Rebuilding

My blog entry Monday focused heavily on the decline of my mental and physical health— and how I attributed that decline to the death of my father on December 15 (three weeks ago today) and the stress that has put upon me, my family, and my routine. I also think I may have had a bout with Omicron pre-Christmas which may be part of why my body cannot seem to get appropriate physical rest.

I shared these things because these tribulations are key for the story arc; success and overcoming mean nothing without context.

And if you are someone fighting with similar discombobulation, you might find comfort in my words.

That post is here.

The last few days the pain in my spine has been increasing and my control over my legs is lessening. To walk requires more concentration and effort than I am used to. According to my iPhone, my walking symmetry was a mess yesterday morning. And now today, as temperatures plummet, my right knee has shooting pain.

I am guessing— and purely guessing— that my stress level is exacerbating the spasticity in my lower limbs making legs that can’t relax even more tense.

I haven’t been eating right, and with the lack of good food, I don’t take my vitamins. And when I do eat enough to take my vitamins… Well, I may have eaten half a Hawaiian Luau deep dish pizza from Little Caesar’s.

I cried with my psychologist yesterday in a long-awaited therapy session where he had to recount to me all my strengths while simultaneously making me laugh.

But this gave me the courage to call out sick from work today, sleep in and start the day with my Yoga cobra pose physical therapy sessions (and then take a much needed shower).

In waking up slowly, I had the opportunity to gently force my lower limbs into motion. Walking feels a little more natural.

I had a chiropractor appointment scheduled for Friday and they literally just called today to see if I’d rather come in today. They say it is due to the threat of inclement weather but I think they read my mind.

My last chiropractor appointment was at least two weeks ago, because of the holidays, and I wonder if something might be pressing on a nerve since my right quad is burning again.

And still no work from the physiatrist about securing an appointment or the neurologist about whether my insurance will allow my CT scan.

In other news, Hungryroot gave me a $96 credit for the box that arrived late, less than cold and covered with chemical goo. I didn’t anticipate an issue with them and I had already gone ahead and ordered a new box which arrives tomorrow.

My timid tripod foster cat Louise still insists on cuddling me whenever I am in or on my bed. This upsets foster cat Khloe who likes to believe she is my favorite.

And the dog, F. Bean Barker, ate some more of my furniture.

And I’m starting to think my cat fostering peer might be the only one keeping up with my Fashion and Fiends series as she posted a review on Amazon recently.

The teenager submitted a photo of her and her grandfather for the high school yearbook baby photos. This photo was taken at the West End Fair where my dad was participating in a tractor pull. It was the first major outing I undertook with the baby by myself.

Nan will be coming over soon so we can do some more work on Not an Able Bodied White Man with Money. Which we will do over turkey bacon and omelets.

Let’s hope the next few days bring my body and my mind some relief.

Books as Salvation

Hey, friends and readers,
I am trying to get back into my social media and marketing plan for my publishing company, Parisian Phoenix. Today I mention our upcoming projects and talk about books saving me from my grief– but not as escape, as intellectual distraction.

Parisian Phoenix Publishing

Every reader I know uses words like “escape” when they describe why they love books.

I have always looked at books with loftier expectations— searching for wisdom, philosophy, artfully crafted phrases, and an emotional punch.

Here at Parisian Phoenix, we have three books available, two deep in production and one in preproduction.

And I knew this project— my publishing company with my partner Gayle Hendricks who designs my covers and my books— would be a labor of love. It started as a desire to preserve the novels I had written in a more permanent form that digital files but has evolved into a mission bigger than I ever imagined.

My first novel, Manipulations, is a chick lit/horror fiction hybrid that kicks off the Fashion and Fiends series.

In the novel, 400-year-old fire mage Galen Sorbach stalks and seduces supermodel Adelaide Pitney for the powerful water magick she doesn’t even…

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When Grief Manifests as Panic

It hasn’t even been a month since my employer eliminated second shift in favor of a seven-day-a-week operating schedule.

It has been about six weeks since my doctor ordered tests to try and pinpoint the cause of my spine, hip and leg pain. And about five weeks since the x-rays revealed a spine, that as my doctor said, wouldn’t be a problem if I were 70 or 80.

My dad died almost three weeks ago.

It has been several weeks since Omicron has soared across the world— and I discovered today, today, that Omicron grows best in nostrils and doesn’t take so well in lungs.

Did I have Omicron before Christmas? When I had stopped taking my allergy meds because of the funeral and had a congested head?

We had ten new cases of Covid at work today. This is the highest count ever. Most of the people who attended my father’s funeral have it. Curly, my college roommate, went home from my house to discover her teenage son had it.

My psychologist tested positive. My trainer did, too. My neighbor did. My other neighbor’s employer did.

It’s been almost two weeks since my neurologist appointment.

It’s been five days since my Hungryroot order shipped.

It’s been four days since my head CT was canceled.

It’s been four days since foster cat Danu went to Pet Supplies Plus.

Danu, gentlest cat ever

My grief has heightened my anxiety and has me lost in feelings that I am surrounded by love but I lack enough support. My feelings swirl in my chest and manifest as panic, panic I am too often stuffing away or channeling into tears.

My Hungryroot order came around noon today, after being shipped on Thursday. And the cooling gel pack exploded. Coating all the food. The food arrived bathed in some sticky chemical and warm. I contacted customer service but they warn they are busy and may take 48 hours to get back to me.

And in the meantime, I don’t know if it’s safe to eat the food. At least, the food in packaging. My guess is no. I hope they refund my money. But I ate everything in the pantry over the weekend and now I am out $100 and have no food.

And as I threw items away, I noticed the chicken they shipped me was dated, use by 12/21/21 and they sent it 12/28/21.

Sigh.

Then I got a text from my cat foster godmother: Danu was missing her rabies shot so she had to come home.

Normally I can handle this. But my numbers at work were around 65%, my body pain felt like my bones were burning, and then another member of the cat group sent a long message about how monitoring the medical records of the cats is important.

The vet was supposed to give Danu and all of her kittens the rabies vaccine when they were spayed and neutered. The vet didn’t. I didn’t notice. I screwed up.

Between the medical issues, the family drama, the grieving process and the shift change, I can’t get it life under control.

The second I empty the dishwasher, reload it and run it again, the sink is full. The toilets are dirty. The cats eat the dry food in the gravity feeder as soon as I fill it. The dog keeps eating things.

I’m not sleeping well.

And I have no time left to do anything I enjoy.

So my business plan for Parisian Phoenix is lagging behind.

I pick myself up and look at the positives every day, and every night I fall into bed defeated.

But this too shall pass.

Podcast review: My Gothic Dissertation

My first degree is in English Language and Literature from Moravian College, now Moravian University. I thought I would be a journalism major, but I didn’t like the curriculum. I ended up spending most of my time in the theatre department even though I was a traditional English major with a French minor that was supposed to be a French major but my study abroad fell through and I didn’t have enough French credits.

I worked as a journalism for 15 years and have been writing creatively since the second grade. I still have the notebook where I wrote such stunning poetic works like “My Mom Wears Flip Flops.” In third grade I used a composition notebook to write stories about Czechoslovakia I made up from pictures in a book.

I served as a board member of the Greater Lehigh Valley Writers Group for eight years, serving twice as president. I mentored college students, fellow writers and new reporters and editors.

I served on the local public library board for eight years, also elected to be president of that group. The teenager’s father also served for eight years.

I’ve written several novels, had creative pieces published (poetry, travel writing), and academic accolades— presenting at the National Conference for Undergraduate Research, writing a book on French stereotypes of Muslims and post colonial prejudice for my undergraduate honors thesis, and publishing in Global Studies South and The Sage Academic Encyclopedias (once in the poverty volume and again in the security and surveillance volume).

And I founded my own publishing company, Parisian Phoenix Publishing, which currently has three books out and two more deep in production. Visit ParisianPhoenix.com for info. And buy books.

My belabored point is— I have read books in English and French and my nerdy little heart skipped a beat when I started listening to Anna William’s podcast, My Gothic Dissertation. If you don’t have Spotify or any of the other podcast apps, her website is here. Here is her curriculum vitae.

At first I thought she did a podcast about writing her English dissertation about gothic literature. Then as I listened I realized this was her dissertation. She made her English dissertation into a podcast. She wrote a dissertation about a literary genre hundreds of years old as a podcast.

How rebellious and exciting. But does that even make sense?

It does— because she compares the experience of being a graduate student pursuing a Ph.D. to that of a heroine in a gothic novel. And she criticizes the very system she is maneuvering within.

She frames the heavy academic thought with humor and modern references. In the episode featuring Frankenstein she makes some amazing insights into the novel yet still manages to highlight Young Frankenstein and use Gene Wilder’s performance. In her dissertation! In a podcast!

And though she never mentions it, she uses the original Dark Shadows theme music for emphasis and I kept listening for “My name is Victoria Winters…” (IYKYK)

Even the ending wasn’t predictable. Though she does pass and earn her doctorate.

And I never thought I would appreciate a comparison of professors to a parking lot lift gate.

I hope to find more of Dr. Williams’ work. She is a true asset to the creative world. And she might be way ahead of her time. I hope she has had a hand in making people evaluate academia.

Welcome 2022

I can’t believe it’s 2022.

The teenager graduates from high school this spring. My baby is graduating in 2022. My baby.

It’s been a good start to the year.

My great grandmother was born January 1, 1900. So every year I think to myself that my great grandmother would be X years old. 122. She died in the 1990s.

I woke up at 4:30 a.m. and cuddled cats until 6ish. And believe it or not, I had a cup of coffee and starting doing chores— dishes, meal planning, updating the wall calendar.

The teenager came home from work around 9 a.m. She and her dad brought my favorite coffee, café con leche, and a Sizzli: pork roll, egg and cheese on a bagel. I have wanted to try the pork roll Sizzli for a while and it was delicious. 19 grams of protein and 400 calories.

The teenager and I went to the gym, where we goofed around during the official Boot Camp class. She loaded 188 pounds onto the leg press! When Boot Camp was under control, we started barbell squats and then Romanian deadlifts.

The teenager squatted 135 pounds! I made it to 115, but I wasn’t comfortable attempting 135. It’s too close to my body weight.

I love to watch her lift.

Then, I went to get Nan as we were scheduled to work. After we finished her writing, I prepared a chicken bone-broth soup and a cheese and pierogie casserole. My Hungryroot is stuck in transit so I rooted through my pantry to see what I could prepare. I had a long overtime shift yesterday and don’t want to spend my day off grocery shopping.

And then we starting reading the upcoming Parisian Phoenix anthology, Not An Able-Bodied White Man with Money. And meanwhile Joan is shooting more photos for Trapped.

I have received several beautiful messages today— from current and former colleagues at work, strangers on my blog, and my psychologist.

And another good thing— I got to laugh heartily with my daughter. Mostly at the expense of her dog.

And this is Bean trying to make friends with Khloe. Video

** P.S. I haven’t done my Cobra pose physical therapy. My spine is hurting. Is this why?

I had a good day

It’s been a while since I’ve had a good day. Sunday was okay, but then Monday was hard. I had to ask the question—

How can one day be so much harder than the day prior? Shouldn’t grief get incrementally easier?

I had either a mild cold or intense backlash from not taking my allergy medicine which really fatigued me. Combine that with my father’s death, no real Christmas to speak of and a formerly good friend reappearing Sunday night to gaslight me, again, hopefully for the last time.

I have been short-tempered, moody and a little meaner than usual. We all understand the reasons why, right? In addition to this very emotional stuff, I am still dealing with what is essentially premature aging in my spine and a new extended work day and a daily schedule that involves flipping my previous life upside down. I used to go to be at 2 a.m. and now my alarm wakes me at 5 a.m. That is, when cats don’t request a cuddle at 4:30 a.m.

The former friend in question here wished me a happy and safe holiday after ignoring me for the last three weeks— which unbeknownst to me was on purpose because I wouldn’t provide this person informative on a quasi-sorta date I went on. This person felt slighted and like they were not valued as a friend because I did not share something I felt was personal and none of their business (I told none of my friends) AND something that didn’t go anywhere worth reporting.

Apparently, this friend— who has a history of gaslighting— stopped looking at my social media, my blog, etc. Not once did this friend say anything to me.

This friend said nothing when my dad passed.

So, being at the end of my rope in every category, I lashed out.

I said mean things. The same mean things I have said to this person before and this person has responded not by addressing those issues but with points on how nasty I can be.

I’m wondering if I need to block this person. I don’t want to, because once upon a time this person was a good friend. But circumstances outside my control have changed my relationship with this person.

And I don’t have the emotional energy to placate people any more.

And in those same terms— I am so grateful for those friends who keep checking on me. You know, the ones that actually pay attention to what is happening in my life.

But anyway… my good day…

I am realizing more and more that stress makes my aches and pains flare. And I wonder if that contributes to the burning sensation in my quads and my instability.

At work, it quickly became apparent that I was hitting my metrics! I texted the teenager and asked if she wanted to have breakfast on my 15 minute break. She made a Dunkin run and brought the dog to see me.

I think I maintained 95% in QC all day.

Lunch was delicious — leftover chicken with vodka sauce and fresh broccoli, kale, and spinach.

And I got to style card, which I also got to do yesterday. It feels good to do something different and work in positions not everyone in the warehouse knows.

It just felt like a normal day, and I felt like me, and not a foggy me.

The UnChristmas

For the first time since December 15, I felt like myself. I’m still grieving. I’m still hurting, but by the time end of today (12/26/2021), the overwhelming hurricane of different emotions had pushed me into its eye. And I felt like me.

Yesterday was a hard one. My mother called early in the morning, wishing me a Merry Christmas. Really, my brain couldn’t even fathom why she would wish me a Merry Christmas when I was home alone and my dad is newly dead.

The holidays are always hard on me. They start with hope and usually end with disappointment. I had often said I wish I could ignore them all together. Just skip. And go to Paris.

There were no presents to open Christmas morning. I let the teenager open hers early when we needed some joy in the midst of funeral stuff. No decorations. I never got the Christmas tree up. I never listened to Christmas music this year— and I love Christmas music.

The world stopped when my father died.

The teenager has multiple pet sitting responsibilities. Something like eight visits a day. And her father just got his new car on the 23rd, so I had expected to have a car to visit family without her.

My nephew came down with Covid so there would be no gathering with that side of the family.

So my little funeral tantrum that led me to spend most of the service in my car apparently prevented my exposure to Covid.

I did have a bit of a something— a cold? A sinus issue? Backlash from not taking my allergy medicine for a week?

And I had hoped maybe I could go have some of Mom’s lasagne.

But by the end of her phone call, I think she hung up on me. I don’t know if she realizes it, but her last words were, “well, excuse me for being alive.”

That stung.

I thought she would understand how much I was hurting. She lost her dad when she was 21.

I spent the day alphabetizing and organizing some cards I’ve been saving. It tools about six hours, while watching reruns of ER and drinking coconut rum and pina colada lemonade.

The teenager brought home sandwiches from Sheetz. Other than that my meals were Christmas cookies and potato chips.

I went to bed around 8:30 pm and woke at 4:15 a.m. I did my physical therapy cobra poses and went downstairs to have my coffee.

When I arrived at work, my body struggled with anxious feelings, trouble breathing, difficulty regulating body temperature. I was no longer sick, though the post nasal drip is still very real.

When we got to Freestyle— our assignment for the day— there was no work for us. So a bunch of us had to transfer to Freestyle Pick and go out into the warehouse to pick our own work. And although the Freestyle carts are 80 items instead of 40 like ordinary fixes, I had a great time. I always liked picking. I arrived back in Freestyle not first but not last.

And I got to see the warming sunrise through the warehouse windows.

My guess is that I performed at about 90% in Freestyle QC/ship.

And then, at the end of the day they asked me to go pick again! And despite my back hurting a bit on the right side, once again I had a great time. The Freestyle/Direct Buy cart took me 45 minutes. I imagine the goal is 40 minutes.

That motion drove the feeling of panic away.

And before I left, I grabbed some hard-boiled eggs to share with the dog. I had asked the teenager to grab some jarred vodka sauce at the grocery store when she was between clients and she one-upped me.

She went to George’s Pizzeria and bought their homemade vodka sauce. My favorite.

And our cat foster godmother, now the teenager’s client and the teenager’s boss at Apricity Pet Care, left her a bottle of wine to bring home to me.

While the teenager finished her afternoon shifts, I made spaghetti. I sautéed a chicken breast and heaps of fresh broccoli, kale and spinach. I mixed it all up with George’s vodka sauce.

We ate like queens.

And then as I cleaned up the leftovers and packed my remaining work lunches for this week (Mr. Accordion stopped by and brought me his scrumptious halupkis that I finished today), the dog grabbed my favorite cat by the scruff of his neck and starting running around the kitchen with him in her mouth.

The cat was fine. The dog just wanted to carry him.

I poured some wine and grabbed some cookies.

And that is my unChristmas update.

Exploring my Disability update and Podcast review: Disability After Dark

I am scheduled for a CT scan of my brain at 1:30 today. The neurologist’s office called at 9 a.m. and warned me that the insurance company has not authorized it yet.

Update: it is now 12:30 p.m. and the neurologist’s office has called and has canceled by CT scan.

I’m disappointed for two reasons: 1. I was excited to have to pay much less for my CT scan because my deductible was met (and do I dare to conspire that maybe the insurance company is dragging their feet so I have to pay for it?) and 2. I want to see my brain.

I would love to see a functional MRI of my brain but that will never happen as I have a dental implant and while that gives me a good structure for my missing tooth, the MRI would rip that metal out of my head.

Cerebral palsy is a condition that occurs when either at birth or after birth the brain doesn’t get enough oxygen and therefore, I am assuming here, dies.

But children are amazing creatures and brains rebuild and rewire as best they can.

In my case, I have hemiplegic cerebral palsy that causes symptoms in my lower body. Quadriplegic cerebral palsy effects both halves.

Cerebral palsy is a static condition, which means it doesn’t get worse or get better. Although, everyday wear and tear on the body can be exacerbated by awkward movements, which causes premature aging.

My neurologist assessed me and came up with some malfunctions, including these:

  • I have spasticity in my legs— specifically in my quads and calves. This means my muscles do not relax. Stretching the muscle groups forces them to move and is as close to relaxing as they get. Stillness often causes stiffness. So literally standing up from my bed and walking after a good nights sleep makes me feel like the Tin Man from The Wizard of Oz.
  • My feet naturally turn inward and I don’t have the range of motion I should have in my ankles. My left foot specifically likes to try and hang out under my right foot when I walk.
  • My feet don’t have the correct temperature sensitivity. This explains why I never feel my feet are cold until they are purple. And why once they are cold, it’s practically impossible to get them warm again.

I’ve been researching everything I can find on cerebral palsy and an interesting podcast is Andrew Gurza’s Disability After Dark. He originally started the podcast as a sex podcast for people with disabilities but, as a disability advocate, has interviewed a wide range of people and covered a wide range of topics. He’s also launching a sex toy line for people with disabilities.

Like any podcast, some episodes are stronger than others based on the guests, but I love his diversity in interviewing people with a broad range of experiences. And he is very honest about his life and brings that same level of truth out of those he features.

Merry Medical Morning

I woke up with not much voice, still not quite right and worrying that maybe I have a cold. I haven’t been sick since I had Covid— more than a year ago— but I drank lots of hot liquids, chugged some DayQuil and ventured out into the cold.

Why?

The teenager had a 9 a.m. greatly anticipated appointment for a hearing aid fitting. When they put her in the test hearing aids, her voice quieted immediately.

Apparently speech tones have been difficult for her to hear for quite some time and the pandemic made it more obvious that she was reading people’s lips.

The doctor was greatly personable and loved the teenager’s enthusiasm.

From there we went to the neurologist— the first time I have ever visited one. This visit was one of many doctor appointments in 2021 I booked as part of my fact finding mission regarding my body and my cerebral palsy.

(My temperature was 97.6, so whatever is making me feel “off” does not include a fever.)

And so I talk with the assistant, the resident and the doctor. I was very impressed with the doctor and even more impressed that she kept checking in with me— “I want to make sure I address any questions you have.”

But honestly I got scared because when she first walked in she said, “so you think you have cerebral palsy.”

As if I had googled it and just came to that conclusion with web m.d.

And I’ve heard other people say it… but never experienced it before today. When you have a visible disability that you often have to explain to people, when someone threatens to change that diagnosis it’s very unsettling. I never expected to feel so uneasy that someone might challenge the very thing that has defined much of who I am, even if I hate the fact that it intertwined with my personal identity so deeply.

But spoiler alert, after examining me and watching me walked she touched my knees gently and said, “I agree.”

Not only did she explain things I already knew about the condition (it’s static and will not change), but she pointed out that I often step on my left foot. I literally trip over my own foot. She also sat on a stool beside me— so the doctor was below me making eye contact upwards. I have never had a doctor do that before.

She referred me to the physiology department, and thinks they may recommend Botox to relax my leg muscles and prescribe braces for my feet to help them face the right direction.

She also scheduled a head CT, warning me that it will show brain damage, but that young brains compensate for damage via their elasticity. (Is that the word?) I’m excited about this because it gives us a baseline image of my brain so as I age we won’t confuse my cerebral palsy brain with, say, a stroke.

And she was impressed with me, as doctors often are.

More on this journey:

Perhaps it’s time for a recap

Perhaps the dog says it best…

It’s been a week since my dad died. And I’m exhausted. We’re all exhausted. I haven’t taken my allergy medicine in a week (finally did tonight) and my head feels congested. I hope I’m not sick.

In news not related to grief, I returned to work yesterday. In retrospect, this was both good and bad. I needed rest after all of this craziness and I didn’t get it.

The checks for the incorporation paperwork and fictitious name registration for Parisian Phoenix Publishing Company have been cashed.

Darrell Parry’s poetry manuscript, Twists: Gathered Ephemera, opened to presales yesterday. And Gayle has been hard at work with cover designs for Not an Able-Bodied White Man with Money. And Joan and the residents of Plastiqueville have been hard at work with the illustrations for Trapped.

Khloe and Louise

Currently I am in bed, under the heat blanket with multiple cats on my lap.

My week has included some beautiful text messages, like one from the administrative assistant at ProJeCt, and heartfelt cards and so many flowers. Phone calls. And sympathy food! Offers of halupkis and coffee cake and delivery of alcoholic egg nog and rum cake.

I have gained back the weight I lost.

My work performance today was almost normal, but my emotional state was… what’s the word? Unstable?

I called my traveling companion and told him all my tales from the funeral— and he told me it sounded beautiful and that he thinks he would have liked my dad and wishes he could have met him.

And a couple times today I folded this sweater, the same style and color I was folding when I got the call.

My days are full of loss and laughter.

I built a little shrine. A place for my dad to have coffee. Because I anticipate that sometime soon I will feel his presence here.

My mother gave me the photo at the funeral. It was from 1975. The year I was born. Probably around the time they got married.