Friday, February 12, 2010

Neuroborreliosis & Love Letters

When VT Art Zine published my blog post from yesterday about the "Love Letters to Obama" project I was a little embaressed by the paragraph about my illness being published on that site. I got some suportive emails from other folks also infected with Neuroborreliosis and in a response to one friend struggling with the disease I wrote the following:

The biggest thing the general public doesn’t realize about Lyme disease AKA Neuroborreliosis is that it is a disorder of the central nervous system and is a progressive neurodegenerative illness. Most people know about the pain, headaches, nerve stuff and disabling fatigue but many don’t realize that it can eventually cause severe cranial nerve abnormalities, and altered mental status such as prolonged depression, severe anxiety, dementia and Alzheimer-like symptoms.

The mental stuff is what scares me the most, I feel very unstable at times because of depression, anxiety and terrible brain fog. When I am in a relapse it is hard for me to hold a sensible prolonged conversation, it is difficult to write and almost impossible to paint. I have always been a very strong willed and strong minded woman but that is clearly slipping away from me and I feel as if the Lyme is slowly robbing me of my identity. I am very blessed to have Don in my life, he takes good care of me!

For years I thought I would beat this thing and be cured but now I am not so sure, I know so few people that have actually been cured after being infected as long as I have. I do still have high hopes for long blissful periods of remission some people can stay in remission for 5 even 10 years. And as long as I stay on abx I do not regress back to the wheelchair stage and the constant trips to the hospital that I had a few years ago.

The Love letters project is a delightful distraction and creating a silk painting for the project gave me great pleasure. My thanks to Callie for such a great idea.
The photo above shows me in my studio with a small portion of the medications I have taken for Advanced Neurological Lyme or Neuroborreliosis

Transfusing Lyme is an oil painting I did back when I started the Lyme Awareness Art Project (LAAP)
LAAP Website: http://www.lymeawarenessartproject.com/
My Lyme Blog: http://lindaslymediseasejournal.blogspot.com/

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