Rasheera – My Journey living with CVS
by: CVSA Nordic || 26. September 2018
To be completely honest my CVS days are filled with memories of the emergency room and buckets filled with stomach vile and vomit. My mom having to lay cold towels on my head and body because I would sometimes run a fever. Her forcing me into a bath of cold water to help my temperature go down. My screaming and groaning throughout the nights because my stomach would be cramping so bad even though I had stopped vomiting. Somehow, I got used to the idea of sleeping with cups and bowls around my bed just in case I’d have to throw up. My mom would always tell me “ladybug, get you a cup or bowl to keep by your bed.” That was our strategy, we quickly found ways to help us adapt so when the episodes came we were as prepared as possible.
Me living with CVS not only affected my life, but it greatly affected everyone around me. It affected my mom who was a single parent. Many days she would have to leave work early to pick me up from school early because my episodes would be triggered. We never knew when an episode would trigger, and we never knew if it was going to be an episode I could ride out in the hospital or at home. We always prayed it would pass by smoothly but that was always up to my body. Most of my episodes lasted anywhere from ten to fourteen days. The two-week long episode where the hardest, usually after a week if I wasn’t better I’d get checked into the nearest hospital and they pump my veins with fluids.
Many nights my mom spent laying on a cot by my hospital bed knowing she had to go to work the next day. My siblings were also greatly affected too. During the times I got sick my siblings had to be left at home with a sitter. It was hard on all of us. It affected my siblings in small ways too not only having to adjust with having my mom gone to be with me but even at home. In having to cover my chores because I was too weak to get out of bed. They were forced to not only take over my chores but to also help clean up after me whenever I was going through an episode. Many times, my mom would send them into the room to check on me and they would grab the bucket and cups of throw up from around my bed, pour the throw up down the drain clean out the tub and bring it back to my room with liquids to drink. My older sister whom I shared a room with really tolerated a lot. She sometimes had to leave the room because I would get so sick I literally had to be quarantined. As we got older we eventually had our own rooms but for minute we shared our space and she always knew first whenever I get sick.
I remember thinking at a young age how exhausting it was trying to talk. If I wasn’t throwing up, I was dry heaving, and if it was neither my body reeked with stomach cramps and extreme nausea to the point you couldn’t think. I would cry and tell my mom “nothing is coming out” and she would rub my hand and say, “I know baby, I know.” Living with CVS was secretly tormenting because other people couldn’t understand it was more than the stomach flu, but it was literally a life crippling syndrome that never seemed to leave me alone. Doctor’s had little resources or medical treatments during the peak of my syndrome. As I got older my episodes came less frequently and my body got stronger. My last vomiting episode was when I was 16 years old and that episode lasted for 10 days.
I’m not sure why I don’t have CVS anymore. I know if it wasn’t for m FAITH and FAMILY I wouldn’t have made it through those tough moments. I still experience many issues in my digestive system and my stomach is extremely sensitive, so I don’t eat everything, but I am learning about different lifestyle choices and adding changes to my diet. Knowing your triggers and stress reducing mechanisms help cut down on the symptoms a lot. My heart goes out to not only all the child and adult patients going through this syndrome but to all the loved ones on standby. It takes a lot of strength to watching your love ones suffer. However, I can say I represent Hope that you can go into remission for this disease. Your life doesn’t have to revolve around CVS. One of my prayers is that they continue to invest in drug treatments and research for CVS because no one should have to live with this debilitating disease.