About Me: August, 2013
Sigh. I am a graphic designer, wife, and mother of two amazingly creative and wise children - my 14-yr old son and 10-yr old daughter. I swear they have a spooky grasp on how this world works - they are definitely old souls or maybe earth angels. my son's art is usually very realistic pencil drawings. He attends a prestigious school of the arts, majoring in visual arts. My daughter's artwork is more like mine - bright, colorful doodles, pulling unrelated things together to create something new. This will be her 3rd year in the talented and gifted program at her middle school.
I discuss my children because they are the closest representation of "me" right now... as I have lost my entire identity to "Neuroborreliosis / Lyme Encephalopathy" -- in other words, chronic lyme disease with neurological and cognitive dysfunction. Awesome. Sad, scared, mad, then grateful - I had found a actual diagnosis (by a lyme-literate doctor stumbled upon by the grace of god) - a real reason why I hadn't felt well for over 25 years. We may have thwarted the wicked bacteria's mission to finish me off completely - but it had already killed me a thousand times. Up until now, this insidious infection has been eating me alive - slowly stealing pieces of my physical, mental, and emotional health.
Right before my second husband and I threw our tiny wedding celebration at our home in June 2012, my health took a giant step down. Fatigue beyond fatigue, and a brain fog that would be more accurately described as early dementia. Whole-body muscle and bone pain. There was no way I could "suck it up" anymore - no amount of coffee could help - nothing left to grasp onto to drag myself through the day. It was like 3 linebackers (or guardian angels?) were sitting on me - I could not get out of bed for 2 days straight - I thought I had either had a stroke or had mono - whatever it was I had never experienced before. I improved enough to get out of bed, but not much more than that. I never recovered.
The mental confusion and profound fatigue forced me to quit my beloved graphic design job a month prior to the wedding - and as much as I had hoped and expected to be well on my wedding day - Lyme took me down at the knees. I shored myself up as well as I could, and thankfully managed to get married :) - but I couldn't make it through the party. I had to retire to my darkened bedroom while my guests were still there - sleeping like the dead by the time my new husband graciously saw our guests off, and tiptoed into our bedroom.
I began the aggressive treatment for Lyme in Dec 2012 - estimated length is about 18 - 24 months. It is very much like chemo. I am a shadow of myself. I've lost my career, my physical, emotional, mental health, my friends, almost all relationships. I've also had to surrender full time custody of my kids to my ex - until I am well. The final insult is that the financial cost of my treatment is approximately $100k, and is not covered by insurance. To pay, my husband has liquidated his entire retirement account, earned over 20 years serving as a police officer.
End the loss of life. Change the system.
** To learn more about Lyme Disease, please watch the eye-opening, award-winning documentary, "Under Our Skin". View the full-length film free online:
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