Chronic Illness and Mobility Support for Brie

Nearly every year for my birthday, I’ve put on a fundraiser for various organizations that I believe in.

I’m grateful to say I’ve raised donations for the VT Humane Society, GoatsofAnarchy, The EPIC Foundation, Planned Parenthood, The Ehlers-Danlos Society, The Innocence Project, and more. I look forward to continuing to do my part, however small, to help projects like these in the future.

If you know me, you likely know that asking for help does not come easily… but today, I could certainly use some. Let’s dive in.

I’ve lived with chronic pain since I was eight years old, and thought it was ‘normal’ for many more years than I’d like to admit. This calendar year alone I’ve attended more than 120 doctor’s appointments, and many of the treatments and mobility aides that could help me live easier are not covered by insurance.

I’ve been diagnosed with multiple illnesses, none of which have a cure and very few even have viable treatment options. Between Fibromyalgia, hEDS, IBS, ADHD, and dysautonomia/POTS and others, I’ve got my hands full trying to predict and manage my symptoms and comorbidities.

Some of my daily or near-daily challenges include (but are in no way limited to) chronic fatigue, muscle pain/laxity/stiffness/aches, joint popping, memory loss, sleep dysfunction, gut issues, brain fog, hypotension, anxiety, pelvic floor dysfunction, stomach pain, headaches, high stress, flare-ups, etc.

I’m not sharing this story for pity; this is the only life I know.

My conditions affect my ability to do everything. Not just bigger projects like planting a garden, or deep cleaning my kitchen… but basic maintenance like washing dishes, sweeping the floor or feeding the animals… some days even feeding myself or walking to the bathroom can be so taxing those tasks are put off until they can simply no longer be ignored. I am constantly aware of things that need doing, and forever battling my body’s limits to attempt to get them done. I can get by most days, but never without difficulty.

Two of my chronic conditions make it tough for my own body to support itself. Every day my boyfriend gets home from work and gives me a hug—and not just to hug me; he does this to hold me up, to take some of the pressure off my fatigued muscles and weak joints. And every day the relief is almost enough to make me cry.

There is a mobility aide I learned about a few years ago, called the Body Braid, that helps people with conditions like mine to move easier, and protect their joints as they do. It assists in support where our muscles and tendons do not. It helps us conserve energy that would otherwise go towards the incredible amount we can spend just to move.

The issue is it’s expensive, and of course it’s not covered by insurance. I’ve tried to save for it, I’ve tried to live without it for as long as I can. I feel I am at a point that every day I live without it, I fall into a deeper energy deficit than the day before, and there’s no way to catch up. It’s a challenge to enjoy even the things that bring me joy.

Perhaps this sounds extreme to some, like I’m laying it on thick—but I hope by now you understand this is something I need. This is a quality of life issue and I realize there is no way around that.

The body braid I feel most appropriate for me costs almost $400. You may notice my goal is set to $500. My main goal is to make this mobility device easier for me to purchase, even if I don’t raise the full $400. If, by chance, folks are feeling generous enough to get me past that goal, any extra I see here will go towards other medical therapies that are extremely helpful for me, but once again not covered by insurance.

Please, if anyone has any questions at all, feel free to reach out. I find it fulfilling to help others not only grasp what it’s like to live with chronic illnesses, but also to help those advocate for themselves who believe they’re experiencing something similar. We cannot normalize asking for help if we do not raise awareness of these issues.

Thank you from the bottom of my heart, for anything you even consider donating. If you’ve gotten this far, you mean the world to me. Thank you for listening to my story.