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Joanie's Story

The small piece of material that I contribute to this quilt is familiar to all of you here. My color is a pale green, not at all "unique." While I have been struggling with this illness for close to 10 years now, I have no special horror stories which I read and shudder at. My "horror" story is watching the last ten years of my life take my energy, my humor, my ability to practice my profession, to steal my intelligence and to affect my emotional balance and memory.

My story is not "Dramatic" nor outstanding, however one which so many of us have experienced -- trying to find answers and heal. However, all of our voices join together to form this quilt of education, of connections..the colors of Lyme... I became sick with an "unknown" variety of symptoms which at first I attributed to stress due to the grief of the death of my life-companion, in 1990. Getting sicker and less able to function, I sought help from a variety of doctors too numerous to remember. Ultimately one diagnosed me with Lupus. I proceeded to pursue treatment for this, however upon further tests it was apparent that Lupus was NOT the culprit here.

Pain and exhaustion, and major emotional upset were my beginning symptoms for the most part. I continued searching for answers, none of which seemed to make sense, and did not remember a tick bite or rash at that point. I was tested for Lyme but was "negative." My horse vet finally did a blood test ... a simple finger prick and blotter paper for horses, an ELISA, which came back MEGA positive. Again, I went to the "BEST" doctors (HA!) who prescribed drugs which I could not tolerate, for three weeks. They told me I should be "cured" and that I was psychosomatic due to my grief.

Sitting in the beauty parlor one day, I made a simple remark that there are support groups for everything, but not Lyme. My hairdresser gave me a telephone number for someone in my area to talk with, and the rest is history. Walking into that room that first evening and feeling understood and accepted, and given LOTS of information, I was able at last to begin the path to some kind of help. However, the three years that had elapsed did not make this easy, and as the result of that long delay in diagnosis and treatment, I am a chronic Lymie now.

It would be impossible to tell you the kinds and numbers of doctors who I hoped would have answers. The testing and costs of all this preliminary searching would have paid for treatment many times over. Ultimately, due to an insurance change I was able to have 30 days of Rochephin, which kept me upright and able to work. However, in their infinite wisdom, the HMO informed me I was "cured" and not able to get more treatment. Gee.. did I miss something here?

At around the same time I found CYBERSPACE.. and through that modality was able to connect with those who DID understand, and who gave me lots of support and encouragement. I was not alone anymore.. ever.. I am fortunate and blessed to have the community here and other Lyme folks who do understand. I don't know if my life will EVER be the same. I keep a positive attitude most of the time and envision myself to be healthier and more vibrant. I have Lyme Disease, Lyme Disease does not have ME.

I have learned to enjoy sunsets more, the touch of the breeze by the ocean on my face is a kiss of life. I have changed my priorities and stopped to look at the flowers more, so in a way I feel that while I would not choose Lyme to "visit" me, I see many silver linings in those GREEN CLOUDS.

Joanie, AKA, Moonweb, who is WILL WIN!

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