EoE - Diagnosis

The procedure was painless. Totally.

I thought I might have a sore throat, or perhaps my voice might be affected.
Many of my friends were worried that I wouldn't be able to talk for some reason.
The sweetest was from a dear man from my church who emailed me this well-wish:

The fact is, I was yakking away just fine. I also wolfed down an entire naked burrito immediately afterward, as my friend and her kids watched in awe. Okay, only my friend was shocked. The kids were busy flinging their tortillas around.

My mom was so happy to hear my voice that day. I don't know what she thought might happen.
I didn't even look at images prior to the endoscopy, but it appears the larynx and vocal folds are completely separate from the esophagus

http://www.yoursurgery.com/ProcedureDetails.cfm?Proc=54

I was really tired when I woke up. I remember fluttering my eyes, seeing the recovery room, and going right back to sleep.
When they did discharge me, it was a little hard to walk, I think most of me was still knocked out.

My friend had been waiting for me during the procedure with her toddler and pre-schooler, and after an hour, they were tapped out on their goodwill in a waiting room with no toys! I think they let me go 20 minutes before my system was totally awake.

After the procedure, the doctor confirmed that the culprit for my pain is likely EoE. In fact, my esophagus was so inflamed that the doctor had to abandon plans to widen my esophagus for fear of perforating it.
To be honest, I didn't even know I was in that much pain. When I explained this to another friend with a medical background, she replied with astonishment, "You must have an incredible tolerance for pain!"
I guess I must. Funny thing about pain, when you live with it, it becomes your "normal". My "Hmm, that hurts." must be different from others.

Treatment plan.
I have a steroid inhaler, two doses a day to reduce inflammation. I've also started the Six Food Elimination Diet , starting by eliminating nuts and legumes.

Stay tuned!

What it Means to Go Out of Your Way

If you've wondered about the name of the blog - It's Not Out of My Way - I have to say it came as a surprise to me.

One day, I shared a story about my dad, and his generous nature. How he would go above and beyond to help someone, and never say a word about it. A friend of mine said the story was inspiration to be just a bit kinder. I replied that she was very kind and thoughtful, and probably didn't have to do more.  But that I appreciated the reminder that going the extra mile isn't that hard.

Then it came to me. Sometimes going out of our way.... is seldom really out of our way. It's probably the path we're meant to take.

Once I mulled it over, I realized that's exactly the message I want to share here. I strive to be like my dad, in helping others, in going out of my way to make a difference somewhere, for anyone.

Likewise, my EoE diagnosis certainly seems like going out of my way. I have to take extra care to avoid even more foods while we work to figure out what is causing this extreme reaction. Once again giving up foods that don't seem to cause any reaction.

But it's not so terrible. Yes, it's inconvenient, and sometimes it's not easy. But eliminating or avoiding foods is simply about discipline. That's something I know a thing or two about!
It's the path I'm supposed to be on, even if it seems ridiculous.

My EoE Experience Starts Here

I'm a freak. 
Or really, really special, depending on your perspective. 

Allergy girl. That's me. It's the foods that no one else is allergic to, that I am. Because they are the normally innocuous foods, which no one else has ever heard of someone being allergic to, some people assume I'm making it up. 

Trust me, no allergic person is making up foods to be allergic to. "Hey, if I come up with one more thing it will make me interesting!" 

Yeah. That doesn't happen. 
The good news is, as a matter of discipline, I'm really good at managing it, at avoiding the foods that don't like me. So this fall, when some strange reactions flared up, and I knew I had avoided eating any of my known assailants - well, my Doc and I knew something was amiss. 

I'll spare you the minutiae, and sum it up to say blood tests evaluating a new batch of foods came back negative, I asked my doc how we could explain the severe pain in my throat if I'm not consuming allergens. That's when he ordered an Upper GI Endoscopy. 
He had recommended it several years prior, but at that time it was presented to me as a procedure to widen my esophagus due to my tendency to choke on food. It was estimated to cost about $700 and I have a high deductible, so I just made a commitment to chew more! 

Well, now - several years later, doctors have learned more about us allergy types, and how a tendency to choke on food is related to a unique esophageal problem. The new suspect is Eosinophilic Esophagitis (or EoE). Read about it here, but to sum it up, it's a condition in which foods that aren't identified as allergy culprits via blood testing, cause inflammation of the esophagus and a lot of related pain. 
That all seemed a bit more serious. So I scheduled my endoscopy. 
I was blessed to have friends que up to volunteer to drive me home and observe me after the procedure. It was a good thing too, because I was OUT!  I don't even remember getting groggy after they gave me anesthesia, I was fully alert and then I woke up! My eyelids fluttered and I went right back to sleep. 

I've been referring to my endoscopy procedure as a very expensive nap! Truly, because it looks like the whole thing cost more than $4000 and my share is going to be around $2000. 

Here's what we learned from my very expensive nap. 

First, it turns out that although the GI observed some pretty significant strictures (narrowing of the esophagus) he chose not to widen it. They told me this as I was waking up from anesthesia and I was quietly furious (only because I couldn't summon the brain capacity to express my fury!)  

Later I learned from the GI that my esophagus was so greatly inflamed, that trying to widen it would have risked perforating my esophagus. Okay, that's a good reason. 

The inflammation is all at the top of my esophagus. Indicating that my throat pain is due to EoE, allergy related, and not heartburn or other stomach related issues. 

Now we take steps to figure out which food or foods are the culprit. I'm starting the Six Food Elimination Diet... in which for three months at a time, I will avoid a certain category of food in an effort to identify what is actually causing the inflammation. Meanwhile, I will take a steroid inhaler to treat the inflammation, hoping to bring my esophagus back to normal.

I've decided to share my experience with EoE in the hope that it will be helpful to others who are diagnosed. 
As I started to research the condition I found a lot of medical information, but not much in the way of personal experience. So this will be my offering. 

Obviously, I won't have frequent reports because the treatment process is gradual. I'll have three months of eliminating each food group, so that will take a while. For that reason, I plan to write about other topics of life as well.  I'll tag EoE posts accordingly.