This is another in a series of posts about trying to learn about my cerebral palsy and improve life in my body in general.
As sometimes happen, I woke in pain. I took two Tylenol PM last night so the pain didn’t keep me awake though my cat kept trying to intimidate one of my fosters so that made the six hours of sleep I got rather restless.
I woke to an alarm at shortly after 8 a.m. as I had to be at a doctor’s appointment at 10:05ish and the office is 20 minutes away.
Today was the rescheduled appointment to get my Mirena IUD that will hopefully reduce my heavy menstrual bleeding and my back pain from menstrual cramps. I had another new-to-me doctor today, and this one had an amazing sense of humor.
She was also the first doctor to ask me, upon hearing I had cerebral palsy, if there was anything she needed to do or be aware of to help me. In my case, the answer is no. But if I had worse issues with my flexibility and lower limbs, this would be a good question.
This is my third IUD, although my first Mirena. So nothing unexpected happened during insertion.
There was a pinch here and there and the doctor told me to take ibuprofen for the initial cramping. And to be prepared for a period that might be weird for the next few months. Every woman reacts differently but I may see my periods lighten or even skip cycles.
I did experience some light cramping and spotting but nothing to require OTC painkillers.
But, once I got to work, my right leg seemed to be impossible to control with my quad and knee burning. My ankles also started to burn. My lower back just throbbed, regardless of whether I was twisting or standing still.
By the end of the night I struggled to reach forward or to lift the pile of clothes.
I only QCed 92 fixes. That’s almost 71% of goal. Now granted tonight we were in the men’s Hizzy for the first time ever. It took me 4.5 minutes to do fixes that in women’s takes less than 3.
And they have such nicely organized work stations with drawers.
While listening to my first podcast of the night— 60 songs that explain the 90s— i discovered that Weird Al donated the profits from “Achy Breaky Song” to the cerebral palsy foundation.
My British colleague asked why I’m not on disability. That made me wonder how bad I must look if she says that to me.
In good news, let me regale you as I drink my last pins colada lemonade gin cocktail, the teenager is very excited about the new soap dispenser she bought.
I did a thing and did a soft launch on a Parisian Phoenix podcast on Spotify. I thought my blind friend, Nancy, would like it.
Another piece in my understanding cerebral palsy series
Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.
That sounds vague.
But allow me to try and explain.
My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.
I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.
I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.
But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.
The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”
Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.
Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.
Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.
Things A for Abled pointed out (I have not fact checked these statements):
Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
People with cerebral palsy often develop arthritis in their thirties.
People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.
To explore A is For Abled, find their website here.
This is the second in what will probably be a babbling series of updates about the interactions of many areas of my life.
My new quest is to understand more about my disability— cerebral palsy— since my generation and certainly those before learned not to question these things. In the early to mid-twentieth century those who couldn’t pass as normal able-bodied people were institutionalized and parents of such children told to forget they ever existed.
I did receive a referral from my doctor to call the neurology office and explore this and I suppose I should put down the blog post and call before I forget. I wasn’t told to call a certain person so I am left with questions.
Does anyone in the office know CP? Like really know it?
Will this be a nice consultation or a medical appointment where I become an experiment?
Will I have the nerve to ask these two questions?
I did take the time to call, and I put on my “journalist voice” as my daughter calls it. I explain that I am a 46-year-old woman with Cerebral Palsy and while my medical team has done a wonderful job treating my body and helping me understand my physical defects, no one has ever explained the brain-body connection or what kind of CP I have.
And I emphasize that I want to understand so that I can age as gracefully as I am able, since some issues might reside in my brain and physical therapy won’t fix that.
A very nice person put me on hold. Time passed and with each minute I filled with fear. What if they don’t have someone? I chastise myself for the thought. It’s a neurology department at a major regional hospital network— someone should have some experience with CP.
But somehow, it doesn’t settle the fear. I think that’s another disability-related trait. Because some of us were taught to “pass” as able-bodied we don’t want to break the illusion and we certainly don’t want to bother anyone when obviously these medical professionals have real sick and injured patients who need them.
So while I was on the phone debating whether or not they just didn’t know how to help me or whether they just didn’t want to be bothered with the pesky person who had questions, I unloaded the dishwasher. And reloaded. And made iced tea. Because it took ten minutes.
And then all of a sudden a person from the hospital central scheduling answered the phone. Turns out I had been lost in the phone system.
After a charming conversation with the scheduler, and bidding her adieu hoping I have no major tests in my future that require her services, I called the neurology office back.
I introduce myself again and say there must have be an issue on either my end or their’s as I ended up transferred to central scheduling. I repeated my cute little tale and the person answering the phone— it was either Megan or Lisa (the other was the lovely person from central scheduling)— said she’d send a message to the physician and when he found the right person they would call me back.
If I could back up for a moment, today the teenager left for her Cape May vacation with her grandmother, her father’s mother. They took my car and I am so excited for them. The teen has worked so hard to pay for this trip for her grandmother. She took my car so I’ll be home alone until Thursday night, caring for the menagerie and getting caught up on housework and hopefully putting the near final touches on my debut novel.
That’s a lot for three days. Tonight I plan on doing my yard work and tomorrow I need to gather some more of the teen’s birthday bomb as it is garbage night. I will also continue taking garbage from teenager two’s former room as she no longer reads my messages and left a room full of garbage, dirty dishes and about 30 empty cat food cans and a dirty cat box with cat waste also on the floor. I think I found all the partially consumed (human) food, and I also found some broken dishes and destroyed linens.
She did thank me for everything I did, but I’d still feel better if I didn’t have to clean up her filth.
There’s a heat wave browbeating everyone so I’m filling a lot of water bowls and passing out ice cubes. These new Feline Urban Rescue and Rehab tumblers make it easy to stay hydrated.
Yesterday before work I went for my follow up blood work. I always get blood work done before my annual physical. This year’s January blood work showed low vitamin D.
He asked me to start taking vitamin D, which isn’t unusual. Most people don’t get enough. He asked for a follow up in six months, and, because of my history of anemia (which was very severe when the teen was in kindergarten) I suggested he check my iron. My vitamin D has increased by 10, but I’m seeing that both D and iron are low/normal. We’ll see what he has to say about that.
And some fun stuff related to my previous blog post… I know it was long and rambling but I want people to experience the string of connections as I feel them. My stress regarding being on hold with the neurologist may resonate with someone. And two of my friends did point out some connected resources. I do love resources.
First, a good friend mentioned she used to read and reread the memoir/biography Karen by Marie Killilea (and there’s a sequel From Karen with Love) about a mother’s journey mid century with her daughter’s CP, when mom was told to institutionalize the child.
Another friend mentioned the podcast Achilles’ Heel hosted by a close relative. Alex Hooper on the podcast interviews guests on a wide range of topics from empaths to panic attacks encouraging listeners to tackle head on their own Achilles’ Heel. I listened to enough last night to know this will be fun.
I also had another Ginger coaching session, but that’s going to have to wait as my typing fingers are tired.
I don’t know whether I should apologize, explain my absence or dive right into this messy, stream of consciousness blog entry. Nothing new is happening but so many little things have brought joy to my life.
I had a great week at the Bizzy Hizzy. I spent most of my week in QC, and I hit 80% of the daily production metric except for one day when I hit 90 percent. But I just can’t seem to replicate that success. Last night I was in receiving inbound processing where I unboxed and received a pallet which included Democracy Jeans and Market and Spruce shirts. I caught a mix-up in tags. And I met a young man whose name is an abbreviated form of Jesus’ Angel because he was born three months premature as I was.
A few nights ago, I was listening to a podcast, probably Mayim Bailik’s Breakdown. They were discussing the ACE Childhood Trauma Test. So I took it. That was a mistake. It made me think about a lot of things— my past, my mental health, my relationships. I didn’t expect the results and I suppose in a way it was profound.
But as much as life may have had some dark spots, the foster cats sure bring joy. Hermes of the Greek Pride is already starting to bound with his new dad. (And even broke something expensive.) Louise the Tripod had a meet and greet with someone interested in adding a new cat to their household. And Parker and Extra Crunchy of ten little kittens are now playing and acting cat-like. Even Touch of Grey seems cheerful.
I picked up my new glasses, replacing my previous pair. I have abandoned my sexy librarian look and regained depth perception.
On another podcast, I heard a host discuss someone who wrote a memoir from her 20 journals. What a joke! He said 20 as if that number is impressive. I have been journaling for 30 years! I lost count after 100 volumes.
Speaking of journals, I splurged on a Silk and Sonder self-care planner/journal. It’s a monthly subscription and I am already anxious that it will stress me out. My regular journal is more or less a bullet journal now. I think another book that requires a daily check in might not be worth the pressure. And it’s $20/month. That seems expensive. More to come. Including unboxing and review.
Speaking of unboxing, I bought myself a Lite Brite in a moment of nostalgia. #NoRegrets
I never understood the popularity of podcasts. But now that I work at the Bizzy Hizzy, I have a lot of time to listen to something and they keep my mind busy.
This list got way too long for me to review each podcast, so for now it remains a list, but if anyone needs me to review a particular series… let me know in the comments and I’ll do so. This list is in no particular order.
Netflix is a Joke
Call Your Grandmother
Meeting Tom Cruise
Conan O’Brien Needs A Friend
The Hybrid, informative and funny:
The Daily Show with Trevor Noah Ears Edition
Business of Fashion
The Writers Almanac
Worth a look/listen:
Two Guys From Hollywood
Lehigh Valley With Love
Favorites, I get excited when the new episodes come out:
I wanted to write this last night when I got home from the Bizzy Hizzy but I had forgotten my phone charger in the car and wanted to preserve my battery.
After completing another week at Stitch Fix, (where I listened to the Indicator’s episode on “The Beige Book” from the federal reserve bank and learned about pandemic-fueled growth in the warehouse sector as I worked my new warehousing job performing inbound processing functions), I mixed myself a cocktail— Ciroc Vodka, coconut seltzer and bubblegum A-Treat. If you missed our taste test of the A-Treat, you can see it on You Tube here: Bubble Gum?
Speaking of podcasts, last night I listened to Trevor Noah joke about James Bond, an exploration of what happened to a Van Gogh painting that wasn’t a good Van Gogh (Carnation in a Vase, I believe) and rediscovered John Rosemond, the syndicated parenting expert columnist who is a self-described “renegade family therapist who believes in the Bible not psychology.”
Now, my estranged husband reminds me that he believes we knew that Rosemond was a conservative Bible-thumper, but last night hearing him in a radio program where he could speak his views freely was a “wow” moment.
I fully believe in his advice and agree with his philosophy that parents have a duty to prepare their children to be emotionally “sturdy” adults and that discipline comes when adults maintain an authoritative attitude that commands respect versus employing certain trendy (even when “research-based” methods). I enjoyed his podcasts. Out of five stars:
Podcasts have left me on the fence about a lot of hosts, but I have listened to people like football player/broadcaster Emmanuel Acho on his show Armchair Expert and learned many new perspectives.
Earlier yesterday, since teenager #1 is all cyber now, we spent lunch hour getting pancakes. It was the first time in almost 9 months we went out together and sat in a restaurant together/alone for a meal.
Nothing beats buttermilk pancakes in the teenager’s eyes and I had a magnificent eggs Benedict Florentine with tomato and garlic. I can’t wait to have it again.