When I was finally diagnosed with CVS at 6 years old, I can only imagine how relieved my mom was to finally get an answer to what was making her kid sick all the time. Thank goodness we lived near Children’s Hospital of WI who had specialists that treated CVS. During middle school and high school there were a couple of major hiccups with CVS.
First, I was in sixth grade and we couldn’t abort the episode at home. So, my mom and I headed to Children’s Hospital’s emergency room. After waiting a while we were seen and then they eventually admitted me. As many CVS sufferers know, a lot of healthcare professionals are unaware of CVS, because it is so rare. I will never forget what one of the doctor’s asked me during that hospital stay. They instructed my mom to step out of the room, and proceeded to ask me if I wasn’t sure that I was actually pregnant. Why would that be your go to for a sixth grader? No, my symptoms and pain was because of CVS!
Second, I was a freshman in high school. The routine was the same, go to the emergency room, and get admitted. This episode sticks out in my memory because it was and still is the scariest episode that I’ve ever had. Nothing was working, and I ended up having to stay for about a month. Luckily for me, my mom was a real trooper and stayed with me the entire time. She had to sleep on a couch. Of course, my dad, older sister and brother came a lot as well. During the stay we had a lot of different nurses, some great and some not great at all. It is still crazy to me how many tests I went through during this stay. Most adults will never have as many tests during their lifetime. I was finally getting better and eventually was discharged. Because of CVS I missed basketball and finals at school. The majority of my teachers were understanding and I was able to make-up my homework and exams, so it didn’t affect my grades. It did however take a significant toll on my body. I lost a significant amount of weight, most of that being muscle. It took me awhile to regain my strength to be able to be active again. Which was frustrating since it was the middle of basketball season.
Lets fast forward to college and post-college. I was able to go away to school in Northwest Indiana. My specialist gave me prescriptions to use in the event that I had to go to the emergency room. I made sure to let the University’s health center know about my condition. Luckily for me during my 4 years I only had a few serious episodes. I was able to enjoy college life and ended up graduating summa cum laude.
Now I am a 26 year old young professional living in the chicagoland area. I am working in the non profit fundraising field, which has been a goal of mine since early college. I don’t let having CVS affect my personal life. I enjoy being active, doing kickboxing, boxing, and weight lifting. My passion for running has not been affected either. I have completed 4 half marathons and 1 full marathon.
My advice to young CVS sufferers, learn your triggers, take your meds as soon as you start to feel sick, and go live your life!