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Kelly's Story

Hi, my name is Kelly and I have had Lyme Disease for 23 years. I got bitten while vacationing in Florida as a child. I was bitten by a tick and ten days later as we returned home to New Jersey, I had the classic Lyme rash, swollen, red, aching joints, and general flu-like symptoms. My parents, Joanne and Jesse, took me to our pediatrician, and he gave us a cream for the rash and sent us to the rheumatologist, suspecting juvenile rheumatoid arthritis. Off to another doctor who was less than gentle or kind to a scared 12 year old in pain. If we adults get such blow-off treatments, imagine how a child must feel!

A knee tap was done with no extraordinary results. All tests came up negative but because I had all the "classic signs" of JRA, they gave me that diagnosis. So I went through most of my childhood and teenage years on and off aspirin therapy, which ruined my stomach and made my ears ring like mad. By the time I hit high school, it had spread to my brain. Looking back now and knowing the symptoms, I feel this to be true. I was always dizzy, forgetful, confused, and lost track of space and time. Definitely not normal teenage hormones, although I was constantly told this by my family doctor. Either that, or I had to be on drugs. No other explanation for this behaviour.

I lost friends because they just couldn't relate to how I was feeling or who I had become. All hopes of going to college to be a professional musician were quashed. I could not even stay until the end of the day for school because I would have to go home and sleep! For the next 10 years, it was just a roller coaster ride of symptoms, bad diagnosis, and constant feelings of isolation and aloneness. I was far from home in North Carolina because my husband was in the army then and this was what had to be. Needless to say, this took a toll on our marriage and we divorced in 1988. I was left alone with this devastating disease to work 2 jobs, and raise a newborn baby and a 4 year old child.

I know now that it was only the grace of the Almighty that kept me going. Looking back, if His hand was not on me, during many times I would have given in and succumbed to this disease. I am now 35 years old and just properly diagnosed with Lyme one year ago. It has spread to my brain, I have had problems with my heart, etc. I do not think one part of me has been spared --except for my spirit. God has kept me going through it all. He led me to the right doctors when I had all of the "It's all in your head and you're not really sick"(despite my suffering) speeches from Lyme illiterate doctors.

I am pleased to say that I have a great doctor now, remarried a wonderful, Godly man, and have three beautiful children. I still suffer and am on the IV drugs and oral cocktails. But I want to say this to all of you who read this. We can still make a difference. Get your petitions signed, write your local and not so local men in Washington, start a Lyme project in your area.

We need to keep fighting to keep our voices heard. God is listening, maybe man needs to also. Remember, my name is Kelly. I am someone's wife, daughter, mother, sister and friend. They too suffer this disease with me. God bless all of you who suffer and all those who take care of us. The greatest lessons in all of this should be that we live each and every day without regret and live them to the fullest. And we each come to know our Lord and Saviour who has made it possible for us to live each of these days, good or bad. Thank you Jesus for life itself! Take care and may God Bless us All,

Kelly

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