Tag medical advocacy

Am I Alice? The White Rabbit? Or the Mad Hatter? Or the Queen of Hearts?

Angel Ackerman Leave a comment

Who doesn’t love a good mystery?

Anyone who deals with serious medical issues has experienced a sense of Wonderland. Is your regular life Wonderland? Or is the medical system Wonderland? Who is Alice? Who is the White Rabbit leading Alice down the rabbit hole?

We all have a lifetime of experiences. Some good, some bad. Some of us got “good” bodies, some of us have bodies we hate. Some of us have learned to accept our bodies. Some of us work really hard to change our bodies.

Some of us want to understand. Some of us want only to survive.

All of those things are okay.

We all have Alice in Wonderland moments.

It’s been a couple of weeks since my daughter, who has ADHD, floated the idea that she inherited the ADHD from me. It’s been one week, almost to the minute, since I took 10 mg of extended-release Adderall to test her theory, at least to give us data on if the drug brought me up or down. And the answer was down, pointing toward something not neurotypical.

And as you will see later in this entry, one of the stumbling blocks to determining what exactly my brain needs– whether that is treatment for ADHD, anxiety, depression or nothing– is, as my daughter would put it, I mask so hard even I don’t see the problems.

I have always been extremely organized, and I forgot nothing. And yesterday, at my second doctor appointment of the day, the clinician got out the standard short ADHD screening and asked the questions related to inattention. I don’t have a problem there. But I am realizing more and more, I write everything down multiple times. I write in my journal, on my paper calendar, on post-it notes, on my electronic calendar, in this blog. I write down when I take my medicine. My blood pressure.

And this morning– I went to blow my nose. Allergies are hitting in full force and Eva has an ear infection. In the middle of blowing my nose, I put the tissue down so I could take a Zyrtec before I forgot. I do not remember if I took the Zyrtec. I did not log it in my phone. The cap is off my water bottle, but did I take the pill?

Could my “obsessive” habits, like checking my bank balance several times a day, be not a form of soothing my own anxiety but something I do to prevent myself from missing something?

And even right now, as I write this, Eva has interrupted me and the entire train of thought for what I was writing completely disappeared. I had to reread the whole paragraph and reconstruct what I was trying to say. Is that normal? I’m honestly asking. So before I get too much more ahead of myself, let’s talk about yesterday.

Yesterday, I met with my longtime mental health therapist. I wrote a quick entry yesterday about that visit, posted it, somehow managed with a same day appointment with the practice who handles my everyday care, realized that the post was worse than I thought it was, and so I took it down with the intent to do a better job with new information.

And here we are.

Some observations from that appointment with the therapist who started treating me for anxiety more than 15 years ago. (That seems crazy. It can’t be that long. It just can’t.)

  • My individual complexity may prevent a simple diagnosis/solution. My history of childhood trauma and neglect, my family history of addiction, substance abuse and domestic violence. My physical disability (to which he adds “never discussed nor treated). So my brain could be doing anything for any reason. I believe this is why I’ve developed many of the habits I have that are masking how I feel on the inside. Whether we attribute this to ADHD or anxiety, that is part of the mystery.
  • Even looking back, with my history of doing and achieving all the things and doing them pretty well, it would be difficult for a clinician to trace this back to my childhood. Childhood presentation is one of the required elements for an ADHD diagnosis. (But, again, I was dealing with a lot of things, things I didn’t understand… from my body and my environment.)
  • My therapist theorized that if I have ADHD, I may have inherited it from my biological father. And that was a lightbulb moment for me. The first time I met him, I was

(I picked up my phone while typing this. I have no idea why. Got lost scrolling Instagram. Put the phone down. Realized I was in the middle of the sentence. And don’t remember what I was saying. So I distracted myself?)

  • … impressed by the breadth of his creativity and the projects he undertook. But I also remember that he had decided to remodel the bathroom and had never finished the one wall. It was still primarily the framing. Functional. But no real wall on the inside of the room. And when he and my mother split up, he went with his dog and lived in a cave in the woods until it got cold. Then it built a shelter. And when he and his wife split up, he left in his pickup truck, with his dog and a duffel bag and moved to the midwest. Where he got a job at Russell Stover chocolates.
  • My therapist can provide a letter of support to my primary care provider, and he reminded me that it didn’t matter the diagnosis if we could find a treatment that could bring relief. (And my therapist and doctor know each other so that helps.)

Now, I know “euphoria” is one reason people who don’t have ADHD take Adderall. And I’ve taken other types of medication: Lexapro for work stress and then depression (which helped in that “take the edge off” kind of way); beta blockers to control my heart rate (which failed); and Ativan for panic attacks (great, as long as I just wanted to come down and not do anything for the rest of the day). When I took Adderall, it wasn’t euphoria– it was the sensation of being able to let go of the adrenaline, the sense of doom and the constant muscle tension and being able to effectively regulate my emotions because normally my emotions also stress me out because I can’t do anything to work through them. I could on Adderall. If anything, that is what I want. I want that.

I asked my therapist: What would you recommend as my next steps? Since I have not been able to get past the waitlist for a psychiatrist, should I make an appointment with my family doctor?

I went home and called the office.

(Right now I am sitting here, forcing myself to finish this because it’s important. I need to pee. I’m very hungry. It’s 9:22 a.m. and my daughter and I are leaving for Susaquehanna Service Dogs which is sooooo exciting and stressful and… but if I don’t do this now I will not do as good of a job if I do it later and I don’t want to forget a single detail because the details can mean the difference between finding answers and getting the run-around from the medical establishment. This is how my brain works.)

I was offered an appointment with my regular provider October 13 or I could see another doctor in a couple hours. I took the appointment in a couple hours. I knew nothing would get resolved quickly, but wanted to position myself “in the system” to get the process working. That’s the hardest part of the medical system. Positioning yourself to get access to physicians and presenting the case with evidence, not anecdotal experiences.

That was why I started with my therapist. While he’s the most expensive provider on my list of medical professionals, he was the most qualified to give an opinion. Offering his opinion, based on our experience of 15 years, will hopefully show this is a legitimate possibility and not just a drug-seeking behavior. I specifically work with this therapist because he is a Ph.D. psychologist– I wanted someone who could help me grow as a person, not just medicate my brain. I have done a lot of worth in those 15 years, but recent years have shown me how much I fight myself and that I could have a chance at actually slowing down and enjoying more of my life, not just frantically surviving it and celebrating sporadic moments. Because in my brain, nothing is ever safe, or enough, or helps me overcome the doubt and doom.

(Okay, I need to get up and pee now. I’ve had 10 ounces of coffee and like 24 ounces of water… Be right back.)

(Hi, me again, I stopped to look in my protein bar basket. I should eat something. My belly hurts I’m so hungry. I have these blueberry breakfast biscuits that taste nice but don’t have any real protein. I also have a cookie dough protein energy bar from Aldi that is high in protein but full of chemicals, sugar and preservatives… I can’t decide. I have them both on my desk. I really want a piece of toast, but then I need to find and decide on bread, wait for it to toast. I should make an egg sandwich, but that is a whole undertaking of cooking. I guess I’ll open the breakfast biscuits… The taste bad. They usually don’t taste bad. And they smell weird. Are they spoiled. “Best if used by August 2025.” Did I mention I tend not to eat food I like because I might want it more another day? And then I panic that it’s not the best day to eat it? And now I’m sad that I let them spoil. Like really said. But honestly– they were Dollar Tree biscuits. So now I feel bad that I feel bad. I don’t need to beat myself up that much.

Now, do I eat the protein bar? Because I do not want to eat now. I threw out the biscuits. But I put them in my office garbage can. And the dog often gets in that can. Maybe I should empty it. Yes, let me do that quick. BRB. Again.)

So the doctor. She’s a great doctor. I mention that my daughter, and I both use the practice and my daughter does have ADHD. I tell her that I know we won’t have answers today, and I don’t expect that but I would like to start investigating this. She listens attentively and we explore the classic short ADHD. I have the anxiety-laden portion of hyperactivity impulsivity but not much else– and I ask her– I probably do fidget, but I have a spastic muscle disorder that means my legs cannot move. So how do we know? And I have similar I don’t know answers to some of the other questions. The test is inconclusive. She mentions other SSRIs. And that Wellbrutin has shown to improve symptoms of ADHD that coexist with symptoms of depression but it makes anxiety worse. And then she adds, “so that would be a bad idea for you.” And she wonders if I should try other SSRIs.

Her plan becomes three-fold:

  1. Get the letter from my therapist.
  2. Book an appointment with my regular doctor ASAP because he’s a busy guy. (Did not expect that.)
  3. She gave me a referral for a behavioral health case manager. This professional should be reaching out to me to prepare my case for review by a psychiatrist. It sounds like she does the evaluation, makes notes and gives them to the doctor so I can get medication through primary care… or through that psychiatrist. It’s a program designed for people like me who don’t have dangerous behaviors or immediate needs. And reduces the waitlist problem. That people never get off the list.

(I don’t want to write this anymore. I am forcing myself to do it. Just so you know.)

I leave the office. Hear from Eva that she got antibiotics for her ear infection. I email my therapist but then decide a phone call is more expedient and professional, so I call. He leaves me a voicemail a little later that we will get the letter together. And then the funny part– my actual primary care doctor comes to the restaurant, drives up to me in the drive-through, and chuckles when I ask what name to put on his order. He knows nothing of what I have gone through this week, or maybe he does, but I don’t think the other doctor finished her notes yet.

And that’s where all that stands.

Now if you’ll excuse me, it’s cold this morning and I am debating making a can of Spaghetti-O’s for breakfast.

Do I need to put on clothes today?

Angel Ackerman Leave a comment

Tonight I have a long-for-me shift at the fast food restaurant. 4 p.m. to 10 p.m.

Tomorrow I have a very busy day– gynecologist appointment at 7:30 a.m., helping Nan with her stuff around 9:15 a.m., teaching in the afternoon.

Thursday, we are recording our radio program at WDVR. Then, selling chicken from 4 p.m. to 9 p.m.

So, today I wanted to send out our acceptance letters for the Greater Lehigh Valley Writers Group The Write Stuff conference, March 11-13, 2027 at the Homewood Suites by Hilton in Center Valley, Pa. And I almost sent one so far. It’s ten minutes from noon.

Did I do things? Yes. Were they important? Yes.

Just not what I intended.

One of the items I have needed to do is grab a few groceries. I have been very careful with my diet lately (which has led to a new number today, one I haven’t seen in more than a year if not since the pandemic when I started rapidly gaining weight). And my daughter made me get dressed and go to Aldi.

Why Aldi? I wanted chicken salad and shelled endamame.

They didn’t have chicken salad and only had whole edamame. I didn’t want whole. I also wanted a salad and all their greens and pre-bagged salad mixes looked past their prime. So I came home with baby carrots (which I don’t eat, and I was hoping to make carrot pickles but I didn’t get the vinegar…), plain greek yogurt (because the flavors have too much sugar, but I probably won’t eat the plain), half and half (but I did not get coffee), crab cakes, and cheese. And bologna. Cheap cheap bologna because despite my primarily vegan tendencies I just really needed a bologna and cheese sandwich.

And two boxes of protein bars since I didn’t buy much food.

I did not want to get dressed. Until later.

Yesterday, I had my annual physical with my primary care physician. It was the first appointment of the day, and he spent 45 minutes with me. I had told myself that I did not intend to bring anything up. That I wanted to get in and out, continue my own experiments into diet, exercise and sleep, and ask for follow-up bloodwork.

He went through my late June bloodwork I did for him and the mid-August bloodwork I did for the life insurance company, with me, and requested I do another A1C and some vitamin D and some stored Ferritin… He was surprised to see– that as I told him– my “bad” cholesterol and my weight change very quickly according to what I eat. It’s how I gained almost 15 pounds this winter and lost it since July.

I still think I am among a rare amount of people who really pay attention to their bodies and try to understand and improve. He also asked how long I’ve been off my blood pressure meds– and I said– “about a year,” and then I reminded him that my cardiologist knows, or at least I told her I would probably stop taking them.

“Your blood pressure is great,” he said.

“The pills didn’t help,” I replied. I was prescribed the beta blocker because of my single incidence of afib. I stayed on it because I hoped it would help my anxiety– specifically the way my heart will sometimes race for hours for no reason. But the medicine never stopped that. If anything (and I have yet to prove this, my evidence so far is purely anecdotal, it’s food. I think the right blend of high sodium and refined white carbohydrates makes my heart want to explode.)

And my blood pressure has maintained itself in a healthy zone the entire time I have been unmedicated.

But then my doctor found out, I have been having stress dreams, disrupted sleep routines and general poor sleep since incorporating more “easy food” and less of my “outside aisles of the grocery store” home cooking. And now he’s worried about sleep apnea, my tendency to display symptoms of mild clinical depression, and my inability to relax (or have fun). He offered me a temporary antidepressant, and I declined.

And then today I remembered… I have been on the waitlist for a psychiatrist appointment for almost a year. During my routine physicals last fall I talked with my entire care team (primary care, cardiologist, mental health therapist, and neurologist) about the prospect of trying a low dose of valium as a breakthrough medication.

According to my research, doctors often give valium to children with cerebral palsy to calm spasticity and help them sleep. I asked my team about it. No one has experience with that sort of thing so they referred me to psych. So I reminded my doctor of this is an email. I told him that on bad days I often take 60 mg of baclofen– so could we try a small dose of valium in a small amount of pills to see if I took 2 mg of valium instead of all the baclofen if that would calm my muscles, alleviate my twitching hamstring, settle my heart, reduce my spasticity, and allow me to (1) stretch everything, (2) sleep better and therefore (3) recover better.

Remember– my leg muscles are unable to relax. I can’t even describe what it feels like. Sometimes it feels like my calves are so tight they burn. Sometimes my thighs feel like bricks. So if my doctor thinks I might benefit from a little something… this might be the something.

And on my one tangent for today: I have been binge-watching Nurse Jackie. I never liked Jackie, found her repulsive as a person but the older I get the more I recognize the accuracy of the depiction of people in addiction. And my daughter brought up something vital to consider:

Is Nurse Jackie an unreliable narrator?

My daughter votes yes, because there’s no way that an addict taking as much shit as she does (especially as a nurse) could appear to have her shit together as well as she does.

Interesting thought.

I have reached the midpoint in the series, and I’ve never watched this much before. And she has entered rehab and thrown her husband out of the house. And I’m thinking about it.

Meanwhile, my daughter has been tracing ADHD and autism in her family tree. My daughter– from a young age– has been super keyed in to people’s minds, patterns and habits. And just like she’s freakishly good at seeing every ripple in a dog’s body language, she’s damn accurate with her psychiatric diagnoses. And she’s finishing her bachelor’s in psych at Lafayette, she’s also developed some ideas about medication (so I asked her to do one of her recent psychopharmacology assignments on valium). She’s wondering if I might have ADHD.

My response is typically that it doesn’t matter.

I have a disability. One that stems from lack of oxygen at birth. One known to affect GABA in the body.

I score fairly high on the ACE scale for childhood trauma.

My parents were alcoholics.

Did I inherit generational trauma? Probably. Do I exhibit everything from OCD to depression to anxiety? Yes. Because my brain never learned how to feel safe and/or let its guard down. I never relax. The last time I felt truly relaxed was during some good adult physical activities that I don’t get nearly enough of. And do you know how much I need to trust my partner to let that happen?

My daughter believes something interesting about this whole ADHD hypothesis. She basically said I have not allowed myself to fail enough to recognize the truth it what she’s said. AND that because of that no clinician could ever diagnose me.

Strange food for thought.

The Day the Garbage Trucks Swarmed

Angel Ackerman Leave a comment

My shift at the restaurant Thursday evening went much easier than Wednesday— though I couldn’t bend and reach the floor and I took a lot of Baclofen.

And my left hand strangely hurt last night in the fifth metatarsal, in the same spot where I broke my right hand what had to be a decade or more ago.

Today I slept until 8 a.m. when my Goffin’s cockatoo, Nala, screamed, probably concerned that I died in my sleep.

I stripped my bed, started laundry, drank some coffee and used household chores as my warmup for a home workout. (After clearing my business email and banking stuff.)

The scale showed another pound gone. Soon I might hit the ten-pound mark.

Nothing like 30 or 40 pound cat litter boxes to practice farmer’s carry. And five trips up and down the stairs gets the heart rate up.

I did a pretty solid shoulder workout today, 22 minutes of just weights— including push press, dumbbell row, shoulder lateral raise.

Did some more wash, handled some more email and spoke with one of the Parisian Phoenix authors about a presentation we have been invited to give at Hellertown Library.

I did the dishes, started cooking some chicken livers for the dog, and made myself a big salad with lots of carrots.

I went to Panera for a while to work on my background material for the stories I am writing for Armchair Lehigh Valley regarding the May 20 primary.

And I got my schedule from the restaurant— 4 days in a row and 22 hours. I messaged my boss on Slack to warn her that that may be a struggle for me. She hired me so quickly I never had a chance to tell her about my cerebral palsy. She hired me to work 10-12 hours a week in the dining room, so I didn’t think I would have to.

But here I am, working 20+ hours all over the place.

I wasn’t sure how to bring it up, and I feel it’s better to do these things in person, but at least on Slack there’s a paper trail.

It turned out to be a great conversation. One we will continue in person. As I suspected, she’s short-staffed and I can really use the money so I didn’t want to complain.

Eva picked me up and we stopped at Grocery Outlet. And as soon as we got home, three garbage trucks swarmed us and our house.

I made a vegetable lovers DiGiorno thin crust pizza and split it with Eva and watched some more of The Pitt. Then I came up to make my bed, clean litter boxes, feed the bird, and get the cats water before my shower.

Now it is almost 8 p.m. and I plan to read until I am sleepy.

Cardiology meds

Angel Ackerman Leave a comment

Last spring, I experienced two falls down the stairs in a two-week period that led to bodily injury. That led to a period of A-fib and 24-hours in the hospital.

The cardiologist on call at the hospital put me on beta blockers, metoprolol, and the dosage wiped me out and gave me orthostatic hypotension. I learned through working with a dietician that I am sensitive to salt and I drink enough water that I wash the sodium from my system.

My primary care physician dropped my medication dosage in half, but the orthostatic hypotension and occasional weird bouts of high heart rate did not go away.

I found a new cardiologist and got a second opinion. The new doctor thought the Apple Watch was enough protection against Afib and that I could stop taking the medication. Since I was losing my job a month later, I thought discontinuing a beta blocker would lead to an increase in blood pressure due to stress.

But now it’s a year later– and I’m not sure the pills do anything.

The physician assistant and I had a discussion about eliminating the med, and she wants the doctor’s opinion first. The question remains of what should this medication be doing. If it’s supposed to be helping my heart remain a steady pattern, then I need something extended release or a different class of medications. If it is really just an insurance policy against Afib, I suppose it is enough.

The physician assistant asked if I would be willing to wear a Zio heart monitor to make sure this was a smart move. Last time I wore a Zio, it showed some stuff, but not Afib. That cost me $600, and that was when I had “good” insurance and Medicaid. I have a high deductible plan right now with high coinsurance and no HSA, so I mentioned that I was saving my budget for more important tests– like the MRI I am paying for out of pocket. That bill was more than $2,000.

I haven’t heard back yet, but my point in mentioning this is that the pertinent question of the day was to ask what my medication is supposed to do, and if it is doing its job. It’s easy for a doctor to tell us that we should or need to take something without question its exact function.

Fifteen people who don’t matter & an advocacy story with an unhappy ending

Angel Ackerman Leave a comment

This week was hard. I thought it would be different.

So, last week 100 people got laid off. There was fanfare. We left at 9:30 a.m. with pay for eight hours. Supervisors, process leads and managers lined the walkways and wished everyone (even those returning to work on Monday) goodbye by name. There was hugging and frolicking, crying and laughing.

This week, because they laid off 100 people last week, we had to work every second of the 40-hour work week unless we took voluntary, unpaid time off Friday. And how much time depended on your department, whereas the week before everyone in the building left at the same time.

So a lot of people from support left after 9:30 a.m., returns left at 10:30, inbound left at 11:30, and QC left at 1:30. And leads and supervisors just disappeared throughout the day. One manager wished me well and said goodbye at 7 a.m. Which was rich, considering what happened at 6:30 a.m. But I will get to that.

There were only 15 of us laid off yesterday. I know numerically why 15 people are significant, but when 100 were let go the week before and then 15 each week for several weeks following, it really (in my mind) makes a statement of how impersonal and how meaningless each person is in the eyes of the company. Why not make it another large group? The psychology of realizing you are one of 15 people that the company picked to leave on this Friday, it’s awkward.

Because you’re singled out of a large group.

Now, imagine you’re me. I know I speak up when no one else will, and I know I have challenged the thought process of my leaders. I try to frame everything with logic, to explain why I’m challenging what I’m challenging, but in the end, some people don’t don’t like to reach beyond their comfort zone. And often they just don’t know what to do to fix it, or they feel helpless or they feel attacked.

Yesterday I reported to my assigned station, which has been changed over the course of the week because with the reduction in staffing we have new work patterns. And I told one process lead that I didn’t care where they put me for the week, as it’s only the last week and I don’t feel pressured to challenge my physical capabilities to meet metrics. Most people had stopped meeting their numbers on purpose.

So, on Friday morning, I reported to my table– which for the record, is a table I hated, but no one asked and I just sucked it up and did my job– and I noticed… No one else came near me.

It was my last day. And I think I might have been the only person in my little unit leaving that day (that didn’t take the day off) and now… I realize… there is no one else on either side of my line. I have no shipper, there’s no work for others. They moved everyone else and just left me there. This means all of my work will just sit on the empty line until someone moves it.

Probably because they know I have issues physically and struggle with table changes and more importantly, I have a big mouth.

I feel completely on display. I feel singled out. And at this time, other people are looking at me wondering why I am standing in the middle of a closed line. In the middle of a wide open space. Like there’s a big open field and I’m just standing there. By myself. On my very last day with the company.

And I’m thinking to myself, “See– even on your last day, you’re not part of this group. No one cares about you. You’ve seen how they treat their friends. You are an outsider and you always will be.”

My heart rate is 150/beats per minute. I’m starting to cry. I email my supervisor (although I know what needs to be done, and I will do it, but I want their to be a record, even if fleeting and electronic, a written record of the things that have happened to be because I have a disability).

I walk back to a process lead, and I said, while trying not to hyperventilate or scream or cry, “I know you probably think you’re being nice, and helpful, by not making me move, but do you have any idea how it feels to be isolated and on display on my last day here? I don’t care if it’s high or low, on the left or on the right, please find me a new table. Any table. With the group.”

And I told them– because now a group had assembled– that I would be back after I went to the restroom to collect myself.

I was told to pick any table available, and I said I would grab the first one I saw. And I did.

And that’s where I was when the boss walked up less than an hour later to say goodbye and said she hoped I felt better about everything about talking with everyone throughout the week. And I said no, I felt worse and I just wanted this day to be over. And that I didn’t blame any people, but that as we all know, every company has room for improvement and this is an area where changes should be made and I had hoped to advocate for that change. But I failed.

Or perhaps more accurately, I ran out of time.

This is why more people don’t speak up and advocate for themselves, because it’s hard. And it drains you more than you think. I only did it, at first, because my employers made changes that made me fear I would lose my job if I didn’t.

But I lost my job anyway.

Let’s return to the story about departure. Most people VTOed (accepted the voluntary time off without paid) except for those of us who knew this was our last paycheck and we needed every dime. And when we left– there were no supervisors, no leads, no managers. There was no fanfare. They just let us walk out the door.

Because the critical mass had left the week before.

And we were just a handful of random people that didn’t matter.

More unintended advocacy and nursing a bruised soul

Angel Ackerman Leave a comment

Three more days.

Three more days and Mercury comes out of retrograde.

Three more days and my tenure at the Stitch Fix Bizzy Hizzy comes to an end.

I had a job interview yesterday that led to a second interview Monday.

And yesterday was the two year anniversary of Parisian Phoenix Publishing, and I found out yesterday that Parisian Phoenix did not make it to the finalist round of the Innovative Voices program of the Independent Book Publisher’s Association.

What do all these things– well, everything but the whole Mercury retrograde thing– have in common?

Me. Still talking about disability.

I’m struggling. Change happens. I get that. But I just feel like everything I’m trying to do becomes a pile of various obstacles, so am I on the wrong path? All summer I felt like maybe I was finally headed toward new beginnings and small successes, but now I have my doubts.

And even things that should be success feel like delayed failure.

I’ve gone over the finalist list for the IBPA Innovative Voices program twice now, and I asked The Teenager to take a look. And she confirmed what I thought. Every finalist is a person of color/BIPOC or representing the gay/LGTBQIA+ community. Not a single disability voice among them. And then the teenager said it, “Well, Mom, color and sexuality are how most places do their DEI.”

It has taken me 40 years to accept and embrace my disability, and now that I have not only accepted it but worked to be a voice of advocacy, I open myself up to a whole new level of hurt.

Which brings me to work today.

Monday my table got moved. Today it moved again. But surprise, surprise, I liked today’s table (even though the air was stale and hot). And then… it happened. Because I was on a different line, I had different support people. And the support person on my line did a very sloppy job of presenting my work. Meanwhile, on the other line, a different support person presented someone else with similar medical accommodations a cart that was tidy.

It might sound petty. But because the company allows each individual to work such situations out with their peers, this leads me to feel like the person who brought me my cart resents having to help me.

And so I went to my supervisor. And I reminded him that all I wanted was to be treated the same. This other person has a temporary (and technically voluntary) disability that has lasted about six weeks. I have been dealing with this for more than a year. I have been disabled and will be disabled my whole life. The person with the temporary disability gets fawned over by her peers– including one peer who literally marches up and down the aisle telling all of us to help her.

So today, she gets the work from the bottom of her cart placed into boxes with pack slips placed neatly on top, and I get my work thrown on top of the boxes which are placed on their side on the top of the cart in a great big heap.

And once again, I ask my supervisor to help me find out if Stitch Fix has a policy in place to promote consistency between disability and medical accommodations. He promises me a chat later.

I go back to my table. A lead brings my next cart, and she doesn’t address my accommodations at all.

When the outbound manager walks by, I mention this to her.

And in the afternoon, I sit down with my supervisor and a manager and we discuss again:

  • how my accommodations have been inconsistent and I don’t receive communication about how or if they will change.
  • how other people with what appears to be similar accommodations receive “better” or “more” attention than I do.
  • how too many people are given the power to make decisions about how their peers will be treated
  • how disability is an issue for any workforce, whether a person has a disability, ages into a disability or has a temporary disability.
  • how Stitch Fix’s approach to inclusion for disability (and their ‘communities’ to support such efforts) focus on mental health and neurodivergence
  • how Stitch Fix has made it difficult for me as a person with a permanent disability, especially since I was moved from the job I was hired to do and they changed how our job performance was measured.

Tomorrow I am sitting down with the health and safety manager for our facility, as he will be moving to the Phizzy in Phoenix. Whether you call it favoritism or discrimination, my experiences have been frustrating. The company maintains that medical accommodations are extremely personal, cannot be policed by leadership, and rely on relationships between peers which assume people will do the right thing.

So, what if they don’t?

I have been working with the same people for more than a year. They know. And I feel like this work-it-out-amongst-yourselves approach has led to people claiming medical accommodations when they don’t actually have then.

A day with the firecracker (some fun at the warehouse, and a trip to the doctor)

Angel Ackerman Leave a comment

Work

I came into work today feeling my oats for some reason. I don’t even know why, but I quickly got sassy and playful. I started my day with strong numbers– but immediately I noticed one of my peers running support kept coming into my valley to give her friend work, when she wasn’t really in charge of our valley.

And the work she was bringing her friend was the easy work, the work I’m supposed to have access too and this support person didn’t share any with me. Just took it all to her friend– who has no reason to need the work that requires less bending.

I look around and I see other who have been given the same accommodation I have, but mine have not been adjusted for the day. And I don’t think the person I saw with three carts adapted has official medical paperwork. Yet, I had to trade work with a neighbor because my work did not meet my documented needs.

So I mentioned to my supervisor, maybe we could sit down with P&C (People and Culture, Stitch Fix’s HR department) to offer some final insight that the company does not seem to have appropriate, consistent policies in place to meet workers’ needs when it comes to reasonable, official ADA protected accommodations.

Not even thirty minutes later, the person who brought preferential work to her friend (who is the same person who messed up my fix last month if you were here for that saga) brought another cart of that work to my neighbor, I can’t recall if she has a name in this blog, so I’ll just call her my neighbor and fan (as she is reading my Fashion and Fiends novel series. Please buy books. I am losing my job after all.) My neighbor gave her the nastiest glare, and she walked off the floor and went to someone to complain. Then, she gave me the work.

The person who brought it to her apologized, and my neighbor explained to her very politely that I have documented medical issues. She said she didn’t know, but that’s malarkey because she told me to my face that she would only give me the work when she was certain she had enough for everyone else.

So she knows better, because she was admonished before. Even my neighbor mentioned that is really is ridiculous that every day I have to advocate for myself. And they had a really good system in place in the beginning, but too many people complained that they didn’t think it was fair.

But on the happy side, we had a popcorn chicken luncheon and left work at noon so that gave me a chance to rest before my physical and keep editing Road Trip, the fourth full novel of Fashion and Fiends.

Medical

When I arrived at my primary care physician’s office, half the office had lost power. Mercury is indeed in retrograde. I have lost four pounds recently. My blood pressure is good. I had no new complaints and I thanked the team for being so diligent and willing to listen to me throughout the craziness of 2023.

And to think– salt may have been the culprit all along.

My primary care physician read my neurologist’s notes and called her “smart” and “good” and liked her assessments and her approach to my care. So I mentioned to him that I have two questions I ask every new doctor.

  1. What do you see when you examine me?
  2. If I add you to my team, when should I call you?

This allows me to digest their observations and learn from them and know exactly which doctor to call and under what circumstances.

Then my doctor and I discussed medications, and I confirmed that I’ve felt great since weaning off my SSRI and that my new cardiologist and I agree that once I get through this job loss and transition into whatever else is next we will probably discontinue the beta blocker.

It’s always a good idea, he said, to minimize one’s medications.

I mentioned that I just didn’t think it would be a good idea to have an SSRI, a muscle relaxer and a beta blocker in my system. That’s why when he called and told me to stop the SSRI, I had already been lowering my dose.

I added to the conversation that I knew I had a responsibility to do what I could to solve the problem, because the medical establishment would eventually start throwing more pills at me if I didn’t improve. And that that is not a criticism of doctors, but an admission that I felt something was off so if I did everything I could do to give the doctors more clues, it would hopefully lead to answers.

He paused for a minute, and agreed with me, and basically thanked me for taking responsibility for myself and my health.

The Gym

Today, Andrew tried to cripple me with a leg workout. I can feel him challenging my range of motion and I love it. I did manage to deadlift about 120 lbs.

Everything Wrong with America

Angel Ackerman Leave a comment

I miss my more carefree days– which didn’t seem carefree, until now, when I have several appointments after each 8-hour workday in the warehouse, health issues to sort, a job hunt and debt to pay. Life is never simple or easy for most of us, but 2023 has, for me, felt like eternal optimism and hope while being bludgeoned. I get my proverbial sh*t together, and something outside of my control decides to parachute into my life.

When Stitch Fix announced closing the Bizzy Hizzy, they scheduled all sorts of guests and workshops for us as displaced employees. My separation date is September 15, so I have four more weeks, or two more paychecks, depending how you look at it. One of the workshops Stitch Fix hosted, and paid us to attend, was a visit from the state “Rapid Response” team to explain how unemployment and career services from the state work. They handed us a booklet that told us how to survive our layoff. (Surviving a Layoff: Your Guide to a Soft Landing and a Smooth Re-entry by Harry Dahlstrom. Mr. Dahlstrom, I’m sure you’re a very intelligent and likable person, but your advice is written for middle class Americans with two cars and their own house.)

“Remember that emergency fund with three-months pay stashed away…” Oh, Mr. Dahlstrom. Do you not have a child going to college this fall? Or medical debt? Or a used car that needs constant repairs? Or a teenager whose car insurance costs $500/month because of an accident? That’s just me. Others might have a disabled or unemployed spouse, student loans, bad credit that led to predatory loans for everyday items… or maybe they just recently got this job and had been using their credit cards to survive.

“Reduce your thermostat to 68 degrees.” Oh, Mr. Dahlstrom, mine has been at 64 for two decades.

“Trim your entertainment.” I don’t have cable. I don’t have any streaming services (though the Teenager has Spotify, which she pays for, and she also bought HBO Max and made for the year upfront.) I don’t even have home internet, relying on my phone’s hotspot and public connections. I think the last time I went to a movie was two years ago.

“Prepare a weekly menu” and “put back 10 percent of the things in your [grocery] basket.” Oh, Mr. Dahlstrom. I spend $250 on groceries for myself each month, that does not include the Teenager as she buys her own groceries. And I do get coffee or a donut out, which adds up to about $25 a month, which I consider reasonable as, as you mention, I search for discounts.

Other advice includes: “collect old debts,” “turn unwanted things into cash,” “change your lifestyle,” and “bring in the paying customers” using a talent or skill. Because my half-a-double home that I pay about $900/month for is full of useful items? I haven’t even had a vacation in about five years. And my talent? It brings in about $150/month on a good month.

“Unload the family jewels.” Mr. Dahlstrom, I’m so frugal I wouldn’t even let my husband buy me a diamond for my engagement ring. When we got married, we used Irish claddaghs so all I had to do was switch it to the other hand. I don’t own a single piece of jewelry or any item worth anything. My car is a 2015, my computer is a mid-range model, even my Brooks Brothers suit is 15 years old at this point.

But this is what’s wrong with our country. As a society, we assume everyone “poor” or experiencing financial trouble or unemployment is in that situation because they are irresponsible, stupid or did something wrong. And sometimes that poverty or situational bad luck is due to society’s expectations.

For example, starting with my generation (the GenXers) we insisted that our kids go to college and saddled them with loans to do it. Then, we flooded the market with bachelor’s degrees, which rendered them meaningless, and started pumping up the value of master’s degrees. For those of us associated with the arts or wishing to pursue an academic trajectory, a Ph.D. is now required and some perfectly talented individuals with MFAs are now trapped in a life of eternal adjunct status.

And the poor Millennials also fell victim to this higher education fiasco except the cost has skyrocketed and these poor kids are starting their lives with student loan payments that rival my mortgage and they can’t land a job with a living wage so they work in warehouses with the same people who skipped the education in the first place.

Now, add to that the way the medical system works. In my opinion, and this is just my opinion, more people than ever need some sort of medical support in their life. Whether it be disability, illness, mental health struggles or maintenance medication, it seems like more people than ever spend a ridiculous amount of their income on healthcare.

I have been extremely fortunate that my mathematical brain allowed me to calculate costs and I determined that the free to me high deductible health plan, when you included the employer contribution to my health savings account and a $50 contribution from me to that same HSA each paycheck, paid for most of my medical costs this year (except for my mental health therapist, who for some reason, the medical insurance company likes to pretend doesn’t exist. They just won’t communicate with him or pay him).

Now, before I continue on this rant, I don’t understand why healthcare in this country is primarily connected to employers and employment. Why is it an employer’s responsibility to provide access to healthcare? Eliminating this ridiculous practice might be a good first step to getting healthcare under control. If you meet certain criteria, you can qualify for government-sponsored insurance, which also dictates the level of care you receive, and the open marketplace for healthcare is expensive.

I just don’t understand why everyone isn’t pushed to the open marketplace OR why everyone can’t qualify for government insurance. If everyone went to the open marketplace and insurance companies had to compete for individuals instead of corporations perhaps the access to care would change. In other words– even a company like Stitch Fix– has thousands of employees. If insurance company had to court those individuals and families, they would have to work a lot harder to court them versus convincing one corporation to allow them to insure a large group of individuals.

I missed a month of wages after my hospitalization, which due to the one week waiting period, even with my employer-sponsored short term disability insurance, only provided three weeks of wages at less than 67% of my normal wage, and on top of that the company administering those payments misplaced my paperwork which meant I had to repeating submit paperwork and did not get the last week of those wages until one full month after I returned to work. And my doctor had to submit three sets of paperwork. Which, technically, costs $25 a form for the doctor to submit.

And because I have a congenital and permanent mobility disability, I always need physical therapy. But physical therapy sessions cost hundreds of dollars and insurance companies limit access to them. So I hired a personal trainer and pay him $25 a session (which bless him, he has now reduced his rate to contribute toward my fund to pay for my service dog which is another $5,000) and I bet Mr. Dahlstrom would say I should eliminate that from my budget as an extraneous expense.

But Mr. Dahlstrom, I imagine, does not live with a disability and has probably never experience what it’s like to have a leg that just suddenly stops working or a hip that feels like it’s waving to people from my butt. And since my muscles and my brain literally cannot communicate, I have to physically show them what to do so that movement is reduced to muscle memory and does not have to include the brain.

In closing, I’m going to end this long and winding blog post with a celebration that also highlights everything wrong with America. My friend Southern Candy from Stitch Fix turned 65 yesterday and she asked to go to Shady Maple Smorgasbord. That place was SO BIG, I think my whole d*mn town could have dined together. They had so much food and so many cooking stations I think we could have fed a village from a developing nation for a week.

The staff was amazing. The food was quite good. The gift shop was enormous. And in general, it looked like people were only taking what they could eat. But we all ate too much. I had three dinners and two desserts and spend several hours thinking I might vomit. The cajun catfish and the carrot souffle were my favorite. And I really wanted to punch an old man in the face because as I was reaching for the last piece of coconut custard pie, he snatched it away from me.

And the reality of how much food, how many steaks, how many excess calories we were all consuming filled me with such guilt and shame. Our culture, and you can disagree with me, is so centered on gluttony and selfishness. So while I was happy to spend time with my friend, and take a road trip with her, and laugh with her– I have to ask: how can such a place exist? I’m sure the intent, because Shady Maple started decades ago, was to provide a place where people could dine and have a wide variety of choice and not have to chose, or for families to dine together while pleasing difficult eaters. But this was insane.