Family Quixote

Family Quixote by jujuridl
Family Quixote, a photo by jujuridl on Flickr.

I suppose there’s a little subconscious covert operation at work, publishing this Sketchbook Project spread on a Saturday, when almost no one is looking at blogs and Facebook pages.

But here it is, getting close to the last post, and really the most depressing. I have no data at all to support my observations, because we just don’t know. I see
bloggers
and Lyme activists and newspaper stories about patients giving up and taking their own lives, or dying of various complications. There are some attempts to discover the causes of death of people with Lyme, but I understand that “Lyme Disease” is rarely listed as cause of death in the official papers, so those data points are lost.

Instead we get mitral valve failure, suicide, Alzheimers and other forms of dementia, meningitis, encephalopathy — almost any neurological disease — pulmonary failure, and all of the differential (mis-) diagnoses that were really Lyme — Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), Parkinson’s Disease, Lupus and other autoimmune diseases, including various rheumatic arthropathies.

This list is a tip of the causes of death that will be put on death certificates, and entered into data about causes of death of these various diseases, but it is very rare that Lyme Disease is included in any of these Cause of Death descriptions. That’s why we hear that Lyme is “rarely fatal.”

It is fatal. Absolutely it is. Either because people stop living real lives and decide to take their own rather than stay in a painful limbo, with no hope of a cure, pursuing treatments that will drain their family’s finances, or because their illness progresses to death.

 

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8 thoughts on “Family Quixote

    • A very good point. I think a lot of us hide the disease because we will be taken as crazy out of the box. This is why I abhor visiting my local emergency room. I’m suspect they have crazy girl in my file.

      • Fortunately, or unfortunately, here is Western Mass, Lyme is at epidemic proportions and our medical community is wising up and is starting to take it more seriously. Let them call us crazy. We know who the REAL crazies are…..LOL

  1. my dear Julie….you have so much to share with the world. Your beauty, your art, your observations about, what to many, is an unbearable disease. Please don’t give up…we need your insight. love!

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