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Ella

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.

 

23. September 2018
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