“It’s time to make our invisible illness visible with our voices!”
We can make a difference with our Lyme stories. Join me and help Vickie Gould, Lyme sufferer, bring our personal accounts to life in her Anthology of Lyme Stories. https://vickiegould.com/lyme-anthology-2018/
Cindy Kennedy MS, FNP-BC
Vickie shares her story here:
I waited an extra 20 to 30 minutes in the doctor’s examination room. It was a little chilly as usual, but this time what happened next was different. I didn’t get the normal, “There’s nothing wrong with you.”
As he entered the room with my file, sat on his black, round stool on wheels, my doctor turned to face me and said, “Your labs came back positive for Lyme Disease. “
“Hallelujah!” I thought. Now I can finally get better. It wasn’t Lupus like they said half a year ago.
Little did I know that the diagnosis wasn’t going to make my life easier. In fact, I’d soon find out it made my life more complicated. And I didn’t get better. I got worse.
I thought that having a name for what was making me feel so miserable meant that doctors could cure me. I didn’t realize that the next 4 years of my life would be spent searching and bouncing around to doctors, trying countless protocols, using alternative modalities – some things that people told me I was crazy to try.
I didn’t realize at the time that Lyme Disease never comes to the party by itself. It brings a slew of friends like coinfections, gene mutations, detox problems, hormone issues, heart issues, and mold complications.
I didn’t realize that I would eventually end up in bed 16-18 hours a day, not be able to keep my balance well, not be able to go out or drive more than 10 minutes away, or that I would lose my sense of self – that I would feel so useless as a wife, mother and person.
I didn’t realize that I would need to to do my own research to find my treatments and that those treatments wouldn’t be covered by insurance.
Some days, just driving to get treatments was enough to do me in for the whole week. I could barely get there and back, much less make dinner and take care of the kids. Showering meant an hour of laying on my bed recovering before I could finish getting ready. And at night while the whole house slept, I would cry on the cold bathroom floor by myself.
There were doctors that laughed me out of their office. They didn’t listen and thought there was nothing wrong with me. There even was a neurologist who said I was fine because my handwriting was neat.
But what hurt most were the people and places through the years who I had helped who disappeared, never asked and never came by to help me out.
I watched my children grow up by the side of my bed and I knew I had to do something to participate in my life again. I couldn’t accept this slow type of death for the next 40+ years.
Well, I was one of the lucky ones. I saw my Lyme brothers, sisters and children die. I cried for the life they never got to finish. I’ve done ok with my research and with my Lyme doctors and I was able to get back to being alive again.
Now I want to share our voices and what we’ve gone through in a book.
Being misunderstood with Lyme is a type of pain on top of pain that is hard to grasp. I want to honor the valiant fighters each day who live with Lyme Disease and I want to share the truth about what’s been shoved under the rug.
Lyme is more rampant than HIV. Testing is inaccurate and outdated. And there’s much much more.
It’s time to make our invisible illness visible with our voices and that’s why I’m putting together a Lyme anthology, not just to share the truth about what we’ve gone through, but also to share HOPE because the leading cause of Lyme death is suicide and that just can’t continue.
Please join me in sharing your story and voice of Lyme. If you’re interested in sharing, please go to https://vickiegould.com/lyme-anthology-2018/