Tag teenagers

The easy way we are amused (and some medical stuff because I’m me)

Angel Ackerman Leave a comment

Here I am, looking less exhausted and beaten. My scabs were flaking off and healing nicely but some of them cracked today (vigorous chewing? It happened at lunch time) and started bleeding. I’m still impressed at how quickly the body can heal, but these stitches feel like flies on my face.

I left the house early today to visit Koch 33 Collision. In early February, a work colleague’s car happened to give mine a love bite on the entrance ramp of 22– this was early on in the days of my unknown cardiac troubles when the symptoms were starting to show. I remember not because my heart had anything to do with that situation but because I joked about minor car accidents just adding more stress to my life. The estimate will cost less than $1500, hopefully the insurance companies can agree to that.

When I came home, I made myself my first cup of coffee for the day. I have slowly been changing my morning coffee habit into a morning water habit, unless my blood pressure is low, then I go ahead and make the coffee (which my occupational therapist at hand rehab thought was hysterical).

“What?” I said. “This is my first week on this medication and my blood pressure has been low when I have to take it. They don’t know what caused my a-fib, so I can’t skip the dose, but I also can’t take a beta blocker with a blood pressure of 97/56.”

Today my blood pressure was perfect so no coffee.

The neurologist’s office called and moved my appointment up a week from 4/4 to 3/30. I mentioned the report from the physical therapist should be in my chart, and that the news looked good, and that my body had adjusted to the beta blocker so my blood pressure and my blood sugar seemed to be stabilizing.

Gayle had promised me a new graphic every week I made it without a fall. Unfortunately, I was on day seven when the last fall occurred so I never earned it. But today is day eight. So I definitely made it seven days. And I display my new badge proudly.

I worked on Larry Sceurman’s short story “The Vanity Demon” for his upcoming anthology, Coffee in the Morning. I’ve reached the point in the editing schedule where I should edit one story a day to kick back to Larry for final tweaks before sending to Gayle for layout.

Speaking of stories and Larry Sceurman, Gayle, Nan and I spoke to the Apex Writers Group last night on Zoom, about 21 people attended our presentation. The participants seemed most interested in book construction, so Larry’s book, The Death of Big Butch, allowed us to show how we used text and book design to reinforce the nostalgic feel of the 1970s.

I also received my latest copy of the Greater Lehigh Valley Writers Group newsletter, which included my first official “Podcasts for Writers” column. If you’d like to read all of it, it appears here. More of these lists will be printed and organized in my paid Substack archives.

The Teenager came home from work and we had to run some errands. Somehow, we ended up at my hand rehab appointment more than an hour early. We visited Josh Early Candies, which killed some time. But with our meager budgets we could not afford fancy chocolates.

We ended up at Grocery Outlet, but not our local store, one on the other end of the Lehigh Valley. And we hadn’t made it 20 feet into the store when I spotted Silk Very Vanilla Soy Milk in juice boxes. Now this is The Teenager’s favorite milk for drinking.

She almost bought a pop-top can of artichoke hearts to eat in the car but proclaimed that would be a new low, even by her standards. I bought myself a pack of Maple Donuts because it was time for my afternoon snack, and I seem to do better if I save a carb-y item for around 2 p.m.

The Teenager then made a noise and I wasn’t sure what was wrong and she said it was sad how happy we were wandering around a discount grocery store. I lamented that it was a shame Nan could not be with us. And I didn’t know if that would be a good time to also mention that Gayle and I had exchanged emails with a ridiculous amount of excitement about customized packing tape from Sticker Mule.

Gayle had said she had to check out the template because it was something the business should do when we had more money and I quickly said that despite the fact that we recently printed a new book, this was something we obviously needed. And then she totally outdid herself on the design, so if Sticker Mule delivers a good products, it’s going to be so amazing that you will have to order books just so you can receive a package from us. I pack a good looking parcel to start with, so this will up our game.

When I showed Gayle’s proposed design to The Teenager, the Teenager also got excited and I bet her father would, too, because he did spent most of her life to date as a shipper-receiver so our whole family has an acute appreciation and enthusiasm for packing tape.

But this is taking up way to much space– The Saga of Angel and Gayle and their Polka Dot Packing Tape.

The Teenager and I sat in the parking lot eating Maple Donuts. Maple Donuts are always delicious, but they are not maple flavored. These donuts had a sell by date of March 27 and it’s only March 21 so I knew they would be melt-in-your-mouth soft. And they had cinnamon sugar. I LOVE A GOOD CINNAMON DOUGHNUT.

I ate two cinnamon. They glided down my gullet and I couldn’t help myself from also having a plain cake doughnut. I have no self-control.

The Teenager whipped out a Silk soy milk.

“Are you going to drink that warm?” I asked.

“Room temperature,” she answered. “Do you think I ever drank these cold? How do you think they came out of my lunch box?”

,

Hearing her reminisce about having these in her lunch box reminded me of how many times I worked hard to find sales and coupons and deals to buy them for her because I knew she loved them– and other than that she only got Juicy Juice or Adam and Eve juices because I was very strict on what I fed her and Silk in juice boxes was so expensive compared to the half gallons. And sometimes I worked hard to save money on all the other groceries so I had the $10 extra to buy her favorite milk for her lunch.

And they are delicious.

The half gallons supposedly are only sold at Dollar General these days but we still haven’t found one in our area that sells them.

Once we headed to The Institute for Hand and Upper Extremity Rehabilitation, we had our cravings satisfied.

The Hand Report

When I arrived at therapy, they wrapped my hand in a moist heated pack for twenty minutes and it’s the best twenty minutes of my life. My therapist heard my tale of falling down the stairs and landing in the hospital in the hours after my previous visit, and he said I win for the most interesting story of the day.

Then, he proceeded to talk with me about things I could do at home to prevent future falls and make my life safer– because he is, at the end of the day, at occupational therapist. It was a great talk. It was an even better conversation because he gave me a hand massage during it.

My mobility has improved greatly, and even though it is still swollen, I can make a fist! I did several exercises there. My therapist mentioned that next time we will focus on strength, because he believes he can trust my previous experiences to make sure I follow through with a home rehab plan, he wants to be sure I have full hand strength so that I can fully grip the banister.

“Not that I’m picking on you,” he added.

I did four sets of exercises. First I picked up handfuls of these six-sided dice and dropped them all so that the six was facing up. Then I held the big ball in my hand and drew the alphabet in the air with only my hand and my wrist, not my arm. Then I squeezed the red ball. For the final exercise, I had two balls the size of a golf ball but a tad lighter. I rolled them across my fingers and then tried to reverse the order on the way back.

The Mid-Weekend Check In: 48 hours+ with the Zio and life at the publishing company

Angel Ackerman Leave a comment

Sunday morning.

I’ve been sipping strong coffee for about 90 minutes now, munching pistachios as I take my morning beta blocker. I have been trying to get my meds to 6 a.m. and 6 p.m. I don’t want to take them at the time I get up for work, because who wants to wake at 4 a.m. on a day off? The hospital gave me them at 9:30… but in the evening I’m usually asleep by then and working on a typical day. 8:30 a.m. is my morning break at work, so that would make sense from a practical point of view, but it would also mean having a snack at 8 p.m. and not getting to sleep until 9 which means the most sleep I will ever get is 7 hours. 6 a.m. and 6 p.m. sound ideal because I usually arrive at work at 6 a.m. and have a small breakfast and 6 p.m. is dinner.

But today I slept until 7.

Oops.

But when I got downstairs, my legs felt persnickety and my blood pressure was perfect if not a little low– so I went ahead and made the strong coffee. And I took my baclofen for the first time since before I went into the hospital.

One of the generalist’s at the hospital thought the baclofen might be causing some of my issues. Which makes this a test? Maybe?

But this is not a post about my Zio heart monitor or my scabs slowly crumbling down my face, though those things are fun. My gash is healing rapidly and well. I wanted to talk a bit about my weekend and what’s up with the publishing company.

Many of these thoughts will be further explored as part of the Parisian Phoenix blog and Substack newsletter. We’ve migrated from Mailchimp to Substack for better visibility and the prospect of building more paid resources and services for writers and readers. If you didn’t read this week’s recent release, check it out here.

Friday night, a journalist friend and her partner came to visit. I had planned to go visit her, but this close to my hospitalization I wasn’t sure driving on the highway by myself for an hour was a good idea. They have also been involved with cat rescue, so she’s offered some support on realigning the cat book. I’m helping her (I hope) with some of her goals and we’re both trying to help people find ways to publish their books.

My unsolicited submissions pile is growing rapidly.

Meanwhile, the dog is keeping an eye on me.

In the afternoon yesterday, I visited my “office” at Panera where our photographer Joan touched base with me regarding her activities at the Greater Lehigh Valley Writers Group conference this coming weekend. She’s not fooling me– I know my friends are doing wellness checks.

But I had the most amazing meeting with the duo behind Echo City Capers, and we have a handshake agreement to launch some projects together which will allow Parisian Phoenix Publishing to kickstart Parisian Phoenix Kittens with a second edition of an Echo City Capers Jr. book, a children’s book from Darrell Parry (and maybe someday a puzzle book/older kid story– hint hint Darrell) and perhaps event a story in the vein of Eric Carle from Larry Sceurman.

It’s thrilling to watch a simple “let’s introduce ourselves” coffee meeting can explode into ideas and mutual support.

That little meeting went two hours and when they saw our physical books, they were pleased. They immediately saw the love and attention we give to our titles at Parisian Phoenix, and without even meeting Gayle yet, I think they “know” and trust her.

I ended my afternoon romp with a visit to Larry, to deliver some publicity materials and give him and his wife, Barbara, a copy of Thurston’s book.

When I left, I felt like my blood sugar was dropping. I found a cherry Pop Tart that the Teenager had left in my car more than a year ago and came home and made a lovely lamb dinner. (The teenager saw lamb and potatoes in the skillet and immediately claimed the leftovers.) My blood pressure was high, but it was also time to take my beta blocker.

Finally, I slithered to my bed– exhausted, when I didn’t even do much– in great anticipation to finish Katherine Ramsland’s I Scream Man and Echo City Capers YA Graphic Novel printed in Canada, Who Turned the Lights Out?

I was so tickled and delighted to read the wit, the humor and the “smarts” in this little volume, which the type is uniquely done and the paper quality gorgeous. It made me very sad to put the book down to sleep.

Not the vacation I asked for: Went to the hospital for stitches and ended up with admission for atrial fibrillation with rapid ventricular response

Angel Ackerman Leave a comment

TRIGGER WARNING: This blog posts contains descriptions of a fall and medical treatment.

Listen, this one is going to be long. I spent almost a day in the hospital under observation on the general med-surg floor without my laptop or my phone charger. And the special type of not knowing in the hospital means you can’t trust them when they say you’re going home until they pull the IV out of your arm.

I’m going to use subheadings and break it up with photos. Gayle says I need to start writing a television sit-com. I would– but I’m not a screenwriter. Maybe I’ll change this into a play at some point.

The Unexpected End to the Evening of 3/13/23 (the fall)

It had been a busy day– maybe too busy: work, hand occupational therapy, a killer chest workout at the gym– but it was a good balance day. I could stand on one foot, I felt myself, and I was jovial. The only weird thing was on the 13th rep of every set of barbell bench presses, my right pinky would tingle. I even mentioned it to Andrew, and in the back of my mind, I was concerned because when my blood pressure spiked in early February, my right hand tingled.

I got home, had a lovely dinner with my daughter that included a massive bowl of brussel sprouts (which are one of my favorite things in the whole wide world) and made a cup of valerian tea to take to my room because I felt a little hyped up and it was almost bedtime.

I had the tea cup in my left hand, and my buddy straps for my sprained pinky on my right, and I was probably using the banister with my right hand. Three-quarters of the way up the steps, probably where the banister ends, I felt myself falling backwards. Just like a tree swaying in a storm (which considering the weather we’ve had recently sounds like the right metaphor). My normal falls start from my lower body. This did not.

I made a sound and started dropping f-bombs as I cascaded, according to the Teenager, sideways then straight out and dropped at a ninety degree angle onto the air conditioner. The Teenager ran to me. The air conditioner knocked the wind out of me, seriously knocked the wind out of me and now judging the bruise on my back it might have been a kidney punch from the stairs. I slowly rose and sat on the bottom step.

As I did so, I saw a frightening look on The Teenager’s face.

“I’m fine,” I assured her.

“No, Mom,” she said. “You’re not.”

Later she explained to me that blood was “pouring from my mouth” and she worried that I knocked teeth out. Honestly, from the pain in that moment, I feared I had broken my jaw (in part because in my chin-meets-sidewalk accident of spring 2010, the ER staff and the dentist marveled that I had taken enough impact to spit out teeth but had not broken my jaw).

The metal frame that holds the air conditioner in the window had sliced open my face under my lip. The tea cup had ended up between my breasts and smashed into pieces. I looked at my hands. They were covered in blood. And the floor. And the wall.

My pajamas were wet. And most of me had driblets of blood here and there. The Teenager got me a rag and a bag of frozen peas and we sat on the stairs for a minute and tried to stop the bleeding. The lightheadedness, feverishness and sweating started. I handed The Teenager my phone and told her to call Sassy, because she witnessed the last fall and this felt identical. I also checked my blood pressure: 106/81.

Sassy answered despite being at a restaurant with her family. It passed and I promised to keep an eye on myself and call my doctor in the morning. But when I looked in the mirror, I knew what my daughter described as a cut was a gash and it needed stitches.

I peeled off my pajama top. Blood streamed across my chest, perhaps from the tiny pricks made by the broken ceramic but more than likely from my face. I left on my fuzzy Cat-in-the-Hat pajama pants, threw on a tiny yoga tank and a Stitch Fix t-shirt and zipper hoodie and headed out the door in dirty slip-on sneakers and no socks.

In the Emergency Room: When the doctor listens and the patient acts responsibly

My daughter took my car and drives me to the hospital literally 600 steps away. She didn’t trust me to walk. It’s literally half way between our house and her high school, but she doesn’t know how to drive there so we wiggled around the neighborhood. We wandered in, registered, and were taken right back. 8:20 p.m.

The Teenager did have time to buy refreshments from the vending machine.

Once we got into our room, we saw nurses and a doctor very quickly. Our Emergency Room physician was amazing. I explained what happened, including my description of how my falls have not been normal, and he gave me three options.

  1. He could stitch me up and send me home and I could be home by 9 p.m.
  2. He could order bloodwork, fluids and an EKG, but then I would be there an hour or two.
  3. He could go all out and order CT scans and all the things, but then I’d be there for hours.

I chose option 2. I already felt something was off, and I thought bloodwork would give us a starting point without going crazy like some sort of hypochondriac. (Speaking of hypochondriac, my current favorite podcast is Hypochondriactor with Sean Hayes and Dr. Prianka Wally.)

They even allowed me to throw out my rag and get a big old pack of gauze.

The nurse hooked me up to an IV of fluids just in case the incident was amplified by dehydration. Here is the first mistake we made, not putting on the hospital gown until after my IV was installed. So when they came in for my first EKG, I had to shimmy my shirt and tank down the IV line to the bed.

The poor technician with the EKG machine had a terrible time getting it to work and she was so close to the end of her shift and tired. The Teenager had her intrigued that she had found a half-iced tea, half-lemonade Monster in the vending machine. The technician ended up getting a second EKG machine and the doctor came in to do the stitches but decided to come back later.

That’s about when The Teenager almost sent Sobaka’s mom a text that I was in hospice, thanks to auto-correct.

And the blood pressure and heart rate go crazy

You know that look you never want to see? The one where the doctor almost gets an “oh shit” expression? Now remember– I came to the hospital for stitches. And I’ve been monitoring my blood pressure for six weeks. And maybe it had been a day or two since I checked it, because we went to Waffle House, had margaritas and ordered Dominos in the same weekend.

I was informed that my blood pressure was high and they were going to administer a beta blocker through my IV line. After it kicked in, I looked at the monitor and it said 150-something over 90-something. I’m glad they had it turned away from me before giving me the medicine.

The second EKG revealed I was in atrial fibrillation. And as my blood work started rolling in, it should my white blood count and TSH was high.

Meanwhile, I am texting my travel companion M, because he’s a medical technologist by trade and loves numbers.

They also asked when my last tetanus shot was, to which I responded, “two weeks ago.”

When the doctor came in to do my stitches, I asked if he could unhook me from the IV so I could use the restroom first. Because I don’t know about you, but I find it horribly difficult to handle pain when I need to pee.

The doctor finally had his chance to shoot up my face with lidocaine (that second shot was a bitch) and sew up my lip. We irrigated the wound by me holding a basin under my face and him pouring the solution over my face so I ended up with quite a bit of liquid and a little bit of blood on my gown and down my chest.

I got three stitches, and he did a nice job. Not that I have a whole lot of experience. I’ve only had stitches once before.

And then I got a third EKG from a new technician also about to end his shift.

That’s when the doctor said I was still in A-fib and he’d like to admit me for observation. If that was okay with me. And if the hospital administration would allow it. Which probably means if the insurance company would allow it.

Admission

At 11 p.m., I was wheeled into some narrow elevators and transferred to room 353, which had to have made M happy. All prime numbers. I was admitted to the med-surg floor and I think I might have been the youngest person in the hospital. As we rolled along, I noticed they have a whole lounge of the chair I love that the dog ate!

The nurse had some situation going on so it took us until 1:30 a.m. to finish my admission survey. I had fun with some of the questions: “Are you safe at home? Do you face any physical or verbal abuse?”

“Only from my cockatoo,” I replied.

They had to take photos of my bruises, too, and take my cardiac enzymes, blood work and vitals every few hours. And the floor seemed to be crazy until 2 a.m.– and remember, I had gotten up for work at 4 a.m. I managed to take two naps each about 45 minutes.

I thought I had turned off my work alarm, but I had not, so it went off at 4 a.m. and then the nurse started her rounds at 4:45 and my work friends started texting at 5. So I was up for the day, with no phone charger and a book by Katherine Ramsland as my entertainment. I read 150 pages.

I was delivered the most boring, high carbohydrate breakfast I have ever seen.

And the staff kept offering to bring me water, and when I said yes, they would disappear forever.

I met with the cardiologist, the occupational therapist, the physical therapist, and the hospitalist (who needs a caretaker for her beagle when she visits India for a month this summer).

By morning I was allowed to move independently, which meant I could use the bathroom without someone watching me walk. The staff quickly learned that although I have cerebral palsy, I am adequately mobile.

The cardiologist explained that we would start a beta blocker, as that is the easiest form of management, and based on the echocardiogram and the information from the heart monitor I will be soon wearing, we can determine if different or more aggressive treatment is needed.

Often, A-fib raises risk of stroke so patients often take blood thinners. My cardiologist and I agree that will my tendency to fall, those medications would do more harm than good.

Echocardiogram and therapists

The echocardiogram was fascinating. To see an ultrasound of my heart in motion was truly an amazing reminder of what a complex and marvelous machine the human body is. My mitral valve regurgitation did show up on the test, but even with that my heart function was normal. That was great to hear, because lord only knows I didn’t want to hear that the mitral valve was failing and confusing the rest of my heart. I have never had medical surgery and would like to keep it that way.

The occupational therapist I met asked me what my everyday challenges were. I answered that my biggest challenge was dealing with my socks and shoes. She showed me an extended shoe horn and a sock aid. The sock aid is basically a big piece of plastic pipe with a jump rope attached to it. You put the sock on the end of the pipe, stick your foot it and pull the tube away from the sock with the rope.

I think you probably kill the life span of your socks by stretching them out, but if it means you can put them on, that’s cool to know.

And the physical therapist okayed my gait and my walking, especially knowing that I was already scheduled to start fall prevention therapy on Monday.

I was able to order my own lunch, but even though I ordered the entree salad, I got something much blander. But compared to breakfast it was delicious.

The Teenager came around one, because the hospitalist said I would soon be discharged. The hospitalist had declared the fall was mechanical, even despite my protests it was not. She told me to follow up on that with my neurologist. And I plan to. The poor neurologist has been getting so many portal-based text messages from me.

The head nurse came in and gave me a gift blanket— that would have been nice to have the night before.

The nurse removed my IV and 2:30 and we left the hospital about 3:30. I filed my short term disability claim, made an appointment with my primary care physician and took my first set of meds. The Teenager made dinner and I was in bed, asleep by 5:30.

My bruises hurt. My lips are dry and sore but finally the cuts are healing enough that food doesn’t burn them.

I have proposed to my employer, and plan to bring paperwork to my doctor tomorrow, to leave me out of work for at least three weeks. I have six weeks of leave left. The three weeks would give me time to see if the medicine is working, finish hand rehab, participate in fall prevention, wear the heart monitor and take ALL that information to my neurologist.

Because no one wants me having another episode at the warehouse.

The cardiologist assures me that I can’t blame this on Waffle House, margaritas and Dominos, but how can we know that when the last fall down the stairs happened after Little Caesars, Taco Bell and Diet Coke. Coincidence? Do my overbooked days add to the triggers? The risk factors for A-fib include anxiety, being overweight, alcohol and caffeine. That’s my life in a nutshell.

I’m going to see Nicole today, not sure I need a chiropractor right now, but I had the appointment already and I like the idea of her checking my post-fall body.

So I think that’s everything.

It’s good to be home.

My heart monitor is on the way.

Three-point fall

Angel Ackerman Leave a comment

I am so sick of disability-related posts. My goal today is to start the March newsletter for Parisian Phoenix, which I will be distributing via Substack. Yesterday felt like a beautiful spring day and today, today there is two inches of snow on the ground.

I’m tired. And sore. And stiff. I called out from work today, although I’m fairly certain I have no paid time off for it. The Teenager and I have major bills do this week, and they scare me, but I have (and she has) placed every spare penny we have into paying them. And they will be paid.

So, before I back up, and explain exactly what happened since I closed my computer yesterday afternoon, let me say that my plan has been to take better care of myself. To stop pushing myself to keep up with the people who don’t have the same issues that I have. To ask for help. To be honest– not only with others, but with myself.

I have planned to organize regular long weekends every three-to-four months to give my body time to recuperate from the stresses of being on my feet folding clothes all day, and to give myself time to finish larger projects for Parisian Phoenix Publishing. That hasn’t happened, in part because I’ve spent so much time sorting myself out with medical appointments, and also because November through February incorporates a lot of paid holiday time.

I closed my computer yesterday afternoon and The Teenager asked if I wanted to take the dog for a walk.

Now, let’s think about the conditions yesterday:

  • It was a beautiful pre-Spring day and the sun made everything alive.
  • I woke by alarm at 6 a.m. to meet Southern Candy at the diner, where I ate salty food and drank three cups of coffee so my blood pressure was creeping up.
  • I went to the orthopedist, but was unable to get an appointment with the hand rehab people.
  • I was going to the chiropractor in about an hour, for the appointment last week that I had to reschedule because of my fall.
  • I have not gone to the gym in a week because of the fall.
  • My legs are covered in painful bruises.
  • I was a little hungry.
  • I had taken Baclofen* in the morning, but not since.

Interesting side note: CVS ordered my baclofen refill last week, as they did not have it in stock, and I haven’t heard from them since.

I felt good. Nothing hurt. I hadn’t noticed any balance issues. So, although I felt a little wiped out, a short walk sounded good.

The Teenager suited up the dog and put her cat in the cat-backpack and we headed up the street. We made it halfway up the block, cat screaming in fear, when the dog noticed other dogs and got nervous. And I had what The Teenager called “a three-point fall.” I immediately assumed it was a basketball reference but she explained. I stumbled, froze in the air for a second, and then fall. I believe the fall at work was a three-point fall as well. That frozen time she witnessed was me actually making a decision what to do next. That is the second where I have to decide whether to fight the fall and try to regain my balance or use that second to frame the fall and try to control the impact.

In this case, I opted to throw the fall to the left to protect my already injured right hand.

The sidewalk and the meat of my palm met as I aimed for the grass, now a barely visible scrape. The Teenager declared we would turn around. I told her I could turn around and she could keep going, but she promptly declared this was a less-than-ideal experience for everybody.

Now, at this point, I have a new short-term disability claim open with Matrix, waiting to hear when and how often the hand rehab people want to see me. With past experience, I’m fairly certain it will be once a week. But, before committing to returning to work, I would prefer to talk to them and was hoping they would call back and see me today, and then, if necessary, I could email or hand-carry paperwork to my PCP to decide whether we would pursue the new STD claim for my hand or amend my intermittent leave parameters that cover my cerebral palsy.

My claims examiner is confused, and since I have not received all the information I need to make a decision, my answers are rather wishy-washy.

Also, the weather is calling for snow. And I have this nightmare of me leaving my house in a snowstorm when I already have mobility and hand issues.

I head to my beloved chiropractor, ready for her insight and her physical therapy knowledge. Meanwhile, my neurologist/physiatrist who I had had a brief texting conversation earlier in the day, texted and asked if anything else could be happening in my body to cause these issues. I’m typing the list of answers: lack of chiropractic care, lack of gym, lack of Baclofen, bruises on my legs, high blood pressure. I am scheduled to see her in early April.

And meanwhile– we still don’t have an answer for why my quads were burning a couple weeks ago and why my “normal” issues in my hip joints seem to be moving into my sacrum.

So when Nicole the Chiropractor gets her hands on me she declares that my hips and my sacrum are all locked up and my lower body is stiff. She gets everything moving and pushes everything around. And I stand up feeling like a jelly fish, so loose it takes me a while to remember how to walk.

I haven’t heard from the hand rehab people. The neurologist has probably finished her day. My right side is starting to ache a bit. I drive The Teenager to the post office and we stand in line behind a Karen who criticizes every customer in front of her for not using the post office correctly, gets to the counter, and very promptly gives my favorite postal clerk a hard time when she discovers that Priority Mail box she has packed her materials in is a Priority Mail box and will cost $17.10 to mail. Even before she hears this news, she badgers the postal clerk about how much it will be, and he’s confused because it’s a medium flat rate box so it’s $17.10. And she then snapped that she had to text the person receiving the package because that person will have to pay her back. The postal clerk suggests maybe she buy a different box from the postal supplies station in the lobby and then he could mail it for $10. But she grumpily agrees to pay the flat box rate.

We return from the post office– having mailed cookies to a friend of The Teenager who has joined the service– and I head into the house and realize I left my glasses in the car as my prescription sunglasses are on my face. I head back out to the garage and walk down the narrow cement steps to the car bay. Half way down, my ankle gives out, twists underneath me, and I somehow manage to lower myself to the ground without falling down the stairs.

I pick myself up. Everything feels solid. I text the neurologist. I return to the house. The Teenager expresses concern as I took too long to walk to the garage and back. I explain what happened.

She orders me out of the kitchen and she says she is going to make dinner and I am going to sit. I use the time to email my supervisors and call out for today, because I think it would be best if my body had some rest. I email my claim examiner and tell her to cancel my hand-related claim, because this whole incident is definitely something we have to deal with as a cerebral palsy issue. And I tell her if I need to contact my primary care doctor and have my intermittent leave parameters amended I will.

I ate a pile of peppermint kisses, a moon pie, and a rice krispie treat after dinner and washed it down with Diet Coke. Despite that, my weight is down more than two pounds this morning and my blood pressure is fine. My lower back and right side of my lower body hurts, but I’m hoping my morning dose of Baclofen will reduce the stress on my joints. My arm still hurts from my Tdap booster.

I don’t know what will happen next.

The update on life, service dogs, what it feels like to live with cerebral palsy, and other things I know at least one faithful reader is waiting for

Angel Ackerman Leave a comment

I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.

Meanwhile, forgive the cornucopia of prepositions in that title.

And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.

The disability/cerebral palsy/dog stuff

As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.

I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.

I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)

Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.

But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.

My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.

And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”

The Stitch Fix stuff

I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.

Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.

Or I’m guessing will lead to termination.

I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.

So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.

I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.

I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?

The fun Stitch Fix (fashion) stuff

There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…

And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.

I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.

The boring stuff

Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.

So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.

Chill out, have some coffee and open some packages from Stitch Fix and a pinch of medical stuff

Angel Ackerman Leave a comment

It’s been six days since I touched base. My friend is home from the hospital and probably climbing the walls. I’ve been doing a lot of work on Parisian Phoenix stuff– getting the Substack off the ground, editing material for clients and my authors, and sending packages out.

Normally I go to the gym Monday, Wednesday and Friday but this week I haven’t felt well. Even after my chiropractor appointment on Monday, I still struggled with body pain in unusual places. My chiropractor confirmed that I was feeling more issues in my sacrum as opposed to my normal troubles in my hips. My quads bothered me for a while after that and the drop from warm weather to icy wintry mix made my knees burn. That was new. All of these sensations led to my right side feeling rubbery and unstable.

I’ve also had a lot of commitments recently and not enough down time, so that didn’t help.

Wednesday night I ended up skipping the gym because of pain and a meeting for the Lehigh Valley Book Festival that ran until 6 p.m., which meant I didn’t even get to my town until 6:30 p.m. and exercising in pain and hungry did not seem smart. You can read about my visit to Let’s Play Books on the Parisian Phoenix blog, here.

And when I got home, The Teenager had purchased cheese steaks at Joe’s Steaks in Phillipsburg. My standard order is a hot cheese steak, no onions, and an order of pizza rolls. She did not remember the pizza rolls.

I actually asked my boss to use two hours of my intermittent medical leave to come home and take a nap yesterday, because supporting my own weight and balancing was exhausting.

Best. Nap. Ever. I still feel achy today, but much better, probably because I had an appointment with my primary care physician. I thought it was for my annual physical, but apparently it was a six-month follow-up. Follow up for? Be darned if I remember. My mallet finger and the resulting leave from work because I was all out of whack?

I noticed while waiting for him that I was wearing two different shoes. They are the same shoe, but two different pairs in two different sizes. Interestingly, I put the smaller shoe on the smaller foot. Because it turns out my left foot is a size eight, but my right is 8.5.

He approved of my blood pressure numbers, didn’t say anything about the roller coaster of my weight, wondered if I had my anxiety under control, and asked about my service dog application. He thinks I have a cataract starting in my right eye, that I’m salt sensitive and that I need to take care of myself and (my words not his) calm the fuck down. Oh– and lay off the caffeinated beverages.

And as soon as I left the parking lot, I went to the Dunkin a block away and bought the new chocolate caramel cold brew. Even though I had chocolate in my coffee. But I figured this would be a candy bar, and I was right. My lunch consisted of cold brew, pistachios, apples and a KIND breakfast bar.

I returned to work, finished lunch with my friends and went out to the warehouse floor where I might have hit way over 100% thanks to the buzz from the coffee. I took the early release/voluntary time off and came home to packages!

We got two Freestyle packages from Stitch Fix, one from the Dizzy (in Dallas) and the Phizzy (in Phoenix) which The Teenager recorded me opening.

Our Little Dog Neighbor Sobaka is staying with us this week. So The Teenager and I took both dogs for a walk.

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

Angel Ackerman Leave a comment

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.

Fog
Tripod Louise

The highs and lows of 24 hours

Angel Ackerman Leave a comment

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

Angel Ackerman Leave a comment

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.

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

Angel Ackerman Leave a comment

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)