So I woke this morning at a ridiculous 8 a.m. to a world smothered in fog and two foster cats (Khloe and tripod Louise) upset that I did not have time to cuddle.
I had a physical therapy appointment for an initial assessment at 10 a.m. and they needed me in the office by 9:45 a.m. to fill out paperwork— primarily questions about my confidence in my own balance.
Now this isn’t my first rodeo. This isn’t even my first physical therapy stint for back pain.
I was referred to the neurology physical therapy department because of my cerebral palsy.
The physical therapist asks me the typical questions — “have you fallen in the last year?” “I fall approximately every six weeks.”
We discussed my work arrangements and she liked my idea of alternating tables.
She determines that my right side is definitely weaker than my left side. But I can be treated for this at a facility closer to home.
She even calls the facility of my choice so she can make sure they don’t refuse to treat me. All while making it perfectly clear that she would happily do it.
But I am the only patient under 70.
And probably the only one without a walker or a cane.
My new physical therapy appointment is next Friday at 9 a.m.
I came home, ate lunch, and headed to my primary care physician’s office.
There, I spoke with a sweet, quiet resident with an Indian accent I couldn’t hear from under her mask. But she seemed very intent on discussing colon cancer screening.
She brought up a back brace.
I brought up muscle relaxers so my body would not stiffen up overnight.
And when she told my doctor, he said that she had a great idea. I didn’t tell him that was my idea, after I conferred with Dr. Google.
He thinks I should feel some relief with a month. Christmas maybe? Starting off the New Year right?
If you’re a regular in my portion of the universe, you probably know I’m struggling with some issues that might be described as middle-age or might be complications of a life with cerebral palsy.
I have been talking about this journey more in recent days but certainly rather frequently in the last six months or so.
Today, I finished talking to the last member of my medical team about my plan for my health and my future. That person was my psychologist. And it sounds like he approved of my plan.
So having spoken with everyone— checking their professional opinions against my fear of an emotional response to my disability— I sent an email to my physician outlining my questions and my plan.
I had an email back within the hour from my physician saying I could set up physical therapy and that I should come into the office for a follow up this Thursday.
My doctor’s office had no preference or guidance regarding where to go for physical therapy so I called the generic phone line. They assured me that I could go wherever I wanted.
I asked for a nearby hospital as that is where my blind friend Nan has physical therapy and I hoped maybe we could car pool. Don’t worry— I wouldn’t let Nan drive.
But when they transferred me the person that answered asked me why I needed physical therapy. I said that the x-ray showed retrolisthesis and arthritis my spine that could be a complication from my cerebral palsy.
As soon as she heard “cerebral palsy,” she transferred me to the neurological physical therapy office. But when they looked up my chart, it said “back pain.” And they don’t do that.
By the very very cheery person on the phone and I had a chat— and I asked her— are we treating my back or the cerebral palsy that probably causes the back issues. We both agreed it’s a good question.
She put me on hold twice to confer with the actual physical therapists and they decided to keep me.
When Grey’s Anatomy first came out, I gave it a chance— but the amount of gratuitous sex made it realize very quickly it was a medical soap opera. I’ve watched a couple seasons, but the characters always seemed immature and the medical side of the show seemed superfluous to the plot.
I loved ER, but only made it through season 11 or 12. This was before the Netflix days. But still my favorite medical drama was House MD because of the quirky central character and the difficulties the rest of the ensemble cast had dealing with him.
One of these days I should make a list of the medical dramas I have watched over the years and revisit some of them to share what I like about them.
But my current show of choice is Chicago Med, but I am losing patience with it as I fear the writers are “jumping the shark” more with every season.
The first season did a great job of establishing a wide range of characters from a wide variety of backgrounds.
And in season two, the writers introduced a new heart surgeon— a Black and (Orthodox) Jewish gentleman by the name of Dr. Latham.
As soon as the regular cast began to interact with him, I suspected he had Aspergers. He portrayed a certain type of rationality and difficulty with emotions and reading others. His approach to surgery was very routine based.
I liked the character— a lot. And he discovered his Aspergers with the help of the psychiatric staff at the hospital (which as a doctor I think he would have realized it before) but to see him digest this news was very rewarding.
But then he wanted treatments. And that upset me. Aspergers made him a great surgeon and a unique character. But because he lacked empathy with distraught patients and the nurses said he “creeped out” families, he wanted to, pardon my use of the expression, see how the other half lives.
And the treatments started to work. And I hated it. I hated the notion that a doctor was perpetuating the idea that people who are non-mainstream need to be fixed.
I’m not going to say anything more, because spoilers, but let’s just say by season 3 Dr. Latham’s Aspergers was forgotten and he contributes a valuable perspective to the show. And PS— in a mass casualty event, he rocks it with triage.
The show in Season 3 had a compelling storyline with Dr. Reese’s estranged father, which started as a really good dip into psychiatric issues, but then went over the top in not one but at least two ways. I hated the outcome.
And now in Season 4, I am seeing two storyline develop that feel more crime drama than medical and that’s not what I signed up to watch.
So now it’s a question of do I finish the show or abandon it?
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.