The $50 grocery challenge (and the first round of ‘separation’ from the Bizzy Hizzy)

So, once again, I find myself uncertain of what nicknames I have given my friends at the Stitch Fix Bizzy Hizzy. My neighbor took off today, and Southern Candy (today was her last day) went to breakfast with her department when they released us at 9:30 a.m. Yes, we worked three hours today. I brought my friend, we’ll call her Gong-Obsessed, home and headed to Grocery Outlet and The Dollar Tree to buy what Groceries I could with the $55 cash I had in my wallet.

The men’s QC department is moving to our end of the warehouse on Monday and they are taking line 1, so I will be leaving my table. I’ve been at this table, 18, for about nine months now.

Farewell, 18.

After babbling about book production to Gong-Obsessed, I headed to Grocery Outlet where I spent too much of my budget on the Teenager. I am such a mom. She has an ear infection and drippy sinuses so I bought some things to make her life more pleasant.

I totally forgot to look for my Cabot cottage cheese– which was the whole reason I went to Grocery Outlet. Cottage cheese provides a low calorie, high protein, sodium rich food which is convenient for me.

One of my strategies for economic hard times is to use cash only for grocery shopping. Pay your bills and whatever is left (after gas) is for groceries. Since I got paid today, and only have one more pay check and no future full-time work lined up, I limited myself to my cash in my wallet because whatever is in the bank is now for bills and bills only.

Once I get to the store, I buy what’s cheap and versatile. I don’t necessarily meal plan as much as organize themes. Rice can be a base carb for just about anything. That same rice with a pile of beans and a small can of chili can now stretch to feed a family. English muffins can be the base for a sandwich, or a breakfast food, or with some creativity a hamburger bun or a pizza crust. Cheese can be a quick source of protein and calcium, and while peas usually aren’t anyone’s favorite veggie, they also add a touch of protein to meals, and can be tossed into rice dishes, casseroles, cheesy or alfredo pasta, or hot/cold salads.

What I did get at Grocery Outlet:

  • Honey Flavored Navy Beans, 0.99
  • Kosher Dill Pickle Spears, 1.49
  • Six Whole-Wheat English Muffins, 1.99
  • Almond Thins Sriracha Crackers, 0.99
  • Ortega Mojo Chile Lime Sauce, 1.49 (when you’re low on food, a cheap bottle of sauce can elevate a ‘struggle meal’ into something pleasurable. I’m getting ready for lean times here.)
  • Turkey Chili, two cans, 0.47 each
  • Zesta Saltines, 0.77 (can make soup more filling, serve as breadcrumbs if need be, and it’s been ages since I had butter-on-a-saltine as a snack, and with a sick kid at home, something is just soothing about saltines.)
  • Cabot Bac’n and Cheese Dog Biscuits, 2.50 (the dog couldn’t even focus on her sit-stay when I opened these.)
  • Cocoa Cinnamon Toast Crunch Cereal, 1.99 (The teenager loves Cinnamon Toast Crunch and Cocoa Pebbles– I had to see if this would be ‘the best of both worlds.’)
  • Bananas, five, .52/lb, .94
  • Fresh blackberries (pint), 1.99
  • ‘Nano’ Cucumbers (quart), .99
  • frozen avocado chunks, 5.99 (This was the most expensive item I bought, but it’s less expensive and less waste than buying fresh avocados. I put some in a bowl, maybe 3/4 to 1 cup, thaw them in the fridge and stir them into a paste for dip, for toast, or to flavor dishes. It disappears usually within 48 hours and a bag of frozen avocado has 3-4 batches in it.)
  • Boca Chicken Patty, 1.99 (Even if you’re not a vegetarian or even if you prefer not to use processed food, fifty cents a serving and it’s a protein you can toss in the freezer and add to just about any meal in a minute.)
  • Jimmy Dean Spinach Frittata Plant-Based Egg Sandwiches, 2.99. (I originally bought these for The Teenager, because she’s going through some medication AND routine changes AND financial changes so eating has been a struggle. For 75 cents a serving, she has an easy breakfast. But now that I see they are plant-based, I might take some to work for break next week.)
  • frozen peas, 1.19
  • Birds Eye ranch-flavored cauliflower, .99 (nutritionally not the strongest choice, but add some rice and some white beans and that ranch flavor could sass up a meal)
  • Hall’s cherry flavored cough drops, .50 AND
  • Nasal decongestant spray, 1.49 (both to help get the Teenager over the hump of her ear infection and sinus congestion)
  • Goya Dulce de Leche rice pudding, four servings, 0.99 (because the Teenager doesn’t feel well and she loves rice pudding)
  • Pillsbury buttermilk biscuits in a can, two cans, .50 each (like the English muffins these can go with any meal at any time of day and be reshaped into other dough if one finds themself in a pinch)
  • Sabra classic hummus, family size, .97
  • two percent milk, half gallon, 2.08
  • shredded sharp cheddar cheese, 8 ounces, 1.99
  • Taco Bell branded “fire” shredded cheese, 7 ounces, 1.99
  • Minute Maid Watermelon beverage, half gallon, 1.49

Total at Grocery Outlet: $42.68

Technically, this gave me $12 for the Dollar Tree. Now, with all that food, why did I have to go to the Dollar Tree? Because my comfort food, especially when I am sick, is Spaghettios, and apparently I have passed that along to my daughter, because she requested Spaghettios.

Since the Dollar Tree now costs $1.25 per item and sometimes their groceries ring up as taxable, and I don’t feel like arguing with cashiers today, I capped myself at 8 items. I had enough for nine, but wanted to be safe.

I purchased:

  • Spaghettios, two cans, one with Franks Red Hot for me and one with Chicken Meatballs for the Teenager
  • A pretty nice sized bag of white long grain rice
  • A can of black olives, whole
  • Schweppes ginger ale, 1 liter, because I have a child with a sore throat at home and she ripped it out of my hands as soon as she saw it.
  • Generic diet soda, 3 liters
  • Sonic freeze pops, again, for the sick child
  • Gnocchi, because the gnocchi from the dollar store is filling and has a decent amount of protein

Total: $10.15

I still have $2 in my wallet.

Mission accomplished.

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

Everything Wrong with America

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.

What makes today a good day might change tomorrow

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.

Feeling heard (and a week gone by)

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:

  1. Lack of salt might have initiated the symptoms which led to the falls in the first place.
  2. I might never have an incident of afib again.
  3. 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.

A dietician and some medical forms

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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.

Assessment for medical nutrition

WHAT THE DIETICIAN SAID

I had a meeting today with “medical nutrition services” at the local hospital to see if the dietician had any idea what I might be able to do to get myself on track via diet.

She recommended getting more sleep, and specifically 9 hours, which to me would mean going to bed at about 6:30 p.m.

And she applauds my effort to get off screens and read physical books before bed, but wants me to keep my bedroom dark and between 64-68 degrees. Which will mean using the air conditioner. And remembering to open the curtains for the cockatoo in the morning.

She requested that I cap my water intake at 64 ounces or so, based on the color of my urine because she’s afraid I’m flushing all the salts from my system.

She put me on a 1300 to 1500 calorie limit, and asked me to do more meal prep and meal planning as is my custom, but also to eat breakfast within an hour of waking up. Which, because I have so little wits and already have a busy routine, requires meal prepping breakfast in addition to lunch.

As for dietary guidelines, she wants to see me track my food and eat as “normal” as possible, not worrying about sugar and salt per se.

And I need to find a healthy outlet for stress.

Don’t we all.

FOOD DIARY

  • 4:30 a.m: morning meds, 12 ounces water, half a cup of my favorite peppermint accented medium roast coffee with half and half
  • 5:15 a.m.: about 8 ounces water with Electrolyte Powder Plus in raspberry
  • 6:15 a.m. one serving of pretzels and 3/4 of a serving of JIF peanut butter.
  • 8:30 a.m.: one serving Cabot cottage cheese, one golden kiwi, probably one serving “corn bake” and 20 ounces water.
  • 12:30 p.m.: 16 ounces water, Baclofen and one slice pesto pizza
  • 3:30 p.m.: repeat of this morning’s coffee and a Kind Breakfast Bar
  • 4:30 p.m.: about 16 ounces of electrolyte water at the gym
  • 6 p.m.: finally had my Hungryroot schnitzel– a thick pork chop coated with the dry batter of Hungryroot’s ancient grain pancake mix and “hot potato salad” of creamer potatoes, parsley, and balsamic vinegar. I was very very pleased with the texture of the pancake coating.

Weight: 160, Sleep: 7 restless hours, Morning blood pressure: 120/76 (it’s normally around 110/65 at first check), Equilibrium: day 8 of ears ringing, slight headache and lightheaded

Heart rate about 100 bpm while standing at station, folded 100 fixes (100+%)

Socks: T-Rex drinking coffee

Hopefully my next blog entry, I can tell you more about my TedX interview.

Today The Teenager and her uncle built a cat tunnel

As the threat of rain descends upon on, the Ackerman household has an announcement:

The Teenager and her uncle built our indoor cats a cat tunnel to the outdoor cat cage.

My food dairy

8 p.m. last night: about 15 ounces water that kept me up peeing until almost 1 a.m.
6:30 a.m.: tried to brew 26 ounces of Supercoffee with about 1 tablespoon of cacao with maca powder. Think I brewed the coffee super strong. Served with half and half
8:15 a.m. poured second cup of coffee, realized I hadn’t had any water yet, poured 12 ounces.
9 a.m. ordered an iced tea for my daughter and “had to try” the new 200 calorie coconut macaroon iced coffee at dunking (but I got decaf) and the new chicken and roasted pepper wrap.
9:15 another 8 ounces of water; dunkin arrives, coffee made with coconut milk. It’s too sweet it’s going in the fridge.
12:20 15 ounces unsweetened earl grey iced tea
3 p.m. trying to drink the decaf coffee from dunkin (finished it)– two everything bagel tortilla, avocado, roasted pepper and kale, vegan meat slices and nutritional yeast.

5 p.m. we went to Dairy Queen for an ice cream cake for the Teenager’s birthday. We got it through the drive through — and they didn’t have eight inch so we got a discounted 10 inch Oreo Blizzard Cake.

Imagine our surprise when we arrived home and the dog— whom we had not crated— had let herself (and two of the cats) into the backyard.

I think I’ve eaten two thousand calories of ice cream cake— and I gotta say I’m impressed. DQ makes really good ice cream cakes.

Friday food and health

This will be a shorter blog entry to record my health update. And my food diary. I hope to follow it up with a real essay. On being prepared for the unexpected side of advocating for yourself when it comes to your needs and your disability.

I woke up even more lightheaded today and by 9 a.m. I felt like I might either fall over or faint, so I took my intermittent medical leave and clocked out at 9:14 a.m. When I got home, I took a one hour nap, after which I could at least hold my head up without swaying. My heart rate was experiencing some highs and lows– highs of 130, lows of 44, within a short range. My blood pressure was111/67.

Food “today”:

  • 7:30 p.m. yesterday: after not having dinner last night, I watched an old episode from season 2 of Rescue 9-1-1 and ate about 2.5 servings of Sahale Asian Sesame Edamame Bean & Nut Mix– with around 15% of your RDA in sodium and 6 grams of protein per serving.
  • 4:30 a.m. Don’t judge me, but this morning I had about 10 ounces of water and a Coke Zero for breakfast. Despite having almost 8 hours sleep, I could still barely get myself out the door.
  • 8:30 a.m. I was hoping food would help me feel better. I had grabbed the Brekki oats again as I ran out the door, but today they didn’t have my Greek yogurt in the breakroom so I grabbed a serving of JIF peanut butter to fatten up my dairy-free, gluten-free, vegan and goodness knows what other trend oats.
  • 12:30 p.m. After my nap, I reheated my leftover pasta with jarred red sauce, a tad of mozzarella, and some tiny pieces of meatloaf for meatballs. My water level for the day, besides the 10 ounces this morning, is an additional 24 ounces.
  • 1 p.m. peppermint coffee with half and half.

Done.

It’s hard to watch the work ethic of some people fall apart as we face the closing of our warehouse. I only got six hours sleep last night, despite going to bed at a decent hour, and my heart rate rarely got below 90 today. And I keep facing less equilibrium. I can’t spell anymore. I can’t think.

And I have one more ten-hour shift tomorrow and a four-hour overtime shift on Saturday.

This post will be riddled with errors and I’m not going to tell you the details of how much yuckier my day went once I got home. But I will tell you I forgot to take my evening medication and I’m not going downstairs to get it.

I sent a message to my doctor yesterday asking if I could go through the medical nutrition program– and he referred me. I’ll be going Monday.

I really wanted Hungryroot’s pork snitzel(sp) for dinner but the teenager used up all the Ziploc bags and it’s a shake-and-bake type recipe and I need a bag.

And as soon as I write down my food intake for the day, I’m going to cry myself to sleep.

What I ate today:

  • 4 a.m.: Supercoffee brewed with organic cacao and served with half and half. I took some to work but only drank about 16 ounces total and forgot it in the breakroom when I left for the day.
  • 5:15 a.m.: water and homemade cheesecake.
  • 8:30 a.m.: about 24 ounces in on water intake for the day. Brekki overnight oats, which were sweet, syrupy and wet so I added plain Greek yogurt.
  • 11:30 a.m.: about 16 ounces more of water. One slice rye bread, creamy miso (about one teaspoon) and my mother-in-law’s meatloaf. Some Wallaby candies. But only about 1/2 a serving or so.
  • 1:30 p.m.: golden kiwi. By the end of the shift, I had another 8 ounces water.
  • 4 p.m.: about 12 ounces electrolyte water with a hint of cucumber and honey roasted pistachios.

This was supposed to be dinner, but I put it back in the fridge.