Transverse Myelitis Warriors of Wisconsin

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Transverse Myelitis Warriors of Wisconsin A safe place for Myelitis Warriors, rare neuroimmune warriors and those who care for them to share personal stories. Together, we can move forward!

I had no choice in supplemental insurance when I was put on disability. Now, my premiums are going up monthly, the co-pa...
09/29/2026

I had no choice in supplemental insurance when I was put on disability. Now, my premiums are going up monthly, the co-pays are increasing and there's less coverage for dental reimbursement AND I still have income limits.

Pay more, take home less. This system is broken.

Let’s get an annual bladder and kidney ultrasound
09/22/2026

Let’s get an annual bladder and kidney ultrasound

09/17/2026

Three heat exhaustion scares this summer, but I love a nightly hot bath. 🤔

09/17/2026

Unplanned cancer check/biopsy on my left tonsil this morning. I won’t be eating granola today 🤪Results back next week. This lesion was found during my annual brain and spine MRIs.

Bonus: got a raisin’s worth of wax removed from each ear! Hope that helps with my recent vertigo.

This is why I share.
09/13/2026

This is why I share.

09/13/2026

We went to Chicago to see a Cubs game yesterday. We had ADA seats in a section. We hadn’t sat in before. Dan dropped me off to find a parking spot in the neighborhood and I wandered around Gallagher Way before getting myself up the elevator and into our full sun seats. Within 10 minutes I was feeling funny and asked an usher for help. I moved myself into the shade and said to him that I was feeling like I had heat exhaustion. He put me in a wheelchair and brought me to a shaded ADA section, coincidentally the one that we usually sit in, but they were sold out. He then brought me two ice packs and Dan got me some cool washcloths. I started to turn a corner with the help of some protein and salt and sips of Coke. Ever since I was diagnosed with spinal cord injury temperature regulation has been an issue for me. It’s really no joke. I’ve had three bouts of heat exhaustion in the summer. It comes on fast and furious. Add some age to that and I have to really be careful on hot humid days. Chicago Cubs

Ohhhh the joys of a neurological disease…… I never know what happened or why I feel this way today or that way tomorrow…...
09/08/2026

Ohhhh the joys of a neurological disease…… I never know what happened or why I feel this way today or that way tomorrow…..
How about you?

So, there’s a learning curve when wearing AFOs I guess. They really reduce fatigue while walking and I liked my first ou...
09/06/2026

So, there’s a learning curve when wearing AFOs I guess. They really reduce fatigue while walking and I liked my first outing until the last few blocks when I felt some pain. Blister! I had to sleep in the dreaded foot prisons. Healing up before trying again.

09/04/2026

Today marks my third medical appointment in three days. Picking up my first pair of AFOs. They are made to help me with foot drop/tripping. I saw 6 turkeys and 4 sandhill cranes (not pictured) on my drive and 1 rainstorm.

09/03/2026

Botox day at 8:30am. “Have your allergies or meds changed since yesterday?” Too many appointments…🤪 it’s been over three months and my spasticity at night is pretty unbearable. I was hoping that today’s Botox would begin to alleviate some of this pain and discomfort. Two medical students came in before the doctor and I’m usually open to this, but today, I really just wanted to have a one-on-one. I answered their questions. I got weepy probably due to sleep deprivation and when the doctor came in. Her disposition was different than the last handful of appointments. She presented my case as being hopeless and said we’ve tried everything and I was ready to get my shoes on and leave, but I proceeded with the injections. Managing chronic pain is beyond words. I’m exhausted, I’m sad and I feel alone.

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