Is it time for Botox… in my hips?

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.

The Toe Update

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?

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.

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.