Before I get rolling on this, my second blog entry for the day, let me show you Jennifer Grey (Dixie), the foster kitten who still doesn’t trust people much. Here she is, nestled in my sock bin and hiding from the world. And another photo of her with her brother Giorgio. Giorgio is the sweetest, quietest boy and looks gigantic next to her. But then, I think foster Jean-Paul Sartre, two months her junior, is also bigger than her.
So, I went to my specialty neurologist, the physical rehab doctor. Who laughed at my “Emotional Support Animal” t-shirt with the image of Animal from The Muppets.
She thanked me for being flexible and moving my appointment, and we started chatting. She agrees that some of my problems may have resumed with the recent shift change at work, and that Morton’s neuromas make sense after decades of toe walking.
My primary care physician had prescribed me Flexeril to try when my body felt stiff. My neurological physiatrist switched it to Baclofen and suggested I might take it up to three times a day when I feel stiff.
She was impressed when I showed off my quad stretch without leaning on anything.
But she studied my shoes and watched me walk and noted that my right leg is sliding more, that I’m not lifting off the ground like I should, and that my left leg scissoring is more pronounced. I also have less mobility in my right ankle than my left. She’s concerned about the increase in my spasticity and wants to see me again in a month.
And if my gait and spasticity doesn’t improve, I may need botox. In my hips. I’m not real keen on the idea of injecting neurotoxin into my system.
But my curls were sassy!
And then I came home and made sandwiches for my work lunches. With spinach and Hungryroot spinach artichoke dip.
Second, let’s celebrate that it’s sun-shining gorgeous out.
Third, let’s celebrate that that damn race between Dr. Oz and John Fetterman is over. Talk about two bad choices.
But it sure was exciting to take my freshly-minted 18-year-old to vote and even more exciting to hear her rant about international politics after she took my out to dinner.
M and I took her to Paris, Moscow and Kazan the summer she turned 12… and while it was a whirlwind visit, she had the brain-expanding experience I hoped she would have.
Because she knows how little of the world she’s seen, but also knows how little she can trust depictions of other cultures perpetuated by the mainstream.
I often wish I could see Russia how she sees Russia. I imagine it’s similar to my view, but also very different because I have seen parts of North and East Africa and even Yemen. But just that little pop of Russia six years ago altered her perceptions forever.
So, last night, The Teenager took me out to dinner— at Applebee’s, she loves the fiesta lime chicken— and we tried the Cheetos cheese curds and the slamming reindeer drink.
The cheese curds were strange, super greasy and very addictive.
Other foods I have taste-tested recently include the cookie butter doughnut at Dunkin which I mention here and some new flavors of delicious Blue Diamond almonds which we bought at QuickChek, video here.
I ended up calling out sick from work today— in part because of my hip and in part because I didn’t get to sleep until 3.
I see my specialist today, and my body is definitely stiff and angled but I’m not in pain. What a thing to say— but I wanted to be in pain to explain how I feel to the doctor.
I’m trying to motivate myself to give up sugar and do a 30 day elimination diet via Whole30 as I think reducing food-related inflammation in my body could go a long way. And there are others who would like to see me try medical marijuana.
I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.
I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.
I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.
But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.
If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.
I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.
Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.
And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.
I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.
So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.
I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.
And strengthen writing habits.
The jury is out.
I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.
The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.
The Teenager knows how to bribe both of us.
She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.
There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.
And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.
I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.
I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.
She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.
I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.
Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.
I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.
If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.
Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.
We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.
I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.
My neighbor and the pet mama of my favorite little dog, Sobaka, had a birthday yesterday and her 700th Peleton ride. Another friend had a birthday Thursday and by happenstance I had that podiatrist appointment in her town and stopped to see her. She insisted I had to have done it on purpose, but I am terrible with birthdays. I know they are coming. I make plans days in advance but somehow, they slip by without me recognizing them.
The Teenager decided to take the bull by the horns and go shopping for our neighbor’s birthday and collected all of her favorites: Diet Coke in 20 ounce bottles, Cheez-Its and various flavors and sizes of M&M chocolates. It’s something the teenager learned from the maternal side of our family, because when my mother runs out of ideas for what to buy someone she either finds something completely ridiculous (like the whole chicken in a can that she bought my husband for Christmas one year) or stocks up on their everyday favorites. (The chicken in a can stemmed from my husband’s love of chocolate pudding in a can. Things escalated from there.) It’s like a care package, but more festive.
Now Sobaka turned eight this week so The Teenager also bought a corresponding gift bag for the dog. With extra tissue paper as Baki loves tissue paper, some treats and some little stuffed toys Baki will probably ignore because she’s too hoity toity to play.
My family has lived in this neighborhood for 20 years. Some of my neighbors have lived here their whole lives, like Little Dog’s Birthday Girl Mom and my neighbor to the right who cuts my lawn every time he cuts his. Most of my neighbors have been here as long as I have, and so we have adopted an informal mascot of the Flamingo and have the occasional girls night.
The Teenager is very excited to be old enough to attend. Last night was the Flamingo Birthday party. I was very very much looking forward to it, and very excited to share the slow progression of my service dog application with my neighbors. Very excited also to see what cocktails would be served as this particular host does not disappoint. (I ended up with a Jack Daniels canned cocktail of lemonade and honey whiskey, delicious.)
I suspected this was a recipe for disaster, but was so looking forward to relaxing with neighbors and laughing after a hard week. I had been up since 3 a.m., worked almost a full day with odd results on my metrics, went to the gym at 5 p.m. and inadvertently skipped dinner. The party started at 7, but I opted to wait for The Teenager to get home from work at 7:30 pm.
I’m skipping around chronology here, but my brain was doing this same jumps for much of the day, fatigue leaving me not quite here nor there. When I left for the gym at 4:40 — it’s about a 10 minute walk — I discovered a package from my stepmother’s business.
How honest should I be? This package struck fear into my heart. I didn’t want to open it. But I had to open it. I haven’t heard from anyone in my family for months and it seems like some people in it are getting harder to get a hold of, but I know rationally it’s a busy time of year and we’re all still recovering from the loss of our patriarch and trying to figure out how to fill that void. So of course I open the large but light box.
There is a beautiful card inside with a thoughtful inscription from my stepmother. She had a quilt made for me of my dad’s things. I cried. Because this week has been hard for me and I’ve been trying to hide just how hard and wishing I had my dad to listen and make me laugh. And not many people other than my mother and I would care, but Tuesday was my parents’ wedding anniversary.
I almost carried the bulky blanket with me to the gym because I didn’t want to put it down. Luckily, the Teenager got home in the knick of time to take it away from me.
We did a fantastic upper body workout at the gym, with some core exercises that used the legs which I very much needed. I had skipped Wednesday’s workout not knowing the source of the nerve pain. The workout pushed my arms and stretched out my extended person, who was very stiff.
Once I made it to the party, I sat by the fire pit in the yard (wearing the Teenager’s Stitch Fix mock leather jacket because I didn’t want to fight the kittens in my room to get my very stylish jean jacket) sipping my cocktail. I had rejected my first seat because the Adirondack chair made my back and hip very uncomfortable. All day my right lower back muscle had been straining oddly, and I thought maybe the cortisone shot in my foot had caused me to move my body differently.
We moved into the house for ring bologna, cheese, pretzels and chocolate-on-chocolate cake. If you are looking for me in the photo, I am second from the left with the Teenager beside me. My exhaustion kicked in high gear. The Teenager had to leave for work at 8:45 p.m., another overnight dog-owning client, so I thought it best to follow her home. Which, for the record, is across the street.
Now, I attend these parties barefoot as long as the weather allows. The Teenager and I leave the house, descend the front stairs, and reach the sidewalk. I think I took two steps on the old sidewalk and I lost my balance. Badly. Tried to regain my footing and couldn’t. I fell onto the Teenager who allowed me to ricochet off her without budging. Like a mighty tree.
And then she looked down and said, “You okay? You getting up or are you dead?”
If you don’t live with someone clumsy or someone with a condition like cerebral palsy prone to these kind of incidents, you might find that cold and cruel. It’s not. It’s practical and allows me to retain some dignity as I collect myself. My daughter knows I don’t need fuss, that I’ll let you know when it’s time to panic. It might be a little later than it should be, but eventually I’ll let you know. We might stop at the Chinese Buffet with a broken ankle, but eventually I’ll end up at Urgent Care when I need it.
I knew I stubbed my toes and my palms and my elbow was screaming, but I was praising whatever entity was watching over me that I had the heavy jacket to protect my arms. My glasses were still on my face. My face never hit the cement. We were good. I just hoped the jacket had survived.
“It will make it look cooler,” the Teenager said.
I crossed the street and took inventory. My elbow was bleeding and was very tender to the touch. My other scrapes were inconsequential. I checked my phone for clues as to what might be happening.
Let me just start my saying that even with the explanations offered by Apple and Google, I don’t understand exactly how to analyze double support time, walking steadiness and walking asymmetry as recorded by my phone. I look for patterns. I know my phone does not consider me a fall risk, so I rule that algorithm-based tool out as useless for me.
I know, in general, that when my asymmetry reaches 10% or more I tend to fall. This shows two spikes, one at 53% on the walk to the gym, and another at 58% on the way to my neighbor’s house. As best I understand, this means one foot is walking faster than the other. Did the cortisone shot make it so I can’t feel my foot enough to use it? Is this foot unable to keep up with the other? This idea terrifies me.
I cleaned up as best I could and collapsed in bed struggling to get comfortable with my elbow bothering me and my back hurting worse. My brain was calculating and worrying and fighting the downward spiral.
That’s where I’m at. Except I’m cuddled on the couch in my dad blanket.
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.
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.”
I have a neurology physiatrist appointment next Friday and I recommended my doctor to my podiatrist, who has a relative with MS.
But this blog post will be about my podiatrist visit.
I mentioned I felt kind of silly going to the doctor for an achy toe when I knew my work life had changed and my hip was giving me trouble. But three years ago I had a blister in this toe that got infected and I have a tendency to ignore things. And I’m trying very hard not to do that.
My doctor always makes me feel like a kid, in a good way. We had a mutual friend who has since passed away and that mutual friend always said that if he had a daughter he would want it to be me. Maybe that’s why this podiatrist always makes me feel like I’m part of the family. Or maybe he’s just a good guy.
I forget that I’m wearing a mask that reads “Fragile: Handle With Care.” And he’s the only person who has ever commented on it.
“So you’re fragile?” he asks.
“I am fragile,” I admit. “And I try to have a sense of humor.”
He pats my shoulder.
And the next thing he does is hand me a strange orange ball with peach fuzz.
“You can have one of these.”
He tells me a story, about a house for sale on Route 611 with what appeared to be orange trees. He stopped and took some fruit, cut it open, planted the seeds, and put what grew in his yard. He thought maybe they were Bergamot oranges, but soon found a real Bergamot and found out that wasn’t it.
It’s a flying dragon bitter orange. And he likes to give them to patients for their aromatic value.
He still has a private practice, so he can do things like pass out oranges.
I explain what’s been going on with my foot, and that my specialist can’t see me until April or maybe next week. He asks me about my other doctor, because he hasn’t heard of her. I end up writing down her name (and he asks me why I carry so many pens and I answer “because I like colors.”
Now, I 100% expected him to tell me that my toes rub and cause inflammation and pain because I walk funny. Which he did. And he reminded me to keep my big toe and my second toe separated. Which I don’t. But he immediately decided what I described was nerve pain and wondered if some of it might be sciatic or stem from a neuroma or both. And a later Google search informed me that this type of pinched nerve/nerve tumor can be caused by the pressure on the foot caused by wearing high heels, or in my case, natural toe walking.
I was skeptical before he did his exam, but I know he knows his stuff so I kept my mouth shut and listened. When you manipulate the foot in certain ways, you can make the neuroma “pop” in a way that the doctor can feel and/or hear. He thought the neurima would be over by my fourth and pinky toe. And he did feel a little something there. But when he flexed my foot to check for a neuroma below my second and third toe, my foot audibly and repeatedly crackled.
This surprised him.
He explained my options: orthotics (which I would like to talk to the other doctor before we change my walk), cortisone shots, or surgery.
I let him give me cortisone shots. I don’t normally like anything that numbs pain because I believe in the value of pain as a communication signal. But, if the shots work, it would give us a chance to see if the neuromas contribute to my body’s way of compensating for my, as the podiatrist put it, “challenging gait.”
He prepped my foot with great care. The needle was long but super fine.
He inserted it in where he expected a small neuroma to be. When the needle struck the neuroma, it pinched and burned. Not for very long, but very distinct.
He noticed me flinch.
“Did that hurt?” he asked.
“It pinched, and if a starburst had a feeling that would be it.”
He nodded. “You definitely have a neuroma.”
The needle continued its work.
“That feels like you stuck that needle right out the other end of my foot,” I said.
And it reminded me of how I described the symptom: It felt like someone stabbed a knife through my toe to the floor.
He did the second location. No pinching/burning feeling. Just three very small little starbursts.
This is hard. Writing has always been easy for me— but the older I get, the more real life leaves me less time for fiction. And then I sit down, having gotten up at 4 a.m. to write and I lose all confidence.
So this is real talk. Art is not all fun. Rewarding things can challenge us.
Day 0: Went to bed thinking of how this new novel would start. Day 1: Woke up by alarm excited for the day and cranked out 769 before work. That’s …
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.