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Medical & Health Created 2mos ago

Latest update as of Jan 14, 2026

  • Update 1.14.2026

    I don’t know how to soften this anymore, so I won’t.

    My body is failing me in ways I can’t control. I have severe dysautonomia, and it has taken over nearly every part of my life. My blood pressure drops without warning. I faint. I fall. I’ve hit my head more than once. One of those falls caused a subdural hemorrhage. Imaging also revealed a brain arteriovenous fistula (AVF) — something I never knew existed until everything else started unraveling.

    Because my GI system doesn’t function, I can’t hydrate or nourish myself on my own. I rely on TPN through a PICC line just to survive. And now doctors believe I’m allergic to either the lipids or the protein in my TPN — the very thing keeping me alive. I’ve had hives and systemic reactions with no other new exposures. Reacting to the treatment that’s supposed to sustain me is terrifying.

    Right now, my life is a constant rotation of specialists trying to keep my body from completely crashing:
    • Neurology
    • Neurosurgery
    • GI (TPN team)
    • GI (motility)
    • General GI
    • GI behavioral
    • Cardiology
    • Metabolic cardiology
    • Dermatology

    I am fighting for answers — not comfort, not convenience — answers. That includes pursuing advanced genetic testing to determine whether there is an underlying connective tissue, autonomic, or metabolic disorder driving all of this, and exploring stem cell–based therapies that may offer hope where standard medicine has run out of options.

    These are not simple or inexpensive paths. Genetic testing, specialty consultations, and potential regenerative therapies are rarely covered by insurance, but they may be the key to understanding why my body keeps failing and whether there is a way to stop the damage instead of just reacting to it.

    This fundraiser is helping make those next steps possible. If you are able to donate, you are directly supporting access to testing and treatments that could change — or save — my life. If you can’t donate, please share. Visibility matters more than people realize.

    Thank you for standing with me when my body won’t. Thank you for helping me fight for answers instead of giving up
    🧡💚

About this fundraiser

My name is Kristy, and I’m a mother to three incredible kids — ages 15, 11, and 10. Every day, I wake up and fight, not just for myself, but to be here for them. Some days, my body makes even that impossible.

I live with Complex Regional Pain Syndrome (CRPS) — a condition so painful it feels like my body is on fire while breaking and crushing from the inside out at the same time. I also battle thoracic outlet syndrome (I’ve had a rib removed), dysautonomia, vascular Ehlers-Danlos Syndrome (v-EDS), chronic fatigue syndrome, several severe cardiac issues including neurocardiogenic syncope, and hypoglycemia. I’m tube-fed through a dual-bag GJ feeding tube just to survive, and some days, standing or walking is impossible.

My family has done everything they can to support my treatment, but I’m trying to get back on my feet on my own. I have a referral for an intrathecal pain pump, which could finally help me manage my pain and regain a little independence. But even with this, I still need help with medical bills, genetic testing, life-saving devices, Stem cell therapy and training my dog as a service animal.

A service dog would be more than a companion — they could alert me before fainting or dangerous drops in blood sugar, help me regain balance if I collapse, and provide comfort and safety for my children when I’m struggling.

I am asking for help because I want to survive, not just exist, for my kids. I want to be able to help them with homework, cheer them on at their games, tuck them into bed, and show up for every milestone. Every donation, share, and message of support brings me closer to safety, stability, and hope — a chance to keep living alongside my children instead of watching life pass me by.
 

I’ve faced unimaginable pain and loss, but I refuse to give up. Please help me fight for my life and my family.

 

With love and gratitude,

Kristy 

💛 #CRPSAwareness #RareDiseaseWarrior #ServiceDogJourney #MomStrong

Organized by

Kristy Brrientos

Westville, IN, USA

Organizer

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