As my healing continues, my deepest wish is to be able to return to writing full force, to share my incredible journey through how much I have lost and how much I have learned along the way. I was inspired yesterday to write what I am about to share here as May 1st is World Lyme Day, kicking off the whole of May being Lyme Disease Awareness Month. Amazing timing this year as there has been so much mainstream coverage thanks to Avril Lavigne, Yolanda Foster and all the celebs participating in The Lyme Disease Challenge (yes Mr. Shatner, I mean you!)
Here is a slice of my story, my family's and my beautiful sister Karlee Watkins who is gone from us now because of this horrendous disease and it's myriad problems. Please share if you are so inclined. Awareness is everything.
It's May 1st, World Lyme Day (and May is Lyme Disease Awareness Month). This is a photo from yesterday of the many courageous warriors rallying in Arlington, VA. at the IDSA (Infectious Disease Society of America) headquarters. The IDSA is responsible for the guidelines that make up the definition of a disease ---> this is then what everything is based on ---> education for Dr's and the medical world, treatment, laws, insurance standards, research needs and more.The current guidelines for Late Stage Neurological (or Chronic Lyme) are WRONG and have been for a very long time. This is a long story that I have spoken about many times; tied up in politics, corruption & more. This has led to an entire country being denied care for a very debilitating syndrome that makes up Chronic Lyme Disease. As it stands now, Lyme treatment laws are state to state, with it being ILLEGAL for MD's to treat long term in many places. Because of this many Dr's who are Lyme educated are out there trying to help patients & getting attacked by insurance companies, prosecuted and loose their licenses. Patients have to travel far & wide to get help, all costs have to be paid BY THE PATIENT, and there are just not enough Lyme Literate Dr's to help everyone.
The Lyme community has been fighting very hard for years & years to get this changed, as this has created a situation unlike any every seen before & unlike any other disease. Oregon, where I live now... I have come to find out is what is called a 'Fail To Treat' state... meaning all MD.'s through the Oregon Health Plan and insurance guidelines will deny treatment for Chronic Lyme and co-infections. This leaves all patients to have to fend for themselves, many leave the state for treatment and everyone has to pay for everything themselves. Returning to wellness from years of Chronic Lyme is complicated, individually based and long term in most cases. Leaving many, like myself, floundering & debilitated without care at all.
As many of you know, my own journey here began 5 years ago when I was finally able to track down a diagnosis MYSELF, and then found a Dr. in N.J. where I was living to get corroboration and start treatment. Not one single Dr. I saw in hundreds over the course of 30 years ever suggested Lyme to me. This was not exactly their fault, as the guidelines are so incorrect, the entirety of the medical world is not educated to look for, diagnose or treat Chronic Lyme. If this was different I would have received the help I needed a long time ago and not be in the position I still am now... low functioning and unable to work or be a sovereign being like everyone else my age.
My sister Karlee, like so many Late Stage Lyme patients also suffered enormously from misdiagnosis. Because Dr.'s did not know what to look for, or what they were looking at, her worst symptoms got her shuffled off to the care of the mental health world, which failed her miserably as her condition was not psychiatric at root cause. In her early 20's she began presenting with symptoms matching Schizophrenia. I now know she had many symptoms of Chronic Lyme all along, just not registering or understood at the time, as Lyme is the Great Imitator, sharing symptoms with a zillion other conditions . Because nothing unusual showed up in her blood work (standard with Chronic Lyme) it was assumed to be psychiatric in nature. She was forced because of her insurance to see mental health professionals at her giant HMO in Hawaii, who had no idea what to do with her as she absolutely did not match the specific criteria for Schizophrenia. Eventually, many years later she was given a 'non-diagnosis' (the best anyone could come up with) by the one psychiatrist she saw that actually helped her: an Undiagnoseable Schizophrenia Type Disorder. That was the best it ever got. It took me 2 years after my own diagnosis to try to get her the help she needed (long story). We were in Louisiana at the time, where there is not a single Lyme Literate Dr. and our resources were drained from my own care... it was too little too late. She took her own life in September of 2013. This could have been prevented.
While myself and my family have every reason in the world to be angry & on the leading lines of activism... we have had to chose our own health, happiness, positivity and sanity over the big daily fight. For my own wellness I can no longer have Lyme be the at the forefront of my mind or on the tip of my tongue every single minute. I share when I'm up to it & am moved, but I am tired and just want to be whole, happy and focused on the positive and the future.
I support with all my heart & soul the courageous Lyme warriors out there making a difference and ask of all of you to do the same. CHANGE is desperately needed.
For more information & to help please visit
http://www.ilads.org/ the INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY or
www.themaydayproject.org... see below photo to call or fax the IDSA today.
Thanks so very much for listening. Health and happiness to all.
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