- Posted January 29, 2014 by
New Braunfels, Texas
This iReport is part of an assignment:
Living with a rare disease?
I Am the Face of CVS
When I get sick, it always starts between 4AM and 5AM. I wake up feeling extremely nauseous and within 30 minutes I'm vomiting. Not that big a deal, right? That's what the doctors think too, but this vomiting is not like a stomach bug. When people vomit, they usually get some sort of relief. Yes, it may happen again, but the nausea isn't constant. For me it is. When I am in an episode, I vomit every 3 to 5 minutes, whether something is in my stomach or not. There is never any relief, and trust me, when you have vomited that often for days on end, the pain you start to feel is indescribable. Sometimes it is so bad that I will actually chug some sort of drink, just so I have something to vomit up, because it doesn't hurt as badly when something back comes up. When I got sick the first time, my parents thought it was a stomach bug and just let me rest, but after 3 days of vomiting and not eating or holding down any liquids, they took me to the emergency room. I was so dehydrated I had to be admitted for several days. I got better, went home, and life went back to normal. Then it happened again. Every 2-3 weeks I would get sick again and again. The episodes never changed. They always started early in the morning and continued until I was admitted into the hospital. I started doing poorly in school and my parents were accused of abuse by our neighbors and doctors. No one knew what was wrong, and every single test that was done came back with negative results. I was put on crazy diets and all kinds of medications, but nothing helped. According to the doctors, I was a healthy kid that needed to see a therapist because I was making myself sick. The worst part of that was the fact that my parents believed it. I was doing it to myself and if I really wanted to be better I could make myself better. I would lay in bed for days telling myself I wasn't really sick and I just needed to stop it, but any time I tried to move, I threw up.
Finally, when I was 11 years old, I was diagnosed with Cyclic Vomiting Syndrome. We were told that it was a very rare disease and there were no specific tests that could diagnose it. Basically it was a name put on a collection of symptoms. They didn't know anything more than what they saw in me. From there we experimented with more medications until we found one that seemed to work. It took a few years, but my episodes started to die down to once or twice a year by the time I was 16. Too late to get my childhood back, but early enough to save my high school GPA. I still live in fear every single day. There isn't a single night that goes by that I don't worry whether or not I will wake up sick the next morning. This disease controls your life, even when you don't want it to. Just when you start to think its gone, it comes back.
The hardest part about CVS today is trying to convince doctors that it is a REAL illness. Just because they haven't heard of it doesn't mean it doesn't exist. I remember the first time I googled the name of my illness, back then it was AOL search, and ONE PAGE popped up. Now when you google it, thousands upon thousands of pages pop up. So why don't more doctors know about it? It really sucks to walk into an emergency room, puking your guts up, and as soon as you tell the nurses what you have they give you that annoying deer in the headlight look. It gets even better when you tell the doctors the name of the medication that helps you and they send a psychologist evaluate your mental state. It happens every single time. All I want when I go to the hospital is to stop throwing up. Once they stop the episode, I go straight to whataburger and eat a meal like nothing ever happened. It's the strangest thing, because you think I would have to go the clear liquid diet, but once I'm better, I'm 100% better.
That's just me though. Everyone with CVS is the same, but different in their own ways. Some are like me and are sick until they get help, others are sick once or twice a day for several weeks. Some sufferers have extreme pain when they are sick and others, like me, just have the unrelenting nausea. Some of us are able to hold down jobs, others have lost every single job they have gotten. We would love to find a cure, but right now we just want SOMEONE to LISTEN. Its so disheartening to tell doctors exactly how it is, just to have them tell us that we don't know what we are talking about. We just want to be recognized. Cyclic Vomiting Syndrome is real, and more and more people are joining our Facebook page every day. We are our own support group, because no one else will be. Please help us get our story out there. I already know I'm not the only person you will hear from. We are on a desperate search for recognition. We need more doctors who know how to help us. Some of us are so far away from the few specialists that are out there, and traveling is a major trigger for a lot of us. We need more doctors to defend us against all the others who just want to shun us. Thank you for anything and everything you can do to help us be recognized. It really does mean the world to us.
Theresa Ray - sufferer for 19 years