Tag physiatrist

Playing my favorite game: ER or urgent care?

Angel Ackerman 1 Comment

Yesterday, in a strange turn of events, I had a fall. More of a trip.

But let’s back up. Remember that tire incident from my last post? The day after that post (which was not the same day as the incident) I came down with an ailment that still has me congested and softly coughing.

I have to wonder if I had COVID.

It’s only been the last few days that I’ve felt myself. And that might contribute to the perfect storm that put me in this position.

I forgot to take my baclofen yesterday and all I had before I went to pick up Nan for our errands was coffee and a couple Munchkins. (With Eva on vacation, those of us left behind had to take the dog to the Dunkin Drive Thru window.) I even forgot to take my blood pressure.

When I got home, it was probably 11:40. I had coffee from Panera and groceries in the car, as well as some plastic bins from the dollar store to organize the deep freezer.

I brought the coffee in first and got the dog out of the crate. The backyard had a lot of dog poo, and I wasn’t sure she peed.

So I put on her collar and her prong, leashed her up and checked for dogs and people. We went across the yard.., and the mailman popped off a porch four houses down.

I had not put on my hands-free, waist, back-up leash. So I dropped to my knees to better control the dog lunging at the mail carrier. I got her settled (the dog, not the mail lady) and put her back in the house.

I went to the store to get the items from the dollar store. The mail lady approached me to give me the mail. I accepted it, placing it in the large-ish plastic basin containing all the items from the dollar store.

I turned, got my foot caught on the dog’s outdoor place stay, and fell. I fell with a bit of a twist, landing both on my stuff and on my right thumb.

Assymmetry percentage

I landed on the sidewalk and along the steps.

I smashed the basin. It never even made it into the house.

The fall probably happened around 12:20. My watch didn’t register it as a hard fall, probably because the basin broke my fall and prevented more serious injury.

The thumb hurt but it moved well, so I took my Baclofen, had some lunch and sat down for a while. My phone suggested my gait had been awful that day.

Thumb directly after accident

At 5 p.m., I did a shift as the front counter bagger at Chick-Fil-A. 4 hours.

Had dinner. Came home. Went to bed.

Woke suddenly in the middle of the night. My thumb hurt and it was bending less than it was earlier. I went back to sleep, planning to go to urgent care in the morning. The recycling truck came around at a bit after 4 a.m., woke me, and I couldn’t get back to sleep. I decided that even though I got less than five hours sleep I would just get up.

When I looked at my phone, I noticed a series of notifications. Apparently, my heart rate had been high while I was sleeping. Since I had that afib incident after my falls in 2023, I did an ecg on my phone. It was fine.

I headed for the bathroom. And as soon as I opened my bedroom door, I had to fight not to urinate on myself. With no warning. As I got closer to the bathroom, it was harder not to lose control– and in the end I didn’t really make it.

Thumb in the ER

Now my thumb would not bend at all.

I began to wonder: Do I have too many complexities for Urgent Care? With my disability and my heart history…

At 5:30 a.m., I decided to bite the bullet and walk to the ER.

A ten-lead echocardiogram was normal. Thumb shows a possible chip fracture.

I came home and called my neurologist, who is also a physiatrist, leaving a message in case she wanted to see me since I had a weird combination of symptoms. The person who assisted me asked me all sorts of questions.

While on hold with their office, I looked up the number for the Institute for Hand and Upper Extremity Rehabilitaton. I have worked with their therapists for two of my previous finger injuries on my right hand. They are now closed.

The person on the line with me from the neurologist’s office suggested I call the orthopedic specialist, especially since it’s the same doctor whom I consulted with when I broke my ankle ten years ago. The ER advised I call them if it got worse or did not improve.

But I would like to confirm whether or not it is broken and get a better treatment plan than this huge, cheap splint the ER gave me.

The person on the phone at the ortho’s office assured me that it was smart to be seen, right away, versus waiting for time to pass. She even had a cancellation for tomorrow morning.

So I guess we’ll have more updates tomorrow.

“Make Good Decisions”

Angel Ackerman 2 Comments

I visited my neurologist/physiatrist yesterday for my four-month follow-up. Four months ago she recommended I join the Thrive medical fitness program with the hospital network. I met with her in November to discuss how I could move forward with exercise and strength training; I was scared that I would hurt myself working out alone.

According to her records, I lost six pounds! She was very happy to hear about and see for herself the gains I’d made in my strength. She reminded me that I was still “young enough” to keep making gains, whereas at a certain point the aging process makes it so that all we can do is maintain our strength.

I told her about my bumpy February, complete with several unexplained falls. She has some concerns about this, concerns that are mitigated by my fall-free March. I told her my theory that the change of seasons and sinus “stuff” might impact my balance– referring to my serious falls of March 2023– and reporting that I had not resumed taking my allergy medicine after a winter hiatus.

There are some other signs, some dealing with episodic urge incontinence and a recent bout of constipation, the strange weakness and sensations in my fingers, and my typical hyperreflexia that could suggest an issue with my spinal cord in my neck. So if anything changes or becomes more persistent, I have to let her know immediately and not “downplay” it. She referred to me as one of those patients who is “a trooper” and just keeps going.

So she wrote in my after visit summary as my main instruction to “make good decisions.”

How many of us could curtail a lot of our health problems if we followed that advice?

My next steps will be to focus on working out and continuing my progress with strength training and weight loss, reduce caffeine intake, and improve my cardiofitness. My next appointment is scheduled for the day after my cardiologist appointment, so hopefully I will have some positive trends to report to both of them.

My neurologist also made me promise that when I get my service dog, she gets to meet him/her sooner rather than later.

Energized

Angel Ackerman 2 Comments

I’m energized in a way I haven’t been for a long time. And hopeful.

And once again I find myself greater for a strong, smart medical team that genuinely listens and cares.

It’s been a while since I had a medical update, and part of the reason for that is because of my high deductible medical plan that makes it more expensive to receive care. I am a big proponent of high deductible plans– because with an HSA they can save a lot of money, but I do not have an HSA. My current plan has out-of-pocket costs that are twice that of my previous plan. I’ll be paying $120 a month for the next two years to pay off my MRI from earlier this year.

And you haven’t seen any fitness entries because I haven’t worked out in a very long time. My coach at Apex Training took a hiatus for a family emergency and has not returned, and I no longer have the money. I have a feeling the guys at my gym would offer me some sort of deal– they have always been reasonable people, but life is so uncertain I just didn’t have it in me.

And food has also been an issue. As my food budget is also highly restricted.

These realities, especially for someone proud and stubborn like myself, are a constant reminder that it is not easy to be poor and take care of yourself, even without factoring in a disability. I believe having a mobility disability, which in my case is diplegia spastic cerebral palsy, makes me more away of how important diet and exercise are.

We all hear it all the time– that all of the body’s systems work together and that food, rest, and exercise provide the foundation and potential to fix a lot of problems. And in my case it’s easy to see the impact. It’s been about six months since I stopped working out, and my spasticity has reached a new level of inconvenience. I have spent much of my life in jobs that did not involve sitting behind a desk, and that, coupled with the lack of gym routine, has taught my muscles that we sit. And when my muscles learned something, they remember.

I need to start healthier routines. Eva is remodeling our garage and will move all of our weights, resistance bands and other equipment out there. And I am walking more. I get what I consider reasonable step counts about three times a week. I might even start walking the dog.

But about two weeks ago, I had my second episode of crippling muscle spasms after a day of walking. And I walked with a cane for a day. That also drove the reality home. I have never used a cane before.

In the midst of all of this, once I realized how out-of-shape and out-of-breath I was, I scheduled an appointment with my neurologist/physiatrist. This was a couple months ago and she couldn’t see me until Dec. 31 at 4 p.m. But they put me on a cancellation list and moved me to November 6.

My doctor arrived and immediately called me stylish, not knowing I picked my clothes to keep my weight the lightest possible and when she noticed my red boots, I had to let her know that they were on the floor next to my desk and I didn’t have it in me to look for other shoes. (But later in the visit, she acknowledged how my choice of boots also makes walking easier and the ankle height of the boot gives me more support. All part of why I love boots!)

She also commented about how long my hair has gotten, at which point I had to remind her that we hadn’t seen each other in more than a year. “Really?!?” she said. I nodded. (We set up another appointment for April so that doesn’t happen again.)

She gave me an exam and noted all my muscle tightness and had me walk around the office for her. And we talked about my hopes to improve my habits– because I know my role in my situation accounts for most of my everyday problems.

(And my cardiologist never got back to me about going off my beta blocker, but I did stop taking it. I have seen more incidents of high heart rate, but nothing significant or repeated, and most of it can be explained by diet or exercise. Eat a Little Caesars pizza? End up with a racing heartbeat. Do short stints of rapid walking? Also high heart rate.)

She suggested I resume taking my baclofen regularly and to up the dose to 10 mg if needed, up to 3 times per day. I took it regularly while working in the warehouse and have been taking it now when I feel I “need” to.

As she made a written note of all my lower body muscle issues, she asked if I might be interested in an ambulatory referral to a medical fitness exercise specialist at St. Luke’s Anderson Fitness & Sports Performance Center. “Sure,” I said.

They called me while I was driving home.

And when I learned it was $99 for the three-month fitness program and that insurance might even pay it, I really was glad I decided to go see my doctor. I made an appointment for intake evaluation on Monday and maybe soon I’ll be using my Clever Fox Fitness journal.

This is what the website says:

Medically-based exercise programs for those with a chronic disease and / or disability. Designed to increase exercise tolerance and enhance functional capacity. For all ages.
Join us and get ready to THRIVE!
$99 three-month fitness memberships are available to all patients and clients referred from St. Luke’s Weight Management, Physical Therapy at St. Luke’s, St. Luke’s Cardiopulmonary Rehabilitation, St. Luke’s Physicians and St. Luke’s Oncology.

https://www.slhn.org/fitness/fitness

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

Angel Ackerman Leave a comment

I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

7 more days

Angel Ackerman Leave a comment

I wake up at 4 a.m. It’s ridiculously early, but it allows me a bit of writing and thinking time before delving into my day. And the reality is here that I only have to do it seven more times. Some of my friends are leaving Stitch Fix this week, one is done tomorrow. We are all human so some people leaving tomorrow I won’t miss, and many I’ll never talk to again.

Every job loss experience is different– and no matter how much warning you have or how prepared you think you are, it takes a toll.

People will offer advice, or enthusiastically recommend avenues of employment that won’t work. Some people begin to critique your finances, which isn’t any of their business, as they gently suggest maybe you shouldn’t have taken your daughter to the movies last week. (We saw Strays and the Barbie movie, because both have some significant statements on society’s behavior while maintaining humor and also, well, being a certain level of amusingly dumb.)

My daughter started college at Lafayette, and I wanted to celebrate this milestone with her, but we both have more commitments than time and sense. So to sit in the dark together and laugh seemed a good use of our time and money.

My doctor sent me a note that he’s concerned about my elevated cholesterol, total 183, “bad” cholesterol 107, which has me a tad perplexed because it’s been at this level for three years and we all know my diet needs work and has had some recent challenges, especially when I’ve used fast food to quickly raise my sodium levels.

I reviewed my food diary from this summer and there were only two instances all summer where my daily cholesterol was more than 200 mg/day, when the daily recommendation is under 300 mg/day. I think as I focus more on returning to a better weight, as I work to improve my mobility, this situation should improve. Probably more than half my diet is plant-based.

Speaking of health and mobility, Susquehanna Service Dogs sent me my paperwork for my six month check in. Everyone on the wait list must check in every six months.

Today I go to the gynecologist for my annual. Tomorrow I have my final check-in with my neurologist/phsyiatrist before losing my insurance. (We’re going to discuss my increased stiffness and recent reliance on my chiropractor and my urinary issues.) And Friday I visit my chiropractor.

I also received my first shipment of products through Amazon Vine. Amazon contacted me since I tend to leave reviews on the products I buy and offered to make me an official product tester. They asked me to test a purse organizer, which seems a strange product to offer, but The Teenager has put the item to work. We also received a pair of pet nail trimmers, which were very nice, and a bird toy which the cats loved but Nala is not so sure yet.

Almost two weeks later…

Angel Ackerman Leave a comment

Please do not expect this blog entry to tell a smooth story or to make sense. I don’t even know what will flow out of my fingers as I type this now. I did not plan anything special for this post, nor did I intend to miss nearly two weeks of writing.

After mere days of tracking my sodium and “eating normally” as the dietician suggested, my constant lightheadedness and episodes of low blood pressure significantly decreased. My physiatrist (who is also a neurologist, you may recall) saw me last Thursday afternoon for my post incident follow-up. She’s excited about my approval for the service dog, sorry that I’m losing my job, has promised to buy Not an Able-Bodied White Man with Money, and she and her nurse both appreciate the way I advocate for myself and try to do as much as I can to improve my body and my health.

Speaking of which, tracking food had led me to discover that when “eating normally” I was only getting 1500-1800 mg of sodium AND drinking 100 ounces of water in the humid, hot warehouse. I can only imagine how little sodium I was eating while sticking to “heart-healthy,” “low sodium” choices. And it might explain why I really love me a bag of salty potato chips.

The physiatrist and I had a lovely conversation about B-vitamins, apparently she’s low and had to start getting B12 shots so I mentioned that I sprinkled nutritional yeast on everything. She googled it and she plans on buying a jar.

The teenager also asked me to organize her bookshelf, a calming activity that brings me much satisfaction.

In a future blog, I hope to write The Saga of the Quail, now that the birds have gone home and I can no longer get in trouble for illegally housing game birds in a residential area.

Somewhere in the last two weeks I deadlifted 120 lbs– which is three-quarters of my current body weight.

And the “tube” to the outdoor kennel the teenager built for the cats has been popular.

She even put a cat door leading from the porch to the kitchen so the cats have access 24/7. Touch of Grey, our foster with a hysterical and sometimes volatile personality, has made the back porch/mud room her new domain.

I had a mental health therapy appointment and will have a job coaching session next week. Speaking of which, we are having a Women’s Outbound meeting at work on Monday and everyone is having their break after regardless of whether we normally break at this time. I’m guessing Stitch Fix has either decided our official end dates or they will be announcing more information regarding when and how we will receive this information.

We had a massive pot luck yesterday at work for our team and another roster, and I ate so much food I didn’t eat again for 24 hours.

Is it time for Botox… in my hips?

Angel Ackerman Leave a comment

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.

Work on the Cortisone Foot and Service Dog Update

Angel Ackerman Leave a comment

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

Angel Ackerman Leave a comment

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?

Angel Ackerman Leave a comment

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.