Today something has been heavy on my heart. And I feel I have to share it now while all of my thoughts are together. Usually, I talk about something relating to society or something funny in my life, or mainly I talk about my review about something or reporting about a rumor. But tonight I am coming straight from the heart and I know a lot of people can come out of this post and spread it to others that need it desperately.
As you can tell from the title, I have Eosinophilic Esophagitis Syndrome (EE). For those who don’t know what EE is, or even know how to say it, don’t worry, because I still don’t know how to pronounce it right, nor am I 100% aware of what it does and how it effects me. I was diagnosed 4 years ago this August, but now that I look back, I feel that I have always had it. Since my diagnosis, and even before that, I have had good and bad experiences that tell me my limits with this syndrome, and what I need to do to manage it.
Basically in a nutshell, according to Wikipedia, EE is “an allergic inflammatory condition of the esophagus. Symptoms are swallowing difficulty, food impaction, and heartburn. The disease was first described in children but occurs in adults as well. The condition is not well understood, but food allergy may play a significant role.”
I think I am writing this for the families and the individuals such as my family and myself that went for years without knowing, and could possibly live a better life. People seem to read what they find on the internet alot quicker, so I hope this is reached by much needed people. Remember, I am just a blogger without a degree in this field. So if you have any thought that you or someone you know may have this, go to a site that can give you the straight facts. I know so many people have their own stories and their own journey’s, but today I want to tell you mine.
I was a very sick child during my youth. Probably more than others. I had asthma, and I had dozens of allergies. I could only drink so much milk as a baby before I refused it. I seem to have been a child that had to watch everything. Later on, I was tested and was allergic to over 50 things. The big ones were Milk, Eggs, Wheat, and Peanuts.
Now that I think back, years after my diagnosis, I have been able to peice all of my illnesses all back to EE or as a result. Asthma, which apparently is a common symptom, was a big problem in my youth, and the constant consumption of any dairy products and any of the other big allergy products were also problems. I remember always having pain inside, and both me, and my doctor mistaking it for a stomach ache. That is why I feel that I have had it since birth.
For years I would wake up in severe pain. And while hearburn pills would sometimes cut it, sometimes it wouldn’t even mask the pain I was feeling. I would wake up and toss and turn throughout the night trying to make the pain go away, but would fail.
It wasn’t until my Sophomore year that I realized something was wrong. After having pizza for lunch, I sat in my last class and could feel something change in my body. My chest seemed to tighten and my throat was clogged shut. I couldn’t breath, and I felt pains all over, especially on my left side. And I could feel my heart racing. From what I heard I honestly thought I was having a heart attack. And I think I was in a state of panic because I was frozen for the entire class. A part of it was because I didn’t want to cause a scene, but it was also because I had no energy to get up and attempt to go anywhere.
I think I was washed with adrenaline because I mustered the energy to get up and walk/crawl to my car. When I managed to get in, I cried. I cried like a baby. Partly because I was not in control of what was happening to me, and also because of the fear of not knowing what was going on. I joke about it now with my family, but I was waiting for the “sweet release of death”. The pain was blinding, and I think death did cross my mind several times that afternoon.
After managing to get a hold of my mom, I drove home, which is what I now think was against my better judgement. We then went to the doctor to see what was wrong. I was still set on it being a heart attack because it all fit. But they said I was fine and couldn’t find anything wrong with me. Just the regular acid reflux that they always said I had.
After the numerous pills and no conclusion to what was wrong, I was referred to a pediatric doctor in Asheville, NC. Immediately upon arrival and a short list of my symptoms, my doctor was positive that EE was the cause of my pain. We instantly began planning endoscopies and biopsies and a strict diet that I was to follow. No dairy. No! Dairy is in everything, and I think I instantly craved things that I couldn’t have.
The results were nearly 100% clear. I had Eosinophilic Esophagitis. I was diagnosed with it officially that August. For most cases they say that families and the individual go through a sudden change because of it. But for me I think it was easier because the foods that were causing this were the foods I never really liked. But I do admit it was hard because you don’t realize how much dairy and eggs in in food until you really start watching what you eat.
Close to 4 years have passed, and I have stuck with my medicine and diet and I have stayed healthy, if not healthier since my diagnosis. But throughout all of this there has been struggles with temptations to eat those “forbidden” foods, or finding foods that contain anything that you cannot have, for finding our McDonalds cook their food in peanut oil now.
Another struggle is having people not understanding your condition. I have had to turn down outings with friends because they decide to go somewhere where there is nothing I am able to eat. It is also hard when I have family that forget about my condition for one second when ordering. That leaves me in a “eat the food of death or starve” situation.
Something that I realized recently is that I haven’t been able to find someone that really understands what I went through and what I still go through today. EE is only found in 1 out of 10,000 people. So finding someone to talk to other than a doctor is rare. And it gives you a sense of being alone. But I think that is why I am writing this. To make more people aware that anyone could have this.
So if you have any indication that you may have EE, I would suggest you go to a doctor and get diagnosed right away. I know my life has changed drastically and for the better because of it. And if you want more info, you can read Wikipedia and it’s resources. I really wanted to provide more information to people wanting to know more, but I just don’t have all the space to talk about it.
So this is my story about Eosinophilic Esophagitis. And I am not the only one. Many of you are or know someone dealing with EE. Tell your story. If not on here, then somewhere else to help more people become aware. While EE cannot be cured, it can be treated, and I want everyone to have the same treatment I got.
God Bless, and the best of health!