Introduction
Hello! and welcome to my EoE blog. (I have two other blogs as well.)
Personal Introduction
I'm Claire. I'm 21. I'm a Christian and have another blog of spiritual lessons. I skipped a grade and graduated when I was 17. I married my love when I was 19. He is two years older than I am so I graduated college in three years so that we would finish at the same time. I have a bachelors of science in health services. I work at home for the wellness company Melaleuca. I also have an etsy shop and blog so I have a lot going on, but it's all pretty chill. I like to raise chickens and catch frogs. I dye my hair a lot because it's exciting. I have German Shepherd/lab mix named Charger, and we go on adventures together. I'm currently a level 33 Pokemon trainer. I'm part Indian and am a member of the Osage nation, but that didn't stop me from marrying a white boy.
I want to make it very clear that this disease does not define who I am. This is just one part of my life. It's a big part, but it is just that.
EoE Introduction
Me with pictures from one of my scopes.
I was diagnosed with EE (that's what it was called then) in 2006 when I was 8 years old. My Eosinophil count was about 50 I think. Sorry it's been awhile. I went to Riley Children's Hospital, and I went on the Riley diet. This was lamb, rice potatoes, and a handful of fruits and vegetables. This diet got rid of my eosinophils, but as you can imagine, I was losing too much weight. I went on flovent with little help. My weight was dangerously low and the doctors were considering a feeding tube. My mom took me to Canada where I got on Ketotifen. This helped and I got my weight up to a healthy level. I still had some swallowing issues so when I was 12, I entered a clinical trial of budesonide. That didn't help so we think I had the placebo. I had a flare up when I was vomiting for three days straight. I got on budesonide, and it stopped the flare up. I stayed on both medications until I was 15 when I decided to stop all treatment. I was able to maintain my weight at about 115-120. I'm 5'3.5 so this was the lighter end of normal. When I was 18 the national convention was held in Indiana. My mom did A Lot of organizing and we spoke about the importance of drug trials. About the same time I entered another a drug trial of an immune suppressant shot. This treatment worked. For the first time in a long time I could actually eat and I actually had an appetite. I gained about a pound a week and got all the way up to 145, which was just barely overweight. This was horrifying to me. The problem with this immune suppressant treatment besides the ungodly amount of weight I gained was that #1 the shots were incredibly painful and #2 I was constantly getting sick. So now I am on no treatment again and am still trying to get my weight where I want it. Eating is a struggle which makes everything else a struggle.
My symptoms include: pain with swallowing, feeling like something is stuck in my throat, impaction, feeling like my throat is closing, chest pain and tightness, back pain and tightness, stomach/abdominal pain, nausea, no appetite, not wanting to eat (which are not anywhere close to the same thing), and no/low energy.
I know that my symptoms are not nearly as bad as others. For example I only very rarely get impacted or throw up. With that in mind, I don't like to compare, and I am not going to discredit what I go through just because others have it worse. This is my struggle and my story. This disease is different for everyone who has it, so I won't pretend to know what anyone else is dealing with. I am going to show you what it's like for ME with MY EoE. Writing helps me get it all out. So this is just as much for my benefit as it is for anyone reading it. I am going to complain a lot, but I want you to know that I am really not a negative person. This blog is just going to be what my life with this disease is like. It's going to be real. It's going to be raw. You have been warned.
Personal Introduction
I'm Claire. I'm 21. I'm a Christian and have another blog of spiritual lessons. I skipped a grade and graduated when I was 17. I married my love when I was 19. He is two years older than I am so I graduated college in three years so that we would finish at the same time. I have a bachelors of science in health services. I work at home for the wellness company Melaleuca. I also have an etsy shop and blog so I have a lot going on, but it's all pretty chill. I like to raise chickens and catch frogs. I dye my hair a lot because it's exciting. I have German Shepherd/lab mix named Charger, and we go on adventures together. I'm currently a level 33 Pokemon trainer. I'm part Indian and am a member of the Osage nation, but that didn't stop me from marrying a white boy.
I want to make it very clear that this disease does not define who I am. This is just one part of my life. It's a big part, but it is just that.
EoE Introduction
Me with pictures from one of my scopes.I was diagnosed with EE (that's what it was called then) in 2006 when I was 8 years old. My Eosinophil count was about 50 I think. Sorry it's been awhile. I went to Riley Children's Hospital, and I went on the Riley diet. This was lamb, rice potatoes, and a handful of fruits and vegetables. This diet got rid of my eosinophils, but as you can imagine, I was losing too much weight. I went on flovent with little help. My weight was dangerously low and the doctors were considering a feeding tube. My mom took me to Canada where I got on Ketotifen. This helped and I got my weight up to a healthy level. I still had some swallowing issues so when I was 12, I entered a clinical trial of budesonide. That didn't help so we think I had the placebo. I had a flare up when I was vomiting for three days straight. I got on budesonide, and it stopped the flare up. I stayed on both medications until I was 15 when I decided to stop all treatment. I was able to maintain my weight at about 115-120. I'm 5'3.5 so this was the lighter end of normal. When I was 18 the national convention was held in Indiana. My mom did A Lot of organizing and we spoke about the importance of drug trials. About the same time I entered another a drug trial of an immune suppressant shot. This treatment worked. For the first time in a long time I could actually eat and I actually had an appetite. I gained about a pound a week and got all the way up to 145, which was just barely overweight. This was horrifying to me. The problem with this immune suppressant treatment besides the ungodly amount of weight I gained was that #1 the shots were incredibly painful and #2 I was constantly getting sick. So now I am on no treatment again and am still trying to get my weight where I want it. Eating is a struggle which makes everything else a struggle.
My symptoms include: pain with swallowing, feeling like something is stuck in my throat, impaction, feeling like my throat is closing, chest pain and tightness, back pain and tightness, stomach/abdominal pain, nausea, no appetite, not wanting to eat (which are not anywhere close to the same thing), and no/low energy.
I know that my symptoms are not nearly as bad as others. For example I only very rarely get impacted or throw up. With that in mind, I don't like to compare, and I am not going to discredit what I go through just because others have it worse. This is my struggle and my story. This disease is different for everyone who has it, so I won't pretend to know what anyone else is dealing with. I am going to show you what it's like for ME with MY EoE. Writing helps me get it all out. So this is just as much for my benefit as it is for anyone reading it. I am going to complain a lot, but I want you to know that I am really not a negative person. This blog is just going to be what my life with this disease is like. It's going to be real. It's going to be raw. You have been warned.
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