CVS An Invisible Illness; By Madison T. Ortiz
To understand the entirety of my story, I feel I need to share a prequel to my personal saga
My younger brother was diagnosed with Cancer, Clear cell sarcoma of the kidney, Stage IV on May 5 1997. He just turned a year old. My family went through a lot during that time in our lives and I learned truly valuable life lessons at 4 years young. Dakota made a miraculous recovery and is a healthy young man starting his first year of college!
I am truly very thankful for the medical professionals that saved Dakota’s life. However, I have not personally had such luck in the medical professional department.
We moved to Michigan from Southern California in the middle of my first grade year. In elementary school I began complaining of stomach aches very regularly. I didn’t like to play outside with the other kids on the playground after eating lunch. In hindsight eating has been a trigger of mine for quite some time…. but most of all in elementary school I remember the beginning of my war with migraines. They happened at the same time every day and my teacher thought I was always trying to get out of his class. I loved school, and truly was sick to my stomach from migraines on a regular basis. ‘A kid with migraines that regularly? She’s lying! She wants attention. Etc etc…’
I remember always being very fragile. I was at Girl Scout camp and a friend picked me up and set me down in a way that my body didn’t agree with. That was the very first blackout I recall having. There was literally always something wrong with me. So much so that it was hard to vocalize everything to my parents and doctors properly. I vividly remember heaving every morning as I was trying to get ready for school. I was so nauseous in the mornings but didn’t know how to express it with enough severity amongst the other regular pains. The morning heaving happened so regularly, I guess I thought it was normal after a while.
I don’t know exactly when the vomiting episodes started but I vividly recall being in the middle of a children’s choir rehearsal’s snack time, sippin’ on a juice box, when suddenly the puke monster attacks out of nowhere. Similar up-chucking episodes and regular violent battles on the potty continued throughout my life in ways that seemed very random in the moment. but in hindsight became so very clear as to what triggered specific episodes, and which ones were simply part of my body’s cycle.
Beyond the basic symptoms of the disease there are unfortunate things that happen because of the regular episodes of vomiting. In High School, I was so thrilled to be involved in drama club. I was backstage one day during rehearsal and began spewing blood from my mouth. My friends eyes gazed upon me in absolute horror as I assured them this was normal for me (at that time in my life). Another memorable scene from that year was in my Graphic Design class – I felt the blood coming up in the middle of a lecture we were not supposed to interrupt, so I excused myself and before I knew it woke up on the floor of the print room covered in blood and surrounded by a scene of bloody finger smears from my fainting. My insides were so raw from my puke-monster episodes that it caused me to bleed from my mouth and in-turn scare the living shit out of anyone who witnessed it.
I was so very visibly skinny and rapidly losing weight during certain periods that I actually had adults.. TEACHERS, reaching out to me telling me I needed to “eat, or get help!” As if I wasn’t already aware I was withering away.. (This is the kind of ignorance I am sharing my story to prevent!!)
It’s hard to describe every little symptom I’ve faced in my years, but beyond the physical pain, I have struggled with much more. As many other people who identify themselves with CVS, I’ve been misdiagnosed so many times and prescribed so many drugs that I couldn’t tell them all to you if I tried. Unfortunately, my body has had bad reactions to nearly every medication I’ve taken, and I have even suffered recently from a very rare Prednisone psychosis episode after taking the drug for only a week and a half. My speech was affected for a week following the drug induced Psychosis episode. – Drugs have simply not been my friend! They have not ever given me relief in a way that some people experience. I respect everyone’s choice to medicate as they feel is best, but I know that my body’s only relief in the past 4+years has come from Medical Marijuana, which was prescribed by my family doctor after years of careful evaluation with no success and a desperate need to relieve nausea and stimulate an appetite.
Not many doctors know much about Cyclic Vomiting Syndrome, but unfortunately there are some doctors out there who literally immediately dismiss any vocalization of CVS with the mention of usage of marijuana, claiming it’s not CVS and instead Cannabinoid Hyperemesis Syndrome. I have been medicating with marijuana for the past 4 years but my symptoms began far far before my desperate reach for a puff of relief – Unfortunately some people who consider themselves medical professionals feel their quick two second assumption is cause for dismissal of an invisible beast I stare in the face every day.
I don’t like to admit this because I try to appear strong as can be, but as of where I stand today, I am in pain regularly. I wake up with nausea ranging in severity every morning and often am actually woken by several urgent zombie-like runs to the potty with uncontrollable and severely painful bowel movements. Although I vomit much less frequently in my adult life, my body still heaves rather regularly, causing me to experience the feeling and sounds of throwing up without the actual vomit. My body is weak & I have little energy, making it hard to live the life of a typical 21 year old. My triggers effect me daily so I haven’t really been able to understand what my cycle’s timing is, where as some people can mark on a calendar when they will get sick. I simply can’t entirely avoid my triggers because they are things like : Excitement (the “yay” kind and the Giggidy kind), bright lights, Anxiety, and my biggest struggle… ingesting food. I love to cook, absolutely adore food and am the huuuugest piggie when I have the brief pleasure of being graced with an appetite, but in my more adult life, no matter what I eat I feel severe pain before even finishing the meal.
I can rarely finish a plate, or even a sandwich for that matter. And if I do, it causes me to be on the potty typically immediately after. My food goes through me so quickly I am having a hard time absorbing the nutrients I need from my food. I also get nauseous and heave at the thought or smell of food in the wrong moments because my body is so very aware of the pain food causes me.
This is a novel already and if you’ve made it this far you’re surely not interested in more icky details. What you DO need to know is that there is a significant sized group of us out there who are fighting an invisible illness called #CyclicVomitingSyndrome, and we need YOUR help to spread awareness. We need understanding, education, acceptance, and a cure! Please help me and this group spread awareness by giving this post some activity. Likes and Shares are FREE, and getting the message about CVS out there is much more important than that cute cat video you just shared anyway!
I do not share this deeply personal story for pity and especially not for narrow-minded judgments (so please keep those to yourself). This is for the amazing people I have met who have given me strength to fight another day, who remind me that I’m not crazy, that I’m not alone. Love you all!
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