Friday, September 16, 2011

TOUCHED BY LYME: Chronic Lyme disease steals life.

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Laurie Martin, a Californian who has struggled with both tick-borne infections and colon cancer, states that cancer "pales" in comparison to the pain and suffering of Lyme disease. She asks friends and family to join her in donating money for Lyme research.
Laurie's Lyme disease Journey 
It is daunting to write about having Lyme disease, as most of my life I have spent hiding it like a deep, dark family secret.
Putting on a good face, acting as if I was "fine" and when the very bad days came, I would shut off my phone, pull the curtains, and crawl into my cave.
Imagine if you can, the worst flu you've ever had and then imagine having it day after day, year after year, interspersed with times of health when you think, "finally it's over, i've got my life back", only to get sick again over and over for 30 years.
I am 56 years old. When I was 25, I spent time painting landscapes in the Santa Barbara mountains. One day, I noticed a strange rash and thought little of it. About a month later I came down with a terrible “flu.”
This began a journey that I could have never imagined. For the next 5 years, I crawled through my life with unrelenting, extreme joint and muscle pain, severe fatigue and a list of strange and changing symptoms that stole my life and my son’s childhood away. I spent over $50,000 in that five years alone pursuing every possibility of healing from fasting to clinics in Mexico to bizarre treatments. My library of "Get Well" Books is truly staggering.
I actually was a lucky one; something [not sure which treatment] helped….around the age of 30 I got better and was able to have a life. Now rather than being sick constantly, I would get sick every 6 weeks or so for about 3-7 days with bouts of a month here or there. But I was ecstatic to be able to live again!
And live I did! Never knowing when you’re going to be sick is an amazing motivator to live as fully as you can. I did everything I could in my “well” times to grab life fully. I “gave up hope” at ever being well. While this may sound strange to most people, giving up hope allowed me to accept this strange and unknown illness and grab hold of the times I had. I stopped looking for a “cure” and put all my energy into living.
When I was 47, I was diagnosed with colon cancer. I am convinced that my 22 year fight with Lyme disease culminated in my body breaking down.
I was treated for 9 months with chemotherapy and steroids. Near the end of this treatment, I got extremely ill again. I remember a day sitting in the oncology unit, crying, knowing with certainty that my “old, unknown illness” had come back in full force - more severe than ever.
Cancer paled next to the despair of knowing I was facing this terrible dark place again – of constant pain, fatigue and whole body sickness. With cancer, i could still live life even though i might be facing death. But this illness was a living death.
My search for a diagnosis began again in earnest. I was tested and diagnosed with Lyme disease and babesia 6 years ago. I remember the day I found out. I was so happy to finally know what had been wrong with me for 24 years. It was like a miracle and I allowed myself to hope again. Hope that finally this would be over.
That happiness was misplaced. The last 6 years has been a journey of severe illness. I now know that chemotherapy and steroids can cause permanent damage to a person with Lyme making it much more difficult to get well and stay well.
It’s a simple and stark reality. Chronic Lyme disease steals life. Most days are a struggle to do the simplest things. My goals for a day: do my IVs, be kind, be grateful for my incredible family and friends, do only what I can do, go outside, pet my dog.
Lyme disease has taught me acceptance and gratefulness. And for those lessons I am deeply thankful.....but honestly I would give them up in a second to run out, grab a kayak and head to Mexico.
Please help me raise money for Lyme disease research.

Donate to Laurie's page here.
Learn more about the 2011 CALDA Lymewalks here.
Create your own fundraising page here.

The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

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