I wasn’t disagnosed with a connective tissue disorder that affects every part of my body until I was 52!

Misdiagnosis and gaslighting have colored 54 years of my life, so what makes my current doctor so different?

This doctor took over my care when my previous doctor left town. She was young, and she expressed that she hadn’t had patients with Ehlers-Danlos Syndrome before.

I shared all of the research I was doing about both Ehlers-Danlos Syndromes and Fluoroquinolone Toxicity.

She witnessed my fears when I was almost prescribed cipro by another doctor at a quick care.

She has listened to my various symptoms and worked with me at finding solutions we are both comfortable with.

But today, as I got ready to transfer my primary care at her suggestion to Dr. Gumby himself (my new patient appointment with him is in just a few weeks, after months of waiting), she shared with me something that literally made me tear up.

After thanking me for sharing my truths, my symptoms and my research, she said that she now preemptively adds fluoroquinolones to ALL of her patient’s allergy list who have connective tissue SYMPTOMS.

I was floored! So many of us out here are waiting and struggling for the simple validation of getting a diagnosis, and she is out there saying, “nope! IF you are hypermobile, I am surely not going to be the one to flox you!!”

We even discussed the fact that, in spite of the horrible damage I’ve dealt with, even I would choose Cipro over impending death, but for routine infections, she said, “No way, not me!”

I couldn’t be more proud of myself and the advocacy work I struggle to do every day.

These are the kinds of results advocates for any issue dream of.

Today, I am blessed. I hope everyone has the blessing to work with a health care provider as caring and sensitive as she is.

Tonight, I will go to sleep comfortable in the knowledge that she will be educating herself and her patients for decades to come about anything that is critical to her patient’s care.

Smash the buttons like the patriarchy and follow for more insights into my 56 years of autistic zebra life and the world around me.