Final step in my medical journey?

Tuesday, May 31, 2020.

It’s been about a year. It’s the end of my birth month. In some ways, I started this journey in December 2020 when I contracted Covid-19.

I remember standing in the Bizzy Hizzy warehouse, at 11:45 p.m., placing the last extra small clothing item in my pick-cart. I leaned against a nearby pole, my joints all screaming.

And I thought to myself, “I’m one month into my job at Stitch Fix. Maybe I can’t do this. Maybe I’m too old and my body can’t take it. Maybe I can’t do anything anymore.

I was chilly that night, and it was December in the warehouse, so I didn’t think anything of it. Until that moment. Leaning against that pole almost too weak to stand.

I was sweaty. My hands were clammy.

I had a fever. The system at work — the nurse, the temperature checks— had missed it because I normally run low. My fevers don’t numerically look like fevers until they are very high.

And in that moment, I released a breath of relief.

I was probably the only person in America grateful to suspect that I had Covid-19. (And I did.)

Because Covid-19 was easier to deal with than the prospect that I might be too disabled to provide for myself.

I would have to read these blog entries, check my medical portal and review my podcast history to tell you the exact journey of the last year and a half, and if that interests you— I’m considering writing a memoir (Upright! Gravity is a Harsh Mistress). My husband thought of the title.

I listened to disability podcasts (such as A is for Abled, Disability After Dark, Stompers in Love and various titles from the BBC) while working at the Bizzy Hizzy as I grappled with my own identity. Am I disabled? Do I pass as normal? Do I make my body do more than it can? Or should?

These questions, and recovering from Covid, and comorbidities like anemia and weight gain, as my spine and hip problems started to bother me more and more, led me on a journey to recommit to fitness and to gain more knowledge and collect doctors that would be an asset to my medical team as I age.

I have blogged about that entire journey— from my first session at Apex Training to finally finding a local doctor that understands cerebral palsy.

She expanded on my previous diagnosis of spastic cerebral palsy and added the term diplegia, which means it only impacts my legs. She frequently told me that I self-correct very well and added that while my gait was inefficient, it was functional and it was mine… so that makes it beautiful.

My new doctor is a neurological physiatrist— with her initial training in spinal bifida which she then expanded into seeing cerebral palsy patients.

She listened to me, reviewed my x-rays with me, gave me an exam, watched me walk, and studied my shoes as if she were reading my fortune with tea leaves. She described my walk as her fingers traced the wear on my shoes.

She also complimented my “taco Tuesday” days of the week socks.

My recent disability leave from work has improved my fitness and my health greatly, so I had no pain to report. But I told her I was looking to educate myself and to know what doctors to call and when.

And she told me a lot of things I already knew— not to let myself get too tired, for one. And that I need to continue strength training and improve the mobility in my ankles (and today at Back in Line Chiropractic, Dr. Jensen gave those puppies a work out).

I also knew and understood the domino theory of my own health, that injuries like what happened to my ringer finger impact all of me, but she explained why. I’m not sure I have this 100% correct (just like I previously misused hemiplegia, which refers to right or left side of body vs. upper and lower body), but she said my brain tells my lower half not to do anything until given a signal, but as a person, I start walking (for example) and now my legs and my brain aren’t working together.

Because of this, if anything goes wrong in my body— even something as minor as constipation or an ingrown toenails— my entire system can go haywire. So, if I’m having issues, I need to examine my whole self. And if I don’t find the problem, I need to call her.

Cerebral palsy is a static condition, meaning it doesn’t get worse, but as I reasoned earlier, the decades of wear-and-tear on a body not used in the mechanically proper way can create new issues.

So what are my options if I find myself in decline?

  1. First step would be to use muscle relaxers. I currently have a prescription for flexeril, which doesn’t seem to do anything. She would try Baclofen or Tizanidine next.
  2. If that doesn’t help, she would inject Botox into my muscles.
  3. And if I still had issues, she would move to bracing.

But as of right now, I have good muscle tone and self-correct so she doesn’t want to mess with things.

I feel like I found the final link on my medical team.

I am so relieved.

Neurology Update

So, I just received a phone call at work from my neurologist’s office. They want me to come in at 8 a.m. Wednesday, because “my” insurance company denied my CT scan.

I use the quotation marks because this letter comes from the insurance company that provided my Medicaid. I received Medicaid four months into my unemployment in November 2020, and I accepted my position at Stitch Fix one week later.

Stitch Fix provides medical insurance as of day one of employment.

To the best of my knowledge, I used Medicaid for one visit to my primary care physician that happened to be scheduled during that week.

I filled out the required paperwork to alert the county assistance office that I had a job, and insurance. I received some paperwork that implied my Medicaid would expire at the end of the year.

But as of January 1, 2021, it still seemed to be hanging around as a secondary insurance policy. Even though I never saw them pay for anything, and my primary insurance was a high deductible plan.

In Spring of 2021, I received a notice that I need to reapply for my medical assistance or it would be canceled as of 8/31/2021. I threw the paperwork away— because I don’t need Medicaid.

But the hospital and the network of doctors associated with it still insisted I had it.

So I thought maybe it would disappear December 31, 2021.

And December 28, 2021 they write the letter denying my CT scan that I photographed and posted above. I receive it around January 5, 2022.

To refresh anyone’s memory or for new readers— I have cerebral palsy but I didn’t really receive medical treatments or interventions as a child, which leaves me now trying to understand my body as it ages. I am approaching my 47th birthday.

My neurologist appointment was December 23 — you can read about that here (and more here) as it was my first ever. I now have an official diagnosis on file with my doctors.

The neurologist’s office scheduled me for a CT scan of my brain on Dec. 30. I was really excited for several reasons: I have never had any CT scan; I am very curious to see what brain damage will be revealed; and my deductible was paid for 2021.

But the office canceled it two hours before the procedure because the insurance company neither approved nor denied the claim.

I find out today that Cigna has approved the scan but Medicaid did not and the neurologist’s office didn’t want me getting a surprise bill.

They canceled a procedure that would have cost me a 10% copay, and now I will pay for it out-of-pocket as my deductible is $1,750. And my HSA will be empty as the teenager is getting hearing aids Friday.

In other physical related items:

  • Yesterday I experienced a lot of steady pain at work. By the end of the day, I couldn’t even reduce my symptoms and sleep was uncomfortable. I blame the fact that they changed our break schedule and we had our last break at 1:50 — leaving us to work three hours without a break, the last three hours of our ten hour shift.
  • I finished yesterday at about 80% of the daily metric.
  • Today, I had a high point at 3 pm of about 95% — and finished the day at 90%.
  • My back today felt better, pain at let’s say 4 instead of 8. But my toes on my right foot burn about 10 minutes out of every 90.
  • Interesting side note, I think the intense back pain involves some nerve activity as when my pain increases I can’t feel my need to urinate. Not at all. So that’s fun.
  • And the Mirena is doing it’s job. But for the first two months, I spotted most of the time. I think I had two days each month where I wasn’t spotting or bleeding. I think that has finally ended. My body seems to act like my body.
  • But today, for some reason, my right breast aches. Kind of like milk let down.
One of my orders today was 8 pounds of jeans

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:

Not a job for neurology

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?

Tomorrow it’s back to the chiropractor.

The Physical Therapy Phone Calls

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.

I go see them Thursday morning.

Opinion: Representation of Aspergers in Season Two of Chicago Med

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.

Fuck that.

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?

Three days home alone: the teen leaves me with the menagerie and I continue my quest

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.

Many more of these to come.

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.