Three-point fall

I am so sick of disability-related posts. My goal today is to start the March newsletter for Parisian Phoenix, which I will be distributing via Substack. Yesterday felt like a beautiful spring day and today, today there is two inches of snow on the ground.

I’m tired. And sore. And stiff. I called out from work today, although I’m fairly certain I have no paid time off for it. The Teenager and I have major bills do this week, and they scare me, but I have (and she has) placed every spare penny we have into paying them. And they will be paid.

So, before I back up, and explain exactly what happened since I closed my computer yesterday afternoon, let me say that my plan has been to take better care of myself. To stop pushing myself to keep up with the people who don’t have the same issues that I have. To ask for help. To be honest– not only with others, but with myself.

I have planned to organize regular long weekends every three-to-four months to give my body time to recuperate from the stresses of being on my feet folding clothes all day, and to give myself time to finish larger projects for Parisian Phoenix Publishing. That hasn’t happened, in part because I’ve spent so much time sorting myself out with medical appointments, and also because November through February incorporates a lot of paid holiday time.

I closed my computer yesterday afternoon and The Teenager asked if I wanted to take the dog for a walk.

Now, let’s think about the conditions yesterday:

  • It was a beautiful pre-Spring day and the sun made everything alive.
  • I woke by alarm at 6 a.m. to meet Southern Candy at the diner, where I ate salty food and drank three cups of coffee so my blood pressure was creeping up.
  • I went to the orthopedist, but was unable to get an appointment with the hand rehab people.
  • I was going to the chiropractor in about an hour, for the appointment last week that I had to reschedule because of my fall.
  • I have not gone to the gym in a week because of the fall.
  • My legs are covered in painful bruises.
  • I was a little hungry.
  • I had taken Baclofen* in the morning, but not since.

Interesting side note: CVS ordered my baclofen refill last week, as they did not have it in stock, and I haven’t heard from them since.

I felt good. Nothing hurt. I hadn’t noticed any balance issues. So, although I felt a little wiped out, a short walk sounded good.

The Teenager suited up the dog and put her cat in the cat-backpack and we headed up the street. We made it halfway up the block, cat screaming in fear, when the dog noticed other dogs and got nervous. And I had what The Teenager called “a three-point fall.” I immediately assumed it was a basketball reference but she explained. I stumbled, froze in the air for a second, and then fall. I believe the fall at work was a three-point fall as well. That frozen time she witnessed was me actually making a decision what to do next. That is the second where I have to decide whether to fight the fall and try to regain my balance or use that second to frame the fall and try to control the impact.

In this case, I opted to throw the fall to the left to protect my already injured right hand.

The sidewalk and the meat of my palm met as I aimed for the grass, now a barely visible scrape. The Teenager declared we would turn around. I told her I could turn around and she could keep going, but she promptly declared this was a less-than-ideal experience for everybody.

Now, at this point, I have a new short-term disability claim open with Matrix, waiting to hear when and how often the hand rehab people want to see me. With past experience, I’m fairly certain it will be once a week. But, before committing to returning to work, I would prefer to talk to them and was hoping they would call back and see me today, and then, if necessary, I could email or hand-carry paperwork to my PCP to decide whether we would pursue the new STD claim for my hand or amend my intermittent leave parameters that cover my cerebral palsy.

My claims examiner is confused, and since I have not received all the information I need to make a decision, my answers are rather wishy-washy.

Also, the weather is calling for snow. And I have this nightmare of me leaving my house in a snowstorm when I already have mobility and hand issues.

I head to my beloved chiropractor, ready for her insight and her physical therapy knowledge. Meanwhile, my neurologist/physiatrist who I had had a brief texting conversation earlier in the day, texted and asked if anything else could be happening in my body to cause these issues. I’m typing the list of answers: lack of chiropractic care, lack of gym, lack of Baclofen, bruises on my legs, high blood pressure. I am scheduled to see her in early April.

And meanwhile– we still don’t have an answer for why my quads were burning a couple weeks ago and why my “normal” issues in my hip joints seem to be moving into my sacrum.

So when Nicole the Chiropractor gets her hands on me she declares that my hips and my sacrum are all locked up and my lower body is stiff. She gets everything moving and pushes everything around. And I stand up feeling like a jelly fish, so loose it takes me a while to remember how to walk.

I haven’t heard from the hand rehab people. The neurologist has probably finished her day. My right side is starting to ache a bit. I drive The Teenager to the post office and we stand in line behind a Karen who criticizes every customer in front of her for not using the post office correctly, gets to the counter, and very promptly gives my favorite postal clerk a hard time when she discovers that Priority Mail box she has packed her materials in is a Priority Mail box and will cost $17.10 to mail. Even before she hears this news, she badgers the postal clerk about how much it will be, and he’s confused because it’s a medium flat rate box so it’s $17.10. And she then snapped that she had to text the person receiving the package because that person will have to pay her back. The postal clerk suggests maybe she buy a different box from the postal supplies station in the lobby and then he could mail it for $10. But she grumpily agrees to pay the flat box rate.

We return from the post office– having mailed cookies to a friend of The Teenager who has joined the service– and I head into the house and realize I left my glasses in the car as my prescription sunglasses are on my face. I head back out to the garage and walk down the narrow cement steps to the car bay. Half way down, my ankle gives out, twists underneath me, and I somehow manage to lower myself to the ground without falling down the stairs.

I pick myself up. Everything feels solid. I text the neurologist. I return to the house. The Teenager expresses concern as I took too long to walk to the garage and back. I explain what happened.

She orders me out of the kitchen and she says she is going to make dinner and I am going to sit. I use the time to email my supervisors and call out for today, because I think it would be best if my body had some rest. I email my claim examiner and tell her to cancel my hand-related claim, because this whole incident is definitely something we have to deal with as a cerebral palsy issue. And I tell her if I need to contact my primary care doctor and have my intermittent leave parameters amended I will.

I ate a pile of peppermint kisses, a moon pie, and a rice krispie treat after dinner and washed it down with Diet Coke. Despite that, my weight is down more than two pounds this morning and my blood pressure is fine. My lower back and right side of my lower body hurts, but I’m hoping my morning dose of Baclofen will reduce the stress on my joints. My arm still hurts from my Tdap booster.

I don’t know what will happen next.

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

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 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

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

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 highs and lows of 24 hours

I write. It’s what I do. I got a random text last night from a colleague of a friend who I think would mesh with me on a personal level. We’re scheduled to have lunch on Monday. She texted last night– she’s a fellow journalist– hoping I could review her application for a special project. Let’s just call it a grant.

I needed that last night. I received a text from her this morning. She’s never requested my professional skills before, and I didn’t really think about that before I agreed to help her. I just heard, “I need someone to look at my thoughts.” And the former managing editor/grant writer in me just kicked in. She was on a tight deadline, and I was close to bedtime. But I did what I could.

Her text this morning said, “Holy shit. You’re good.”

But let me back up… and let me tell you why I’m struggling to digest the 24-hours of my life that started with 3:30 p.m. on Valentine’s Day and ended after work yesterday.


Happy Valentine’s Day, The Teen!

So, The Teenager considers the hamburger chain Fuddruckers one of her favorite restaurants in the world. Which is funny when you consider her favorite, favorite restaurant in the world is Kachapuri in Moscow. And mine, too.

We had a Fuddruckers a few blocks from her grandparents house for a couple years when she was in preschool. Her connection to this place goes back that far.

They closed it when she was about four. The two closest Fuddruckers now are in Hershey (1.5 hours away) and in New Jersey (1 hour away). We drove by the exit for the Hershey Fuddruckers during our service dog appointment Monday. But I wasn’t hungry, and at this point I can confirm that poor diet spikes my blood pressure.

Somehow, we negotiated a trip to Fuddruckers in New Jersey for Valentine’s Day. But a wrinkle came to the plan when her car’s service appointment took longer than anticipated, and more money than anticipated. But we decided to go anyway. Because at this point, the poor kid is miserable. She got nailed with owing federal income tax, her car insurance has doubled and her car is an enormous money pit that might be a ticking time bomb. Really, the transmission might be next. But we’re working on manifesting luck and joy. Hamburgers, it is!

I locked up the house and I discover an envelope in the incoming mail. The design of the envelope itself ruins the surprise of what’s inside. These kids today, they have all the tension stripped from their lives.

Now, our trip to Fuddruckers was officially a celebration.

And this Fuddruckers, according to the Teenager, is way better than the Hershey Fuddruckers. We’re apparently connoisseurs now.

Note to self: my bacon bacon jamburger was amazing.

Conversations in the car got a little heavy as conversations in the car normally do, and I went to bed missing my family. But that’s another feeling for another day.

Wednesday, February 15

I performed well at work on Tuesday. Perhaps too well, at 132 fixes. My official observation was nearly 107%. I felt the warning creaks in my body Tuesday night that maybe all the car rides and the full day at work might have stressed my lower extremities.

This story takes a turn, and could have ended in tragedy, but it didn’t. But it’s a lot of emotion and a friend nearly lost their life. So if that doesn’t appeal to you, stop reading.

There’s a crew of us at work. We all used to work second shift together. Then we moved to the 10-hour Sunday cohort, Then we moved to day shift. When they rearranged to break schedule to make larger lunches, we gravitated together. And I’d like to believe we have a bond.

One of us went to the hospital Superbowl Sunday with chest pains. This person has a history of past heart attack. And the hospital, from what we understand, tested for hernia, gall bladder and gave an EKG but never did cardiac enzymes. They sent our friend home. This person has been in intense chest pain on and off since Sunday. This person forces themselves to come to work on Wednesday, because we all need to work. We’re not living lives of leisure and passive income.

We’re sitting at our normal morning gathering spot in the breakroom, and we had seen the car of the person in question, but this person had not arrived in the breakroom. We figured this person needed to talk to supervisors. Makes sense.

I receive a text. “Are you at work? If so come to my car.”

I do.

My friend was sitting in the car, tears streaming, clutching at the chest, stating there was pain in the arm. My friend was about to throw up from the pain. Apparently, my friend planned to drive to another hospital after a supervisor offered to call an ambulance. We went into the building, where my friend went into the bathroom. Another colleague had to escort her out of the restroom.

This is when another friend declared that an ambulance had to come and told our supervisors to call. And our security head monitored vital signs.

Our most confident and bossy colleague went to the hospital and we’re told she kept the staff on their toes.

Our friend had a heart attack in front of us.

Our friend received the care needed, but THREE DAYS after first going to the ER.

THREE DAYS.

I’m angry at the system. And I feel guilty for not pushing harder for better care sooner.

But right now, we’re all solemn and grateful that we didn’t lose a friend.

ADVOCATE for yourself and your loved ones.

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

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)

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

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

The tale of the “that’s weird” blood pressure & an EKG

So, my sparse writing lately has been in part from the overwhelm of discovering my blood pressure has been 150/90-something for a week. It’s to the point now when I’m starting to think I might always feel like I’m about to explode and the walls are closing in, with the occasional headache, ringing ears, tingling hands, and burning eyes. Not to mention I had a rather large shot of vodka that did nothing… it made me feel normal.

But the good news is that life at Stitch Fix is settling into a new routine and we had an all-hands meeting today to build moral in the face of all the recent changes. And The Teenager received her final fix, that– despite all her pleas to her stylist not to send any more sweaters– has two sweater, one very, very similar to the one she is wearing. The algorithm has failed her.

We’ve had light inventory recently and I wonder if that might have something to do with it. We started receiving new inventory this week.

Today I only folded at 90% of metrics so I’m sure I’ll hear about that tomorrow. But my fixes were damn near perfect.

I left work at 11 to visit the doctor. I had an appointment with one of the residents that my primary care physician requested from me in direct response to my blood pressure reading on Tuesday. I arrived at the office and was met by the same nurse that saw me Tuesday and she brought a student to handle my initial intake stuff.

The first order of the day was to take my blood pressure, which seems pretty basic at the doctor’s office, but apparently they tried to use the large cuff on me, and while my weight is no longer small, my blood pressure cuff size is. And the experienced nurse told the student that a slightly too loose cuff could make the reading a tad off, and since this was a blood pressure issue exact accuracy was important.

150/92.

Barely a change from last time. No change after my Andrew put me through a workout that had my heart beating. No change since I doubled my water intake and cut out caffeine. No change since I’ve been avoiding sugar, salt, snacks. But it’s only been 48 hours. I just wanted to see some sign that it might go down.

When the resident arrived (a very kind and handsome fellow who reminded me of a friend’s husband, but that person already has an identical twin so how can he have a local doppelganger, too? Do twins get doppelgangers or are twins their own doppelgangers?), I explained my symptoms and that it came upon me last Tuesday. With the symptoms changing over the week, and going back and forth. So we starting talking about if anything had changed and while my life is chaotic, it’s the same old chaos. No new supplements. No new medicines. No new foods.

“That’s weird,” the resident said.

He talked to my primary care physician and they did an in office EKG. My heart rhythm is fine. On Saturday I will get all my blood work. I am to keep a blood pressure log until my next visit. I said I would maintain my healthier habits.

When I left, I treated myself to an unsweetened decaf iced coffee from Dunkin.

And came home and made a lunch of warm kale and chicken burger.

And hung out with Nan. Her life right now is as chaotic as mine.

Update on the blood pressure issue

It’s hard when facing a health scare not to feel like a victim. Not to feel like another “oh, shit, why me?” moment has hurtled itself at oneself.

I try to take every new challenge and scare as an opportunity to make positive changes or do things in a new way.

So if my blood pressure is high, maybe this is the kick in the butt I need to cut back on the caffeine and encourage the discipline to stop my emotional binge eating.

I’ve upped my water intake, cut out my processed foods, and asked my trainer for his support sticking to a healthier diet and hopefully shed some of this excess weight. I have blood work scheduled on Saturday, and the doctor’s office called and asked me to visit one of the resident’s tomorrow morning.

I am doing my best to stay calm and wait to see that tomorrow brings.

And the medical fun continues… not the outcome I expected

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.