Tag neurology

Good news. The aneurysm is nothing to worry about.

Angel Ackerman Leave a comment

I have no doctor appointments, nor tests, for the next month. It’s been three months and a lot of professionals later… with no official diagnosis but many clues. And I’m okay with clues. The tilt table study, as I thought, came back normal so I don’t have POTS and that is good news. My symptoms share some similarities with POTS, but I’ve never fainted so there’s that. Smug little doctor man was right, but he could have been less dismissive about it.

The lovely hatch pattern on my shoulder from my fall Monday is healing nicely and I don’t seem to have any more permanent damage from it. So that’s more good news.

I’ve been keeping up with my metrics at work, but my body has felt very awkward about it.

Today I am scheduled for a home visit from Susquehanna Service Dogs, and the teenager has been working hard not only on decluttering the house but also cleaning. I intended to help more, but I came home from the neurovascular appointment yesterday, canceled the gym, took a shower and went to bed without dinner.

I slept more than nine hours. And I noticed at the doctor’s office my temperature was 98.3, which is actually high for me as I am usually around 97-point-something. I checked my watch and sure enough my temperature has been steadily creeping upward, but so has the sunshine and heat outside.

Regardless, I wasted last night by spending it cuddled with Louise instead of accomplishing anything. I knew I should have stopped for coffee on the way home.

The neurologist I visited yesterday was located in the Doctor’s Pavilion at the hospital, recommended by my neurologist/physiatrist, to consult with me about my aneurysm. It was a tiny office on the sixth floor of the building with a list of doctors and physicians assistants that had to be thirty people long. The waiting room was also small, and like a good patient, I arrived at 1:50 p.m. as they asked me to be there by 2 p.m. for my 2:15 p.m. appointment. And by some strange coincidence, I found a very convenient parking space.

I had also completed all my paperwork, confirmation and check-in online. They had me in the waiting room by 1:52 p.m. And despite the fact that I had a very compelling brand new ebook on my phone, The 8-Ball Magic of Suzie Q by Jody J. Sperling, I was way too exhausted and a tad too lightheaded to read it.

Instead, I people watched. As the small waiting room grew more and more crowded. A woman in a wheelchair that didn’t fit in the actual seating area. Her caretaker. A thin woman with bronze skin who didn’t look up and had a cane. A woman with bold tattoos who argued in Spanish with a burly man who spoke on his red iPhone once she left for her appointment. (She appeared to be the only one close to my age.) A large African American man whose accent revealed he may have had cognitive issues either from a congenital disability or a stroke– I was in a neurologist’s office waiting for a neurovascular assessment. And several more who arrived as my name was called. It was very claustrophobic.

My medical assistant introduced herself as Franky, while her nametag revealed her full name was Francesca. She said she loved my name and said it was her brother’s name. My name harkens back to my birth story, so I always experience a pang of weird sensation when someone mentions it. It’s a mix of gratefulness to be alive and also a split second decision of what do I keep to myself and what do I share.

I usually keep to myself.

Franky warned me that my providers were running behind and that they probably would not arrived until 2:40 p.m. and if they arrived later than that, she would check on me. I spent the next half hour staring out the window, and studying the models of spines. Without touching of course.

By physician’s assistant arrived at 3 p.m. and used a lot of big words, showed me an image of my aneurysm (which is on the vessel between my left eye and my nose) and explained our plan of monitoring this tiny balloon of blood in my brain. (My phrase, not hers. I don’t know her big words.)

As long as the right side of my body doesn’t suddenly experience numbness or other hemiplegia (that’s my word– I know that one from cerebral palsy lingo) or as long as I don’t start experience the worst headaches I’ve ever experienced in my life, I’m good. With a less than 1% chance per year of something happening. But should either of those things happen, I am to visit the ER immediately.

After a thorough neurological exam, I headed home, leaving the hospital around 3:30 p.m. I don’t normally drive the highways at that time, and since the Lehigh Valley has so many medical professionals it seems the 3 p.m. time has a ridiculous amount of traffic. And I still can’t believe the number of people who cannot merge. You can tell from their driving that they are terrified.

Here’s hoping I can stay awake past 6:30 p.m. tonight.

Festive Friday’s life (and cerebral palsy) updates

Angel Ackerman 1 Comment

My traveling companion M is in town so I stopped very briefly to say hi. He’s staying at a hotel between Sheetz and Wawa, and he’s never been to either, so I have a Pennsylvanian duty to educate him.

His hotel has a few artisanal touches in an otherwise uninteresting and rather lackluster environment.

I received a message from M last night while I was at Barnes & Noble at the Noble Quills poetry open mic where Darrell was featuring. (See YouTube video below.)

My most-exhausting-work week ended with a few lessons. I noticed that no pair of shoes I own will alleviate the foot pain I am experiencing, though experimenting with different tape/toe separator arrangements I can select the type of pain I prefer to experience. With this in mind, I have purchase three different varieties of toe separators from CVS today. ($22 worth of merchandise that I got for $15 and I paid with my HSA debit card.) I achieved 101%, 101%, 94% and 100%.

I had my follow-up with the neurologist-physiatrist today. The Baclofen appears to help my stiffness, and though I do experience a weird jerky stiffness at the end of the day after I sit and then get up, I have not fallen and I seem to move easier. She filled out my accommodations paperwork… so hopefully I will get a share of the easier work. I offered several ideas of how to provide easy accommodations. (I shared the same letter with my doctor and Stitch Fix.) The doctor remarked that my gait had noticeably improved and I think she laughed when I told her I preferred walking in cowboy boots because of the sound and the feel. (She was wearing a mask, so I can’t be sure.) She also seemed to make a quiet noise of approval upon the mention of a service dog.

I had an hour between appointments and in that time, I hung out with The Teenager’s dog (F. Bean Barker). It was Festive Friday at work so I wore my favorite “Fleece Navidad” Christmas sweater.

I then met with my therapist. He was one of three people who served as references for my service dog application and because I mentioned I had a therapist on my medical team, they sent him a psychiatric evaluation to fill out. He wanted to review it with me, because he wasn’t sure of the weight of his role in the whole process. He was much relieved to hear that I had had the in-person interview last week (read more about that here) and that I had received the email an hour earlier stating that my home visit and canine therapeutic evaluation would be scheduled early in the new year.

So I said I would approach the paperwork as if they just wanted to know if I was stable enough to care for myself and the dog.

By the time I returned home from that appointment, the UPS man had left a special package on my doorstep. It was Larry Sceurman’s debut novella, The Death of Big Butch. And some other books from Parisian Phoenix Publishing. As is my custom, I did an unboxing on film.

Buy Parisian Phoenix books from Barnes & Noble here.

The Teenager and I did some chores around the house and loaded up the car with the dog and the books and made deliveries: to the author (where books were signed) and to people anticipating the release. And, because Larry lives near a 7-Eleven, the teenager needed to stop for a Mountain Dew Slurpee.

She happens to have one of her new sweaters on from her latest fix.

And the joy of bringing Larry his books warmed my Grinchy heart.

And watching Larry decide how to sign his books, debating which of his signatures should be his author-specific nomenclature, also had an impact. I’m proud of his book. I’m proud of the product the Parisian Phoenix team made– and I’m told the effort and the quality of the book are more than Larry had ever expected to see from his stories. After all, when he pitched his stories to me, Larry had figured he had a short story anthology to offer the world.

And poor Larry, I told him he had a novella in Big Butch, and still had enough stories for the anthology, and that one of the longer anchor stories in the anthology really should be a full length novel. He’s stuck with me for a while.

Barbara gave us some cut-out cookies. Buttery, not thick not thin, with a lemony or vanilla-y hint of something so scrumptious. Roll-otts as my Pennsylvania Dutch in-laws would say.

Larry and Barbara also gave me a large bag of cat toys, which we gave to foster Khloe for right now. She’s protecting them and sleeping with them like a dragon hoarding treasure.

Maybe I’m naive or egotistical, but I really love the craft model of publishing I’m creating– including my authors in every stage of the process and creating a book we all believe in, from the author to the publisher, the artists to the designer. I never thought publishing could empower, but I’m learning so much that I never realized I wanted to explore. Talents always feel better when you share them.

Almost there check-in

Angel Ackerman Leave a comment

Good morning. It’s Thursday morning as I write this. I have hit more than 100% at work all week. I’m exhausted and behind at chores at home which appears to be my natural state these days. On top of that, we have no caffeinated beverages in our breakroom at work due to a countertop upgrade. I think we’re all about to mutiny.

Yesterday, The Teenager did a Dunkin run for our lunch break and made me and several of my friends very happy. Today, we all pledged to bring Thermoses.

I called my podiatrist on Monday and left a message with his answering service. According to the service, they should have returned to the office Tuesday afternoon, but I have not received a call.

I have been experimenting with shoes and toe arrangements. This had yielded less pain in my foot. I have found using the toe separator between my big toe and the next toe and taping both toes together has decreased the workload of the troublesome toe. My data might be too preliminary.

The pain from the neuroma only acts up about twice a day now. When exactly depends on which shoes I wear. And what type of pain the rest of my body experiences also connects to the shoes. Do I want generic foot pain? Hip pain?

Big Butch officially releases tomorrow. The print copies have left the printer, Amazon (and probably Barnes & Noble) will accept preorders, and the ebook is live on Kindle.

My diet has been a mix of trash and veganism, thereby counteracting the recent weight loss I had when I initiated eliminating potentially inflammatory foods from my diet.

This weekend I hope to edit the Parisian Phoenix website and take kittens/cats to the adoption meet-and-greet, while the Teenager works on the downstairs bathroom project.

Tomorrow is my big appointment with my absolutely amazing neurologist/physiatrist where she will fill out my official work accommodations form. Speaking of which, the hospital just billed me a second time for the intermittent leave paperwork I asked her to file.

And I still haven’t rescheduled last week’s chiropractor appointment.

Oh… and the Teen got a fix yesterday. Unboxing here.

The Highlight Reel of the Ides of November

Angel Ackerman Leave a comment

It is 6:45 a.m. I went to bed around 11 p.m. last night, after a long conversation with an old friend whom I haven’t had a chance to truly connect with for years (and while we “caught up” last night as if no time had passed, it didn’t feel like the happy reconnection I thought it would), and the dog woke me up at 5 a.m.

At 6:15 a.m., after loading the dishwasher and starting laundry and trying to snuggle dog into a nap with me on the couch, I finally made coffee figuring sleep would not return.

Now, the dog is gently snoring on the other couch.

I definitely would prefer to be a cat versus a dog. The dog seems an anxious and needy creature, where the cat has an attitude and most of them act like they have their shit together.

I haven’t written much this week because my physical and emotional struggles have left me in a survival mode, and upcoming changes at work have me concerned for my long-term success at mastering my cerebral palsy and achieving work/life balance that includes leading Parisian Phoenix Publishing.

And I’m okay with these struggles, they mean I’m human and I’m alive. And I guess I want other people to know that in an age where we “social media” ourselves to death and we’re exposed to worldwide turmoil and glamour, that I’m here with you in the trenches, surviving.

So, Wednesday turned out to be a hard day. We received the official word that starting some time in December, our performance metrics will be judged daily instead of by their weekly average. And that we can miss the daily minimum two days a month. I had already turned up to work crying because of stress in my everyday life. (Which only my friend in the parking lot saw. Speaking of my friend in the parking lot… she needs a nickname as she will play a larger roll in this blog post and hopefully appear more. I think I shall call her Southern Candy, because her roots are in the Southern United States and she likes to pass out hard candy.)

Now, after my neurologist/physiatrist appointment on November 9, (see Is it Time for Botox), I filed for Intermittent Leave from work which would allow me job protection if my work missed increases due to complications from my disability or more doctor’s appointments. I now have a lot of doctor’s appointments. With recent changes at work, I seem to have triggered a couple neuromas in my right foot, which my podiatrist shot with cortisone (See The Stabby Toe and the Challenging Gait), and unbeknownst to me, as I had never had cortisone to me, this transformed my good leg into a second bad leg.

It absolutely removed all my pain, but — and this is probably why my podiatrist asked when I planned on returning to work and seemed satisfied that “tomorrow” would give me adequate time to recover– it made it impossible to control and rely on my right leg as I typically do. BUT I can also say it made me acutely aware of how I use my legs and unfairly make my right leg carry more than its share of the movement burden which is why my right hip has issues.

My left leg “scissors” causing my left knee to pretty much cross in front of my right leg when I walk (and yes, that is as awkward as it sounds) but now my right foot drags, causing my toes to curl under my foot. I have compensated for this change in walking pattern by buying cowboy boots. Not real ones, but ones we sell at work: the Kassy boot by DV by Dolce Vita. (Unboxing on YouTube here.) They allow me to hear my walk, feel my foot, and not step on my toes.

At our weekly meeting, our supervisors announce the metric change. I understand their logic. They plan workloads daily so they should measure results daily, simply put. And as this change rolls out, I’m confident the company will “do the right thing” in implementing it. I’ve been there two years, so they have investment in me as I have investment in them.

On my good days, I average 101% to 103%. But on my bad days, without some extra support that minimizes my physical struggle, I average 95%. So with the weekly average system, I’m still a “fully performing” employee. On a really bad day, which happens ironically about once or twice a month as their new system will allow, I give everything I can and sometimes only hit 85%.

Now, unlike some of my colleagues, I am also on a work roster that has changed shifts twice in the last calendar year. Yes, I have had three different work schedules in the last year: Monday to Friday, 3:30 p.m. to midnight; then Sunday to Wednesday, 6:30 a.m. to 5 p.m.; and Monday to Friday, 6:30 a.m. to 3 p.m. All very different.

Add a neurological condition to that and it’s hard to adapt. When they offered Voluntary Time Off on Wednesday, allowing us to leave three hours early, I took it. My emotional state would best be labeled as frazzled and my right hamstring had started bothering me, probably because it felt like my right leg was a useless tree trunk.

Here is the happy part. The kindness part. The part where the light shines from one person to another. Thursday morning, I get a text from Southern Candy at 5 a.m. “Stop by my car when you get to work.”

She gave me a cat figurine. A cat in frilly dress with pink bloomers, staring into a goldfish bowl that even included a goldfish.

“I know you had a hard day yesterday, and it made me think of you.”

I brought it home and placed it on one of my Parisian Phoenix bookshelves. A place I can see from my workspace at the table and/or when I’m having dinner.

To skip ahead, I’ve been thinking it’s time to record and place a request for permanent accommodations at work. By Friday morning, when one of my colleagues said he’d like to help me out with the easier work but too many people had doctor’s notes, I decided to email my supervisor. So he and I now will try to make that happen. Around the same time, my neurologist’s office called to see if they could move my December 6 appointment to December 9. The times they offered overlap with a preexisting doctor’s appointment I have.

And my intermittent leave needs to be certified by December 9. I returned their call, expressed my regret that those appointments would not work, and asked the person on the phone to please leave a message for the doctor and her nurse that my employer had sent paperwork and that I would have more paperwork and that I would gladly pay any associated fees.

I also wanted to mention I am trying to eliminate inflammatory foods from my diet, but that can wait until I see her. I am wondering if I should request to work with a dietician and get a new set of bloodwork to check not only the standards like iron and cholesterol but also vitamins like B12.

I’ve done really well not stress eating in the ten days since I’ve seen her, eating vegetarian baked beans at work yesterday while my colleagues ate piping hot pizza. My weight is slowly dropping.

I’ve eaten no junk food in the break room, choosing fruit leather and yogurt over Cool Ranch Doritos and fancy fruit snacks. I even reduced my caffeine intake. Yesterday for dinner I made thick egg sandwiches with eggplant, mozzarella and extra sharp cheddar on my favorite multigrain buns and a little chipotle mayo and avocado hot sauce. One for dinner and two to go in the freezer for work lunches this week.

Although I know my perceptions are faulty, I feel like my only success this week has been with Andrew at Apex Training. I got my gym sweatshirt, and the dog immediately jumped on me and coated it with mud so I don’t have a decent selfie… yet. But these guys at the gym have been a lifesaver. Andrew works so hard to meet my needs and come up with innovative exercises to challenge me and train my muscles to cooperate. I did a seated shoulder press this week with 30 lb dumbbells, which ignited my inner strength as my lower body becomes more useless.

I discussed my hamstring troubles and we did some balance exercise yesterday. Andrew thought I was going to stand on the balance trainer and hold a weight on one side to create instability in my stance. Then, he saw me try to stand on the ball. And we opted to practice that first.

Finally, I asked The Teenager to check on Foster Kittens Jean-Paul Sartre and Giorgio in their habitat at Petsmart. I will see them today but it brought my heart joy to see that they are doing fine.

Work on the Cortisone Foot and Service Dog Update

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The cats woke me up at 3 a.m. today and perhaps it was the cortisone shot but I could not for anything get back to sleep. But when I got up, the foot looked good except for some cute round bruises and I didn’t feel anything but stiff. By 4 a.m. I was drinking coffee and working on my NaNoWriMo word count for the day. And with all these photos I am taking of my feet I am sad and embarrassed that I haven’t had a pedicure since my friend left the business.

I got to work jittery from too much coffee and optimistic that I would slay the day. Until our 9:30 break, I was at 100%. No pain, though occasionally depending how I stood on my foot I could feel pressure or as if a bubble were on the bottom of my foot. By about 12:30 (which is after six-plus hours of standing) I had some ache in the toe but no nerve pain.

But my numbers had fallen to 89%.

You see, recovering from this means I know have to learn how to move my body in an efficient way again. And since I’m exhausted and trying to reclaim my performance, the combination is leading to some jerky movements that are stressing my back.

Meanwhile, my neurologist/physiatrist’s office called. They wanted to move my Friday November 11 appointment to Wednesday November 9. I asked if they wanted the same time. The nurse asked me if I wanted the same time. I told her that it didn’t matter I just needed to inform my employer.

Turns out that the doctor was not scheduled to be in the office that day and planned to come in just to see me. I told the nurse that wasn’t necessary as I had seen my podiatrist and now had a foot full of cortisone which was providing a perfectly adequate temporary solution. She insisted I needed to be seen. So I’m going in at 3:30 after work.

I forgot I had a chiropractor appointment at 3:45 that day so I moved that to Monday, November 14 because I’m not about to call the neurologist back and make her change the time.

They offered early dismissal at work today, so when I went into the system to cancel my time off for November 11, I added paid time to the day I took off yesterday and took the early out. I wanted a nap.

Fosters: Jean-Paul Sartre (almost 4 months), Giorgio (almost six months), and Tripod Louise (five years)

But when I got home…

These guys had other plans. (See photo of cats cuddling on me.) At one point, J-P didn’t realize the hand petting him was mine and he freaked out and attacked my arm as if he were defending my life. Until Louise snarled at him.

And in other news, I received an email from Susquehanna Service Dogs:

“Your application has been reviewed by the Partner Selection Committee, and we have added you to the list for a preliminary interview…”

Another form to have a medical professional fill out, this one attesting to my psychological health.

“… Our preliminary interviews provide an opportunity for you to ask questions as well as a chance for us to get to know you better. It will include two staff members, a volunteer and a demonstration dog that will be used to show you the ways in which an assistance dog can assist in mitigating a person’s disability. The interview will be held at our facility.”

So that’s exciting.

More on the service dog process here.

The Toe Update

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I asked for a table on the left today, because my body was so stiff, my hip sore and my toe felt like someone forced a knife through it and used it to anchor me to the warehouse floor. It happened about every hour, when the clock struck 20-something for some reason and lasted about four minutes as the pain slipped up the inside of my calf and hit my knee.

By 9 a.m., I had had enough. Interestingly, whereas yesterday I did 85%, today I believe I did 95%, and at 9 a.m. I was still about 97%. The left table had alleviated most of the stress on my hip.

I called the neurological physiatrist, and they could see me in April. The person who answered the phone would leave a message for the doctor, and her nurse would give me a call. Now, for the record, I missed that call which was around 4:45 p.m. because I was in an appointment with my chiropractor. But it looks like they may see me next week.

I also called my podiatrist, whose office manager scheduled me for 2:15 p.m. Friday and asked if she had a cancellation if I could come tomorrow. I said yes.

Around this time, a form went around via email asking who might be interested in a day off tomorrow. So I filled out the form.

I rushed home to take off my shoes and socks, and the toe looked fine. Well, red and a little swollen but not as bad as it felt. When I poked my toe and bent them all, my sore toe throbbed for several minutes afterward. So I elevated it.

I could feel the stiffness in my body and the phone kept registering asymmetry. I was very much looking forward to my visit with Nicole Jensen of Back in Line Chiropractic and Wellness Center. Even lying on the table, it felt like my right hip was higher than the other. And when she put her hand against it, she verified that it was. And she pushed on it, like her palm was kneading bread. But in one motion, not back and forth. Okay, maybe the analogy is no good.

We both agreed that the toe thing needed to be sorted out, and that skipping tonight’s workout with Andrew might be best. Nicole manipulated my toe gently, and asked what hurt, and since nothing really bothered me at the angles she was working, she started adjusting my toes. They made some funky noises.

I also feel two inches taller and as relaxed as I can get when she gets done with me…

The predominant theory of what is happening: (according to Andrew, myself and Nicole) I had some intense turning inward of my left leg this week, which may be in part because of a 5-day-a-week work schedule when I’m used to a 4-day schedule in two different jobs versus just one now. Add this to the fact that my table is on the right, forcing me to constantly rely on my right side to move shipments, stand on tip toe to grab boxes and twist to get clothes. When my left leg twists, my right side compensates. And all of this might have caused me to stand forward on my toes more. The added pressure and their curvature made them rub and irritated them and maybe some nerve pain is resulting. And maybe a blister. Or not. Who knows?

But a year ago, I would have horrible pain and difficulty moving. Around the beginning of the year, I started falling. That makes me want to investigate and not take the chance that this toe could start the downward spiral all over again.

Unlike that magic splinter I got. But that’s an old story. Read it here.

Let’s hope the podiatrist has some ideas for prevention and relief.

Final step in my medical journey?

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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

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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

Angel Ackerman Leave a comment

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

Angel Ackerman 3 Comments

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: