Second, let’s celebrate that it’s sun-shining gorgeous out.
Third, let’s celebrate that that damn race between Dr. Oz and John Fetterman is over. Talk about two bad choices.
But it sure was exciting to take my freshly-minted 18-year-old to vote and even more exciting to hear her rant about international politics after she took my out to dinner.
M and I took her to Paris, Moscow and Kazan the summer she turned 12… and while it was a whirlwind visit, she had the brain-expanding experience I hoped she would have.
Because she knows how little of the world she’s seen, but also knows how little she can trust depictions of other cultures perpetuated by the mainstream.
I often wish I could see Russia how she sees Russia. I imagine it’s similar to my view, but also very different because I have seen parts of North and East Africa and even Yemen. But just that little pop of Russia six years ago altered her perceptions forever.
So, last night, The Teenager took me out to dinner— at Applebee’s, she loves the fiesta lime chicken— and we tried the Cheetos cheese curds and the slamming reindeer drink.
The cheese curds were strange, super greasy and very addictive.
Other foods I have taste-tested recently include the cookie butter doughnut at Dunkin which I mention here and some new flavors of delicious Blue Diamond almonds which we bought at QuickChek, video here.
I ended up calling out sick from work today— in part because of my hip and in part because I didn’t get to sleep until 3.
I see my specialist today, and my body is definitely stiff and angled but I’m not in pain. What a thing to say— but I wanted to be in pain to explain how I feel to the doctor.
I’m trying to motivate myself to give up sugar and do a 30 day elimination diet via Whole30 as I think reducing food-related inflammation in my body could go a long way. And there are others who would like to see me try medical marijuana.
I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.
I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.
I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.
But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.
If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.
I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.
Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.
And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.
I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.
So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.
I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.
And strengthen writing habits.
The jury is out.
I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.
The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.
The Teenager knows how to bribe both of us.
She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.
There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.
And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.
I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.
I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.
She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.
I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.
Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.
I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.
If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.
Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.
We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.
I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.
Yesterday, I “broke” my dear blind friend Nan out of her independent living facility, her first outing since her bout with Covid-19. I drove up to the door in that convenient wide lane that have under the overhang and lowered the window on her side of the car.
“Hey, Nan,” I shouted. “Your getaway car has arrived.”
She laughed, and since she recently had her first Corona experience, it sure was nice to hear her laugh again.
I had the Spotify ready to go, as Nan loves a good random computer generated playlist, and we pulled off. Her goals were simple.
CVS for vitamin C and Excedrin
Batteries for her clock, 2-4 AAAs
Stop at her old apartment as there was a package for her that was not forwarded
Get some cash at the bank.
Well I told her right off that we had a 40-pack of AAAs somewhere in my house. So that was easy. I then told her I had thought I might take her back to my house for chai, but thought maybe getting out of a building into the sun would be more fun. That we could listen to Spotify in the car with the sunroof open sipping chai.
“That does sound nice,” she said.
“The same theory as taking the dog for a car ride,” I explained.
She laughed when I compared her to the dog, and I pointed out that really we both liked things that the dog would enjoy.
Nan and I headed into CVS, where I found her 200 generic acetaminophen, aspirin and caffeine tablets and 100 chewable vitamin C/rose hips tablets. The original price was $31.00 before tax, but I had carefully set up my CVS app to use some coupons that reduced her total to $20.58.
We drove to my house, got the batteries, and headed to her old apartment building.
“I just thought of something,” she said to me. “How are we going to get in?”
“I suppose you’ll have to tap the lobby door with your cane until someone sees you,” I said.
But there were no parking spots on street, and I pulled into the parking lot.
“Why don’t we just drive down to the back door and see if we see any of your neighbors,” I said.
“Good idea,” Nan agreed.
I saw the maintenance man at the back door. I pulled into the middle of the parking lot and hopped out of the car, escorting Nan as I hollered, “Excuse me, but can you let this vagabond into the building?”
She got her package.
We then got my favorite teller at the bank and almost went to a Dunkin several miles away, forgetting there was one on the other side of the bank.
We remembered in time.
We sat in the car, windows and sun roof open, enjoying the sun, listening to cars and birds and all the mundane sounds Nan had missed when trapped in her room with Covid.
And then, she went home and I talked to my friend Maryann Ignatz. I did all the press stuff I had planned for my business. I thought I deserved a small rest. I went up to my room and cuddled with some fosters, including sweet Jean-Paul Sartre.
The teenager texted that her boss was stopping by later. If you’re a regular here you might recall our “cat foster godmother.”
I decided to go downstairs and clean.
I grabbed my computer, Rosie, the 13″ MacBook Air, last of the Intel processor generation, and my iPhone. Foster cat Khloe has been a member of gen pop lately, free roaming the house because she scared the dog so badly. She can be a little dramatic.
The teenager has a baby gate with a cat door at the top of the stairs. Khloe was walking out the cat door and I went to unlatch the gate and must have tilted my hand just enough that Rosie the Laptop slipped from my fingers and somersaulted all the way down the uncarpeted, hard wood stairs.
When I opened her again, her screen image was splintered.
I have three book projects underway for Parisian Phoenix, and the Easton Book Festival coming up. I’m still wondering how best to pay off the recent ceiling repair…
Now is not the time.
But life is like that. I have to remind myself that we have more appreciation for the things that don’t come easy, that real success is slow.
And then I broke down into hysterics, alone, just me and the dog. And I scrubbed the floor on my hands and knees.
Yesterday I cleaned a lot of my downstairs and had a relatively good work out at Apex. I haven’t felt incredibly strong lately, but my IUD must be working because I’m not in pain.
I had a good week at work, so cleaning, working on Parisian Phoenix projects and watching Cobra Kai suited me just fine yesterday.
I even found two of the dog’s Kong balls under the couch which made for a very happy dog.
Today, I was supposed to have my annual physical but my doctor’s office called yesterday and rescheduled for next week— which also means another week without answers from my CT scan and physiatrist referral. Neither the neurologist nor the physiatrist’s office has called me back.
And I need a doctor that can help me understand the motion and mechanics of my body, and not just its individual parts.
Today I scrubbed the exterior of the stove and did dishes. Then I went to help my blind friend Nan with some errands and grocery shopping.
We made plans to pick up some pizza at Little Caesars so Nan could try the Batman Calzony. No matter how I tried I couldn’t explain what it was to the blind lady. So we bought one.
But we had time to kill before the teenager got out of school even after we put groceries away. We grabbed the dog and got drinks and hash browns (for the dog) at Dunkin.
And then we surprised the teenager with the dog at school.
Then Joan stopper by to drop off some hand-me-down magazines and erotica, cupcakes and photos that Joan needed us to sort.
Now, I’m cuddling with Louise, watching Gotham Garage and enjoying kitten photos.
I went to the chiropractor yesterday. Nicole at Back in Line Chiropractic and Wellness Center warned me that she “beat me up” more than usual.
That’s amusing to me as I was in an incredible amount of discomfort and she eliminated 90% of it.
I explained everything going on— my stress, my lack of good sleep, the possibility I had omicron, not eating right or taking my vitamins, not stretching or working out, and working overtime.
But as soon as she touched the back of my right hip, the tenderness immediately told me there was an issue I hadn’t thought of: my hip.
I need to remember that when I struggle to use my legs I might have an issue with my hip.
This post explores the last time I had this same issue: click here.
And if you look at that entry, you will see my mental health had declined in similar proportion to what I experienced earlier this week.
Pain and shifts in mobility really do have profound effects on our mental health.
So maybe next time instead of focusing on all the things that are going wrong and contributing to my lack of function and mental health, I need to be quicker to ask for medical intervention because — as I already know— I can’t trust my pain.
My pain recently didn’t feel that bad. But all the signs, including 65% work performance indicated otherwise.
I really need that physiatrist appointment to get scheduled.
In cheerier news, I recap some of this in a YouTube video I did yesterday while trying the “brown sugar cookie” latte and new egg bites at Dunkin.
If you want the PowerPoint version of my impressions:
The Brown Sugar Cookie flavor is boring. To me, it tasted a bit caramelized and like “toasted white chocolate” syrups. I miss peppermint for Christmas and pistachio for spring. These flavors now only come in peppermint mocha or pistachio mocha. I don’t like mocha in my coffee. Unless my friend and colleague Mary Barnes, now deceased, was the barista making a salted caramel mocha about eight years ago before everything came in salted caramel mocha. Starbucks always introduced it for the holiday season. But back to Dunkin and Brown Sugar Cookie, the teenager compares it to gingerbread. I didn’t get the spice of ginger.
The bacon cheddar egg bites… these were expensive but at 17 grams of protein and 280 calories they can substitute for a meal. But $4.99 for two miniature donut shaped eggs? Cute, definitely. Firm and crisp on the outside. Soft on the inside. Smoky, cheesy flavor. Again, boring. Strange mouth feel. But a very practical and utilitarian option.
Yes, this is another philosophical piece spurred by the death of my father. And it seems appropriate to use his passing as a reason to explore friendship, as the teenager says, because everywhere he went he made a friend.
One of my fellow crazy cat ladies brought me a matcha latte— having seen this social media post:
And several friends and in-laws have offered food or services (letting the dog out, making cookies trays or fried chicken for guests). I even have a sympathy sushi meal later today.
My college roommate, whom my dad called “Curly,” will be arriving from the Baltimore suburbs this afternoon.
Poppop couldn’t go anywhere without making a friend.
So it makes me wonder— and remember— how many people gather around me in a crisis, even if I can’t always find someone for the everyday ups and downs.
Maybe the notion of friendship is not about how available someone is all the time, but who reaches out without prodding when you don’t even know how much you need it.
Yesterday must have been “doctors return patient messages” day because I heard from both my primary care physician’s office and my gynecologist’s staff.
But before I get to that… because that info will primarily be about the female reproductive system and how my issues in that area are compounding the impact of my cerebral palsy (and I know that’s an exciting topic), let me start with the humor in this beautiful Friday morning.
But perhaps the humor started last night with the fire drill at work. The fire alarm itself sounded like crickets chirping in a field. I supposed the sound gets lost in the depth of the warehouse.
The Bizzy Hizzy released us at 9:30 p.m. last night, which is fantastic for my aching body that is still trying to figure out what the hell happened to my hip. (Read about that here.)
I got up this morning hoping to be well-rested and pain-free. I woke up a cuddly Khloe and another phone call from my gynecologist— but I’m skipping those details for now. Let’s just say I have an appointment with them on October 22 and the person who made my appointment has a cat named Mr. Doodlehead.
I go downstairs, let the dog out and noticed the Met-Ed truck at my neighbor’s house. The noise of the bucket truck scares the dog. We go inside. I put coffee in the Keurig.
The power goes out.
The bucket truck drives away.
Our own neighbor tries to chase down the crew. Another neighbor starts pacing the sidewalk. A third guy— yes all these people are men— stands in the yard and stares. (He’s the apparently live-in boyfriend of the resident. It’s a weird situation because they met on the internet and I was told it didn’t work but now he appears to be living there after two dates.)
After a little while, I realize I don’t want to open the fridge but I really should have breakfast so I’ll go out. My leg and spine still feel weird after Wednesday’s rather dramatic adjustment— I veto walking to the teenager’s favorite mini-mart gas station. Besides, they might not have power either.
At this point, the dog brings this from the kitchen:
As if the cat food can wasn’t delectable enough, the teenager must have tossed a bag of animal poop in it. Poop in a meat can! What a treat.
I put on my shoes about to take the dog to Dunkin’ and I realize— I have no idea how to open the garage door manually. So I sit back down and work on the memoir I am proofreading.
But I need food.
So eventually I brave it.
The dog had tried to convince the kittens to play and lost that battle so she needed a pick-me-up, too.
The trip was uneventful. Except I had to drive around the building an extra time because I got to the speaker before I had my order ready. You can see me feed the dog a turkey sausage, egg and cheese wrap here.
And when I got home I realized—
I have no idea how to reconnect the garage door opener.
Now the health stuff…
I am on day three of taking CBD oil.
I am recovering from anemia caused by stress and heavy menstrual bleeding. My menstrual cramps hit me in my spine every two weeks, first for ovulation then for the actual bleeding. My spine already has issues with my SI joint because of all the years of walking crooked due to cerebral palsy. Despite my history of an active lifestyle and my current training program, the pain is getting worse and harder to treat.
CBD cream has been very successful in relaxing tense and spasming muscles in my back.
The gynecologist ordered some blood tests — I go Monday — and the PCP won’t see me until November 2 and I have instructions to follow up with my gynecologist in the meantime.
They requested and I got abdominal and transvaginal ultrasounds which revealed small growths (a benign cyst and a fibroid) in my uterus (looks like adenomyosis) which due to my age will probably cause more pain until menopause.
To alleviate this, they are going to give me the Mirena IUD in two weeks. Which is funny, because the proposed treatment for my back pain is a contraceptive device when I’m 46-years-old and haven’t been that kind of intimate in more than two years.
Fingers crossed that it helps. And that insurance covers it because it costs a thousand dollars.
I had two copper IUDs (Paragard) in the past. The first one lasted the whole ten years. The second was so painful I asked them (honestly begged them) to remove it after the first year.
The teenager and I did some cleaning today— all getting ready for the plumber to start building my laundry room on Tuesday.
The bathroom off the kitchen now looks like this:
But on Tuesday the shower is coming out to make room for a stackable washer dryer.
Meanwhile, after the gym and while the teenager was off at the diner doing her work thing, Feline Urban Rescue and Rehab foster cat tripod Louise and I did some more work on the fourth volume of the Kink Noir series by William Prystauk, a gritty erotic look at all the definitions of love with a hearty dose of darkness.
Then FURR Khloe came to relieve her. Apparently I need babysitting.
At 6:30 pm, I harnessed up the dog and we went to try a $3 pumpkin spice cold brew at Dunkin and pick up the teenager at work. The woman in the drive thru gave Bean a munchkin but she didn’t like it— probably because it was round. This mutt can’t eat round items.
And then old neighbors stopped by and we got to visit and hang out in another neighbor’s yard while there was quoits happening.
I don’t know how long this will be active but I think it is super cool.
My friend and publishing partner Gayle picked me up when I dropped the car off and we took her sister to the doctor. She wanted to borrow my hedge trimmer and me, not remembering she was bringing me home, was wandering around the car dealership with a small electric saw.
Gayle packed the three of us a dragon fruit snack and let me read her completed Silk & Sonder planner for June.
When I got home, my new AirPods we’re waiting on the doorstep.
The teenager took the ones the dog ate.
And I was too stupefied to operate my daughter’s new Keurig mini to make coffee.
And then we got big news for Midnight Society at the Bizzy Hizzy: Stitch Fix is rolling out a $1 per hour shift differential. Their goal is to get second shift to 200-250 people to balance first shift.
Here’s hoping it won’t change the culture and camaraderie.
My friend Barb worked her last shift tonight and one of our leads brought munchkins from Dunkin for Barb to eat or to share. Barb, being the ultimate altruistic soul and team player, gathered everyone on the shift and offered them a donut.
Then at our roster meetings, our supervisors announced VTO— yes VTO— voluntary time off. Anyone who wants a half day tomorrow can have it. Early weekend. We’ve hit all our goals and the work is done.
So now I’m sitting with my foster cats Khloe and Louise as Barb enjoys a glass of celebratory wine at her house.
The last 48 hours since the teenager arrived home from Cape May have been a blur. The fosters Khloe and Louise from Feline Urban Rescue and Rehabilitation are very glad to have the dog out of my room so they can compete for my attention freely.
The teenager brought me some breakfast coffee from Cape May Roasters. I normally don’t like breakfast blends as they are typically light or medium roasts and I like my brews dark. Maybe it’s just because the teenager bought it for me or maybe it’s just good coffee, but I really like it!
Author’s note: I started this blog entry in the wee hours of Saturday July 3 after my Friday July 2 shift, after having three days off for teenager’s beach vacation. Someone had to watch the menagerie.
I have tried several times over the last 24 hours to finish this entry, but it is now 23:55 (or 12:55 p.m.) with cool air filling my room and idiot neighbors having fun with firecrackers.
And I’m no closer to posting.
But back to the Cape May souvenirs, which for me include a mini retro Pac-Man Arcade Game!
So we spent Thursday evening catching up and I almost finished Karen by Marie Killilea. Marie Killilea raised a daughter with cerebral palsy, took in a neighborhood teen, raised another daughter who had repeated bouts with illness including rheumatic fever, and later had a mischievous son.
I would say I’m 50 pages from the end of the book. It is Marie’s memoir about her work to champion cerebral palsy, promoting knowledge and encouraging research, while raising her sickly children. These children never seem more than cardboard cutouts.
On Friday, I returned to work at the Stitch Fix Bizzy Hizzy. I didn’t get to Style Card. I QC’d something like 36 fixes the first two hours, but by the half way point of my shift only hit 63. And continued to decline with only 123 for the night. The goal is to quality control check, fold and box 130 fixes per 8-hour shift.
Meanwhile, the cat group is discussing giving us new kittens and developing a new kitten-cuddling and coffee fundraiser that my daughter, my former employer from ProJeCt and myself are brainstorming.
So I guess I’ll have to revisit this tomorrow and introduce you to our new kittens and tell you about my evening with my friend and former nail tech Beth at her home with her friend Barb and eventually the teenager and my estranged husband. We played Cards against Humanity and I drank four very stiff pineapple juice and rum drinks.