Writer Rachel Burchfield shares her story, and how she made the best out of a seemingly impossible situation.
Five years ago, I was just your typical high school student. I swam competitively, volunteered and was a nanny for children with autism; with the hope of becoming a behavioral therapist. I had fallen in love with what I was doing and I was on track to go to my dream college the next fall. I had a lot of friends, I loved working out and eating healthy. I was dedicated to everything I put my mind to.
I started showing symptoms of my illnesses when I was in 5th grade, but it took years to get doctors to realize it wasn’t growing pains, hormones, or stress. When I got so sick I had to leave school (4 months of my senior year of high school) and eventually ended up being hospitalized, I finally received the first of my diagnoses. I was diagnosed with conditions I had never heard of. I was being treated with medications I’d never heard of. There were so many medical terms I didn’t understand. I had no idea what the prognosis really was. I had no idea how much dysautonomia and gastroparesis (followed by an EDS diagnosis, and what seems like endless comorbid conditions) would change my life.
Three years ago, almost exactly, my health had deteriorated to the point that I had to have a feeding tube placed. Today, I rely on two feeding tubes and a central line in my chest for all of my nutrition and hydration. I’ve collected an ever-growing list of chronic illnesses; many of which are progressing in severity instead of getting better. Because of my crazy, unpredictable health, I had to leave school after my first year of college. Originally, medical leave was supposed to be just a semester or two while I built up strength with my feeding tube & recovered from malnutrition, but throughout the fall and winter I got progressively worse. It became clear that what we thought was a “flare” was actually becoming my new normal.
In the time I’ve been home, I’ve seen countless specialists. I’ve seen motility specialists (gastroenterology docs) in 4 states. I’ve seen 3 cardiologists and 2 neurologists; I have a pain specialist, immunologist, 2 surgeons, a radiology team, plus my PCP. I’ve been to 6+ hospitals and on countless medications; not to mention all of the alternative treatments such as acupuncture, hemp oil, essential oils, dry needling, and physical therapy. There was endless poking and prodding for the first year or so. It was exhausting and really hard on me, physically and mentally.
We found the team of specialists who are top notch, and though they don’t have the answers we may have wanted, and they don’t have much to help me, they are the best. They’ve done their best, even though it often feels like they’ve done nothing at all. Right now, my goal is to find comfort when I can and to find joy every day.
Feeling like I’m contributing to the world and just finding a way to be productive, really makes a difference when you’re stuck in bed or your house almost all the time. I decided I wanted to help other tubies during their transition to tube feeding. I started a project called Newbie Tubie Care Packages that sends care packages to first time tubies who are looking for support before/around surgery and during their transition to tubie life. I fund this project through my art; which up until a year ago I never could have imagined would be possible—I’ve always been a terrible artist!
I started this project after my most recent surgery when I had my GJ tube split into a separate gtube and jtube. The surgery was tough and recovery even more of a challenge, but I am so blessed to have such an incredible family and parents who are there to care for me 24/7 in any way I need. I couldn’t walk, sit up on my own or go to the bathroom on my own for almost a week after surgery. My parents stayed home from work and got up at any hour of the night to help me with going to the bathroom or taking my pain medications. But all of this made me think about all of the tubies who don’t have that kind of support. How do people who live alone get through this? How do people with no support survive the transition to being a tubie?
My project sends new tubies “tubie essential” items like tubie pads, heating pads and clips, as well as a Tips for Tubies List and items added in based on each tubie’s interests. I’ve sent out almost 50 packages to new tubies ranging from 4 months to 72 years old; boys and girls, and so many different conditions. It’s such an incredible gift to be able to help all of these tubies by sharing my knowledge.
Being a tubie doesn’t have to ruin your life. It’s no easy task, but tubes are meant to help us heal; to help us thrive. They’re meant to give us life. I can’t say I haven’t had times of frustration with my tubes, because I do…often. I may not be confident enough to flaunt my tubes in a bikini (shout out to all my beautiful tubie sisters who do—I love you all) but I’ve gotten used to the hardships; the “icks” and “ows” that each day brings, and I’ve learned to accept the tubes.
Five years ago I didn’t know what the heck gastroparesis was. I’d never heard of “motility” or “dysmotility.” I’d never considered the concept of not being able to eat or needing a feeding tube, especially at 19 years old. Now, I’m 22 years old and have no idea what my life has in store, but really, who does?
Check out Rachel’s project on her Instagram account @newbietubies. She shares more of her story on her personal blog site Positively Rachel
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