As The Wheel Spins

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As The Wheel Spins

My life as a woman living with paralysis. Disability, mental health, and outdoor adventures meet here

08/12/2026

Heaven help me when I’m elderly and I still have to differentiate between so many different round white pills. There are six different medications here, and while the magnification of photography makes them a bit easier to distinguish, they look much more similar in the hand when grouped as the larger five and especially the smaller four.

08/11/2026

It’s been really weird inside my head since consulting with a neuroimmune specialist last week. And I hope to update the world soon. But dang…when you’ve lived with the same defining diagnosis your entire adult life (ages 21-46), having that diagnosis spun 90 degrees is a level of rebranding that I didn’t realize I was so underprepared for. Who I thought I was (medically) is actually a fraction of the story, and things I used to make light of as a coping mechanism are now legitimate concerns.

Glad I’m no longer unaware, but it’s scary with everything out in the open. For now I’m still hiding away from the chaos, pretending everything is fine.

08/05/2026

Consulting with a new neuroimmune doctor today. Hoping to get a better understanding of what has already taken place over the past 25 years, and how I can prevent further issues.

07/21/2026

Yesterday I had the “joy” of visiting the social security office as part of my periodic medical review to ensure that I am, in fact, still disabled. (Sorry, SSA, no breakthroughs requiring a call to the Vatican here!) Pro tip: arrive about 20-30 minutes early. I fit there about 35 minutes before they opened, was #4 in line, and finished with my my business ten minutes after they started work for the day. (The security guard began allowing a controlled entry to check in at about ten ‘til nine, so they could start calling people back right at the top of the hour.)

In an exercise that’s the complete antithesis of all the self esteem work I’ve been doing in therapy, I was also required to type out a full page (at 11pt font) personal narrative explaining all of the functional reasons that my ability to work is limited by my physical and mental health. Nothing to make you feel good about yourself like building a detailed list of all the things you can’t do.

07/06/2026

I’m way behind on sharing my fun adventures, and normally hate getting things out of order, but Saturday night/Sunday morning was too special to delay talking about.

While most of America was popping fireworks and going to bed, we were just getting started with the 24th annual Hotter than Hell Marathon to benefit Duchenne Muscular Dystrophy. From midnight to 8am, people gathered to walk, run, bike, or skate the distance of their choice in 2.x mile loops around Lafreniere Park in Metairie. This was my first marathon-length race, and oh, what a unique way to achieve this milestone!

From light up beads to a birthday party to a cat colony and the park’s resident rooster, our group of built of determined riders, a beast of an athlete who pushed himself the full distance, and generous volunteer runners came together for an incredible shared experience. Rather than pairing each rider to specific runners, we all rotated throughout the night to build new friendships or deepen the ones that already existed. One of the skaters even came over and volunteered to push anyone who was interested for a loop while he skated, creating a uniquely exciting experience! And as with any gathering of this wonderful community we’ve built, for those few hours our disabilities were part of the norm not the exception, and meeting our needs felt less like a burden and more of just what you do when you see the person behind the disability. Capped off by breakfast at Waffle House, I can’t wait for next year’s event.

06/13/2026

As I’m recovering from surgery, I want to point out that June is Transverse Myelitis Awareness Month. I hope to make a video at some point before the end of the month telling the story of how I got here; in the meantime, here are some TM facts from the Siegel Rare Neuroimmune Association.

SRNA started as the Transverse Myelitis Association, and was a great source of information for me in the early 2000s when there wasn’t much to be found yet online. They changed their name many years ago to show their support for all related neuroimmune conditions. Since learning in December that I have damage to both optic nerves, I have been exploring with my doctors the chance that I may have one of these other diagnoses, and I will be seeing more specialized physicians in the future.

06/12/2026

Note: if you’re uncomfortable discussing bodily functions and anatomy in clinical terms, this post isn’t for you.

Yesterday’s surgery has been in discussion for many years, and while a fairly simple procedure, it should make a big difference in my quality of life and long term health.

The vast majority of spinal cord patients deal with a condition called neurogenic bladder. The bladder doesn’t sense fullness, so it fills and fills until becoming incontinent. For the first ten years of my paralysis I performed intermittent self catheterization, draining my bladder with a small single use tube 5-6 times a day, to manage this condition. This made leaving the house difficult, as well as taking time away from my young children, so in 2015 I began using a Foley catheter: a tube inserted through the urethra and held in place with a small, fluid filled balloon. Being constantly hooked to a drainage bag was a small price to pay to get my time back and no longer have the constant worry of wetting myself.

The Foley isn’t without its drawbacks however. Its location around other body parts makes it a conduit for frequent infections, it can cause painful friction with surrounding tissue, and can damage the urethra over time. After weighing my options and talking with my medical team, yesterday my urologist inserted a suprap***c catheter in my bladder. It’s essentially the same tubing as the foley, but is now inserted through a small hole made in my lower abdomen, just above the p***c bone. The procedure went well, and the doctor and anesthesia team honored my wishes to stay awake for the procedure. The doctor also took a look in my bladder with the cystoscope, and I’m happy to report he saw no issues. Long term catheter use causes a significantly increased risk of bladder cancer for spinal cord patients, even more so for those using an indwelling catheter vs self cathing, so this is repeated on a regular basis to ensure the bladder is healthy.

I’ll have to be a bit gentle with it for the next six weeks until I go back to my doctor for the first catheter change, but it should be an uncomplicated recovery and beneficial in the long term.

05/12/2026

As a disabled woman in the 21st century, I’m always keenly aware that I sit on the shoulders of many pioneers who came before me. While I’m not yet able to race on my own (a lack of appropriate equipment and conditioning), I’ll definitely be thinking of Bob Hall the next time I race.

05/08/2026

Happy Friday everyone!

How are we already a week into May? Sorry it’s been so quiet around here, when I haven’t been out in a race course I’ve been spending too much time stuck inside my head, which isn’t always a great place to be. The weekends, however, have been very useful at pulling me out of the mental quagmire. April saw me out on three consecutive weekends, participating in four races and some really cool side quests. I had only a single weekend break, then May began with a disability milestone and an epic birthday adventure, with another race on the calendar tomorrow morning. I had a productive appointment with my therapist yesterday, and hope to get caught up over the next few days.

In the meantime, enjoy this random photo of a pretty April sunrise, taken from my bedroom window. It’s definitely a prettier view than I’m currently experiencing, as it’s a stormy day today in South Louisiana.

04/30/2026

Gotta love that feeling when one of your favorite disabled athletes/content creators replies to your comment on his post! 🤩 The prompt was to explain your disability very poorly, the more cryptic and confusing the better. 😂 Tomorrow is a milestone day (more on that later), so I appreciate the opportunity to laugh at my situation. Dark humor for the win!

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