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Sunday, August 15, 2010

Why? Do my feet feel like I'm walking on egg cartons

It began with a very difficult choice I had to make. So difficult that I could not go to sleep that night. Well maybe a few minutes around 5 a.m. And so it went for 7 days in a row. Somewhere along the line one night I had an entire body heat flash(like a total niacin flush). And the next day, my legs began to itch. One problem was that days 6 and 7 were on the weekend. I finally got into see the doctor. He did not know what was happening to me, but prescribed prednisone and Ambien for sleep(I have taken ambien nightly for the past 7 years).
The itching turned into a burning in my feet. I remember attending the Kansas State vs California game and feeling that my feet were buried in hot sand. By the way, Ambien saved my life because through it all I have been able to sleep.
I was finally was diagnosed with Idiopathic Small Fiber Peripheral Neuropathy. I suffer 24/7 with burning in my feet, lower legs, a bit in my hands and arms and in my face and times in my mouth.
I take 800mg of Gabapentin 3 times a day. It helps about 20%.
I think around 2% of the population has some form of neuropathy. Neuropathy involves the immune system attacking the nervous system. It is a very cruel disease. Mine is idiopathic, meaning that the cause is unknown. It progressed very rapidly and I thought I was dying, but the progression slowed and I am still functioning for example, still playing golf.
You may ask or should ask, how are you able to survive this and the answer is
"you may beat me,but I am not beaten. I cannot be defeated or beaten by anything or anyone. I will never,ever give in or give up. Even in death I am not defeated".
Remember, "we are what we think". I choose to ignore my illness and focus on helping to raise my grandchildren, occasionally play some golf and religiously follow the Kansas State University Wildcats.

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