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

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

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

She’s coming home from the hospital later today.

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

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

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

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

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

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

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

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

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

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

The highs and lows of 24 hours

I write. It’s what I do. I got a random text last night from a colleague of a friend who I think would mesh with me on a personal level. We’re scheduled to have lunch on Monday. She texted last night– she’s a fellow journalist– hoping I could review her application for a special project. Let’s just call it a grant.

I needed that last night. I received a text from her this morning. She’s never requested my professional skills before, and I didn’t really think about that before I agreed to help her. I just heard, “I need someone to look at my thoughts.” And the former managing editor/grant writer in me just kicked in. She was on a tight deadline, and I was close to bedtime. But I did what I could.

Her text this morning said, “Holy shit. You’re good.”

But let me back up… and let me tell you why I’m struggling to digest the 24-hours of my life that started with 3:30 p.m. on Valentine’s Day and ended after work yesterday.


Happy Valentine’s Day, The Teen!

So, The Teenager considers the hamburger chain Fuddruckers one of her favorite restaurants in the world. Which is funny when you consider her favorite, favorite restaurant in the world is Kachapuri in Moscow. And mine, too.

We had a Fuddruckers a few blocks from her grandparents house for a couple years when she was in preschool. Her connection to this place goes back that far.

They closed it when she was about four. The two closest Fuddruckers now are in Hershey (1.5 hours away) and in New Jersey (1 hour away). We drove by the exit for the Hershey Fuddruckers during our service dog appointment Monday. But I wasn’t hungry, and at this point I can confirm that poor diet spikes my blood pressure.

Somehow, we negotiated a trip to Fuddruckers in New Jersey for Valentine’s Day. But a wrinkle came to the plan when her car’s service appointment took longer than anticipated, and more money than anticipated. But we decided to go anyway. Because at this point, the poor kid is miserable. She got nailed with owing federal income tax, her car insurance has doubled and her car is an enormous money pit that might be a ticking time bomb. Really, the transmission might be next. But we’re working on manifesting luck and joy. Hamburgers, it is!

I locked up the house and I discover an envelope in the incoming mail. The design of the envelope itself ruins the surprise of what’s inside. These kids today, they have all the tension stripped from their lives.

Now, our trip to Fuddruckers was officially a celebration.

And this Fuddruckers, according to the Teenager, is way better than the Hershey Fuddruckers. We’re apparently connoisseurs now.

Note to self: my bacon bacon jamburger was amazing.

Conversations in the car got a little heavy as conversations in the car normally do, and I went to bed missing my family. But that’s another feeling for another day.

Wednesday, February 15

I performed well at work on Tuesday. Perhaps too well, at 132 fixes. My official observation was nearly 107%. I felt the warning creaks in my body Tuesday night that maybe all the car rides and the full day at work might have stressed my lower extremities.

This story takes a turn, and could have ended in tragedy, but it didn’t. But it’s a lot of emotion and a friend nearly lost their life. So if that doesn’t appeal to you, stop reading.

There’s a crew of us at work. We all used to work second shift together. Then we moved to the 10-hour Sunday cohort, Then we moved to day shift. When they rearranged to break schedule to make larger lunches, we gravitated together. And I’d like to believe we have a bond.

One of us went to the hospital Superbowl Sunday with chest pains. This person has a history of past heart attack. And the hospital, from what we understand, tested for hernia, gall bladder and gave an EKG but never did cardiac enzymes. They sent our friend home. This person has been in intense chest pain on and off since Sunday. This person forces themselves to come to work on Wednesday, because we all need to work. We’re not living lives of leisure and passive income.

We’re sitting at our normal morning gathering spot in the breakroom, and we had seen the car of the person in question, but this person had not arrived in the breakroom. We figured this person needed to talk to supervisors. Makes sense.

I receive a text. “Are you at work? If so come to my car.”

I do.

My friend was sitting in the car, tears streaming, clutching at the chest, stating there was pain in the arm. My friend was about to throw up from the pain. Apparently, my friend planned to drive to another hospital after a supervisor offered to call an ambulance. We went into the building, where my friend went into the bathroom. Another colleague had to escort her out of the restroom.

This is when another friend declared that an ambulance had to come and told our supervisors to call. And our security head monitored vital signs.

Our most confident and bossy colleague went to the hospital and we’re told she kept the staff on their toes.

Our friend had a heart attack in front of us.

Our friend received the care needed, but THREE DAYS after first going to the ER.

THREE DAYS.

I’m angry at the system. And I feel guilty for not pushing harder for better care sooner.

But right now, we’re all solemn and grateful that we didn’t lose a friend.

ADVOCATE for yourself and your loved ones.

The Canine Therapeutic Evaluation (with Katydid) for a mobility service dog

The Teenager and I left for a bizarre mini-round trip down to the atrium outside the Bass Pro Shop at the dying Harrisburg Mall. I say dying, because the folks at Susquehanna Service Dogs reported that they will soon have to find a new spot to do their evaluations as the mall will soon be razed, except for the Bass Pro Shop.

The mall provides an open but indoor public environment for service dog trainers, handlers and dogs themselves to work with people who may wish to pursue a service dog. These dogs are commitments, and the idea of navigating in the world with a large dog can be overwhelming.Therefore, it’s logical to let people considering a dog the opportunity to see how it feels, in public, to work with a dog.

I had to bring a support person with me today, and that was The Teenager. I worked with the trainer and the dog, Katydid, the same dog I worked with at my in-person interview in late November. The Teenager walked behind with the case manager, who asked questions about what I could use in a service animal and filmed my interactions with the dog.

I thought my right leg was being obstinate, it felt stiff and rickety. The Teenager reported that the right leg looked great, even faced the correct direction, whereas my left leg “looked like a worm on a string.”

Everyone had a great time, and I walked about 4,000 steps with my friend, Katydid, exploring the different between leash walking, strap walking and a hard harness. The hard harness makes it really easy to feel my place in the physical space and match the dog’s gait with more confidence than with the leash or the strap, but it may also be just as good to have a thicker, sturdier strap on the dog that could give the same feel as the harness and be easier for the dog to wear. And I bet over time, as the dog team works together, both the dog and the handler develop a rhythm.

The dog can be trained to counterbalance, to retrieve things, to find help, to empty the dryer, to bring your phone, to help you up, etc. Your dog can learn where your first aid kit is and to bring it when you fall and need to clean your wounds. It’s truly amazing to see these animals excitingly perform tasks, especially these ambassador dogs who will gladly work with anyone who has treats.

The Teenager and I made an adventure out of the day– stopping at Sheetz for drinks, where we discovered this Sheetz had an entire aisle of slushy machines. We loaded up on slushy and sodas, ranging from cherry Coke Zero to Mango Pepsi to Cheerwine.

The mall itself also fascinated The Teenager, with its taxidermy animals and its creepy trees in the Enchanted Forest children’s area. The creepy tree looked eerily similar to the one in The Teenager’s bedroom.

We also visited 2nd and Charles where she read The Unofficial SIMS cookbook and had to buy a new floormat for the porch, a Dungeon and Dragons mat that reads, “Roll for Initiative.” She is her father’s child.

And then on the way home we stopped at Cracker Barrel, because that’s just the tradition when this family goes on any sort of road trip. I think we had the sweetest waitress ever. And The Teenager picked out a gigantic jawbreaker and a roll of Bubble Tape bubble gum that came with a label maker emoji toy. And I picked out the butterscotch peanut butter cups which I shared with The Teen in the car.

And so the weekend comes to a close… with pancakes & taxes & newsletters

I’m exhausted.

I started today with pancakes I requested from the Teenager because she said she had to use up this homemade fruit filling she made for a pie, and it did not set. The pancakes were so damn good I ate at least a dozen.

Then, as we struggled with a carb coma, The Teenager and I tackled our taxes. We both finished federal and state, but I couldn’t efile state because of my schedule C for the business. We both ran out of steam and will file local later. I am getting a federal refund, which I hope will allow me to offset the increase in the Teen driver’s insurance premiums.

And I’m out of half and half– so before my canine therapeutic evaluation tomorrow there will be no coffee at home. This is not the best way to start a Monday. But the service dogs should offset that.

If you really want to see the weekend decline of my eating habits…

What I ate Saturday:

  • 5:30 a.m., two cups Friendly’s Mint Chocolate Chip coffee, with half and half
  • 9 a.m., breakfast, Ozery multigrain sandwich thin with Ithaca garlic hummus and Cabon harissa
  • 1 p.m., “lunch,” two slices ring bologna, two almond chips, and a handful of key lime gluten free granola
  • 2 p.m., editing fuel, Coke Zero and two bags of australian licorice, about 6 servings? or more?
  • 7 p.m., dinner, an enormous homemade quesadilla with mounds of cheese, chicken and beans, Coke Zero with tequila
  • 8 p.m., mini banana flavored moon pie

(and about 60 ounces of water)

What I ate today:

  • 5:30 a.m. Supercoffee with half and half from little aseptic containers
  • 10 a.m., breakfast, a dozen homemade pancakes with homemade mixed berry syrup
  • 3 p.m. cold brew from Dunkin
  • 6:30 p.m., I hope to have cottage cheese, raisins and gluten free granola for dinner

(and about 48 ounces water)

To read the original post and see the new newsletter…

Finally— the relaunch of the newsletter

Return to the gym and other small successes after a week where cerebral palsy gave me hell

It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.

I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Cream flavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.

The importance of exercise when you have a disability

Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.

(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)

Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.

That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.

And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.

These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)

In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.

Mundane things like food and mail order packages

Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.

screenshot from Goodreads

Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…

I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.

To bring things back around to happier things… and more references to Parisian Phoenix Publishing… (Please buy books!!!)

I prepared a special mail order package with a signed copy of The Death of Big Butch. I will be headed to the post office today.

What I ate Friday:

  • 4:30 a.m., one cup Friendly’s Peppermint Stick coffee, with half and half
  • 5 a.m., first breakfast, honey nut Chex with Silk protein cashew-almond non-dairy milk
  • 8:30 a.m., second breakfast, salted and roasted pistachios, mango jerky from Solely
  • 11:30 a.m., lunch, vegan tofu spring rolls and cabbage, diet Pepsi
  • 3 p.m., snack, iced coffee with half and half and cinnamon a very berry oatmeal cookie from Panera
  • 7 p.m., dinner, black bean and sheep cheese lasagne with cheddar and mole sauce on green lentil noodles and plantain chips
  • 8 p.m., tequila shooter with pink Himalayan sea salt and a slice of lemon

(and about 60 ounces of water)

I struggled to put my underwear on, but I hit metrics at work

Today I felt stiff, and a little achy, but I felt myself, and I hit the metrics at work. I’m heading back to the gym tomorrow.

  • I soooooo wanted to stop for a cold brew from Dunkin after work to celebrate making my numbers. But I didn’t.
  • I’m more or less down five pounds.
  • My blood pressure is much more normal now.
  • I finally got a good night’s sleep.
  • I still can’t really bend, so there’s no easy way to retrieve stuff from the floor, put on my socks and shoes, or slap on my underwear.
  • The next novel in the Fashion and Fiends series is at 40,000 words.
  • I had my second visit with a coach from Modern Health today. She’s adorable, and I have six more free sessions for the year. She saw Nala and fell in love with my naughty-feathered brat.
  • I am swimming in things that need to be done for Parisian Phoenix.
  • The rescheduled service dog canine therapeutic evaluation is Monday.
  • I have been taking my vitamins.

What I ate today:

  • 4:30 a.m., one cup Supercoffee, dark roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter, mango jerky from Solely
  • 8:30 a.m., second breakfast, Quest protein bar, birthday cake flavor, 3-4 ounces cranberry juice cocktail
  • 11:30 a.m., lunch, stuffed pepper soup, diet Pepsi, one peppermint Hershey kiss
  • 1:30 p.m., Hippeas chickpea vegan cheese snacks
  • 4 p.m., Coke Zero
  • 6 p.m., dinner, sprouted flatbread airfried chips with paprika, sprouted hot dog bun with half a chicken burger, dip made with various leftovers: chicken, brie, cheddar, kale, diced carrots, Buffalo cauliflower “rice”

(and about 36 ounces of water, working on 12 more ounces as I write this)

How long do I push and how hard do I fight? Questions I have to ask as a warehouse worker with cerebral palsy

The animals are all eating dinner. The Teenager has gone to care for her last client of the day. I am emotionally wiped out from all the events of the day, or the week, or maybe the last couple weeks. My friend from work, a beautiful and sassy Puerto Rican woman whom we shall call Spicy (because of her outspoken Aries nature and her abundance of passion), told me I should go home and drink some tequila.

I’m still waiting for initial contact from the insurance company of the person who hit me Friday night after work. Unfortunately, I did hear from my insurance company about my six-month-bill due next month. It doubled in cost to more than $3,000. I’m just flabbergasted.

I always have a lot on my mind and a lot of responsibility on my shoulders, and I know with my volunteer work, I put a lot of the pressure on myself by saying yes to things.

I visited my chiropractor after work, actually having left early because someone else must have booked my 3:45 appointment. She believes my current issues probably stemmed from the change at work, and started with my back and then effected my hip.

Part of me wants to write this post and submit it to the online social media forum for people with disabilities, The Mighty, because I want a conversation, but I also don’t want to risk exposing myself to issues with my employer.

So, let’s see. Summary: I work in a warehouse folding clothes. I completely disclosed my disability to the person hiring me. This was more than two years ago. In the last year-ish, we’ve had our jobs changed, our shifts changed twice meaning we’ve worked three different schedules in that time, and a recent change (December 2022) in how they measure our performance.

But, you might think, how many ways are there to count how many clothes you fold in a day?

Well, when I was hired, they took the average of how many clothes you folded over the week. If the goal was 100 a day, then if you got 98, 100, 100, 102, 100 you passed the week without incident. I succeeded with this system. I might have several days at 102 or 103 and then a day at 95. And as long as you were consistently about 90 nobody cared. Realistically, my numbers were probably 90, 98, 100, 100, 105.

Now, we work in series of 20-day blocks, and we’re allowed to miss 100 twice in that block. They look at every day independently. I knew I could not reach that expectation. I asked my neurologist to fill out accommodations paperwork. My company has been fantastic working out accommodations for me– but what to do about the days I’m more crippled than usual?

To address this, I applied for intermittent FMLA leave. The company that administers it first granted me six hours every six months. So, I did a new set after talking with my examiner, and despite my listing weekly doctors’ appointments I got the equivalent of one day a month. And because I’ve been experiencing such issues lately, and with my almost cardiac scare last week, and my service dog appointments, I have no paid time off left. I will not have that time replenished for about a month.

That brings me to the present. So, even though I did 100, 100, 110 and 90 last week, I’m already one day down. Then they moved me to a different department Friday, and my body doesn’t handle change well.

Monday I did 86% while in complete discomfort and periodic intense pain. Yesterday I did 93% while in moderate pain. They wrote me up with a first warning today. Apparently each warning comes with a month of focus on an improvement plan, during which they lower expectations. I’m told I only have to hit 90%. Today I think I hit 95%. I can’t say exactly because I had an emergency preparedness training, a safety committee meeting, a sit-down with my boss so he could administer my warning and I left early for a doctor appointment.

When I signed the paperwork, I mentioned that my lack of performance is a direct result of issues stemming from my disability which may or may not have been caused by the change in my working conditions on Friday.

I’m trying to do everything right. But it’s damn hard and I’m damn tired.

Now… the questions I wish to ask and address do not relate specifically to my company or my boss. I think the situation I am facing mimics what we see in the medical industry as well. We no longer live in a society where doctors and bosses have the power to make individual decisions.

In the interest of fairness and preventing discrimination, we have blanket rubrics that determine how every person needs to be treated. My boss knows I work hard, and he knows I will come through in the long haul. His sidekick who interacts with us all on the floor has a disability himself.

And it’s not like I was hired last week. I was hired more than two years ago. And that person who took a chance on me? They got rid of her in well-publicized lay-offs.

Apparently, they have four rounds of warnings before you “separate.” But if I recover from this current cerebral palsy episode of malfunctioning body parts, hit my numbers, and then experience something similar in a couple months, do I get another first warning? Or does it progress to second? Do I care if they “separate” me? They changed the job I was hired to do into one I cannot do, and I can’t do it because of a disability they know I have.

This is when I also mentioned that I only intend to use that leave time for unexpected occurrences. That when appointments are scheduled I will continue to used my paid time, my unpaid time and voluntary time off when offered.

The advice I was given was to have new papers filled out (the third set in as many months) requesting a full week of time off every month. That implied to me that only answer is to call off when I have any sort of discomfort– because if I show up in the building and leave when I’ve already fallen behind that will count toward my misses. But I have no paid time left, and my official leave only covers one day a month.

And sometimes the motion of the day resets my misfiring muscles.

Part of me is done fighting. I love my job. I love the company. I do hate my current schedule. But I like the routine of it all, I like that it leaves my mind free for my own endeavors. If I did give up on striving to meet the standards, I wouldn’t quit. I would still give as much as I could until the end.

But I just keep asking: when do I give up? Will I ever reach the point where I can do my job without hurting myself and will they ever reach the point where they stop upending the process of what we do? I don’t know the answer.

In better news, our neighbor brought us a fresh fruit arrangement. Which the Teenager and I devoured.

In case I forget to say later (it’s only 5:30 p.m. and there will be tequila in my future):

My blood pressure has been damn near perfect.

What I ate today:

  • 4:30 a.m., one cup Suprcoffe coffee, dark roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter, banana
  • 8:30 a.m., second breakfast, plantain chips,* peanut butter
  • 11:30 a.m., lunch, stuffed pepper soup, diet pepsi
  • 4 p.m., herbal iced tea (rooibos)
  • 4:30 p.m, four slices cantaloupe, two balls honeydew, one strawberry, one massive pineapple heart covered with milk chocolate and sprinkles
  • 6 p.m., planned dinner, green salad, tequila

(and about 56 ounces of water)

*the plantain chips have some nutrients and are pretty low in sodium

Incremental progress brings joy

If you follow my blog, you may know that I have cerebral palsy and this week has been my first episode of true discomfort and pain probably in six months. My blood pressure continues to improve with my return to a healthy diet.

Being a few days in to whatever this recent situation is, I took it easy on Sunday and struggled with intermittent but intense pain in my lower body yesterday– primarily lower back and hip on my right side and quads on both sides. My legs burned as I tried to stand, and my back and hip would experience searing pain that felt almost electrical if I moved wrong, and no matter what I did I could not ascertain what “wrong” was. I would say my pain level yesterday was about an eight.

Last night, I slathered myself with a sample of Mountain Ice that photographer Joan gave me and went to bed early. (Mountain Ice feels very similar to the Arthritis Relief CBD cream I order from Charlotte’s Web, which I haven’t had to use in months!) I woke every couple hours in pain and had to stretch and rotate.

Little foster cat tripod Louise slept in my armpit with my arm scooped around her all night, which she never does when I am restless. I think she knew I was hurting.

I thought I felt a little better this morning, but very quickly at work the familiar pains returned. Yet, they did not impact my performance as much as they had the day before. I didn’t have the burning in my legs, though I did still experience some shooting pain, especially when I tried to walk after standing at my table for two hours. I would say the pain was about a six today.

And then my poor toe– if you’ve been around my blogs for a while you’ll know I have a toe that burns as well– it started bothering me again for the first time in weeks. I’ve been religious about putting my gel sock on my toe and the irritated, swollen portion of the toe had completely healed. Not any more.

I ended the day at slightly more than 93% of fully performing according to the Stitch Fix metrics, which yesterday I ended at 86% so that pleased me.

I see the chiropractor tomorrow, so I hope her combined chiro/physical therapy brain can offer some insight into what happened. I regretfully canceled the gym for tomorrow as if the trend continues, I don’t want to risk impeding further improvement by overdoing it.

What I ate today:

  • 4:30 a.m., one cup Eight of Clock coffee, medium roast, with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter
  • 8:30 a.m., second breakfast, Fage Greek Yogurt with honey
  • 11:30 a.m., lunch, overnight protein oats with cacao, peanut butter and chia, banana, an unsweetened latte from the work machine, one peppermint Hershey Kiss
  • 4 p.m., herbal iced tea (rooibos)
  • 5 p.m., penne with red sauce, three small meatballs, air-fried asparagus

(and about 56 ounces of water)

My pain was terrible but Southern Candy’s soup was delicious

I have made some amazing meals this weekend, all while trying to adhere to a lower sugar, lower salt, lower caffeine diet. I can’t even remember Friday, after I wrote last, but suffice to say, it happened. Gayle, my dear friend and art director, said she would bring me a wrist blood pressure cuff when we had our Parisian Phoenix meeting on Saturday. (Which, since that meeting I have built a rather cumbersome but functional direct buy web site if anyone wishes to buy books. Click here. I could really use some support, and some reviews, as the expenses right now are racking up quicker than the sales.)

Oh wait– I remember Friday! We were moved to inbound processing at work and I left feeling achy and crooked after tagging shirts and pants all day. Andrew at the gym led me through a tough upper body workout with more cardio than I enjoy after work,

I went for my blood work Saturday morning in the bitter, bitter cold (and found out Sunday morning that everything, even my vitamin D and my iron, are in healthy ranges. My LDL did get a cautionary note at 105, but since it was 107 last year and 109 the year before that, I think it will be under 100 soon.

When I got to Panera I ordered a large fountain drink and a cookie– I had perused the menu in the app the night before and had determined that the oatmeal berry cookies was the lowest calorie, lowest sodium item in the place. And the coffee, well I love Panera’s iced coffee and if we had one closer to my neighborhood I would be a member of the sips club.

I have limited my caffeine intake to one cup at 4:30 a.m. so since my blood work Saturday was fasting, I skipped morning coffee in favor of this iced coffee. The cookie, by the way, was amazing. It even had dried blueberries. It was a fair better option than any of their scrumptious breads since the breads are all laced with salt.

And I was good and did not refill my coffee.

After Saturday’s meeting, I did a lot of work, some reading, some dishes and laundry (including watching Minions: Rise of Gru while folding wash). My blood pressure seemed to be coming under control.

On Sunday I felt something in my lower back and hip. So I tried to take it easy but still do some chores around the house and bad web design for Parisian Phoenix.

I woke up today and I felt stiff but okay. I arrived at work, and within the first few minutes I knew I was not okay. By the end of the first hour I was down to 96% on my performance and my left side was burning. I made it through the day, but it was hard. And annoying. Because it’s probably been six months since I experienced pain like this.

But work had one extremely bright spot– Southern Candy made stuffed pepper soup. She brought in a massive batch of this stuff so a gang of us could have it for lunch. It was amazing! I had two bowls. It hit the spot after these bitter cold days.

It’s 6 p.m. now, and The Teenager made the Crabbiless Crab Cake recipe from the Imus Ranch Cookbook for dinner, an old family favorite. And I allowed myself some Coke Zero. My first Coke Zero in nearly a week.

I didn’t get as many steps in and chores done as I would have liked today, but I’m hoping to feel better tomorrow.

What I ate today:

  • 4:30 a.m., one cup Supercoffee with half and half
  • 6 a.m., first breakfast, Kind Breakfast bar, oatmeal peanut butter
  • 8:30 a.m., second breakfast, Fage Greek Yogurt with honey, apple slices
  • 11:30 a.m., lunch, two bowls stuffed pepper soup
  • 4 p.m., about 12 ounces of Coke Zero
  • 5:30 p.m., two Crabbiless Crab Cakes
  • 6:30 p.m., Yogi honey lavender herbal tea

(and about 56 ounces of water)

The tale of the “that’s weird” blood pressure & an EKG

So, my sparse writing lately has been in part from the overwhelm of discovering my blood pressure has been 150/90-something for a week. It’s to the point now when I’m starting to think I might always feel like I’m about to explode and the walls are closing in, with the occasional headache, ringing ears, tingling hands, and burning eyes. Not to mention I had a rather large shot of vodka that did nothing… it made me feel normal.

But the good news is that life at Stitch Fix is settling into a new routine and we had an all-hands meeting today to build moral in the face of all the recent changes. And The Teenager received her final fix, that– despite all her pleas to her stylist not to send any more sweaters– has two sweater, one very, very similar to the one she is wearing. The algorithm has failed her.

We’ve had light inventory recently and I wonder if that might have something to do with it. We started receiving new inventory this week.

Today I only folded at 90% of metrics so I’m sure I’ll hear about that tomorrow. But my fixes were damn near perfect.

I left work at 11 to visit the doctor. I had an appointment with one of the residents that my primary care physician requested from me in direct response to my blood pressure reading on Tuesday. I arrived at the office and was met by the same nurse that saw me Tuesday and she brought a student to handle my initial intake stuff.

The first order of the day was to take my blood pressure, which seems pretty basic at the doctor’s office, but apparently they tried to use the large cuff on me, and while my weight is no longer small, my blood pressure cuff size is. And the experienced nurse told the student that a slightly too loose cuff could make the reading a tad off, and since this was a blood pressure issue exact accuracy was important.

150/92.

Barely a change from last time. No change after my Andrew put me through a workout that had my heart beating. No change since I doubled my water intake and cut out caffeine. No change since I’ve been avoiding sugar, salt, snacks. But it’s only been 48 hours. I just wanted to see some sign that it might go down.

When the resident arrived (a very kind and handsome fellow who reminded me of a friend’s husband, but that person already has an identical twin so how can he have a local doppelganger, too? Do twins get doppelgangers or are twins their own doppelgangers?), I explained my symptoms and that it came upon me last Tuesday. With the symptoms changing over the week, and going back and forth. So we starting talking about if anything had changed and while my life is chaotic, it’s the same old chaos. No new supplements. No new medicines. No new foods.

“That’s weird,” the resident said.

He talked to my primary care physician and they did an in office EKG. My heart rhythm is fine. On Saturday I will get all my blood work. I am to keep a blood pressure log until my next visit. I said I would maintain my healthier habits.

When I left, I treated myself to an unsweetened decaf iced coffee from Dunkin.

And came home and made a lunch of warm kale and chicken burger.

And hung out with Nan. Her life right now is as chaotic as mine.