Sunday, May 23, 2010

A Little Bit About Me

I was officially diagnosed with Meniere's Disease ten years ago, but I have a feeling I've had it for a while longer. The signs were there, but nothing bad enough to do anything about. My journey is like that of many others with the illness. It took me a while to get a proper diagnosis because my doctor didn't believe I could have Meniere's. My grandfather suffered from it in his later years, so I thought Meniere's may explain the problems I was having. There was no way I had Meniere's because it doesn't run in families and it is too rare of an illness for me to have, but he sent me to an ENT anyway. When he told me that I in fact had Meniere's Disease, I was not surprised. He indicated there can in some cases be a familial link. At that moment I was so happy that my doctor was wrong that I didn't understand fully what my life had become. What he said next tore my world apart and shook my faith in the medical profession. He gave me a brochure on low sodium diets and told me to go look up Meniere's on the internet. His last words to me were, "you'll learn more than I know. Come back in six months." Come back? If you don't know what to do for me other than send me home to figure it out for myself why should I come back?

At that point I truly was alone. I was a stay at home mom with three young children in a troubled marriage who couldn't drive and could barely walk without assistance. On top of that, I was losing my hearing. I could not and still can't imagine a life without it. I got down to business educating myself and doing everything I could to live a normal life. I had three children to raise and making sure they had a good upbringing was more important than anything I was going through. I was eventually able to drive again and even manage to sometimes drive on the highway. I also made it through college and carry two professional credentials. My marriage is stronger than ever, but I think that is partly due to my husband realising that nobody else would put up with him. I still have my bad days where I lay in my bed crying "it's not fair," but overall my life is good. Dealing with a chronic illness can be a blessing in some ways also. Knowing how fragile things are makes me really appreciate what I do have.

Here are the main symptoms of Meniere's Disease:
1) Periodic episodes of rotatory vertigo or dizziness.
2) Fluctuating, progressive, low-frequency hearing loss
3) Tinnitus
4) A sensation of "fullness" or pressure in the ear.

Frequency and intensity of symptoms vary among individuals. Some people are so disabled by the disease that they can't work or drive. Others have a milder course that allows them to live their lives completely normally. I am in somewhere in the middle at this point. I don't know what my future holds, but I'm determined to enjoy every moment.

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