Today comes quickly after yesterday's news. Some mornings are easier than others. This was not one of those mornings. I called a friend, and she held my hand from 800 miles away. I spoke to her of ideas and plans that I am making to not become a victim of my nose. I get stuck on the fact that this is permanent. Permanent. I will never be able to regain a complete sense of smell. My favorite foods will remain a tad dull. These things are not devestating; they are just sad to me. I have a tendency to dwell on the negative right now. This needs to change. I need to change.

Though it is this challenge I have chosen to focus on; it is not the lone health issue that I am facing. From my ENT's (ear nose and throat doctor) mouth these words were spoken, "I don't know why you are here worrying about your nose, when you should be worrying about your heart." He continued, "Your nose is not the real concern here, it is your heart."

It is hard to write about one's own shortcomings in a public forum. In a world where people strive to appear perfect, I am yelling that I am not. I am constantly catching myself apologizing for my imperfections, for my humanity. Silly, this not taking care of myself thing. Even now I down play the seriousness. Even now, when it is just I and this keyboard do I minimize my importance. Though this may seem irrelevant I am begging to differ. In today's conventional medicine, great measures are taken to seperate mind from physical health. I am not in control of my body's illnesses. I am to believe these illnesses will manifest themselves no matter what I think or believe; no matter how much negative energy I put into myself, there would be no difference if they instead were positive affirmations I was whispering to my psyche. Why is this the standard?

I am looking for answers. I am also working on not being as apologetic for my existence. I think it is time to cut myself a little slack.

Goodnight

INTRODUCTION

My history.A timeline if you will:

At 14 I was diagnosed with asthma
At 16 after an exceptionally long hospitalization for my asthma, the subject of sinus surgery was brought up as a way to control my asthma symptoms. That summer I had my first sinus endoscopic surgery, thinking it would be my last (casual foreshadowing)
At 17 I have my 2nd surgery hoping that they would fix what they hadn't been able to the first time.
At 20 I began to understand the deep correlation between my asthma/allergies and sinus problems.
At 22 it was time for me to find a new ENT (otoloryngologist) to perform the next surgery. I was not aware that I should be playing devils advocate and researching long term effects of these procedures. I found a new doctor to perform my third surgery, same procedure.
At 25 I had my fourth sinus surgery. Many things went wrong. The 45 minute procedure turned into a 5 hour ordeal. I lost over 2 litres of blood, my orbital wall was pierced, I had an asthma attack in the recovery room, I had to be intibated and then I coded.

I obviously woke up and got better because I am telling of my journey. Though it is getting harder everyday.


I am now 26. During the last surgery before things took a turn for the worse two stents were placed in my frontal sinuses to assist in the drainage process. One was taken out prematurely by the doctor who preformed the surgery. He decided to keep the other stent in. I ended up leaving that doctor for multiple reasons. When I did leave I took the second stent with me.

I knew that I would have to find a new surgeon. The pain and pressure was and still is overwhelming. I sought out a new surgeon. He seemed very qualified to do the job; though he had a great deal of patients. I felt that given my history I needed specialized attention. I wanted a doctor who would be able to seperate me from the masses. I did not feel as if this was the case.

I decided, with the assistance of my family, that I would look into Mayo Clinic. I had an appointment there today. I received answers, many of which I wish I could erase. I do not want to be discouraged. But it is hard not to be. My doctor told me today that he will not operate on me. There is nothing left to operate on. I have what is called Empty Nose Syndrome. The research is not comforting. I have found a community which people will listen and understand, yet I find them as discouraged, if not more so than I. One man actually posted a suicide note on the site because the ENS(empty nose syndrome) became too miserable to live with. Though he is an extreme, all the messages seem the same: nothing but misery.

I am a fighter, and I would prefer to choose my battles, but it is apparent that this one chose me. I am researching a great deal of alternative methods of healing, but also I am searching for alternatvice causes of this disease. And above all, I am searching for answers.

The Snortal Portal is dedicated to those who suffer from, well, the snortal portal. It is also dedicated to the people who choose to tolerate people like me. Thank you all for visiting. I will be updating my treatments as well as any new findings I feel are important and helpful.

Love and Light,
Amanda Kate