My best friend Rachel and I…loving life.

With Rotaract, raffling off items to raise money for a women’s shelter in Peru.

Enjoying some of the finer things in life- a gorgeous vineyard and some amazing wine.

If you know me, you know that I’m a fun-loving, adventurous, free spirit.  I am also a very caring and compassionate person, and have tried to do what I can to help less fortunate individuals all over the world.  I have been one of the directors for the Rotaract of Club of Chicago’s International Service Project for the past two years (sadly, I have needed to take a step back because of my health issues).  I love my life and have enjoyed every second of it to the fullest.  I had everything going for me- amazing friends and family, a graduate degree and successful career, and beautiful life with a bright future.  Unfortunately, I suddenly and mysteriously became very ill and everything started falling apart.  I was desperate for answers and searching frantically, but finding none.  I could feel myself slowly dying, but no doctor could help me or provide me with any answers or direction.

Thanks to a client of mine who has Lyme Disease, I was informed how to get accurate testing for Lyme, and my results from the Western Blot IgG/IgM came back positive.  I was diagnosed with Late Stage/Neurological Lyme Disease at the age of 28.  Very soon after, I found out that I had a GIANT mass (hemangioma) on my liver, which required a very invasive surgery to remove the mass.  So that, on top of the Lyme Disease, is a lot to try to deal with.

It has been a long road already, and I have a huge battle ahead of me.  Not only am I fighting a very serious and progressed disease, but also the ignorance about or denial of Lyme Disease by the mainstream medical community.  I am fighting for access to proper treatment, insurance coverage, and ultimately my life.  I am not alone in this, for there are so many other Lymies (that’s what we call ourselves- it’s a club you definitely don’t want to be a part of) out there with the same story.  It’s time for things to change.  It’s time for the truth to be exposed.  Please follow my journey and help me in spreading awareness.  Much love.

-Jali

*Please keep in mind that this has all been written with lymebrain, so my cognitive functioning is nowhere near what it once was, and therefore, my writing and grammar may not be as perfect as I would like.  I kind of have ODC when it comes to writing well, so please pardon any errors.

HOPE

I hope that mainstream medicine and insurance companies will stop turning their backs on people who are fighting for their lives by denying them accurate testing, diagnosis, and treatment of Lyme Disease.  I hope for a cure that will completely eradicate this disease and end the suffering of all Lyme patients.  I hope to someday live in a world where we can play in the fields and climb trees and enjoy nature without having to fear.

MY PURPOSE

I want to inform the world about Lyme Disease.  I want people to know how to protect themselves and their loved ones, recognize the symptoms, and have access to accurate testing and better treatment options.  I want people to understand a very misunderstood disease- one that slowly and invisibly takes over the bodies and minds of its victims, attacking vital organs, creating extreme pain and suffering, and in the worst cases, causing death.  I want to expose the truth about this horrible illness and all of the controversy and politics surrounding it.  I want to make it known that Lyme isn’t easy to diagnose or treat in its later stages.  I want others to learn from my story, and hopefully gain insight into how to navigate through a very confusing and broken system.  Most importantly, I want to raise awareness about Lyme Disease, because in doing so, if I can help even one person, then my struggle hasn’t been for nothing.  Now, it’s time to fight!