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

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:

Halloween 2021

As I write this, I am mourning the loss of having finished The Night Shift on Netflix. I am imbibing some generic strawberry lemonade energy drinks strongly laced with too much gin. I am craving potato chips, cuddling my cat Fog, and nursing my injuries from the day.

But perhaps I need to back up…

The photos above summarize my Halloween.

At 11 a.m., we had an appointment for Danu and her babies from the Celtic Pride— Aîné, Baile and Brigid and our newest foster, Georgie, to meet our foster cat godmother for shots, flea treatment, dewormer and microchip and OH MY GOODNESS was Georgie dramatic.

Then the teenager had a commitment to walk in the local Halloween parade and she asked me yesterday to walk with her as she paraded in costume. I will do anything my daughter asks.

And half way through the parade, I fell flat on my face to the collective gasp of the crowd. I rise, keep walking, hip and knee in pain. But I keep going.

#f*ckcerebralpalsy.

I finished the parade. Outside the teenager’s high school. Her father and herself know that the fact that I finished the parade did not mean I was okay as I have been known to do things like walk a Chinese buffet with a broken ankle.

My knee is swollen. I tripped over a mirror late in the day that struck me in the tender parts.

My back hurts.

I am craving potato chips as my body adjusts to the Mirena.

My princess, the male cat I jokingly named Fog, is curled up next to me. He is my baby.

The teenager’s dad came over and they carved pumpkins and I typed some of a manuscript for the identity anthology. We handed out candy and even the dog got to enjoy trick-or-treat.

I ordered Wawa for dinner— the teenager’s favorite ranch Mac and cheese, chicken Caesar salad and pierogie quesadilla and Blizzards from Dairy Queen for dessert.

Tomorrow the teenager is consulting a cleaning woman to take some of the stress off me.

Friday update: some health news and some silliness

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.

Khloe

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:

Poop in a can

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.