The ticking time bomb dove down the stairs

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

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.

Hospitals, dinner party, friends and games, and happy endings?

I haven’t had much time this week to eat, or rest, or even go to the gym, so I haven’t had time to read books, report on podcasts, or blog. And that’s a shame because I’ve seen some silver linings recently.

My friend in the hospital is doing well, and the staff on the cardiac floor seemed appropriately mortified at how her case was mishandled on Sunday. That doesn’t fix the long-term damage to her heart, but at least now she has the team to move her care forward in the future. And our coworkers have paraded into her room literally one after another, including her direct supervisor who turned up before she had emerged from the ICU. That makes me proud to be part of the team with whom I work.

She’s coming home from the hospital later today.

I visited my friend on Thursday evening, and again Friday after work. The Teenager had a dinner party and game night planned for the evening. My job was to stop and augment the alcohol offerings. I still need half-and-half after running out last week. Three trips to the store have yielded no such milk product. I have had tea. I have had terrible coffee at work. I have drunk my peppermint tea black. And I have resorted to, with great desperation, coffee with two percent milk. My father preferred his coffee with milk, and it’s something I just can’t adjust to.

I stopped at the new Weis market in Bethlehem near the hospital, purchased several single-serve-type bottles of various wines and a cold six pack of Sweet Baby Jesus chocolate peanut butter porter. I love a good porter or stout and DuClaw’s Sweet Baby Jesus is a solid one, though not as smooth as Samuel Smith’s Organic Chocolate Stout. That is my favorite.

I also grabbed a half gallon of Weis-branded ultra pasteurized half and half, dated March 23. Let me skip ahead to this morning and alert you that my half and half, after I freshly popped the seal, was spoiled. But, at the time of my arrival home, I felt like a successful warrior queen.

The Lovely Teenager and I received a package from Stitch Fix yesterday with our Freestyle goodies. You can see the unboxing here: (The Teen is wearing a Stitch Fix sweater from a recent fix.)

The Teenager invited a couple over for dinner and invited more friends to join us for Ransom Notes, a blend of Cards Against Humanity and a magnetic poetry kit. I didn’t take any photos of the evening, as I was distracted laughing, enjoying a beer, and socializing, something that has not happened nearly as much as it should. The Teenager expertly prepped and executed a menu of homemade mac and cheese, steak, and air-fried asparagus, with box brownies for dessert. Knowing one of our guests was vegetarian (and relieved he was not vegan), she prepared one very large standard mac and cheese, based on the recipe from the never-let-you-down Betty Crocker Cookbook. But being the carnivore and bacon whore she is, she made a second, smaller mac and cheese with bacon.

When your bird is distressed by all the commotion in the house, you show her what is happening. Photo by Joan Zachary.

Conversation flowed freely. The Teenager’s father arrived next, bearing the essentials for rum and Cokes. Our artist friend Maryann Riker followed with some Yellow Tail. Somehow Uno became the first game as choice as poor Maryann had never played this classic.

Brilliant photographer Joan Zachary arrived next with her partner, who immediately made friends with The Teenager’s extra long cat Oz. Joan joined us for a round of Cards Against Humanity, and did impressively well for her first time playing. I did not win a single black card. But I laughed my ass off.

And it was Uno we returned to to end the night, never quite reaching into the box for Ransom Notes. I guess that means we may need to host another game night.

Also, my cat Fog has been sleeping with The Teenager against his will. But they seem to be developing a relationship. Meanwhile, foster tripod Louise has permanently become my snuggle buddy, sleeping in my arms every night.

Incremental progress brings joy

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)

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.

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

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

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

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

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

Now onto the cerebral palsy update…

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

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

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

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

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

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

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

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

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

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

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

I hate “calling out sick.”

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

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

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

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

A lot of trial and error.

Anyone else having a weird day? Or is it just me?

Wednesday. 4 a.m. Alarm sounded. I contemplated staying in bed until 4:30 but I scrolled through my messages on my phone and fed the cats in the “fat kids” room by 4:15-ish.

I did take the time to use the restroom first.

I grabbed my clothes, but couldn’t bend enough to find socks. Got dressed. Went downstairs and started coffee. Took my medicine (muscle relaxer and antihistamine— I was incredibly stiff and I am allergic to cats and just about everything else).

I put on my gel lined toe protector.

About 4:45 a.m. First sips of Supercoffee dark roast. Updated my calendar. Went to the couch and started a blog entry. I was hurting and I didn’t want to work on creative projects.

5:15 a.m. Posted the blog. Went upstairs. Brushed my teeth and got a pair of clean socks I had stashed in the bathroom. Went downstairs. Grabbed my lunch from the fridge and headed to my shoe basket where I selected my cowboy boots.

5:40 a.m. I set up Spotify, checked my AirPods, and turned on the car and my heated seats. I felt like I was 80 today. Drove to work in fog so dense you could barely see the warehouse from the parking lot.

6 a.m. Morning routine. Change Spotify to work podcast list. Fill water bottle. Check work email. Pee. Have a snack. I had a cranberry almond Kind bar.

6:27 a.m. My Adventure Begins in Men’s Outbound QC.

Enough of the minute by minute bologna.

THINGS I LIKED WORKING MEN’S:

  • The personnel on the men’s side were very receptive to my accommodations
  • The ability to swap boxes easily even after the fix is complete

THINGS I DIDN’T LIKE:

  • The strict adherence to the 9×9 square. I had five boxes returned to me today when the dress shirt collar popped out too far of the wrap when I compressed it. Easily rectified once I knew of the problem, but they didn’t start coming back until after lunch.
  • The clothes are bigger than I am. I jest slightly.
  • The atmosphere is sullen and extra quiet due to the lack of automation. The lack of automation means some extra jobs — some of which seem ridiculously tedious.
  • Men’s fixes are boring. Shoes, maybe a hat or a belt. Jeans. Dress pants. T-shirt. Sweatshirt. Sweater. Over and over again. Boring colors. Boring styles. No way to make the fixes fun.
  • Sooooooooo many large boxes that could be medium

I attended the safety team meeting and finished the day at about 93%.

3:30 p.m. Despite two rounds of Baclofen, I was aching, stiff and crotchety when I arrived at the chiropractor. She agreed that I probably overdid my leg workout Saturday and the resulting hamstring spasms impacted my already interesting gait. She even helped the tension in my neck. I left with my pain and creaky body moving great.

4:15 p.m. Grabbed an iced coffee at Wawa, but since I don’t like Wawa’s iced coffee I had them add espresso to it.

4:30 p.m. Came home, switched shoes, fed the overweight cats again, turned on the lamp for the cockatoo that’s afraid of the dark, and left for my walk to the gym. Whereas for days my back, glutes and hamstrings had been causing issues, now my quads were burning. As if saying, “Why are we the center of attention again?”

4:50 p.m. Andrew’s circuit of “Boom” exercises– meaning one after the other, despite the fact that I told him I have no Boom left– and the espresso had me sweating and had my pulse rate up. It was intense, but I’ve noticed my workouts feel shorter now. I’m assuming that means my endurance is improving. I know my upper body strength has, and I have definition in my arms again. And I know my mobility has definitely stabilized and improved.

5:40 p.m. Left the gym and walked home. The Teenager had put away the Hungryroot delivery and we sat down to open her fix. Our sun porch is full of Chewy boxes. She hated her fix and that made me so sad. I fold and pack adorable fixes in her size everyday. She interacts with the app and her stylist. I have had conversations via company email with her stylist and know her stylist is not the problem. Why is the algorithm failing her? Why does it appear that her stylist cannot access the items she wants? Why has she received sweater after sweater?

She started Stitch Fix hoping for new styles she wouldn’t pick on her own.

Just look at her in this video– her outfit has more style than her box! And it’s a boring, basic Lafayette College sweatshirt and the same pair of Denizen by Levis distressed skinny jeans in indigo that she has ordered from Target time after time, year after year.

I thought as an employee I could help her guide the algorithm to update her style. Even buying things from Freestyle, she’s had no luck. We’ve ordered at least five pairs of Vans, yet despite asking for new Vans, she doesn’t get Vans.

So I spent an hour in her account, on Freestyle, building her my own fix. A blouse, a t-shirt and a pair of Vans to go with the tank and the sweater she kept.

7 p.m. I finally headed to the shower. My foster Louise and my cockatoo are very needy for my attention.

7:20 p.m. The teenager brings me a delicious grilled cheese.

7:30 p.m. I check my Stitch Fix account. I haven’t ordered a fix yet. Waiting to get my employee discount back. But the suggested looks seem like they know me. I hope when I receive a fix, that’s true.

I did what I could, but things don’t always change as quickly as you want them to

I have minimal patience for people who get stuck, accept it, and then complain about it without striving for change. But don’t worry– this isn’t a post about other people, it’s a post about me. Because the flip side of those who prefer “victim” status and inaction is when you do things and it’s not enough.

I have a funny conversation with my amazing chiropractor every time I see her. Whether I’m feeling good or bad, there is always so much chaos in my life that I have trouble labeling what helped or hurt the most. That’s probably one of my character flaws. If there is chaos, I dive right in. I say yes to help before fully considering the impact on my own life or those close to me.

Since December 12, my supervisors at my warehouse job have been trying to meet my new workplace accommodations for my cerebral palsy. This move for accommodations, on my part, was not spurred by a change in my physical condition, but my a change in how the company measures employee performance. Since I have been with the company for more than two years, experience has shown that I cannot meet the new standard. It took me about a year to consistently hit the previous measure.

My neurologist, who is also a physiatrist, and I adore her, literally wrote, “limit bending/crouching as much as possible to improve endurance.”

And so, during the course of the last several weeks, I have made most of my metrics with the support of the other staff in bringing me work that doesn’t require me pulling it out of shelves near the floor. We’ve slowly moved me to a work station near the back, so the support staff bringing the work doesn’t need to look for me or drag the work everywhere. We found a work station the right height and that directs the completed work to the left so I don’t have to stress my right hip.

This is after two weeks of a different table every day. Setting up a work station at the end of the day with supplies and my work to start the next day only to be moved somewhere else and given “standard” work in the morning. This is after the stares of my coworkers who are not on my team, as they linger around my work station wanting to figure out why I’m getting special treatment but unwilling to ask questions.

Until one of the nicer people, who still has the attitude of the others who don’t take kindly to us outsiders who originally came from second shift, offhandedly says, “because you have a real disability, right?”

I’ve been working hard in the gym, and set some new PRs on my weights, and since my holiday workouts my hamstrings have been super tight and spasming. The last time I did legs I probably overdid it. But everything was moving so well and I felt so strong so I hope this discomfort is my body trying to build new muscle and new connections with my nervous system, Because that’s my disability– my nervous system doesn’t communicate correctly with my lower body, making it impossible for my brain to tell my muscles to relax.

I don’t know if that’s why my mid-section, as in lower back and hips, has so much discomfort and burning pain, and why my legs ache. That workout was on Saturday morning and it’s Wednesday now. Maybe I’m being punished for binging Fleischman is in Trouble on Hulu for New Years or maybe I’m inflamed because I’ve been living on Christmas cookies and cake.

Who knows? But yesterday was hard and I couldn’t reach my feet or the floor and today I’m having more trouble bending. I see the chiropractor after work, so maybe she’ll have answers. I also forgot to wrap my toe yesterday. That meant that in addition to basic mobility issues it felt like someone had a knife in my toe all day.

But I hit my numbers, even did two extra, and set up my table with about 90 minutes of easy work and new rolls of supplies. And then I received work that I was being labor-shared today. And that has me upset and anxious. I’m folding clothes, just like I normally do, but today I’m supposed to do men’s clothes instead of women’s.

Last time I worked in men’s, it was awful. The clothes are bigger than I am and they don’t fit in the boxes, because the boxes are the same size of the women’s boxes but men have bigger bodies and much bigger feet. Plus, will they honor my accommodations? Will they put me on the left?

It took three weeks to get things comfortable for me in my own department. And my biggest fear is, when I return to my department, I’ll have to start all over with them.

Meanwhile, in the good news camp, The Teenager and I visited some friends last night so she could learn how to change her own headlight bulbs in her car and then she took me out for food. She might not believe me when I say it, but I really do love these small moments with her.

In other thoughts, when I get through my current financial straits (I have $3.92 in my checkbook and a $700 medical bill, the garbage bill is rumored to have gone up 200% and I’m still paying off my new ceiling and new computer), I really want an Apple Watch. I wonder if it could do a better job tracking my mobility and my activity. I’m really curious what all that clothes-folding counts as.

A Monday mammogram, a dose of anxiety, some more commentary on cerebral palsy (and fitness) and a really yummy dinner

I had a mammogram scheduled for this morning with my “regular” radiology tech. I went into work late, which meant I could sleep in and isn’t that the best way to start a Monday morning? At five a.m. I woke and starting cuddling my foster cat, Tripod Louise, debating whether or not I should get up. I normally rise for work at 4 a.m. so I have time to do Parisian Phoenix stuff or creative writing before clocking into my shift at 6:30 a.m.

But as I lay there at 5 a.m. today, I realized that I had set up the delay feature on my amazing coffee pot, and yes I still adore my Ninja K-cup, travel mug, and standard carafe brewer. I had coffee waiting in the kitchen. If I waited much longer it might not be fresh. If I fell back to sleep, it might not even be hot.

I fed the fat cats their weight management food and went downstairs where I promoted my latest idea, the photo scavenger hunt book. Check Parisian Phoenix’s submission page for more info.

I arrived at the hospital for my mammogram at 8:05 a.m. I went into the lobby and grabbed my registration number. Luckily it was two away from the last number I heard called. I started rooting through my purse for the doctor’s order and found it crumpled and stained with coffee.

A Dose of Anxiety

While I don’t normally suffer from panic or anxiety, when my stress levels increase I am prone to physical sensations of anxiety. And I had forgotten how stressful I find doing any outpatient procedure at the hospital. Grab a number, sit in the main lobby, go to the registration office, go across the hall to radiology, check in at radiology, get called to mammography, traverse the hall, get changed, go into the mammography suite, chat with the tech, get smooshed.

It’s a lot of steps in rapid succession. I could feel my hard pounding and had to keep inhaling deeply through my nose to keep my chest from closing up.

Was I nervous? No. Afraid? No. Shy? No.

It was pressure. I felt rushed and out of control.

Building Up Another Woman

Once in the mammography suite, I learned my favorite tech would be retiring in eight days and staying on per diem because if she works one day a month she will maintain her medical insurance.

I told her I was happy for her, but also disappointed, because she did my first mammogram and she always made me feel comfortable. I told her I’m sure she helped a lot of women and that I hoped she enjoyed every minute of her retirement.

She called me sweet.

And she remembered me by my tattoo. Which is on my breast.

Foster Kitten Jennifer Grey and Bean the Dog

When I left the hospital, I got the sweetest text that our foster kitten Jennifer Grey (who moved to the Teenager’s room last night for better socialization) is adjusting well.


Forgive me, but I’m finding myself too exhausted to continue,

so from this line down, I am writing about Monday on Tuesday


4:30 a.m. Tuesday, drinking exceedingly strong coffee as prepped on the delay setting by the Teenager.

Measuring Challenge at Work

My anxiety from my hospital visit followed me to work. I clocked it 9:07, which made it hard to do the math of where my numbers should be for the day, but I settled on a total of 85 fixes. And I hit 85 fixes. I was at a table on the right, not my regular table on the left, which meant a subtle shift of balance and more pressure on my right hip. The warehouse outbound supervisor herself brought me 22 refixes, or the work already in a box, which were pivotal in keeping my numbers where I wanted them.

I heard rumblings among my colleagues that no one is hitting “full performance,” so I’m not the only one. We were joking at lunch that in a few months they may reduce their workforce by 50% if they dismiss everyone not meeting the new numbers. I don’t think they’ll do that. The company has always been more than fair in the past. At lunch, Southern Candy gave me homemade fudge. I ate too much of the deliciousness and spent the next couple hours a little queasy.

The murmurings report that employees that are shared to other departments must still hit 90% of the new numbers and that their performance in those other departments will count toward their monthly miss-the-mark allowance.

The goal for my department is 16.25 per hour, but does not include time off for our ten-minute paid breaks. So I use my own numbers. Hour one should be 17, hour two also 17, then ten minute break, and 15 to finish the third hour to reach the official numbers. It’s two more hours until my lunch, and I try to maintain 17 per hour to “make up” for our final ten-minute break of the day.

So I missed two hours and 37 minutes of work yesterday. If I divide one hour (60 minutes) by 16.25, I get 3.7 minutes per box. (For argument’s sake, let me point out that doing the same using 17 unites is 3.5 minutes. So we are talking about the impact of seconds, but it adds up.) I missed 157 minutes of work, so using their numbers I should have lowered my goal by 42.5 fixes but I couldn’t do that math in my head. We are six days into the new system and I’ve already missed my two days a month. I thought I made it with 85 fixes, but my official target might have been 87.5. That means I did 97%. We’ll see what they say today.

I know I talk a lot about the numbers at work, but honestly it’s part of what I love about the job. 1. Numbers don’t lie. You can discuss why the numbers are what they are and develop strategies to meet them. I find calculating the numerical benchmarks to be soothing and an objective way to see how my day is going. And, while my employer would hate to hear this, it’s a good reminder that sometimes you can’t work harder only smarter and not everyone had the capacity to hit 100% of arbitrary numbers every day.

The calculations and my podcast keep my mind busy and allow me to brainstorm what I need to do for my publishing business. If I have to work full-time, I would rather work the blue-collar warehouse job than a white-collar office job that destroys my intellectual capacity and short-circuits my brain with stress. 2. I preserve my creative energy for myself. Listening to publishing-related podcasts, various sources of news, other creators and even some bizarre non-fiction stories keeps my mental focus on my goals and allows me to give my full effort to my employer while still working toward my personal goals.

3. I love the clothes. I have followed Stitch Fix since they launched, when The Teenager was a preschooler and I still had a subscription to vogue. I love seeing, touching and preparing the clothes for their clients. I love seeing the fixes, their color combinations, their textures and I love imagining the person who would wear them. I also like to make judgments of whether or not we could be friends based on their box. Because if you’re on fix #72 and I think all the clothes are hideous, that’s your style and we can’t blame the stylist or the algorithm. And since I write fiction in the fashion world, I love seeing the new trends and which items become perennial offerings.

I also took two muscle relaxers, after not taking them during the weekend. I’ve been curious if some of the strange feelings I have in my legs are from when the muscle relaxers wear off or from missing a couple chiropractor appointments due to other doctors’ visits. The jury is out– but the bottom line is with the muscle relaxers, working out and chiropractic care my body moves easier.

A much awaited visit to Back in Line Chiropractic

After work, I filled my water bottle and headed to my friends at Back in Line Chiropractic and Wellness Center. Not only is former physical therapist and chiropractor Nicole Jensen super smart and personable, but the staff contributes some extra care as well. When my schedule got out of control, office staff person B (as I don’t know if she would want me calling her out in a public forum) made sure I got not only one but two appointments so I could survive the holiday season with my mobility in tact.

I apologized to Nicole for letting three weeks go by without an appointment, and reassured her that I did not fall out of love with her. I summarized how life had gotten away from me, and by the time my trainer Andrew noticed that my legs were turning inward in an unusual fashion and I noticed I felt like the Tin Man in the Wizard of Oz, I luckily had called B and had my appointment on the books.

The noises my body made were brutal, but it’s a weird feeling when you stand up and your feet and legs feel loose, move freer and have a more easygoing gait. It’s disorienting. But it’s a good reminder than sometimes I need more help than I realize.

Nicole then shipped me off to Andrew at Apex Training.

The brutal workout at Apex

I love Andrew. I really do. I respect the way he has learned my quirks and can read my form. He has learned ways to troubleshoot what my podiatrist calls my “challenging gait” due to my cerebral palsy. But last night was a killer core and shoulders work out. It was awesome, and murderous. I am gaining so much upper body strength and am very impressed with my lower body function gains.

We missed some workouts recently because Andrew caught a cold and then took some family time for the holidays, but I told him it wasn’t fair that he was punishing me with heavy weights when we lifted and high reps in the more cardio-based exercises. After all, he had canceled not me.

Needless to say, when I got home I ate the lovely dinner The Teenager (lamb, broccoli and hand-cut, homemade parmesan fries) prepared and collapsed in bed. To wake at 3:56 a.m. before my 4 a.m. alarm.