Hope starts here


My first CVS episode came in 2004, when I was 15 years old, while I was working on a farm for the summer.

In the following years, episodes came at 6 month intervals, like clockwork. They lasted for 5-8 weeks at a time. And every time I ended up in the hospital with IVs in my arm and neck from dehydration. Doctors did all imaginable tests, which revealed nothing. Not a single doctor belived what I said. They all thought I was either pregnant or looking to score drugs.

I woke up one night in intense pain and started vomiting my guts out for no apparent reason. I thought I had food poisoning. Thankfully, I wasn’t alone in the middle of nowhere, and a coworker took me to the nearest healthcare center – an hour drive away – the next morning. The doctor took one look at me and decided I must have been taking drugs the night before. They kicked me out.

While I was working at a children’s clothing store, my boss never belived there was anything wrong with me – she was sure I was just lazy. Every time I had an episode and called in sick I was yelled at, and I had no choice but to show up to work sick as a dog. Sometimes I was the only employee taking care of the store, and I was lucky if I had a break to run to the bathroom. In January of 2011, I had a nervous breakdown at work. It put me in the hospital, followed by pschyciatric care for a while. In March 2011, I finally quit my job.

It wasn’t until 2012 that I was finally diagnosed with CVS and received the proper treatment. I managed to shorten the episodes to 4-12 days, but they became more random. The shortest period between episodes was 7 days, and the longest was about a year. I’m now on disability and have a close-knit group of doctors who know how this nasty disease works. They are more than willing to help me. After receiving the correct treatment and support, I can proudly say I haven’t had an episode in over 16 months! Sadly, I’m always expecting one, and I keep a plastic bag in my purse just in case. The right combination of medications help both with aborting episodes and shortening them. I’ve lost a job, many years, and special occasions in my life, and a bunch of friends and family members, but I’ve gained a community that helps each other out. I will keep spreading awareness in the hopes of helping others.

Every day I thank my mom for all her help and support and all the time she took off work just to get me on my feet again. She never doubted my sickness.