It’s definitely Monday. You know those Mondays when you can’t get motivated and the day drags on forever? Yup, one of those.
I mentioned to my neurologist/physiatrist that sometimes when my body gives me trouble I can’t feel when I need to pee. She tested my urine to see if I had some kind of infection (and I didn’t think I did as this started more than a year ago). When my urine came back clean, she ordered a bladder and kidney ultrasound.
The test begins with an ultrasound of a full bladder, so I had to drink 20 ounces of water an hour before the test and not use the bathroom.
I selected a facility near work, so I could head over directly after my shift. The lobby was loud, and it seemed like every female patient had a two-syllable name that started with A. And then, an old lady stumbles awkwardly through the waiting room, bent strangely, a heavy purse dangling from her arm and, even more maladroitly balanced below her stomach, a toy poodle.
Yes, a poodle.
She practically falls into the chair at registration, and soon after completely her paperwork, releases the dog on a retractable leash and it’s running all over the lobby. It’s certainly not working, and it’s certainly not wearing the appropriate gear to be a service dog.
The ultrasound tech did a magnificent job and we talked at length about Stitch Fix, my publishing company, higher education and then she asked me about my educational background. Maybe she’ll buy some books.
This week presented many challenges. Monday I was hurting, probably from too much computer work during my 10-hour weekend editing sessions each day. I survived Monday, but barely, only to learn that Tuesday I would be moved to a different station in the Stitch Fix warehouse.
Change is never easy– but in this particular instance, as a person with a documented disability and doctor-derived medical accommodations, I struggle in my normal environment to perform at the same level as an ordinary employee. And that’s my job, to do the work, with a reasonable amount of help.
The main consideration used by management to determine assignments on the warehouse floor is table height. Is the work surface the appropriate height to match the ergonomic needs of the employee? In my case, my performance also relies on which side of the line I am on and who is “on support” that day. I work on “the B side” which does not mean I am not a radio song. It means the conveyance system that moves the fixes to the next stage of the process is on my left side.
I rely on my left side for balance. Therefore, to minimize potential issues with my hip and ensure my balance and stability, I need to work on the side where I turn to the left to put my boxes on the line.
My original table assignment for Tuesday was on the right, or the A side.
Requesting a B-assignment got me moved from line two to line four, which meant I would no longer have my regular support team. (That’s the role of the people who deliver work and supplies to those of us who fold the clothes.) I have been told that it’s my job to remind these folks of my medical needs. And they don’t always like that. So it makes me uncomfortable. Because in my view, it’s not my job to tell someone else how to do their job.
And to make matters more fun, it’s up to the individual to decide how to provide my accommodations. The deviations are small, but the impacts are major. The cart typically arrives with eight fixes on four shelves, with five to eight boxes lying horizontally on top of the cart. Most people move the boxes (I often take them) and pile the work from the bottom of the cart on the top. Some people even put the fixes from the two bottom shelves and place them in boxes on top.
I don’t even ask that pack slips be placed with them. I have myself trained to flip them to match the new order. Which confuses everyone but me.
This particular day, my support person, who I believe is a delight, so this is no reflection of who she is as a person, decided she would place the clothes around the boxes without moving the boxes at all. She tucked them all over the boxes. Which meant if I moved the cart to my station or reached for the boxes, the clothes fell on the floor. How does this help me? Keep in mind– I go through three carts an hour.
I eventually complained to a supervisor and said something like this:
“I know it’s too late now, as we’re closing, but there really should be a system in place where Stitch Fix defines what the accommodation is for the doctor’s orders, because it really shouldn’t rely on individuals who don’t understand the disability. And maybe it’s a violation of privacy, but those of use who need the extra attention should be arranged together so support automatically knows if we’re in that section, we have an accommodation and it would also cut down on people requesting accommodations when they haven’t done the paperwork.”
The supervisor said that was a great idea and lamented that I hadn’t mentioned it earlier. I didn’t mention it because it’s basic logic.
Somehow, I survive, and I make numbers. My body is so twisted I can feel that if I move wrong I’m going to pull a muscle in my lower back. But it’s okay because I have the chiropractor on Wednesday.
And then I get the table from hell on Wednesday. It’s the right height, right side, good support people. But it’s a front-of-the-line table, so I have to keep pushing the boxes toward the end. The fan keeps blowing my pack slips, which means I need to tuck them under my craft paper roll instead of on my laptop keyboard. But I keep forgetting, which means every cart I repeat chasing a paper, and tucking the others under my craft paper roll. My scanner keeps disconnecting from my computer. And if I need to go get a large box, which is common now as we are transitioning into winter clothes, I have to walk to the back of the line to get it.
These things add ten to thirty seconds to every fix. That’s 40 minutes over the course of the day. And I finished at 91% which is bad enough to get me a warning. And so I’m stressing, which tenses my muscles, and since my neurological condition already creates issues with my muscles not relaxing just makes everything worse.
And midday, the leaders got out an inflatable beach ball so every one could bounce it around to each other. That upset me more because I don’t have time to have fun. How dare they think I might be able to survive this and have fun?
Nicole Jensen of Back in Line Chiropractic aligned my lower body and stretched out my legs and I left her able to stand up straight and move my legs without stabbing pain.
This is where the difficult mental part of disability takes over. It’s so much easier to give in, to rest, to eat ice cream and watch TV and be done. But I knew my body needed to stretch and move in order to correct whatever issues had been caused by my misalignment and muscle tightness.
My brain and my muscles don’t have good conversations– so it seems like I can to manually perform a motion for a while to teach my body how to do it, even if that is reminding it how feet go or how a gait is supposed to work. That’s why I go to the gym. Not just so someone forces me to exercise, but also so someone can make sure I am using body parts correctly.
But I have to tell you, I dreaded going to the gym. I had been in pain all day. I wanted to take a hot shower and go to bed.
Andrew texted. He had a situation at work. Maybe the universe thought I needed a break. When Nicole works on me after such bad body pain, I’m often achy the next day.
Then Thursday went fine. Great even. But the pain crept back Friday, not nearly as bad but it took me most of my day to get my metrics at work to solid ground. And Friday night I went to the gym, and despite how I was feeling, I had fun and did well with some heavy weights.
I made some salmon and trendy smashed potatoes with vegan tzaziki sauce for dinner and the Teenager loved it. I fleshed out the writer’s proof for the erotica book. And went to bed feeling like I had been successful.
This morning I got up, discovered I had low blood pressure after I took my beta blocker (oops) and had a light breakfast– coffee with PB2 and cream, PowderVitamin Electrolyte Powder Plus in strawberry cucumber and these breakfast biscuits from Olyra. I thought they’d resemble a Reese’s peanut butter cup or a Tastykake Kandykake.
They were hard, dry and the peanut butter cream was minuscule and didn’t even moisten the cookie. Terrible. And I love their yogurt breakfast biscuits so how could this taste like someone managed to shape chocolate-flavored protein powder into a cookie?
Anyway, the moral of the story is: sometimes what you can achieve one day is much less than what you achieved on a different day.
There is a new accommodation popular on the internet– image descriptions. Nancy and I were talking about it last night, because she has her cell phone now and is receiving email and interacting with the web it new ways.
She asked a question that has bothered me about these descriptions since I first encountered them– who benefits from them? Depending how the description is written, it doesn’t help and if the text near the image is well written (in an email, newsletter or blog) a description should be in the text. (But I’m also trained by my experiences with Nancy.)
If I described a selfie of me as a woman about 5′ 4″, brown eyes, glasses and brown hair in a floral dress many of those details mean nothing to a blind person. Details that matter would be I have wild curly hair that flows past my shoulders, I have uneven fingernails but smooth skin, and a long sundress with ruffles and a kick pleat on both sides. And when I walk, my gait has a scuffle to it due to my cerebral palsy.
See the difference? Pun intended.
Most of the images I see described feel like they were written for someone who had seen at one point. A congenitally blind person does not attach meaning to colors or conjure the same connection to concepts like “sky” that a sighted person does. Just like when I interact with darkness, while I use techniques Nan taught me as to not harm myself, my concept of that condition and hers are different. When the electricity goes out at night, nothing changes in Nan’s world except the television won’t work.
I feel like too many attempts to acknowledge and address the needs of the disabledfocus on the experience and needs of the able-bodied who become disabled which are often different from the needs of the congenitally disabled, even if the impairment is the same. In my experience, the able-bodied community wants to fix disability and would rather see the disabled person function in the same manner as the “normal way” rather than adjust their expectations and methodology to accept a method easier on the person with the disability.
Again, in my experience, people with disability learn the “right way” and must struggle with the “right way” and even accommodations can focus on allowing the person to perform the task the “right way,” until the disabled person, a clever occupational therapist, or empathetic mentor finally discover an alternative method that might not look like the right way at all.
And sometimes that makes the able-bodied community uncomfortable. Consider the brouhaha one can often encounter when dealing with handicapped parking spaces and who deserves them and the “rules” regarding having a service dog in public.
And on top of all this, we have the able-bodied community who experiences temporary disability or permanent disability. When these people can’t go of their “right way,” that is when we start to see efforts to make the disabled experience feel more like the able-bodied one. It’s actually person who went blind at 30 or the person slowly experiencing vision loss who wants to hear about the color of my hair.
And those seem to be the type of accommodations that “catch on” and “stick.” Because it’s an activity easier for the person extending the gesture. The sighted person writing the description looks at themselves as if looking in the mirror instead of imagining how someone might find him in a dark cave. And the answer is not “with a flashlight.”
In more personal news, thanks to the hard work of my chiropractor, Nicole Jensen, and my trainer at Apex, Andrew, my body might be overcoming its last episode. It’s annoying to think I must maintain three workouts a week to keep my body from seizing up and forgetting how muscles work.
Yesterday, I could feel my leg pulling and turning wooden as I like to say. I can only describe it as I can feel it pull away from my body. It no longer listens to my nervous system and it feels like I have to pick it up and drag it with me as if it were a prosthetic.
So, after Nicole got everything aligned Wednesday, and an upper body/core session with Andrew after chiropractic care, and some reflection Thursday from my new cardiologist, I walked to the gym Friday. We did legs and some barbell squats. And some planks. I haven’t done planks in ages. Held steady for a minute.
Andrew asked me functional questions about what my legs were doing and I had to remind him, “I can only tell you what it feels like, I really on your observation to tell me what’s actually happening.”
Because with cerebral palsy, my muscles rely on repetition and routine to remember how to function. As I understand it, my brain’s instructions just don’t make it there. So my lower limbs just do what they want, until I consciously connect them all and just like learning to fold clothes into perfect little 9×9 squares as I do at Stitch Fix– it only works when the action is embedded into muscle memory and the thousand steps it takes to execute just happen without thought. THAT is what I am hoping to achieve. But as I learn what to correct and how, someone (and that’s Andrew) needs to observe me to make sure I don’t miss anything.
Some brains need it. Some overscheduled people need it. Some lazy people need it. And sometimes those prone to neglect themselves need it.
My routines are off and it’s adding to my exhaustion.
I haven’t been as diligent about turning my screens off at least an hour before bed (it doesn’t help that Katherine Ramsland’s new novel is an electronic ARC and I want to read it). And I have not risen from bed with any enthusiasm. I’ve been reading electronic versions of the newspaper instead of starting my day.
When I finally start my day, I have been met by mice the last two days.
Yesterday one laid at rest in the middle of my dining room floor. And this morning a baby, still barely alive, sat at the feet of the Teenager’s cat, Mistofelees, who guarded it from the others like a vicious beast.
Now I am left to wonder if something else is going on. Did someone disturb these critters up the block? Has the change in weather impacted their routines for finding food, water and shelter? Have my neighbors gotten careless storing their dog food again? Does the Teenager need to check her cupboard? Has the new “cat tube” and catio left a space for the mice to enter the house?
Speaking of routine, I organized my clean clothes last week into outfits, but never carried the basket upstairs. I’ve been getting dressed in the living room. I never packed lunch for today, but I have some chicken in the fridge that may be safe to eat. I think it would be delicious to take a bagel and toast it at work, add the pesto chicken and one of the mozzarella cheese sticks and melt it in the microwave. But that sounds like a lot of work for my 30 minute lunch.
So I will probably just have the chicken.
I have three more paychecks left. The mortgage looms in the back of my mind, because as soon as the car insurance bill comes, my savings will be gone. The Teenager starts college in two-ish weeks, so her income will decline.
There is no easy way to face this uncertain future. To self-soothe, I walk the routine and swallow my panic.
Folks, I don’t feel like writing this. I’ve had so many demands on my time that I don’t even think about what I can write or when I might have the time to do it. I’ve had one job interview, told one I wasn’t interested and have a third coming up Monday. Today was the first day at least this week that I didn’t feel like my leg would fail to support me.
I had some incidents last week where my overscheduled life led to idiocy (like leaving the rats in their play area, leaving the house and driving 20 minutes away before I remembered them) and some joyful times too, but honestly I feel like I write my calendar out on Sunday and don’t even have a chance to look at it until Thursday.
I gave my doctor the new paperwork for the absence management company last Thursday and I haven’t seen any evidence that they received it. I continue to struggle through my issues at work (though today was the day where I didn’t feel like my body was falling apart all day but more on that in a minute) meanwhile… I have a hard time keeping my feelings in check when I see others milking whatever they can to get special treatment at work.
One woman had a migraine all week but did her job.
Today we had a massive barbecue at work, and an appreciation luncheon yesterday, as the local managers rush to spend their budgets before we lose our jobs. Despite this feasting, I have lost 2 pounds according to the doctor’s office (and I hope that it might be more since I have increased my sodium so much that their should be some water retention with that).
In the photos, you can see some of us going through the food line, my friends concentrating on their bingo cards, and a friend’s demolished plate.
After all of this, I went to a new cardiologist. A female. I swear I know her from my nonprofit work and I have to wonder if she served on a board somewhere I worked. Yesterday, I went to the chiropractor, my beloved Nicole Jensen of Back in Line, and then went to work out with Andrew at Apex Training.
So, I told everyone my theory. And to date, no one, including the new cardiologist, has disagreed.
Fact: In January, my blood pressure went up. I don’t know why. I was taking Lexapro at the time to try and keep my blood pressure lower, because it was due to stress (and I had lost my father a year early and don’t hear from my other family members, even when I try to reach out so the idea of a low dose SSRI didn’t seem like a bad idea). I had been on that medication about a year. I also take baclofen to help my legs move better, which I started more consistently in November, but had been taking since May. My doctor advised me to watch my diet and my sodium.
Event 1: March 1 I dove down the eight concrete stairs at work, smashed my finger (in a bad sprain that has left it still quite bent) and almost passed out after the event. My blood pressure was fine.
Anecdotal evidence: I had eaten a lot of fast food that weekend.
Sidenote: Saw the hand rehab specialist/occupational therapist for the first time during the day March 13, went to work late, and had set up balance physical therapy to begin March 20 at the request of my doctor.
Event 2: At the end of the day March 13, about 7:30 p.m., I fell down the stairs going up to my room after a big meal. I had had Little Ceasars and Taco Bell that weekend. The bruising on my back knocked the wind out of me and my face was gushing blood where I had slammed it into the air conditioner that my daughter had rested on the floor. Went to the ER for stitches, found out I was in afib.
It took some time after that to get the results of the heart monitor back (I’m fine), and it took some dickering so the beta blocker didn’t give me low blood pressure and postural hypotension. But I kept having episodes of each.
Later, in June, I was told to stop taking the SSRI because I had a risk of fatal arrhythmia.
I asked my doctor to see the nutritionist and she said I was not eating enough salt because of the cardiac diet recommended and washing what sodium I did eat out of my system. Within three days, I felt 90% of myself.
Now, I mention all of this because one of my original theories about why this had happened addressed salt. I had thought the universe was punishing me for eating all that bad food, and my first cardiologist whom I saw in the hospital, pushed the idea away. And that’s why I went to a new doctor.
I also believe the afib could have been caused by the bodily trauma of my fall down the stairs. And that I feel so awful when my blood pressure is 110/60 because of my cerebral palsy– that my body just needs more than that to make this body move.
And my new doctor believes that I’m on the right track. That:
Lack of salt might have initiated the symptoms which led to the falls in the first place.
I might never have an incident of afib again.
And — when I’m ready– we can potentially change or eliminate the beta blocker.
Honestly, with losing my job this fall, I’m not sure now is the time to take my heart off anything that helps keep me calm. She also mentioned that I might do better on an extended release formula.
That’s all I got. And this took up the last of my free time. Sigh.
If you read my post on Monday, when I was in tears and in pain all at the same time, you might recall that the absence management company used by my employer denied my most recent absence on the grounds that I am only “allowed” to have one episode per month, according to how they read the form that my doctor filled out multiple times.
Now, I know some doctors are more idiot than useful, but I assure you mine is not. For him (or my neurologist/physiatrist for that matter), I would gladly hand over one of my O- organs should he ever need a kidney or a live liver donor or a lung (I have two). So it irritates me beyond belief that the absence management company sends out a four page form but always bases the determination on one question.
It’s just hard. I work with a lot of people, and few people know how hard it is to have a body that works great one day and completely fails the next. And most of the people who work in the warehouse and have accommodations (because most people who have a permanent and chronic condition don’t want to work in the warehouse) have them for a temporary amount of time due to surgery, injury or pregnancy.
And any time a disabled person asks for an accommodation (like adjustments to a work station or permission to have a tasking canine at their side), there will be other people who take advantage if the system. Everyone’s body is very different, so two people could have the very same condition and still need unique accommodations. And I think some people lose sight of the fact that a reasonable accommodation for a person who needs it makes the situation possible and that it is not necessarily designed to make the situation easier.
When I tell you my leg feels like it’s facing the wrong direction and just drags along like a dead tree stump, believe me. And when I’m standing there afraid my leg may not continue to hold me up, believe me. And when I have to fight with absence management companies and agree to policies that allow me to take unpaid leave in accordance with the conditions approved by the absence management company, because my employer will penalize me if I continue working and meet less than 100% of their expectation… all of that causes me stress.
And I have a neurological condition that prevents my brain from telling my lower body to relax. Do you know what happens then? My discomfort gets worse. It is a big decision for me to tap out of work and use my intermittent leave. I’m losing my job in a little more than six weeks. I have no paid time off because I use it all for doctors appointments.
And to receive an email before I even get home that implies I’ve abused my leave is infuriating. My boss told me to stop stressing so much, that we’ll figure it out. His boss encouraged me to redo the forms again because she doesn’t want my employer to have any reason to question my productivity or attendance. She also doesn’t want me to risk losing my meager severance.
The claims examiner never sent me a new form. I imagine he or she posted it to my file in the app. Because while all warnings and denials come to my personal email, good news and important documents seem to appear in the app with no acknowledgement.
But being me, I kept a blank from last time. I sent that to my primary care physician’s office with a note that I could fill it out over the weekend and drop it off on Monday. Because I don’t want them to have extra work. My doctor’s assistant said that would be good.
And it turns out– I saved a previous form that I modified on Kami. I changed the dates and fixed the offending question and submitted it electronically to the doctor’s office a few minutes ago. I’m emotionally drained and the whole experience has me drained.
Five Tips if you are dealing with medical paperwork & paper pushers
Keep extra blank copies. When you receive a document, try to get an electronic copy and a print copy. Obviously, if you have an electronic copy, you can print one. Print a blank copy and set it aside for your medical provider. Before you interact with an electronic copy, duplicate it. That way if you make a mistake or someone loses something you don’t need anyone’s help to get another copy.
Warn the provider. Call the office or use your electronic patient portal. I had my first intermittent leave form filled out by my neurologist, but had to pay a $25 fee and it took two weeks. The second time (and the third time and now the fourth time) I asked my primary care physician. I know from past experience, he fills it out with me and doesn’t report it to the office so I don’t get charged the fee. Ask if the provider would prefer you book an appointment so he/she can evaluate you, if you can email, mail or hand deliver a copy.
Do as much as you can yourself. At this point, I discuss a lot of these things in the patient portal via “ask a non-urgent medical question” to my doctor, which I know is read by his assistant. I literally start with “This message is for X. I apologize for another paperwork request, but my employer is giving me trouble again.” I send a form I filled out (except for the doctor’s name, date and signature of course) AND a copy of the blank form with the notation “in case my responses are not accurate, hopefully I did not misspeak”). On paper forms, I use post-it notes to direct the doctor to the actual medical stuff.
Record the answers. Part of the reason I can fill out most of these forms is because I keep and file the forms. So I use the doctor’s previous answers and update as needed. That way you sound like your doctor, because you are using your doctor’s language.
Keep copies. I always ask that they leave me a copy at the front desk so I can pick it up. I always point out to them this is not to check up on my physician, but to make sure no paperwork gets lost in the system. I have experienced several instances where the absense management company mislaid a fax, then changed my examiner, who never received a second fax which meant I was mired in paperwork for a month trying to get one of my short-term disability payments. If they give me a copy, I scan it and upload it to them directly, either my email or whatever the primary interface is. And if they lose it, I can email the scans again and not have to bother my doctor’s office.
Following up with the dietician
The dietician called me consistent. I did not lose any weight. I did not gain any weight. But my orthostatic hypotension has all but disappeared. But to maintain that, I need to consume three to four times the amount of salt I have been eating. And monitor my water intake. She perused my macro balance and my diet from the last month and really did call me consistent. So I guess the next step is to deal with my weight.
Speaking of weight, the nachos I had for dinner didn’t help.
Cool Ranch Doritoes
two slices organic American cheese
Sam’s Fresh Pineapple Salsa
Spicy Cuban Black Beans
Avocado Crema
Nutritional Yeast
600 calories. 20 grams protein.
Maybe tomorrow I’ll tell you how/why I missed the event at the Parkland Community Library. Maybe tomorrow will be smoother.
Not The Matrix. As in the movies. The absence management company.
I have an intermittent FMLA leave that I use when my body can’t tolerate my job. I thought, after having two different doctors fill it out at least three times (yes, I lost count) that I was approved for 40 hours a month of leave. Now, not understanding that is probably my fault.
But the curt paper pusher that told me I had 15 days to submit new paperwork could have been more patient. Apparently, my leave only entitles me to ONE episode per month of UP TO 40 hours. I called out sick in mid July and left work ninety minutes early today– so that 9.5 hours is not allowed because it’s in two episodes not one.
This is the type of bullshit one has to deal with when you try to advocate for yourself in an able-bodied world.
My hip has been inflamed– at least that’s what my darling chiropractor says, I say it feels crooked and like I’m dragging around a tree trunk– for several days now and getting progressively worse. So when my numbers slipped down to 97% today I tapped out, in part because of discomfort but also because the discomfort was causing me to fall behind and if I fall behind I will be penalized.
And the concern becomes: if I end up “not fully performing” in my end days, will I lose my severance?
But these are all my thoughts at the end of the day. At the beginning of the day I had to release my cat Fog from a crate and package a fecal sample for the vet. He has worms. I know it. I see it. As a cat rescue worker, I had the first medicine of defense, Pyrantel, but that didn’t work so he might have a tapeworm (that comes from ingesting a flea) and that requires Drontal which I don’t have. I think Touch of Grey (one of the two remaining fosters) might have worms, too.
Southern Candy didn’t come to work today for her own health reasons which had a friend and I ready to send out search and rescue dogs.
And Gayle, my friend and the art director, had eye surgery today which was pretty serious stuff but she texted that she can see so all is well so far.
Meanwhile, my neurologist responded to a message I had sent during her vacation and now she wants me to go for a urine test– but no one seems to know where I can go. And I don’t have time to go. So, if I have to go for a urine test, I thought I’d check with my doctor and see if I need other tests before my upcoming physical. They ended up ordering a urine test because the neurologist didn’t yet. But they missed the part about the other tests.
Now we’re all confused.
My neurologist is afraid I have some sort of UTI, which I think I’ve only had one of those in my entire almost-fifty-year life and I remember pain being part of that equation. Why they think I might have a UTI contributing to my issues I don’t know.
But there’s just too many things I need to figure out and organize. And I’m mentally and physically exhausted by it all.
The questions become:
Why must organizing care be so complicated?
Why do employers make health-related issues such a hoop-jumping process?
I’m running out of steam– there are so many things to do and to talk about that I just can’t get to them all. And that’s okay.
I have commitments. I was elected president of the Greater Lehigh Valley Writers Group. I have a child enrolling at Lafayette College in a month. I met with a young editor yesterday after my day job at Stitch Fix and absorbed her energy and hopefully helped her on her journey.
The decorations and the Braille are ready for tomorrow’s Disability Pride Lehigh Valley event.
And I manged to NOT put my underwear on backwards as I did on Wednesday.
Sometimes the little wins mean a lot.
In general my blood pressure and orthostatic hypotension symptoms have improved with the increased salt in my diet. If I get a good eight hours of sleep I feel decent. I have to ask if that’s due to the salt, the rest, or my frequent missing of my calorie goals (the other night I went on an eating binge and ate 500 calories of almonds. Who does that?). It also could be my increased stress levels as I’m losing my job in seven weeks.
Seven weeks.
The first medical bills from my March hospital stay has arrived, which like everything else, makes me wonder what’s to follow. I’ve started applying for full and part-time positions–but I really want to get a part-time position in something that will give me knowledge toward building my own business or to string together writing and editing clients.
But I have no savings to pull this off.
*I have a Substack and an underpromoted, underutilized Patreon if anyone wants to support Parisian Phoenix Publishing in those ways.
(And reviewing my own creator dashboard, I set up Patreon a year ago and didn’t do anything with it. Put that on the list, in addition to updating the web site in general.)
My recent experiences as a Stitch Fix client
I have waited more than a decade to launch into my client experience with Stitch Fix. If you’ve read any of my novels, you can probably imagine why. (More about my novels here.)
I started getting fixes around my birthday, which was in May. I had given my employee discount to a friend for a little more than a year, as I did not have the income for new clothes. If you are a regular here, you’ll know that the pandemic and my recent life and lack of discipline have led to a 30ish pound weight gain on my small frame, so that factored into my decision to postpone my fixes. Why buy new clothes if I’m not healthy and back to normal?
The Teenager told me around the Back-to-School season last year that she felt like she didn’t know her own style, because she didn’t get to buy her own clothes. So, I transferred my discount to her. And an employee discount can only be transferred every six months.
This week my fourth fix came. I can’t believe it’s four as I can only remember three, but these days I’m lucky if I can spell my own name.
So I asked for my fourth fix if my stylist could send suggestions for events related to titles launching at Parisian Phoenix Kink. Edgy, kinky, sexy. I even listed brands and ordered everything vegan leather I could find on Freestyle. Like pants. And a really amazing dress. The pants worked out, but the first dress was too small, and the second I did not order in petite so it was too long and for $250 I lost patience and wiggle room on my American Express to find “just right.” I did however find a dress, that although not vegan leather, fit the aesthetic and allowed room for my expanded-since-weight-gain bust size.
With all of this information of what I’d purchased, what I’d returned and why and so many items I had “saved for later,” the AI algorithm that Katrina Lake has bragged about in every podcast appearance I have heard should be able to show my stylist what I want. It should show me what I want.
And the same week Stitch Fix announced it was closing our Pennsylvania warehouse, Gwyneth Paltrow released an episode of her Goop podcast featuring Katrina, with whom she appears to be friends and retreat buddies, bragging about the algorithm and telling the same stories of Stitch Fix’s origins I’ve heard for three years.
Shipping times across the Stitch Fix network have increased, when the company eliminated its second shift (originally implemented for pandemic social distancing, splitting the warehouse staff in half) and asked us to convert to one of two 4-day, 10-hour cycles, the logic was that operating seven days a week (especially in our region where we can ship to anywhere in the continental US pretty much within 24-48 hours) would allow Freestyle orders to land at clients’ homes quickly.
And in my experience as client and employee, it did. My daughter was using my discount at that time and there was one incident when I ordered earrings on Friday night, coincidentally on Sunday morning around 7 a.m. on packed them, and I received them Tuesday morning.
I wrote a blog post (here). And I also made an unboxing video.
Now it often takes two weeks to receive an item. And we’re not even closed yet!
So, my fix preview comes. And I am very disappointed. I can see why the algorithm has selected certain items based on my past Fix purchases, but it’s like it has completely ignored the pile of things I have ordered from Freestyle since my last Fix.
Are you all still with me? Okay. So, the box arrives and I’m soooooo excited to see what kind of party outfit my stylist picked out. I know there’s a pink dress but everything else is a surprise. I ask The Teenager if she wants to see me open it.
She says, “Sure.”
And she starts the video. I open the material inside, and I see the “first fix” card that goes out to new clients. I am not a new client. I look at the Style Card and the name is not mine, the stylist is not mine and the fix is not mine. Now, despite the fact that I work for Stitch Fix and I fold and prepare 130+ of these fixes a day… despite the fact that this box came from our warehouse… and despite the fact that I also have performed the role of the person who prints, folds and drops the little envelope in the box…
In this moment, I am a client. It’s like all knowledge I have of of the process falls out of my head. (And it’s all on video you can watch it.)
“This is not my fix,” I say, despite the fact that I have already shown the camera a bundle with a pink dress in the middle.
I had glanced at the style card and saw that Becca, the client, had received athletic clothes and sneakers and I clearly had heels in that box.
I shoved the entire fix in the return envelope without even opening it. I was so angry and disappointed.
In my disoriented anger, I did not know that there was only a brief moment before check out that I could see the style card and note from my stylist that accompanied my fix. And I zoomed right by it as I started to realize that they were my clothes. And I recalled seeing some notes from my stylist about how the system wasn’t giving her the types of clothes I wanted so she tried to build some outfits based on what I had. But I had clicked past the note without fully reading it.
And now it’s gone.
Remember, I have waited more than a decade for these fixes. I have no clothes that fit because I gained weight during the pandemic. I am losing my job and I need clothes for interviews, business and launch parties.
I email customer support and ask for a copy of my stylecard.
At 4 a.m. the next morning, as I get dressed for work, I realize: I can peel the sticker off the box, research it and probably find my own damn style card. But we change in-house warehouse management systems so often I can’t remember which app does what I need it to do. I ask a lead– because now I realize one of the people who prints the style card is the one who screwed up my whole experience. She refreshes my memory.
I look up my package and realize my cat-loving friend Tom delivered my shoes to the picker, and that I know the name of the picker who ran around the warehouse on my behalf. The person who QC’ed my package– that’s the same job I normally do– was probably in the line next to mine. And then I see it. The person who handled my package last. It’s someone who is very good at her job and even gave me some tips once we moved to regular day shift.
This person means well, but punctuates her sentences with things like, “it’s not your fault. You second shift people weren’t trained properly.” I didn’t tell her she screwed up my box, and my animosity about the whole experience faded when I saw her name at the end of the line.
And my brain thought to itself, “it figures.”
By then, customer support had emailed me a PDF of my style card. Which I could have printed at work. But they offered to mail me a copy. So I thought, “Why not?”
I thanked the customer support person who took the time to explain to me how the warehouse works (because they always blame the warehouse, no one wants to hear that the beloved algorithm is broken). And I told her, “Yes, please mail me a copy. That would be lovely.”
I haven’t received it yet, but I do keep them. But that’s a blog entry for after my separation date.
I decide that maybe I’ll order one more fix, since I paid for the style pass so I won’t lose any money. And the preview comes… and guys… this one nails it.
It’s due to arrive at the end of the week, so here’s hoping this story has a happy ending.
It is 4:38 a.m. and I’m drinking dark roast coffee, double caffeinated, and thinking. I gave myself permission this week– despite being behind on publisher-related business– to work on my own novel, the fourth volume of the Fashion and Fiends series, Road Trip. I’m about one-quarter through the second draft, which is where the bones of a story usually beefs up and becomes what the reader might recognize as a full-fledged book.
Every day, despite whatever struggles have me in their grasp, I look for beauty in the moment and the world rarely disappoints me. But ever since learning my day job, Stitch Fix, is closing our warehouse and my end date is September 15, the blend of anxiety, stress and hope is taking a toll on my medical and physical health.
The dietician is right. I need more sleep and I need more salt. I had been on the path for some weight loss but the crushing heat and… everything?… has led to a tendency toward snacking again. First with almonds, then an evening cocktail. Sunday night I didn’t have the strength to eat a proper dinner so I had some nuts and some peanut butter pretzels in measured portions, and then a single serve bag of potato chips because I still felt weak and my sodium levels for the day were still garbage. And at that point I finished off the brownies. And last night, I skipped the gym because my joints were screaming and my trainer picked up a cold at work. So, I started with a nice decent, 100-calorie portion of Ritter Sport chocolate stuffed with raspberry rose filling and ate the whole damn bar.
I am pressed for the time to care for myself properly. I lack the financial stability to work less or even to pursue treatments that might help. I’m not “disabled enough” for government support and it’s hard to be in this vague middle zone.
And that doesn’t just apply to people with health issues. It’s hard to be older in our society. It’s hard to be a working parent, and perhaps harder to be a stay-at-home one because so many people either resent you for being able to do that (or don’t think about the sacrifices you make to do it) or look down at you for gaps in your professional resume.
It’s hard to balance your dreams with your job, because despite respect for the enterprising spirit, succeeding in business– especially a small one without capital or experienced backers– is hard. It’s hard to be young. It’s hard to be poor. It’s hard to be uneducated.
That’s one good thing about a mass facility shut down like the Stitch Fix Bizzy Hizzy. We can also talk about how hard it is, how sad we are, and how so much of this whole situation just sucks.
So, I hope today is a good day. Or at least better than yesterday. Because yesterday was so hard I almost cried at my station, table 18 in women’s QC. The humidity in the warehouse was stifling. I couldn’t keep up– in part because my support team did not meet my accommodation’s 100%. There were four people on the support team. One did he best but didn’t normally do that work and it took him half the shift to remember my accommodations. Then, due to his physical conditions, he didn’t always get all the items for me. I know he didn’t see them.
Another person just didn’t do them. This person tends to skip them, yet does them reliably for another person who has asked for the same accommodations as mine for a temporary situation. I worked next to this person the last time she was in this situation, and she managed to do all her work with an hour to spare and now she spends a lot of time in the bathroom and wandering around talking to people. She’s even made comments about my work performance.
Which makes me ask, to no one of course because who wants to be that jerk, if the point of reasonable accommodations is to allow a worker with a disability to perform at the same level as an employee with no such limitations, why are others given the same accommodations as me but yet have time to spend playing on their phone (I have seen so much TikTok), having long conversations not even at their stations, and slipping into the breakroom for extra rest?
I was told I could do what I needed to do as long as I met my numbers. Many of these other people are high performers who are very good at their job. I am also good at my job, but my body just cannot bend and move with expediency. So, I have to spend my “bad days” working as hard as I can and pushing until my joints scream to maintain numbers, because I cannot use my medical leave unless my numbers are firmly at 100% or I will be penalized, a.k.a written up and put on a probation of sorts. I worked so hard yesterday… my numbers hovered at 98% most of the day, so I couldn’t even use my approved medical leave.
That hurt mentally and physically.
When I first received my accommodations, I was placed at table 18 at the back of the line so the support team could leave me all the boxes coming out of the refix department (work that needed to be done over for one reason or another) and then share that work with anyone else who might have similar needs.
That stopped. I was told at first it was because there wasn’t enough work. Then it was because they were afraid I couldn’t finish it all. But I’m really thinking it’s because the other workers complained. And I wouldn’t care– but I’m struggling. And it’d be really nice to be able to go to work without wondering what I will endure and how much it will hurt.
And for the record– I usually do between 105% and 110% when my accommodations are met.
And I only got accommodations after the company switched from a weekly performance average to a daily accounting. I typically meet 100% per week, but usually once a week or so, I can only hit 95%. So after two years and several shift changes, my employer changed how I had to do my job. I used to be able to do it without accommodation.
In roughly nine weeks, I will lose my job. I have been with Stitch Fix more than 2.5 years, and in that time, the people I have worked with have allowed me to grow, grieve, learn and be who I am.
And I thought I was holding up well against the stress of losing my job, with more debt than savings thanks to some life situations and my recent medical issues. But when you receive the email that lists your personal separation date, that makes it real.
September 15. Some of my friends are looking at a week before, another a week after. One person I know with 2 more years of tenure with the company has a Friday October 13th separation date. I am sooo jealous, primarily because it’s the perfect day to lose your job. But even beyond that– you could spend the whole weekend watching horror movies to commemorate the event.
Right now I am stunned. I haven’t read the copious amounts of paperwork. I’m not ready. I’m just going to be sad. It was a hard, hot day and my body didn’t want to cooperate. Luckily, Nicole Jensen of Back in Line Chiropractic and Wellness Center could make my feet and legs do feet and legs things.
Meanwhile, if anyone needs any projects done by an awesome writer and editor, get in touch.
Angel Ackerman 