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.
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.
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.
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.
It’s been what, a week?, since I wrote in this forum. I know, I know.
I have been trying to write. I have plans to brainstorm ideas for BookTok, projects to edit, and I decided to make short, very real, unedited videos for BookTube.
But, as I left myself 30 minutes to write this blog entry and “wasted” 15 minutes of that panicking over a medical form (all part of “things that have happened since last week”) I may have to leave you with a list:
The Intermittent Leave I submitted to my PCP was illegible once printed out, so I typed a new one over the weekend and sent it to the doctor’s office. I had not heard from them, so I double-checked the email this morning and thought the form I sent them was blank. I panicked, discovered my eyes had misled me, but had already messaged the office so now I probably have high blood pressure and look like an ass.
My favorite foster, Khloe the Sassy Princess and Cuddler, went to Chaar in Forks Township in search of a home. I went to visit her before the gym Wednesday and she made me biscuits.
My workouts have been brutal… I mean amazing, really I do. I’ve been doing what feels like some great weights and focusing so hard on form.
We had a heating oil delivery yesterday and I hadn’t anticipated that for another three weeks. $700. Ouch.
I had brussel sprouts three times this week. I do love my brussel sprouts.
I saw Nan Tuesday night and we practically made a comedy routine out of reading her junk mail.
My creative brain is swimming with ideas. Is that because I have no time?
I am soooooo close to fully performing at work. They messed up my accommodations Tuesday. My percentages are 98%, 103%, 103%. Accommodations make a difference.
But here’s my big take away:
Feel free to let me know your opinion.
Regardless of whether you have a disability or not, and that can even be a personal determination, getting older sucks… anyway… Taking care of yourself takes a lot of time. Monitoring your habits (food, sleep, exercise), health and treatments take so much time. Finding and visiting doctors. Physical therapy, training sessions or independent-led exercise. It’s ridiculous. Filling out that intermittent leave paperwork really drove home how much time I spend taking care of myself.
Maybe it is easier to neglect oneself. Maybe it would be so much less stressful to eat what I want, accept my “limitations” and live a more sedentary life. Maybe it is easier to stop fighting and be miserable. Maybe it takes an exhausting amount of energy to take care of oneself.
I’m a doer, a fighter. It’s who I am. So I will never stop trying. But now I think I see why some folks don’t.
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.
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.
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.
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.
Fosters kitten Jennifer Grey and tripod Louise woke me up at 2 a.m. to play “let’s compete for attention.” Now I love these two cats, and even in the middle of the night I don’t mind giving some half-asleep snuggles. But this went on for at least a half an hour as they each crept closer to me, until Louise was in a ball in my armpit and Jennifer was on my chest.
The Teenager needed to take her car to Kelly Nissan for major repairs. So she drove me to work and kept my car and Southern Candy agreed to bring me home, meet the menagerie and have dinner with us. I’d been looking forward to it. I even bought a chicken. A cute little organic chicken that was the size of a Cornish hen but a chicken nonetheless.
Work was work… I was actually doing okay and hitting my numbers. I took a Baclofen at 6 a.m. and that seemed to loosen everything. The other people stationed around me made me feel a little out-of-place, but that’s fine, especially since one of the people on my roster was delivering work and I got a refix cart. Which is the work that is easier for me to do. And most of my carts were medium, not 1X or 2X like usual. And then around 9 a.m. it started.
The internet started going down. And it looked pretty random. A station beside me. Two stations in front of me. But not me. Half a row over there. So they started having half the people fold and box and those with a working computer scan– except even then I only got about 5 boxes and still had to QC out of the cart.
At ten a.m., the powers that be at work called Voluntary Time Off. I said I would stay, as I felt good and Southern Candy usually tries not to take VTO, but her computer was down and in her department, things weren’t moving as smoothly as ours were so they were destined to run out of work. We left around 10:30, which would at least solve one problem: I would be home when Kelly Nissan called with the Teenager’s car and I would have more flexibility to get her to the dealership.
Southern Candy meets everyone. The elusive Louise makes an appearance. Foster Khloe, our Bean dog and the crazy Goffins cockatoo Nala immediately love her and the Teenager demonstrates probably a full 30 minutes of Bean dog’s tricks.
Kelly Nissan calls. The teenager’s Rogue will need another day in the Service Department. They offer her a loaner. She asks if she can drive a loaner at her age, figuring the policies are similar to rental cars. They assure her that she only has to be 21, and she’s 21….
Um, she tells them, I’m 18.
Oh, they say.
I guess they’re not used to 18-year-olds dropping off cars for $2,000 in repairs.
Kelly Nissan gave me the loaner. Now any dealership worth its salt will lend you a car better than yours to entice you to buy. And one of my dream cars is a Nissan Z. They aren’t going to lend you a Z, but I used to have a Nissan Altima with all the bells and whistles and the big 3.5 liter engine. That’s the car to which I compared all the cars I test drove when I bought my Jetta turbo. I hoped they would lend me a 2022 Rogue, which would be the same car but a decade newer than what the Teenager brought it for repairs.
They brought me a 2023 Altima. I got a little tingle when I heard Altima, but to my disappointment (but meeting my expectation), it was the base model. It handled fine, drive smoothly, felt like I was in a fighter jet cockpit instead of a car. But it had no real power. No sunroof. No heated seats. And it was grey.
They had given me a perfectly boring car.
The back-up camera has better resolution than a lot of televisions, and the warning beeps for parallel parking are annoying.
Once I return home, Southern Candy and I start the chicken. It’s 3 p.m. and the chicken should take 45 minutes to roast. Unless it’s still frozen in the middle. The chicken still has its neck. Southern Candy points this out and I try to cut it but all it does is make her laugh. She tries. She’d not getting anywhere either.\
So we ask Chef Google.
Together we de-neck the chicken. Makes me miss my vegetarian days.
Chicken in the oven, my neurologist-physiatrist calls. She’s filling out my intermittent leave paperwork and wanted my input. I mentioned I have the outside firm’s analysis of my job, and that I planned to give them to her for the upcoming accommodations paperwork. She says she’d like to have those, so I run upstairs and scan them.
I also show them to Southern Candy as we are on the same roster at work and we all technically could be assigned to do any jobs in outbound.
We check the chicken, it needs more time.
The partnership specialist at Susquehanna Service Dogs calls. They have a last minute cancellation for an in-person interview on Wednesday. Can I make it? I ask Southern Candy and the Teenager: Do I want the slot? Work prefers 48 hours notice for requested time off. And this would require a half day as the agency is 90 minutes away. And I’m not sure I have paid time left.
“How bad do you want it?” Southern Candy asks.
“Badly,” I said.
I accept the interview and email my supervisor.
We check the chicken. It needs a little more time. It’s 4 p.m.
The teenager mentions Chinese food. Southern Candy makes a yummy noise. But she tells my daughter we have chicken right here.
“It’s fine,” I said. “We can have the chicken tomorrow. Or pick on it cold.”
We order $50 in Chinese food. We eat like kings.
Then, Southern Candy and I say our goodbyes and I head to the gym. Where Andrew puts me through a core workout. I gave it everything, as I always try to do, but those side planks were murder on a belly full of Chinese food.
I went to bed exhausted– and had to type this blog entry in the morning, which I rarely do.
I woke up by my alarm at 4 a.m. yesterday, and for the first time in days, I thought I could actual get out of bed. My body has been heavy with fatigue and a steady post nasal drip. I suppose that might be from closing up the windows with a bird, a dog, and 11 cats in a house desperately in need of a vacuum.
But even so, I laid in bed until about 4:20 cuddling the FURR fosters in my bed: tripod Louise and kitten Jennifer Grey.
I drank two cups of coffee, one Supercoffee and one Dunkin Polar Peppermint.
I even wrote about 500 words on my next Fashion and Fiends novel that I have been struggling with for months.
I was stiff and my back was achy and yesterday I noticed some of that burning in my toe but I thought perhaps I could blame my shoes.
I saw the chiropractor the night prior, the amazing Nicole Jensen of Back in Line Chiropractic and Wellness Center. Nothing really seemed amiss and things were moving well.
Yesterday at the warehouse I performed 97%. So I thought… why not… let’s take one of my baclofen pills to see if looser muscles might mean less stiffness and aches. It was the first time I ever took one in the morning. I’ve taken them in the evening and slowly taken them earlier.
The pill helped. It felt like I could swing my legs again.
The medicine reminded me that I never heard back from the neurologist’s office about the appointment they needed to move and the paperwork I submitted. So I emailed. Now, the portal that allows patients to email medical staff has a strict character count. While in the newspaper business, I had a nickname: the word count goddess. This was in the pre-Twitter days when no one cared about character counts.
I composed a masterful email that addressed all my concerns succinctly, but maintained a polite air. I love this doctor and truly want to make her life as easy as possible.
I performed most of the day at 100%, by my employer’s numbers, which don’t account for our ten minute breaks. Their numbers suggest we do 16.25 units per hour, but don’t change during the hours we have break, which is twice a day. Their default calculation means the computer thinks one unit should take almost 3 minutes 40 seconds. So a ten minute break (and a small amount of time to move to and from a work station) reduces the potential productivity of that hour by about 3 units. So to compensate for that difference, if you wanted to keep every hour equal, the units per hour should be 17.
My first hour, I completed 18. My second hour I only completed 16. Then we had break, (and my neurologist had sent an encouraging email back by that point and her nurse had suggested a time for my next appointment) and I completed 5-6 in the twenty or so minutes before we had a department wide “power hour” in which I completed 19. So by the midpoint of my shift, and even when I clocked out for lunch, I was at exactly 100% with no accommodations for my disability. But by lunch, my ability to bend was decreasing.
I felt like the Tin Man in the Wizard of Oz when he begs Dorothy for oil.
I had a cheerful lunch with my friends, and went back to work, still maintaining the official numbers for 100%. Even by our last break at 1:30, I was still 100%. But I was stiff. And feeling sluggish. So for the first time ever, I took a second baclofen in a day. My doctor suggested up to 3 a day.
My toes were burning at this point, making me wonder if my pain from my two Morton’s neuromas had returned. OR if my toes were rubbing because I forgot my toe separator doo-dad. OR if my toes rubbing (because later I saw and felt the bony, protruding tender spot where it hurts) impacts my posture and triggers the neuroma(s).
If the issue continues, the neurologist wants me to call the podiatrist. I stopped by his office last week to drop off $11.32 in cash for my copay and his office was unexpectedly closed. In the old-fashioned manner, I slipped the envelope in the door.
I worked as hard as I could the remainder of the day, now trailing behind because of my ten-minute break and at 2:30 p.m., 30 minutes from quitting time, the support team brings me the “easy” work and tells me it’s a priority. I end the day one unit away from 100%. One unit.
And somewhere around 2 p.m., the neurologist had called and asked for $30 payment for the form fee for my FMLA paperwork. I apologized and said while I completely would pay the fee, I was at work and didn’t have my wallet on me and I would get back to them before the holiday. I called them at 3:10 p.m. from my car, and was added to a call back list, because the wait time was 40 minutes.
I hope including this much detail might show how difficult it is to pursue medical care and to pursue official accommodations in the workplace. Medical care itself is a labyrinth. Navigating your way to a provider who not only cares but has the knowledge to help, maintaining the patience and persistence to pay the fees and follow the paperwork, and taking responsibility for lifestyle changes that only you can make. I’m fortunate that I can do these things myself. What if my disability prevented that? Would I be treated the same way?
Just throwing that out there.
So now the happiest part of my day— hanging out with my blind friend, poet and essayist Nancy Scott.
She needed to go to the bank and she wanted to go to the Dollar Tree to check out the Christmas decorations. We had a great time roaming the aisles with me describing all the goodies. Nan fell in love with an elf.
I said to Nan, “my leg is not working.”
I meant it off-handedly but I checked my phone later. And sure enough— my walking asymmetry was way off. Normally I fall when the spike hits 10 percent. It was 50 percent.
It is 6:45 a.m. I went to bed around 11 p.m. last night, after a long conversation with an old friend whom I haven’t had a chance to truly connect with for years (and while we “caught up” last night as if no time had passed, it didn’t feel like the happy reconnection I thought it would), and the dog woke me up at 5 a.m.
At 6:15 a.m., after loading the dishwasher and starting laundry and trying to snuggle dog into a nap with me on the couch, I finally made coffee figuring sleep would not return.
Now, the dog is gently snoring on the other couch.
I definitely would prefer to be a cat versus a dog. The dog seems an anxious and needy creature, where the cat has an attitude and most of them act like they have their shit together.
I haven’t written much this week because my physical and emotional struggles have left me in a survival mode, and upcoming changes at work have me concerned for my long-term success at mastering my cerebral palsy and achieving work/life balance that includes leading Parisian Phoenix Publishing.
And I’m okay with these struggles, they mean I’m human and I’m alive. And I guess I want other people to know that in an age where we “social media” ourselves to death and we’re exposed to worldwide turmoil and glamour, that I’m here with you in the trenches, surviving.
So, Wednesday turned out to be a hard day. We received the official word that starting some time in December, our performance metrics will be judged daily instead of by their weekly average. And that we can miss the daily minimum two days a month. I had already turned up to work crying because of stress in my everyday life. (Which only my friend in the parking lot saw. Speaking of my friend in the parking lot… she needs a nickname as she will play a larger roll in this blog post and hopefully appear more. I think I shall call her Southern Candy, because her roots are in the Southern United States and she likes to pass out hard candy.)
Now, after my neurologist/physiatrist appointment on November 9, (see Is it Time for Botox), I filed for Intermittent Leave from work which would allow me job protection if my work missed increases due to complications from my disability or more doctor’s appointments. I now have a lot of doctor’s appointments. With recent changes at work, I seem to have triggered a couple neuromas in my right foot, which my podiatrist shot with cortisone (See The Stabby Toe and the Challenging Gait), and unbeknownst to me, as I had never had cortisone to me, this transformed my good leg into a second bad leg.
It absolutely removed all my pain, but — and this is probably why my podiatrist asked when I planned on returning to work and seemed satisfied that “tomorrow” would give me adequate time to recover– it made it impossible to control and rely on my right leg as I typically do. BUT I can also say it made me acutely aware of how I use my legs and unfairly make my right leg carry more than its share of the movement burden which is why my right hip has issues.
My left leg “scissors” causing my left knee to pretty much cross in front of my right leg when I walk (and yes, that is as awkward as it sounds) but now my right foot drags, causing my toes to curl under my foot. I have compensated for this change in walking pattern by buying cowboy boots. Not real ones, but ones we sell at work: the Kassy boot by DV by Dolce Vita. (Unboxing on YouTube here.) They allow me to hear my walk, feel my foot, and not step on my toes.
At our weekly meeting, our supervisors announce the metric change. I understand their logic. They plan workloads daily so they should measure results daily, simply put. And as this change rolls out, I’m confident the company will “do the right thing” in implementing it. I’ve been there two years, so they have investment in me as I have investment in them.
On my good days, I average 101% to 103%. But on my bad days, without some extra support that minimizes my physical struggle, I average 95%. So with the weekly average system, I’m still a “fully performing” employee. On a really bad day, which happens ironically about once or twice a month as their new system will allow, I give everything I can and sometimes only hit 85%.
Now, unlike some of my colleagues, I am also on a work roster that has changed shifts twice in the last calendar year. Yes, I have had three different work schedules in the last year: Monday to Friday, 3:30 p.m. to midnight; then Sunday to Wednesday, 6:30 a.m. to 5 p.m.; and Monday to Friday, 6:30 a.m. to 3 p.m. All very different.
Add a neurological condition to that and it’s hard to adapt. When they offered Voluntary Time Off on Wednesday, allowing us to leave three hours early, I took it. My emotional state would best be labeled as frazzled and my right hamstring had started bothering me, probably because it felt like my right leg was a useless tree trunk.
Here is the happy part. The kindness part. The part where the light shines from one person to another. Thursday morning, I get a text from Southern Candy at 5 a.m. “Stop by my car when you get to work.”
She gave me a cat figurine. A cat in frilly dress with pink bloomers, staring into a goldfish bowl that even included a goldfish.
“I know you had a hard day yesterday, and it made me think of you.”
I brought it home and placed it on one of my Parisian Phoenix bookshelves. A place I can see from my workspace at the table and/or when I’m having dinner.
To skip ahead, I’ve been thinking it’s time to record and place a request for permanent accommodations at work. By Friday morning, when one of my colleagues said he’d like to help me out with the easier work but too many people had doctor’s notes, I decided to email my supervisor. So he and I now will try to make that happen. Around the same time, my neurologist’s office called to see if they could move my December 6 appointment to December 9. The times they offered overlap with a preexisting doctor’s appointment I have.
And my intermittent leave needs to be certified by December 9. I returned their call, expressed my regret that those appointments would not work, and asked the person on the phone to please leave a message for the doctor and her nurse that my employer had sent paperwork and that I would have more paperwork and that I would gladly pay any associated fees.
I also wanted to mention I am trying to eliminate inflammatory foods from my diet, but that can wait until I see her. I am wondering if I should request to work with a dietician and get a new set of bloodwork to check not only the standards like iron and cholesterol but also vitamins like B12.
I’ve done really well not stress eating in the ten days since I’ve seen her, eating vegetarian baked beans at work yesterday while my colleagues ate piping hot pizza. My weight is slowly dropping.
I’ve eaten no junk food in the break room, choosing fruit leather and yogurt over Cool Ranch Doritos and fancy fruit snacks. I even reduced my caffeine intake. Yesterday for dinner I made thick egg sandwiches with eggplant, mozzarella and extra sharp cheddar on my favorite multigrain buns and a little chipotle mayo and avocado hot sauce. One for dinner and two to go in the freezer for work lunches this week.
Although I know my perceptions are faulty, I feel like my only success this week has been with Andrew at Apex Training. I got my gym sweatshirt, and the dog immediately jumped on me and coated it with mud so I don’t have a decent selfie… yet. But these guys at the gym have been a lifesaver. Andrew works so hard to meet my needs and come up with innovative exercises to challenge me and train my muscles to cooperate. I did a seated shoulder press this week with 30 lb dumbbells, which ignited my inner strength as my lower body becomes more useless.
I discussed my hamstring troubles and we did some balance exercise yesterday. Andrew thought I was going to stand on the balance trainer and hold a weight on one side to create instability in my stance. Then, he saw me try to stand on the ball. And we opted to practice that first.
Finally, I asked The Teenager to check on Foster Kittens Jean-Paul Sartre and Giorgio in their habitat at Petsmart. I will see them today but it brought my heart joy to see that they are doing fine.