During Awareness Month, we shared stories each week of a Champion Patient. Each had a unique story to tell, and wanted to share their story with the Pact Blog, and the rest of the DTP Community. This week, we feature another young woman’s story. Read about Roxanne below.
I want to say the first thing people notice about me is my great skin, my smile, or even my clothes. Instead, it’s my tubes. When my dog tangles herself around a tree, I’m usually right there beside her with the same problem. We just stare at each other and sigh.
My name is Roxanne and I have gastroparesis, slow colonic transit, a neuromuscular disorder, migraines, fibromyalgia, chronic respiratory failure, hypokalemia, polycystic ovarian syndrome, metabolic disease, chronic GERD, chronic gastritis, sun allergy, diastolic dysfunction, and of course, the various side effects these all bring. I didn’t have all of these when I was younger, and honestly, I have no clue which of them came first and triggered the others. All I do know, is from the time I was born, I was not okay.
I have very fond memories of my childhood. I played outside, made cars out of old q-tip boxes, rollerbladed, and circled all the toys I wanted in the Toys r’ us catalogue. I swam, I ran, I even had green eggs and ham; yet, in the shadows, I never felt alright. The earliest memory I have is of me throwing up before preschool. I have pictures of school outings where all I remember was coating the grass. I loved vacations, but every long car ride I was nauseous. My mom said when I was a few months old I had the same issue. The doctor suggested I was lactose intolerant. As I got older, it became motion sickness, gastroenteritis, ulcers, gastritis, cyclic vomiting syndrome, IBS, food intolerance, growing pains, porphyria, and insanity.
I’d come home from school and collapse into my grandma’s arms from pain. She’d rub my back and make me tea. In high school, I mostly ate Lucky Charms my junior and senior years. I lost weight. In college, I found myself unable to attend most of my morning classes; I couldn’t concentrate. I got a job as a manager, and right before my promotion, I fell to the floor. I’d spend my nights throwing up in the bathroom while my husband slept. I started throwing up on invoices at work, in the bathroom, in the pharmacy, in the car, in my office, on books, and even on myself. I had to quit. My husband was as supportive as he knew how, but it wasn’t what he had signed up for. Before long, we divorced. Then, finally, during my hundredth hospitalization, I was diagnosed with gastroparesis. I was 24. I was fat. I felt alone.
When I stumbled upon the G-PACT page, I finally started to understand this condition. My years of frustration, confusion, loneliness, sickness, and anger finally made sense! I wasn’t the only one who’s been told, “for someone who throws up so much, you don’t look like it.” I wasn’t the only one who hated those radioactive eggs. I wasn’t the only one who had so much abdominal pain for a condition I was told that “caused no pain.” I wasn’t the only one who had to stop working, who took twice as long to graduate due to hospitalizations, who now has a useless degree, who lost relationships, and who lost themselves. I found a community and hope.
Now, every morning I wake up, I’m more exhausted than the day before. It takes an hour or so to get back some feeling in my hands and legs. I set up my feeding pump, take my medications, empty last night’s bucket and Farrell bag, start my infusion, and slink back into bed. There are days I’ve literally ripped my own skin from pain; days I can barely talk or stay awake, and days when it’s both. There’s a deep thick layer of depression and anxiety that comes along with being chronically ill. It’s extremely isolating and draining. I had no idea how much of society is centered around food and the gazillion commercials on TV are almost mocking. I don’t know what to tell family members or my boyfriend when one day the smell of them making eggs doesn’t bother me and the next it’s enough to send me to my bucket. How do you even explain to friends about having multiple buckets to begin with, and emesis bags everywhere? How do you handle conversations where the other person is telling you about their promotion, having children, etc and they ask, “how are you?” How do you tell them your biggest accomplishment was using the bathroom, projectile vomiting into the bucket on the floor instead of the bed, getting up to shower, that there’s no longer blood in your urine, that you actually managed to get 600 calories today, or that I’ve got more tape on me than what’s available at Office Depot? Yes, I could, but I don’t want to bring down the mood. I don’t want to be “that person.” As supportive as everyone is around me, I don’t have the heart to tell them how I truly feel because I hate seeing that helpless sadness in their eyes. I say “fine” so they can be. In the online groups, I don’t have to do that. I don’t have to hide or be afraid I’ll be pitied. If I joke about putting a mini fridge in my bathroom, instead of having to awkwardly explain, I get an entire community of people laughing and saying it’s a great idea.
I’m learning to accept the cards I’ve been dealt but that doesn’t mean I’ll ever surrender. I have so many amazing role models to admire. I know if we all made it this far, I can go further. I wish I could hug every single person going through any of this. We’ve all had to experience so much I can’t fathom anyone being called less than a warrior. I know my journey might have been difficult, but there are plenty of other stories out there just as harrowing, or worse.
I just want to make sure that I thank every last one of you for being a well of information and comfort. I cannot stress enough how much you’ve all helped me through tough times. We can never give up, even when our bodies have. Just remember, there’s someone out there if you’re struggling and need a hand. You are not alone. You’re loved no matter how broken you feel. In those moments when you’re screaming in silence, you have an entire community who can hear.
Do you want to share your story with the Pact Blog? We’d love to hear from you! Email Samantha at firstname.lastname@example.org