Tuesday, September 3, 2013

Part One: Living with Chronic Lyme Disease: a long and difficult journey

Doctors are Clueless and So Am I 

I have had Lyme Disease for what seems like forever. I figured that it has been about forty eight years which equals approximately 2,496 weeks, which is getting very close to forever! My symptoms started when I first went away to college. Overwhelming fatigue and joint aches were my complaints, but then I was “burning the candle at both ends” and worked in a kitchen carrying heavy stacks of plates and partied and studied into the wee hours of the morning, so who wouldn't be tired, or have achy hands?

I lived in Colorado and I knew that ticks carried Rocky Mountain Spotted Fever.  Lyme wasn't even a consideration by my doctors or me. Lyme Disease was not a reality for most in the sixties, though it did exist, and was even tested from a prehistoric corpse found not long ago. To date there are no tick fences that have kept it from being everywhere, albeit its prevelence is greater in some areas than others. I just read that currently Vermont ranks second state in the US for highest prevalence of this disease, though I believe that it came with me when I moved from Colorado to Vermont over twenty years ago now.

When I sought early medical treatment, I was told that I needed more exercise, never mind that I had no car and walked everywhere!  More medical advice in the ensuing years seemed equally as useless: perhaps I had just overdone it; needed to have a better diet; or perhaps I was depressed and didn’t know it.  I did know that I ran short of the energy I needed to live my life fully and all medical advice focused on what I needed to do differently, though I appeared to be a healthy specimen, not unlike my peers (appearances deceive many, I have learned, especially doctors).

I heeded my doctor’s well-intended advice, as any young adult would. I simply carried on, tried to avoid excess, though likely NOT when it came to my passion for sweets or life and occasionally crashed and burned and slept for a day or two at a time and didn't seek more medical advice unless I felt like I couldn't live without it. (to be continued...)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)