manager later in the day. I didn’t. The person checking in on me most was my process lead, who also has a disability, and I told him I knew I wouldn’t finish at 100%. But apparently he didn’t know I had thrown myself down the steps.

The conversation went something like this:

“What happened? Did you miss a step?”

“I was on the landing and I lost my footing, and I had that split second to regain my footing but there wasn’t enough room on the landing so I thought I could gain my balance by kind of trotting down the steps but I missed the first step.”

“So where did you end up?”

“At the bottom.”

“So you fell down ALL the steps.”

“Yeah.”

I think I had 24 boxes of refix yesterday so that meant I dealt with a lot of carts, which slowed me down further. And my neurologist warned me that any injury might short circuit the relationship between my mind and my body. My brain and my legs don’t have many communication skills as it is and anything going on with another part of my body will muddy up the whole situation.

My leader assured me that we could come up with a plan, but that still frustrated me, because I’m already on a probation of sorts (which stemmed from a work-related cerebral palsy “flare-up”) and I see this as an endless cycle of me doing my job and then falling behind and getting in trouble. And the more they push me, the more rapidly the situation will repeat. Another friend who used to work for a big local employer in administration said she’s glad this happened because it might make my disability more real for them.

But anyway, after work, I had a lovely conversation with Thurston, our Parisian Phoenix author who has a devotional coming out this month when a certain publisher gets herself sorted, about his book and the future.

When I got home, I removed my final band-aid of the day and had a weird gut feeling something was wrong. Like this needs a doctor wrong. So, bribing The Teenager with a pizza from one of our favorite pizza places that she forgot existed, we went to Urgent Care. Between her ear infections and my injuries, we spent a lot of time there.

The doctor seemed a little perplexed that I broke my “middle phalanx” of my pinky falling down seven cement steps. They expected more damage. What can I say? I have skills. And that friend I mentioned above? She broke several ribs falling down the stairs in her house and ended up as an inpatient in the hospital so she’s jealous right now.

So, once I get a tetanus shot and a splint, we head out. We stopped at Antonios Pizza and Ice Cream at the 25th Street Shopping Center and order a pesto pizza. We haven’t been there in 2-3 years because… Covid… life crazy… lazy… Dominos is cheap and easy and there is an app.

They recognized us! They recognized us, our order, and to prove it they pointed to the booth we used to sit in as a family.

And they love Stitch Fix! The Teenager opened the box and ate a slice in the pizzeria while we pointed out what Stitch Fix clothes we had on our body. And then I had to show off and fold my sweater into a 9×9 square.

It was the kind of small town encounter I love about our urban corner of the universe.

The ticking time bomb dove down the stairs

Angel Ackerman 3 Comments

When I worked at the Lehigh Valley News Group and The Teenager was a tot of two-years-old we referred to as “the wee one,” I stumbled over the cart return at Wegmans after doing some grocery shopping on the way home from the office. The Wee One was with me, as she attended day care literally next door to my office. I would appear in the doorway after nap time, have snack with the kids, and return with her to my office around 3:15 where she would play on the floor beside my desk for about an hour before we went home.

I clearly remember I paid $770 a month for her to attend daycare, where I dropped her off around 7:45 and, as I mentioned, picked her up at 3.

In the Wegmans parking lot, I had removed the Wee One from the cart in the cart return and turned to return to my car– my only new car I’ve ever had a 2000 Saturn SL2. I had wanted a Saturn since they came out, and I was very pleased to finally have one after my series of mid-1980-something Ford Escorts.

I had tripped over the metal rail that supports the cart return and banged up my elbow pretty badly. (My elbows sustain a lot of damage in my falls.) I put the Wee One in the back of the car in her seat, and got into the drivers seat, and turned on the car and the air conditioning. That’s when I started to pass out.

With black spots before my eyes, I dug frantically into my purse. I couldn’t see, so I was merely feeling around for my phone. It was my Nokia flip-phone in the pre-iPhone days. I found it, but couldn’t dial. I hit the recent calls menu and dialed the first number on the list.

It was my friend, Gayle. She called the store, and I still remember the flood of cart attendants and managers that stormed into the parking lot looking for the woman and the toddler in the running car. I stumbled out. They took me, the Wee One, and the groceries into the store and called my in-laws to drive me home. The manager asked if I needed anything and without missing a beat, the Wee One said, “Ice cream.” They didn’t hear her, and she got very annoyed that she didn’t get ice cream.

That was circa-2006.

I tell that story because that was the scariest fall I ever had. The second scariest was when I broke my ankle outside the old Maier’s bread factory and almost passed out sitting on a fire hydrant waiting for my husband to arrive with the car. I was going to say today was the third scariest, but then I remembered the time when The Teenager was in kindergarten and I fell on a bad patch of sidewalk and spit out a tooth.

The most exotic fall I ever had was in Yemen.

The most embarrassing was when I fell in the middle of the Halloween parade in front of the whole damn town. That was a year ago.

But today was another first. My first official fall at Stitch Fix. If you are a regular reader, you already know I’ve been struggling with pain recently. I woke up feeling pretty mobile today, and I was even able to touch my toes at 4 a.m. so I skipped my morning dose of baclofen. I was instructed by the neurologist to take the medicine as needed, and when I saw her last, she encouraged me to take it more. I found myself wondering if the baclofen might be somehow connected to the muscle pain I’ve had.

I had a great day at work. I had another observation with my direct supervisor, which came in at 104%. I laughed loudly with my friends at breaks. I brought Thurston a hard copy proof of his book launching in a couple weeks. I may have eaten too many honey roasted pistachios, but pistachios are delicious. I finished the day at something around 110%.

I gathered my possessions, grabbed my coffee cup, and slung my purse over my shoulder. I trotted toward the door, eager to see my chiropractor at 3:45 pm and hear all about her trip to Vegas for a work-related convention. I stepped out the door, said goodbye to the security guard and took another step across the landing. I stumbled forward. I didn’t have enough space on the landing between me and the stairs– the concrete stairs– to regain my footing. The situation swirled for a minute and I tried to use the momentum to trot down the stairs and regain footing that way.

I failed. I dove down the stairs. Thank goodness my possessions broke my fall. Everyone rushed to my aid. Someone offered me a hand. Someone gathered my metal coffee mug which had rolled away. I reorganized my purse and asked everyone to give me a minute before I stood up, that I was fairly certain I was fine, but I wanted to catch my breath before getting up.

People starting asking the why and how of my fall. I assured them nothing but me made me fall. This is life with cerebral palsy.

My friend Sassy, the same friend who accompanied our colleague who had a heart attack to the hospital, was suddenly there. I notice blood. Sassy helps me find it on my pinky. Our safety manager goes to get me a band-aid. Another leader forces me into the building to file an incident report. I’m annoyed because… well, I was hoping my chiropractor Nicole Jensen could help me figure out my random intense muscle pain.

I sit down. Sassy is with me. One of our managers from second shift is there and looks concerned when she sees it’s me. The safety manager stays. My supervisor comes in. I start to get sweaty and lightheaded. This freaks me out because I’m barely hurt. I try to text my daughter to have her call the chiropractor and I can’t. My former second shift manager does it and we just end up calling The Teenager.

Sassy fans me and brings me a cone of water, but I’m too shaky to hold it. She brings me a water bottle and fans me as I joke and the safety manager delicately cleans my finger and puts on a bandaid. My supervisor starts the incident report. Thurston comes and takes my blood pressure. I’m feeling myself.

They offer to arrange an Uber for me, and to send an Uber for me in the morning.

“I’m okay,” I tell them. And I thank them for bringing me back into the building, because otherwise, who knows what might have happened on the road.

I left with the nurseline phone number. I promise to email my boss and text Sassy when I get home. Once I arrive, I shower. Luckily, no more blood. But there’s a chunk out of my finger and I think my thigh will have a massive bruise tomorrow.

It’s been eight weeks since my last fall. I had falls in November, December and January, so making it eight weeks is good. But I have no idea why it happened.

The update on life, service dogs, what it feels like to live with cerebral palsy, and other things I know at least one faithful reader is waiting for

Angel Ackerman Leave a comment

I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.

Meanwhile, forgive the cornucopia of prepositions in that title.

And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.

The disability/cerebral palsy/dog stuff

As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.

I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.

I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)

Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.

But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.

My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.

And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”

The Stitch Fix stuff

I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.

Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.

Or I’m guessing will lead to termination.

I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.

So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.

I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.

I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?

The fun Stitch Fix (fashion) stuff

There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…

And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.

I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.

The boring stuff

Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.

So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.

Chill out, have some coffee and open some packages from Stitch Fix and a pinch of medical stuff

Angel Ackerman Leave a comment

It’s been six days since I touched base. My friend is home from the hospital and probably climbing the walls. I’ve been doing a lot of work on Parisian Phoenix stuff– getting the Substack off the ground, editing material for clients and my authors, and sending packages out.

Normally I go to the gym Monday, Wednesday and Friday but this week I haven’t felt well. Even after my chiropractor appointment on Monday, I still struggled with body pain in unusual places. My chiropractor confirmed that I was feeling more issues in my sacrum as opposed to my normal troubles in my hips. My quads bothered me for a while after that and the drop from warm weather to icy wintry mix made my knees burn. That was new. All of these sensations led to my right side feeling rubbery and unstable.

I’ve also had a lot of commitments recently and not enough down time, so that didn’t help.

Wednesday night I ended up skipping the gym because of pain and a meeting for the Lehigh Valley Book Festival that ran until 6 p.m., which meant I didn’t even get to my town until 6:30 p.m. and exercising in pain and hungry did not seem smart. You can read about my visit to Let’s Play Books on the Parisian Phoenix blog, here.

And when I got home, The Teenager had purchased cheese steaks at Joe’s Steaks in Phillipsburg. My standard order is a hot cheese steak, no onions, and an order of pizza rolls. She did not remember the pizza rolls.

I actually asked my boss to use two hours of my intermittent medical leave to come home and take a nap yesterday, because supporting my own weight and balancing was exhausting.

Best. Nap. Ever. I still feel achy today, but much better, probably because I had an appointment with my primary care physician. I thought it was for my annual physical, but apparently it was a six-month follow-up. Follow up for? Be darned if I remember. My mallet finger and the resulting leave from work because I was all out of whack?

I noticed while waiting for him that I was wearing two different shoes. They are the same shoe, but two different pairs in two different sizes. Interestingly, I put the smaller shoe on the smaller foot. Because it turns out my left foot is a size eight, but my right is 8.5.

He approved of my blood pressure numbers, didn’t say anything about the roller coaster of my weight, wondered if I had my anxiety under control, and asked about my service dog application. He thinks I have a cataract starting in my right eye, that I’m salt sensitive and that I need to take care of myself and (my words not his) calm the fuck down. Oh– and lay off the caffeinated beverages.

And as soon as I left the parking lot, I went to the Dunkin a block away and bought the new chocolate caramel cold brew. Even though I had chocolate in my coffee. But I figured this would be a candy bar, and I was right. My lunch consisted of cold brew, pistachios, apples and a KIND breakfast bar.

I returned to work, finished lunch with my friends and went out to the warehouse floor where I might have hit way over 100% thanks to the buzz from the coffee. I took the early release/voluntary time off and came home to packages!

We got two Freestyle packages from Stitch Fix, one from the Dizzy (in Dallas) and the Phizzy (in Phoenix) which The Teenager recorded me opening.

Our Little Dog Neighbor Sobaka is staying with us this week. So The Teenager and I took both dogs for a walk.

The Canine Therapeutic Evaluation (with Katydid) for a mobility service dog

Angel Ackerman Leave a comment

The Teenager and I left for a bizarre mini-round trip down to the atrium outside the Bass Pro Shop at the dying Harrisburg Mall. I say dying, because the folks at Susquehanna Service Dogs reported that they will soon have to find a new spot to do their evaluations as the mall will soon be razed, except for the Bass Pro Shop.

The mall provides an open but indoor public environment for service dog trainers, handlers and dogs themselves to work with people who may wish to pursue a service dog. These dogs are commitments, and the idea of navigating in the world with a large dog can be overwhelming.Therefore, it’s logical to let people considering a dog the opportunity to see how it feels, in public, to work with a dog.

I had to bring a support person with me today, and that was The Teenager. I worked with the trainer and the dog, Katydid, the same dog I worked with at my in-person interview in late November. The Teenager walked behind with the case manager, who asked questions about what I could use in a service animal and filmed my interactions with the dog.

I thought my right leg was being obstinate, it felt stiff and rickety. The Teenager reported that the right leg looked great, even faced the correct direction, whereas my left leg “looked like a worm on a string.”

Everyone had a great time, and I walked about 4,000 steps with my friend, Katydid, exploring the different between leash walking, strap walking and a hard harness. The hard harness makes it really easy to feel my place in the physical space and match the dog’s gait with more confidence than with the leash or the strap, but it may also be just as good to have a thicker, sturdier strap on the dog that could give the same feel as the harness and be easier for the dog to wear. And I bet over time, as the dog team works together, both the dog and the handler develop a rhythm.

The dog can be trained to counterbalance, to retrieve things, to find help, to empty the dryer, to bring your phone, to help you up, etc. Your dog can learn where your first aid kit is and to bring it when you fall and need to clean your wounds. It’s truly amazing to see these animals excitingly perform tasks, especially these ambassador dogs who will gladly work with anyone who has treats.

The Teenager and I made an adventure out of the day– stopping at Sheetz for drinks, where we discovered this Sheetz had an entire aisle of slushy machines. We loaded up on slushy and sodas, ranging from cherry Coke Zero to Mango Pepsi to Cheerwine.

The mall itself also fascinated The Teenager, with its taxidermy animals and its creepy trees in the Enchanted Forest children’s area. The creepy tree looked eerily similar to the one in The Teenager’s bedroom.

We also visited 2nd and Charles where she read The Unofficial SIMS cookbook and had to buy a new floormat for the porch, a Dungeon and Dragons mat that reads, “Roll for Initiative.” She is her father’s child.

And then on the way home we stopped at Cracker Barrel, because that’s just the tradition when this family goes on any sort of road trip. I think we had the sweetest waitress ever. And The Teenager picked out a gigantic jawbreaker and a roll of Bubble Tape bubble gum that came with a label maker emoji toy. And I picked out the butterscotch peanut butter cups which I shared with The Teen in the car.

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)