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Quintessa Races 26 year old paraathlete battles with Ehlers Danlos Syndrome Diagnosis

Let's be honest, health insurance sucks. Im not talking about a specific plan, or the American health system or anything...
10/26/2026

Let's be honest, health insurance sucks. Im not talking about a specific plan, or the American health system or anything like that, it's very much more straightforward. Health insurance sucks. A lot of times when you need something, it's not covered because someone without a medical degree, just sitting behind a computer, needs to decide if you actually need it. On top of that, 75% of the population has never experienced chronic pain, and only 8.5% of the population is currently experiencing chronic pain so bad that it impacts their daily lives. So explaining why a nerve ablation would be the most beneficial solution to about 30% of my pain is so frustrating because not only does someone who has most likely never experienced this level of pain in their life need to understand that burning my nerves is my best long term option, but the pain specialists that are covered by my insurance have treated me with such little respect that I can only describe them as heartless as****es, the most recent one I saw interrupted EVERY SINGLE sentence I started.
Luckily one of my doctors has me trying a medication that has helped me tremendously for my nerve pain, helping me excel quicker in my muscle rebuilding journey, Journavx. Unfortunately it's only labeled for acute nerve pain so theyre only allowed to prescribe it for 30 days. But I'm seizing the opportunity! I stand for about 45% of my day with a close assist nearby, walking with crutches carefully as to not dislocate my hip, and even though I am BEAT every single day, I see great progress without the excruciating level of pain.
There's a sad caveat to these meds and their stipulations though, and I can't help but think about it often. These meds were just supposed to get me through till my surgery (and through a nerve ablation that will never happen), they were supposed to be the start of the finish line of my "incurable" pain. My PAO surgery was supposed to be scheduled in two stages on the 2nd and 4th of November, but even though my surgeon is 1 of only 2 in the state of Wisconsin that can do this surgery, my insurance refuses to cover the surgery. So there will come the time when I take my last pill and the pain returns and I have to readjust to it's severity.
We even tried to have their office talk to the insurance to have an out of network agreement, to no avail. So now I'm waiting to change my plan in hopes that we can get it covered for April. Additionally, I can't schedule the surgery, have the surgery, and then figure out the rest or put in a claim because it's technically an elective surgery, despite the issue highly impacting my ability to be a functional human being.

All this to say, there's no real solution to health insurance, everything has its issue, and look at my fu***ng smile ♥️

08/30/2026

I'm excited and looking forward to writing my season wrap up, big news is coming and things I never imagined would happen are finally a possibility
Stay tuned

07/03/2026

Yesterday was the one year mark when my disability took its worst turn and I have been thinking about that day quite a bit. Through the year I've been regretting the 1 year mark of landing myself in my chair full time but now that it's here, it reminds me of how far I've come with coping with my disability. I do still have rough days where I hate my body and what it can't do, but WOW, I'm amazed at what I can. For a body that falls apart at its seams, held together with braces, rest, and some day, stitches; I am beyond proud of what I'm able to accomplish. This journey has reminded me that you don't have to walk alongside someone to connect to their soul, you can roll too. And it's okay to exist in an unraveled mess and still be strong. Sometimes strength isn't being impermeable to tough times and horrible thoughts, but it's the resilience we can endure and still stitch ourselves back together.

07/01/2026

someone wise once told me that a strong person is never strong all of the time, and that alone gives me strength.
Happy Disability Pride Month

06/16/2026
I was asked recently in an interview "what would you say to someone who's just gotten a life-changing diagnosis?"And I h...
06/16/2026

I was asked recently in an interview "what would you say to someone who's just gotten a life-changing diagnosis?"
And I had been thinking about that for a while... Since my fanbase has grown, some of the people that reach out are also going through one of the toughest medical roads of their life or has someone close that they love going through something like myself. I had been talking with God to ask him to help me say the right thing to help them, because I know that God must have put me on a journey to help others- giving me opportunities to meet people and have my story publicized for all to hear. I've had God talk to me more in the past month than combined last year. Through the thick of my medical issues progressing so much, so fast, God rarely made himself known. I look back now and see that was his test of my faith.
Because I hated hearing "God has a plan" while I'm the thick of it, I answered the question in my interview with an analogy that I was thinking about while I was gardening last month about how God needs to repot us flowers, how if we're all in the same pot we will get root rot, our leaves die and our flowers don't grow. And by God repotting us, putting us in different situations, with time and love and patience, grows strength and resilience. Our roots can grow deep and our flowers bloom more vibrant.
But now that I've been hearing god, he has shown me more of what this is all about. God is not *breaking you* he is building you. God doesn't give us what we want in life, he gives us what we need to become what he needs us to be to fulfill the calling on our life. When God wanted to make David a king he didn't give him a crown, he gave him Goliath. When God wanted to raise Joseph to the palace he didn't give him a shortcut, he gave him prison. When God wanted to make Ester a queen he didn't give her comfort, he gave her a crisis. When God wanted to make Moses a leader he didn't give him a stage, he gave him wilderness. Read Jeremiah 29:11, and if you're a believer of the new testament, 1 Peter 5:10, Romans 8:28, and 2 Corinthians 4:16-17.
I'm blessed that God has put me through all this s**t with my health, so I'm ready to say "put me in coach" and help someone through their journey, whether it be mental health, physical health, or both.
I hear you God, put me in.

06/02/2026

gofund.me/dba610e6d

What an amazingly eventful day in Highland Park at the North Shore ClassicCompleted the 5K with rolling hills, one hill ...
05/31/2026

What an amazingly eventful day in Highland Park at the North Shore Classic
Completed the 5K with rolling hills, one hill with a climb of 79 feet over a half mile, and all done in under 30 minutes!
The feeling of crossing the finish line never gets old, and to put a cherry on top, I was the winner of the wheelchair division, and placed 8th overall for women age 25-29
To end the morning, as I was getting into position to exit my chair, the tire completely popped off, and I'm thanking God this didn't happen during the race.
Unfortunately these are the type of things you deal with when using a loaner chair, things break, they fall apart, parts need replacing- and it could cost you an entire race to be in a chair that can't keep up with your athletic ability and need. Please consider sharing and or donating to my fundraiser for a brand new wheelchair that will be able to keep up with me for years on end
gofund.me/aab89cc06

05/31/2026

T minus 9 hours, cheer for me at the North Shore Classic 5K!

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Waterford, WI

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