meaghan's CVS Story
I'm 50 years old and have suffered with Cyclic Vomiting Syndrome my entire life for which there is no known cure. My mother said I entered the world projectile vomiting and it's never stopped. I have been hospitalized more times than I can count (14 hospital visits and/or admissions in the last year alone). My first memory of being hospitalized was when I was 5 years old. I remember laying in the hospital bed , doubled over in pain, vomiting and being scared to death!
I have no idea what it's like to live a normal life. I have had my gallbladder removed, my appendix removed. I suffered three miscarriages and one ectopic pregnancy that ruptured my fallopian tube and I nearly died from internal bleeding. I was told I could never naturally conceive a child, as my remaining fallopian tube was inexplicably too far damaged with scar tissue and even if I could conceive my body doesn't absorb the proper nutrients to carry a child to term. By some miracle I was blessed with my son, Cole, when I was 30 years old.
After the birth of my son, the CVS got much, much worse. I was so sick so often I lost the first of many jobs. I was thrilled when I found a new Gastroenterologist who diagnosed me with Celiac Disease. I spent every chance I had researching Celiac Disease, I completely changed my diet (went totally gluten free and gluten is in EVERYTHING, I even stopped wearing makeup because so many cosmetic products contain gluten), my lifestyle and I continued to get sick, even worse than before. This gluten free hell continued for eight years. That's when I found my current Gastroenterologist who retested me for Celiac Disease and the tests were all negative! So, once again I feared I'd be faced with another doctor looking at me scratching his head, dumbfounded as to how to diagnose/treat me. Instead he told me he could confidently diagnose me with Cyclic Vomiting Syndrome. That was the good news, the bad news was that there is no cure.
The doc was very optimistic that we could treat this with medication and started me on Amitriptyline. Since my diagnoses eight years ago I have had several colonoscopies, endoscopies, CT scans, MRIs, digestive tests, been on at least ten different medications. You name it, I've experienced it. I currently have to take 4 daily preventative meds and I spend most days in a medicated fog.
I have been unable to hold a job, been denied Social Security Disability and I am currently appealing that denial. I missed out on so many different activities/events throughout my Cole's school years, as well as birthdays, anniversaries, weddings, holidays, etc. I've developed a fear of food, fear of eating, fear of making plans. I get so depressed I don't even want to get out of bed. I feel like I am a constant disappointment to my family friends. I also suffer from awful panic attacks and migraine headaches.
The only good thing to come out of all of this is that I've met some incredible people throughout this awful journey that is my life. I feel so very fortunate and blessed to have found all of the wonderful people in the CVS support groups. Although I have an incredibly supportive family, no one can understand the daily struggle like the others in the support groups do. So I will continue to fight and struggle alongside all of you until a cure is found!
Peace, love and good health to all of you ♡
I have no idea what it's like to live a normal life. I have had my gallbladder removed, my appendix removed. I suffered three miscarriages and one ectopic pregnancy that ruptured my fallopian tube and I nearly died from internal bleeding. I was told I could never naturally conceive a child, as my remaining fallopian tube was inexplicably too far damaged with scar tissue and even if I could conceive my body doesn't absorb the proper nutrients to carry a child to term. By some miracle I was blessed with my son, Cole, when I was 30 years old.
After the birth of my son, the CVS got much, much worse. I was so sick so often I lost the first of many jobs. I was thrilled when I found a new Gastroenterologist who diagnosed me with Celiac Disease. I spent every chance I had researching Celiac Disease, I completely changed my diet (went totally gluten free and gluten is in EVERYTHING, I even stopped wearing makeup because so many cosmetic products contain gluten), my lifestyle and I continued to get sick, even worse than before. This gluten free hell continued for eight years. That's when I found my current Gastroenterologist who retested me for Celiac Disease and the tests were all negative! So, once again I feared I'd be faced with another doctor looking at me scratching his head, dumbfounded as to how to diagnose/treat me. Instead he told me he could confidently diagnose me with Cyclic Vomiting Syndrome. That was the good news, the bad news was that there is no cure.
The doc was very optimistic that we could treat this with medication and started me on Amitriptyline. Since my diagnoses eight years ago I have had several colonoscopies, endoscopies, CT scans, MRIs, digestive tests, been on at least ten different medications. You name it, I've experienced it. I currently have to take 4 daily preventative meds and I spend most days in a medicated fog.
I have been unable to hold a job, been denied Social Security Disability and I am currently appealing that denial. I missed out on so many different activities/events throughout my Cole's school years, as well as birthdays, anniversaries, weddings, holidays, etc. I've developed a fear of food, fear of eating, fear of making plans. I get so depressed I don't even want to get out of bed. I feel like I am a constant disappointment to my family friends. I also suffer from awful panic attacks and migraine headaches.
The only good thing to come out of all of this is that I've met some incredible people throughout this awful journey that is my life. I feel so very fortunate and blessed to have found all of the wonderful people in the CVS support groups. Although I have an incredibly supportive family, no one can understand the daily struggle like the others in the support groups do. So I will continue to fight and struggle alongside all of you until a cure is found!
Peace, love and good health to all of you ♡
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