Thursday, September 17, 2009

If you're deaf in one ear, can you still hear in stereo? -Why 2009 is my year

Copied from my Facebook notes...

Many of you kindly indulged my lengthy note on the ins and outs of Meniere's Disease and for that...thanks!. What I wrote was the basic, medical mumbo jumbo that you can find doing a simple internet search. Now I feel the need to explain the personal part of this disease. Perhaps, my own catharsis. Again not for your pity but to increase everyone's understanding of my condition and maybe to help us all realize we never know what other people are going through. We need to be more understanding and accepting. This is something with which I am challenging myself to be better. This started for me when I was 25 years old. I was living the good life in Boone at the time. The journey from the first vertigo attack to diagnosis took almost a year. I was tested for various tumors, (including brain), lupus, and multiple sclerosis to name a few. I also saw a Ear-Nose-Throat doctor who told me that "I would grow out of it." Remember: I was 25 at the time. Grow out of it???? Needless to say, it was frustrating and nerve-wracking. I was having vertigo attacks 3-4 times a week that led to violent vomiting and wishing I could just die so it would be done with. The attacks would wake me up at night and last hours. You can't sleep through one of those suckers. I had no medication to fight it and no answers as to what was wrong with me. I had to drop out of school. I was trying to work as a waitress but was failing at that as well. It was at this time I began to realize people do not deal well with illness. Some relatives and co-workers accused me of faking it. Friends quit calling. When I finally got my diagnosis, I started getting a lot of this: "Oh I know somebody with that and they're fine. They work." Or "I get dizzy too and I'm okay." I would graciously smile and go on my way but inside my head I was screaming expletives at these people. Don't pretend you can relate to someone if you haven't been through it yourself. When it's an invisible disease, people tend to think it doesn't exist. I finally gave up explaining it to people which I now realize was a mistake.
Fast forward...I had surgery years ago on my ear and got some good results. Now I am under the care of a knowledgeable doctor at Baptist Hospital and I am in better shape. However, this stupid disease is still running its course. I have lost close to 50% of my hearing in my affected ear. It fluctuates and some days it's better than others but it's still bad. Hearing aids are in my future (if they'll work for me.) Speech distortion is a problem at the moment. The tinnitus is 24/7. I can't stand a silent room because the squealing is unbearable. I go back every summer for a hearing test to see how things are progressing. Last summer's test was the worst yet. I go back in a few weeks for the next one. Fingers crossed that it'll be better. Ironically, sudden loud noises can bother me too. The scariest attack I ever had was when my toddler son screamed in my ear. I was home alone with a 2-year old and a newborn. I crawled to the phone, got help, threw up and then laid there stuck on the floor unable to move. Since then, I keep my cell phone close and Valium in my pocket. Valium, if taken quickly enough, can stop a vertigo attack in its tracks.
So as for 2009, I figure my hearing in my left ear is about shot. I may end up with this in my good ear too. Some signs are there that it's happening now but nothing definite. Odds are in my favor that it won't happen in my other ear. I keep thinking of all the things I can't do...like scuba dive, fly, go on a cruise, pass a sobriety test, etc. My so-called "Bucket List" included seeing various artists in concert and going to the beach so I could hear the waves again. While it is not the financially responsible thing to do, I can't help myself. I want to go while I can still hear Bono go into one of his awesome monologues. I want to hear the perfect pitch of Jason Mraz. I want to shake my booty to G.Love while I can still hear the beat. And in a few short weeks, I'll be sitting on the beautiful beach listening to the waves crashing in. I may be drugged up on some valium to get through but if I'm lucky, it'll just enhance the experience!! :-) And maybe if I'm really lucky, I'll stabilize and be able to make 2010 my year too! and 2011, 2012, 2013...Party on people. Do it while you can!

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