Wednesday, September 10, 2008

Eosinophilic Esophagitis and why it is not fun

I was just realizing yesterday that I am not sure if I could tolerate a mental illness, but physical problems I can handle.  I guess that is why I have been blessed with so many physical trials.  It is okay, I am a better person because of these things.

I was recently diagnosed with Eosinophilic Esophagitis.  Exactly.  It is about as confusing and obscure as it sounds.  I finally got into the allergist that knows what he is doing (and is a world expert, if anyone can be called an expert, on EE).  Unfortunately he is not covered by my insurance, so I had the opportunity of experiencing self-pay.  Almost $400 later...

Anyway, what this means for me is that my esophagus is inflamed severely, meaning that it is now much too small.  It is fun.  I chew a lot.  A lot a lot.  I have to take a bunch of meds that they hope will help, but they don't know if they will.  Any by "take meds" I mean that I have to either chew the pills or get the meds as syrups so that they don't get stuck in my throat.  And they did a bunch of skin allergen testing.  Luckily (or unluckily depending on your view) I did not react significantly to anything.  Soy sort of reacted, but only sort of.  So for now, no change in my diet.  Although an elemental diet has not been ruled out for future treatment.  Think how much easier it would be to be able to drink all of my food.  That sounds really nice.

So, no real answers on that front.  The amusing thing is that I will probably start being treated at Primary Children's because my doctor is going to start there and my insurance will cover my treatment there.  He suggested we just pretend I am a teenager.  Shouldn't be too hard.
In other news, he said I have cholinergic urticaria.  What that means is that I get hives a lot.  It is not fun.  I am going to have to take medicine for this.  And, since I can't swallow much of anything, I get to take the medicine as a liquid.  Sweet.  Hopefully this will make it so that I can start going to the gym again without getting so itchy.

As always, I am just keeping it real.  At least it is nothing that is going to kill me or shorten my life.  I may sound discouraged, but I am not.  It is going to be okay.  Everything always works out.  I have faith and hope.  And until then I chew very thoroughly.  It is a good weight loss plan.


Liz Johnson said...

Have you considered the possibility that maybe you actually are schizophrenic and/or delusional, and that none of this is actually happening? Maybe then they could just give you seroquel or whatever and you'd be back to normal, whatever that may be.

Just thinking outside the box here.

Leserlee said...

I didn't think you sounded discouraged. Good luck with everything. I know for me it always helps to know what is wrong, even if the treatment isn't always obvious. And hooray for being able to be treated at work.

maidmarian4 said...

I'm sorry to hear you have this ailment. Bummer that it is an obscure thing. ((HUGS)) Let us know how well all the meds work etc! I hope they do work, and work well for you.

Jackie said...

So pretending that you are a teenager now. So... that would mean that the boy that was flirting with you on trax can now ask you out? Right? Just kidding!

Jenn said...

You're the second person this week that I've heard of having this exact diagnosis. Bizarre! I wish I knew what to tell you . . . seeing as I'm supposedly a swallowing expert. I hope your medications help! Please keep me posted!