“Chronicles of A Chronically Ill Jersey Girl” is my collection of writings as I live the Lyme Life here in rural Hunterdon County, NJ. When chronic illness (in my case Lyme, Babesia, Brucella and Bartonella) turned life upside down, priorities become paramount: Eat, sleep, hydrate, keep the bowels functioning, minimize the pain and vomiting and find humor in every
dark day. I rely heavily on key resources for my on-going survival. They include, but are not limited to; my daughter’s inspiration, internet grocery shopping, science, medical and biotech journals, dog and cat companionship, my bath tub, blanket forts, a heart rate phone app, my fellow warriors’ hilarious and frequently inspirational FB posts/tweets, Ben & Jerry’s Chubby Hubby, weed and music pounding through my beats.
I’m a woman, that often behaves more like a man, talks to herself (with foul language) and strives to find some way to make the world a better place. As if my life isn’t already fraught with obstacles from mother-daughter chronic illness, I cope with very difficult “family of origin” dynamics. My routine life fails and long list of character flaws mixed in with a high volume of drama makes for great sitcom material. I decided to be brave and share some of my chaos with those curious, inquiring minds daring enough to fall into my rabbit hole for a visit.
At the risk of getting sap all over my MacBook, I really must thank all the wonderful people that inspired me to build this blog. I can’t name you all because the music will start to play. Smirk. But believe it when I say, in some way, each of you has given me the courage to share my personal stories. To my international group of warrior friends, MDs and scientists: You may not be aware that your virtual presence in my daily life keeps me in the fight. My illness was mis -diagnosed for over 20 years. For the past four years, I have survived on a steady diet of big pharma, supplements, herbs, gluten free everything, support group feed and humorous memes. I live by laughter between tears and have coined a new word; “Laughterbation” – the act of cracking oneself up. I laughterbate often. I don’t get out much these days, but I have friends all over the world that share my agony, prop me up when I want to give up and make me laugh till I literally pee my pants.
I feel pathetic because my life takes place behind my laptop. Pathetic, but not alone. I have all of you. And you save my life every day. When the hope is gone, I can always fine someone from our team to infuse a strong dose of hope. We are a gang of sorts. A global gang of sick pups. We are the Lyme Nation. The unique relationships we enjoy with support group friends is at the cornerstone of a stage script I have been working on for two years. It is called “Addy & Allie“. When I wrote the play, I wanted to capture the magnitude of lyme madness, human frailty and the importance of social media/support group friendships to the chronic illness community. Aside from raising awareness of lyme, it is my way of honoring and dignifying the battle we fight -endlessly. I also must thank my family and local non-lyme friends that stay by my side even though I’m clinically bat shit crazy from neurological infections. Thank you for coping with my rants and insanity all these years. Here is my theme song:
These stories are not listed in any chronological format. For each one I provided a musical selection to accompany the tale. I welcome your comments and feedback. Be well, friends.