alley's CVS Story
My name is Alley, I am now 27 years old, and this is my story. This has been my battle.
I feel like 6 years can't really be that long, but I can't quite remember what life was like before I "got sick." There was a time when I didn't live this way. There was a time when I took my healthy days for granted because I didn't know there would come a day that they would suddenly be stolen from me.
Let's rewind six years. It's Thanksgiving/Christmas time! I just found out I'm pregnant and going to have my first baby! It was one of the greatest things to happen in my life! And I was sick as could be. Which was normal for being in my first trimester, right? So just push through it and it will be over soon, right?
Well, all 3 trimesters- 8 and a half months, 60 pounds less, days upon weeks upon months in the hospital, PICC lines, hundreds of bags of fluids and electrolytes, tons of meds, and a lot of nausea and vomiting later... I got through it! I had my miracle baby boy! And what I thought, what we ALL thought, was a terrible pregnancy- was finally about to be put behind me to live a healthy, happy life with my little boy, Devin!
Okay, now fast forward through my three "normal" months after Devin is born. It's right before Devin's first Halloween. October. I had my first "episode." I woke from a sleep in cold sweats, as nauseous as I was all the days I was pregnant. I couldn't stop getting sick. I was bed ridden. Vomiting blood. Trouble breathing. But what the hell was this? I knew I wasn't pregnant but this definitely wasn't any virus or flu. I went to the ER and was admitted. Tests were run with nothing to show. They gave me IV meds and fluids and got me well, with the question still in the air-- what the hell was this?
Well now we know it's what we call an "episode" or a "flare up" of my Cyclic Vomiting. What is an episode like? It's unremitting nausea. It usually wakes me up in the early hours of the morning. Between 4 and 6. The nausea is so bad and everything makes it worse. Like having a migraine headache- you become very sensitive to lights and sounds. Noises and lights usually make me throw up so I try to stay perfectly still, curled up in a dark room with my head completely wrapped up in a blanket covering my ears and eyes. During the whole thing, I must chug ice water. Even though chugging the water makes me instantly throw up... the acid in my system is so bad and burns so much that I need the water to ease the effects of the acid on my oesophagus. Usually it gets so bad that I end up getting blood in my vomit. My heart rate is tachy and usually somewhere up around 160 BPM. My veins are usually collapsed from being so dehydrated making it hard at the hospital to get an IV in to start the meds and fluids. Usually I can't carry any of my things aside my blanket and puke bucket. My mother will carry all my bags and sometimes must wheel me to a bed at the hospital because the nausea is so debilitating I can hardly walk. She must answer for me when the doctors come in because even the act of speaking makes me vomit. I get dizzy and I drool and I can't really handle anything at all, period. I get panicky and scared. Until they finally dose me with some sort of anti-nausea med combined with Ativan and Benadryl to hopefully ease me into a recovery phase.
Now let's fast forward back to today. Looking back over these past 6 years of debilitating nausea and vomiting controlling my life: I have had gastric emptying studies, countless blood tests, CAT scans, MRIs, a liver biopsy, endoscopes, colposcopies, Sitzmarker tests, X-rays, have seen countless doctors, and have had hundreds of ER trips and hospital admissions. I had to leave a job that I loved. I had to give up the majority of any sort of outside "life." I had to fight for two years to get help with SSI and disability with no job while being in and out of the hospital sick 80% of the time. I had to get ALL my teeth removed and dentures out in at the age of 26 due to all the damage from the years of vomiting. Cyclic Vomiting Syndrome has effected all aspects of my life. It has effected relationships and friendships. It has affected my work and my social life. It effects my home life. My daily living.
Most people don't even realize how much agony I am in as I am walking around either trying to grocery shop, or get the dishes done, or get my son off the school bus. These simple, simple everyday tasks sometimes become like mountain high obstacles for me if the "demon" decides to strike. When the nausea hits, it's like a war. It's you fighting with everything you have just to get through the rest of the day... just to breathe. Just to get your baby off the school bus safe without having to hide how bad you want to throw up... but you hold it in because all his friends are there... and you don't want him to have to have "the sick mom."
Cyclic Vomiting Syndrome has not only caused be a great deal of physical ailments... but it has also made me so angry, and so very sad, and alone, and guilty, and suicidal, and crazy, and so many other feelings that you just must push through. Because one thing Cyclic Vomiting Syndrome has GIVEN to me is a band of warriors... a FAMILY that I have gained that I have found all around the world that suffer this same illness. And we DON'T give up. No matter how many times we get knocked down... we fight again and again because we want and deserve answers. We don't want to just "get through" our days. We want to LIVE and feel GOOD. We want a CURE. So, we push through it all.
So here I am. It's been a crazy, tiring six years. But I haven't given up because there are things in this life I still want. I can't let Cyclic Vomiting Syndrome steal any more from me. There must be better days because I am going to be getting married next spring. And I want to have more babies. And I want to go back to school. And I want to go on vacations and travel and make plans without the fear of it all being ruined by the demon that is nausea and vomiting. I want my life back, even if I can't quite remember right now what my healthy life was. I will get it back. Please share my story to make others aware that this illness is real and scary and NEEDS a cure! Thank you to all my family and friends and CVS family for always supporting and encouraging me to continue to fight!
I feel like 6 years can't really be that long, but I can't quite remember what life was like before I "got sick." There was a time when I didn't live this way. There was a time when I took my healthy days for granted because I didn't know there would come a day that they would suddenly be stolen from me.
Let's rewind six years. It's Thanksgiving/Christmas time! I just found out I'm pregnant and going to have my first baby! It was one of the greatest things to happen in my life! And I was sick as could be. Which was normal for being in my first trimester, right? So just push through it and it will be over soon, right?
Well, all 3 trimesters- 8 and a half months, 60 pounds less, days upon weeks upon months in the hospital, PICC lines, hundreds of bags of fluids and electrolytes, tons of meds, and a lot of nausea and vomiting later... I got through it! I had my miracle baby boy! And what I thought, what we ALL thought, was a terrible pregnancy- was finally about to be put behind me to live a healthy, happy life with my little boy, Devin!
Okay, now fast forward through my three "normal" months after Devin is born. It's right before Devin's first Halloween. October. I had my first "episode." I woke from a sleep in cold sweats, as nauseous as I was all the days I was pregnant. I couldn't stop getting sick. I was bed ridden. Vomiting blood. Trouble breathing. But what the hell was this? I knew I wasn't pregnant but this definitely wasn't any virus or flu. I went to the ER and was admitted. Tests were run with nothing to show. They gave me IV meds and fluids and got me well, with the question still in the air-- what the hell was this?
Well now we know it's what we call an "episode" or a "flare up" of my Cyclic Vomiting. What is an episode like? It's unremitting nausea. It usually wakes me up in the early hours of the morning. Between 4 and 6. The nausea is so bad and everything makes it worse. Like having a migraine headache- you become very sensitive to lights and sounds. Noises and lights usually make me throw up so I try to stay perfectly still, curled up in a dark room with my head completely wrapped up in a blanket covering my ears and eyes. During the whole thing, I must chug ice water. Even though chugging the water makes me instantly throw up... the acid in my system is so bad and burns so much that I need the water to ease the effects of the acid on my oesophagus. Usually it gets so bad that I end up getting blood in my vomit. My heart rate is tachy and usually somewhere up around 160 BPM. My veins are usually collapsed from being so dehydrated making it hard at the hospital to get an IV in to start the meds and fluids. Usually I can't carry any of my things aside my blanket and puke bucket. My mother will carry all my bags and sometimes must wheel me to a bed at the hospital because the nausea is so debilitating I can hardly walk. She must answer for me when the doctors come in because even the act of speaking makes me vomit. I get dizzy and I drool and I can't really handle anything at all, period. I get panicky and scared. Until they finally dose me with some sort of anti-nausea med combined with Ativan and Benadryl to hopefully ease me into a recovery phase.
Now let's fast forward back to today. Looking back over these past 6 years of debilitating nausea and vomiting controlling my life: I have had gastric emptying studies, countless blood tests, CAT scans, MRIs, a liver biopsy, endoscopes, colposcopies, Sitzmarker tests, X-rays, have seen countless doctors, and have had hundreds of ER trips and hospital admissions. I had to leave a job that I loved. I had to give up the majority of any sort of outside "life." I had to fight for two years to get help with SSI and disability with no job while being in and out of the hospital sick 80% of the time. I had to get ALL my teeth removed and dentures out in at the age of 26 due to all the damage from the years of vomiting. Cyclic Vomiting Syndrome has effected all aspects of my life. It has effected relationships and friendships. It has affected my work and my social life. It effects my home life. My daily living.
Most people don't even realize how much agony I am in as I am walking around either trying to grocery shop, or get the dishes done, or get my son off the school bus. These simple, simple everyday tasks sometimes become like mountain high obstacles for me if the "demon" decides to strike. When the nausea hits, it's like a war. It's you fighting with everything you have just to get through the rest of the day... just to breathe. Just to get your baby off the school bus safe without having to hide how bad you want to throw up... but you hold it in because all his friends are there... and you don't want him to have to have "the sick mom."
Cyclic Vomiting Syndrome has not only caused be a great deal of physical ailments... but it has also made me so angry, and so very sad, and alone, and guilty, and suicidal, and crazy, and so many other feelings that you just must push through. Because one thing Cyclic Vomiting Syndrome has GIVEN to me is a band of warriors... a FAMILY that I have gained that I have found all around the world that suffer this same illness. And we DON'T give up. No matter how many times we get knocked down... we fight again and again because we want and deserve answers. We don't want to just "get through" our days. We want to LIVE and feel GOOD. We want a CURE. So, we push through it all.
So here I am. It's been a crazy, tiring six years. But I haven't given up because there are things in this life I still want. I can't let Cyclic Vomiting Syndrome steal any more from me. There must be better days because I am going to be getting married next spring. And I want to have more babies. And I want to go back to school. And I want to go on vacations and travel and make plans without the fear of it all being ruined by the demon that is nausea and vomiting. I want my life back, even if I can't quite remember right now what my healthy life was. I will get it back. Please share my story to make others aware that this illness is real and scary and NEEDS a cure! Thank you to all my family and friends and CVS family for always supporting and encouraging me to continue to fight!
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