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

Simplify: a health update and a Dunkin review

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.

See the video here.

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.

Rebuilding

My blog entry Monday focused heavily on the decline of my mental and physical health— and how I attributed that decline to the death of my father on December 15 (three weeks ago today) and the stress that has put upon me, my family, and my routine. I also think I may have had a bout with Omicron pre-Christmas which may be part of why my body cannot seem to get appropriate physical rest.

I shared these things because these tribulations are key for the story arc; success and overcoming mean nothing without context.

And if you are someone fighting with similar discombobulation, you might find comfort in my words.

That post is here.

The last few days the pain in my spine has been increasing and my control over my legs is lessening. To walk requires more concentration and effort than I am used to. According to my iPhone, my walking symmetry was a mess yesterday morning. And now today, as temperatures plummet, my right knee has shooting pain.

I am guessing— and purely guessing— that my stress level is exacerbating the spasticity in my lower limbs making legs that can’t relax even more tense.

I haven’t been eating right, and with the lack of good food, I don’t take my vitamins. And when I do eat enough to take my vitamins… Well, I may have eaten half a Hawaiian Luau deep dish pizza from Little Caesar’s.

I cried with my psychologist yesterday in a long-awaited therapy session where he had to recount to me all my strengths while simultaneously making me laugh.

But this gave me the courage to call out sick from work today, sleep in and start the day with my Yoga cobra pose physical therapy sessions (and then take a much needed shower).

In waking up slowly, I had the opportunity to gently force my lower limbs into motion. Walking feels a little more natural.

I had a chiropractor appointment scheduled for Friday and they literally just called today to see if I’d rather come in today. They say it is due to the threat of inclement weather but I think they read my mind.

My last chiropractor appointment was at least two weeks ago, because of the holidays, and I wonder if something might be pressing on a nerve since my right quad is burning again.

And still no work from the physiatrist about securing an appointment or the neurologist about whether my insurance will allow my CT scan.

In other news, Hungryroot gave me a $96 credit for the box that arrived late, less than cold and covered with chemical goo. I didn’t anticipate an issue with them and I had already gone ahead and ordered a new box which arrives tomorrow.

My timid tripod foster cat Louise still insists on cuddling me whenever I am in or on my bed. This upsets foster cat Khloe who likes to believe she is my favorite.

And the dog, F. Bean Barker, ate some more of my furniture.

And I’m starting to think my cat fostering peer might be the only one keeping up with my Fashion and Fiends series as she posted a review on Amazon recently.

The teenager submitted a photo of her and her grandfather for the high school yearbook baby photos. This photo was taken at the West End Fair where my dad was participating in a tractor pull. It was the first major outing I undertook with the baby by myself.

Nan will be coming over soon so we can do some more work on Not an Able Bodied White Man with Money. Which we will do over turkey bacon and omelets.

Let’s hope the next few days bring my body and my mind some relief.

Welcome 2022

I can’t believe it’s 2022.

The teenager graduates from high school this spring. My baby is graduating in 2022. My baby.

It’s been a good start to the year.

My great grandmother was born January 1, 1900. So every year I think to myself that my great grandmother would be X years old. 122. She died in the 1990s.

I woke up at 4:30 a.m. and cuddled cats until 6ish. And believe it or not, I had a cup of coffee and starting doing chores— dishes, meal planning, updating the wall calendar.

The teenager came home from work around 9 a.m. She and her dad brought my favorite coffee, café con leche, and a Sizzli: pork roll, egg and cheese on a bagel. I have wanted to try the pork roll Sizzli for a while and it was delicious. 19 grams of protein and 400 calories.

The teenager and I went to the gym, where we goofed around during the official Boot Camp class. She loaded 188 pounds onto the leg press! When Boot Camp was under control, we started barbell squats and then Romanian deadlifts.

The teenager squatted 135 pounds! I made it to 115, but I wasn’t comfortable attempting 135. It’s too close to my body weight.

I love to watch her lift.

Then, I went to get Nan as we were scheduled to work. After we finished her writing, I prepared a chicken bone-broth soup and a cheese and pierogie casserole. My Hungryroot is stuck in transit so I rooted through my pantry to see what I could prepare. I had a long overtime shift yesterday and don’t want to spend my day off grocery shopping.

And then we starting reading the upcoming Parisian Phoenix anthology, Not An Able-Bodied White Man with Money. And meanwhile Joan is shooting more photos for Trapped.

I have received several beautiful messages today— from current and former colleagues at work, strangers on my blog, and my psychologist.

And another good thing— I got to laugh heartily with my daughter. Mostly at the expense of her dog.

And this is Bean trying to make friends with Khloe. Video

** P.S. I haven’t done my Cobra pose physical therapy. My spine is hurting. Is this why?

I had a good day

It’s been a while since I’ve had a good day. Sunday was okay, but then Monday was hard. I had to ask the question—

How can one day be so much harder than the day prior? Shouldn’t grief get incrementally easier?

I had either a mild cold or intense backlash from not taking my allergy medicine which really fatigued me. Combine that with my father’s death, no real Christmas to speak of and a formerly good friend reappearing Sunday night to gaslight me, again, hopefully for the last time.

I have been short-tempered, moody and a little meaner than usual. We all understand the reasons why, right? In addition to this very emotional stuff, I am still dealing with what is essentially premature aging in my spine and a new extended work day and a daily schedule that involves flipping my previous life upside down. I used to go to be at 2 a.m. and now my alarm wakes me at 5 a.m. That is, when cats don’t request a cuddle at 4:30 a.m.

The former friend in question here wished me a happy and safe holiday after ignoring me for the last three weeks— which unbeknownst to me was on purpose because I wouldn’t provide this person informative on a quasi-sorta date I went on. This person felt slighted and like they were not valued as a friend because I did not share something I felt was personal and none of their business (I told none of my friends) AND something that didn’t go anywhere worth reporting.

Apparently, this friend— who has a history of gaslighting— stopped looking at my social media, my blog, etc. Not once did this friend say anything to me.

This friend said nothing when my dad passed.

So, being at the end of my rope in every category, I lashed out.

I said mean things. The same mean things I have said to this person before and this person has responded not by addressing those issues but with points on how nasty I can be.

I’m wondering if I need to block this person. I don’t want to, because once upon a time this person was a good friend. But circumstances outside my control have changed my relationship with this person.

And I don’t have the emotional energy to placate people any more.

And in those same terms— I am so grateful for those friends who keep checking on me. You know, the ones that actually pay attention to what is happening in my life.

But anyway… my good day…

I am realizing more and more that stress makes my aches and pains flare. And I wonder if that contributes to the burning sensation in my quads and my instability.

At work, it quickly became apparent that I was hitting my metrics! I texted the teenager and asked if she wanted to have breakfast on my 15 minute break. She made a Dunkin run and brought the dog to see me.

I think I maintained 95% in QC all day.

Lunch was delicious — leftover chicken with vodka sauce and fresh broccoli, kale, and spinach.

And I got to style card, which I also got to do yesterday. It feels good to do something different and work in positions not everyone in the warehouse knows.

It just felt like a normal day, and I felt like me, and not a foggy me.

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:

Struggling to find a groove

Change is hard.

Sunday we arrived at work to learn we couldn’t punch in because engineering was upgrading the time clock system. I managed to ship 374 items in 296 packages as part of the Freestyle department.

And my dad— who has been struggling with Covid— ended up back in the hospital.

But then Monday rolled around and I was back in my home department folding clothes.

I was ready to try and excel as the change in shifts has been hard. The ten hour day is amazingly smooth, but getting up at 5 a.m. is exhausting — even if I go to bed at 9 p.m.

And then we changed software and the computers couldn’t keep up with the new system so everyone was working at 80 percent. Okay, I can’t prove everyone, but there’s a day shift woman who told me she always hits her numbers and yesterday she only did 108 instead of 130.

On top of this I had several fixes that I struggled to put in an extra large box and half way through the day the stats went down.

I am struggling to stay motivated and moving without my average time per fix being tracked, let alone no stats at all.

And then some guy drilled each of our table and attached new brooms and butlers. We used to share one or two brooms per valley, now we have about 20.

Many many brooms.

And around 2:30 p.m., a day shift peer was talking to someone who might have been a processing lead and she started hysterically crying for a good 20 minutes.

So I was very glad when yesterday was over. Not only was my back hurting, but my right leg is acting up again and I have intense pains in one of my right toes.

Then today started. My computer doesn’t have a keyboard or a mouse. Just a keypad. And the computer can’t “see” it. Lost ten minutes looking for a mouse until a lead stole one on my behalf.

One of my favorite second shift QC support people— we’ll call him Flying J in honor of the way he buzzes through the valleys with carts under his arms like wings of an airplane— brought me refixes! You know, the fixes that needed to be fixed and come on top of the cart instead of inside.

AND he told day shift that I liked them.

And one of the day shift support people came to see me and said she would bring me as many as she could. Then she paused.

“I don’t know how to say this without offending you,” she said.

“Honey, you can’t offend me.”

“I see the way you work and I see the way you walk—”

I interrupted her. “I have cerebral palsy,” I said. “And right now, my spine is bent the wrong way. I struggle to get the fixes out of slots 7 & 8.”

I was really moved. I am always touched when people want to help.

And today was our December employee luncheon.

Meanwhile, at home, the teenager did a ritual (at my request) for my father’s recovery.

After work, we took the dog for ice cream at The Spot.

Bean Dog eating ice cream video.

Physical Therapy Gone Wicked

Today was my third visit to St. Luke’s Physical Therapy at Anderson Campus.

I love them. I love the impact of physical therapy.

I am probably the perfect candidate to be in physical therapy for the rest of my life.

Today, though, my physical therapist introduced some strength building exercises that I would classify as difficult and a little wicked, in the best way possible.

My homework is to keep stretching my back opposite the direction of my retrolisthesis, especially by doing yoga— cobra pose 50 times a day.

Something is definitely working, so we’ll credit PT.

But my session today started on a treadmill which is always a challenge for me. It requires concentration for me. I have to think about each step and try to walk evenly and correctly.

After an eight minute warm-up, we did some Cobra pose/press-ups, some lifts (the kind where my belly is on the table and I bend my knee at a 90 degree angle and lift my leg from the table using the hip area) and today he slapped on ankle weights, some bridges, some one legged bridges, and a bridge where I hold and lift each leg up (one at a time of course) while keeping my hips up, and some hip stretches moving my leg while standing on the cushion.

It was an intense 30 minutes. So I treated myself to a free holiday blend coffee at Dunkin.

Now, I had a chiropractor appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center next. But I had enough time to run home and use the bathroom.

And feeling spry I hopped to the curb, fell, scraped up my hands and a knee, and apparently flung my phone half way across the neighbor’s yard.

But I arrived at the chiropractor on time and learned that not only is Nicole liking my progress, but she also is on chapter three of my book, Manipulations.

All in all, a good start to the middle of my weekend.

Day 3 of 10-hour day shift in the warehouse: Podcast reviews

(And a foster cat and teenager update)

This new work week is certainly moving quickly although each day I come home more exhausted. I’m hurting more once I get home, but I’m fine for the first 9+ hours of my shift. If you don’t know what I’m talking about read these:

Yesterday

Sunday

The teenager kept my car as the last two of our fosters who needed to be spayed went to Canyon River Run today. That would be Mama Danu and her tabby kitten Baile from the Celtic Pride.

She hoped to bake cookies for the platters Feline Urban Rescue and Rehab plans to distribute to the many vets who assist the organization. Her eighth grade boyfriend came over to lend a helping hand so she also taught him to make bread.

Meanwhile I just kept dreaming of an iced cold Coke Zero. And an interesting thing happened — I got to work and there was a 4-pack of 20-ounce Coke Zero bottles with a post-it note declaring them free.

I brought them home. My guess is someone didn’t realize Coke Zero had been relabeled in the same red as classic Coke.

Which my metrics tanked by the end of the day which had me chugging this at 3 p.m. break.

My 4 p.m., I was trembling and about to cry. Do. Not. Repeat.

I treated the teenager to dinner at Tic Toc so she could get her last pay check. We both ate too much.

I did my physical therapy exercises and took a hot shower. By the end of the shower my right leg was very uncomfortable so I took a low dose muscle relaxer and covered my leg, knee and back with CBD Medic’s Arthritis Cream.

One more day.

So now, as promised, let me offer some thoughts on podcasts. The teenager and I compared notes on our Spotify end-of-year wrap up and she thought she was impressive with 17,000 minutes since we started using the service in mid-year. I have 88,000+.

MY FAVORITE PODCASTS I LISTENED TO SO FAR THIS WEEK:

  • This one surprises me. The Ellen Fisher Podcast. She’s a very interesting person with her journey to raise her own food in Hawaii with her brood of plant-based kids and interest in all things calm and positive. I don’t really don’t know how I feel about her podcast — but I recently listened to her episode on Mind Change. It was an interesting discussion of neuroscience facts blended with alternative healing techniques to deal with personal trauma to heal the body of disease and mental illness. The guests on the show discuss their experience that illness, whether physical or mental, is the body manifesting trauma that the person has refused to acknowledge and heal.
  • The Daily. I often force myself to listen to the Daily even when the topics don’t interest me. This week I found myself pleasantly surprised by their coverage of Stephen Sondheim’s death.
  • Snacks Daily. Snacks Daily is a brief podcast from Robin Hood, yes the investment folks. It’s an economic summary of course, but it also provides humor and the business side of the news.
  • I finished Sh**hole Countries by Radiotopia. The American host on that show grapples with the possibility that her Ghanaian parents want her to move to Ghana. Enjoyable but also not what I expected. The host uses much of her platform to talk about her queerness and human rights.
  • The Shit No One Tells You About Writing. Very useful and broad tips about writing, critiquing and publishing.
  • Africa Daily just did a good episode on fistula. I found that a surprising topic. I’m impressed. (Though they did not mention the prevalence of female genital cutting and its impact on the rate of fistula.)

Other notables: Power Hugh Hefner, American Scandal The Lewinsky Affair, Operator, Against the Odds Rock Climbers Abducted.

And here is a video of Nala the Goffins Cockatoo: Nala harassing foster cat tripod Louise

Good night all.