Lyme Time with Paula Jackson Jones

Reasons to believe

Posted:  Tuesday, January 9, 2018 - 12:30pm
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In a world filled with distorted truths and “fake news,” it is difficult at times to figure out just what to believe. It’s even harder when you’re dealing with a complicated health issue and doctors are at odds with one another over diagnoses, treatment guidelines and protocols. In my world, this is our normal. Meeting people who were told by one medical provider that they were no longer sick and, yet they remained symptomatic. People who’ve been given so many misdiagnoses and time and time again find themselves back at square one, hopeless and confused.

In September 2014, I wrote a special guest article for the Lewiston Sun Journal, “Lyme Disease: When will patients be heard?” and they shared it back it back-to-back with my “Dear Paula 2009” letter ~ an article exposing the truth of what so many Lyme patients go through married with a letter to my then-sick self, offering up words of validation and encouragement, as I knew what was coming her way.

As patients navigating through the medical maze of controversy and blatant disregard, this can be the worst nightmare of your life. At times, you can face severe symptoms that you’ve never experienced with before and, the way you are treated by medical providers, can make you question your own sanity. Which is why support groups exist. To be among those who are experiencing what you are going through, to offer up support, direction and encouragement.

When I wrote my Dear Paula 2009 letter, never did I imagine the overwhelming nationwide response that I would get. I just wanted to share what I had been through and somehow prepare my former self for what was about to come her way. It was unpredictable and the journey so unimaginable, that only those in similar plights can truly accept what you are saying as truth, because it was happening to them. When my words told a stranger’s tale, I was validating their own journey of disbelief. And when those people shared, words of encouragement and hope began to flow out to a community used to being dismissed and silenced. Words of reason to believe that they too will one day get better!

My Dear Paula 2009 starts off:

I know that this is going to sound strange but in just a few short months something is going to happen to you, something that you are not expecting, something that you didn't ask for or were even aware that could happen ~ your life is going to change in ways you never fathomed.

And it ends with:

I hope that I've been able to get through to you and I know that this all sounds like crazy talk (and you will be accused of that too while on this journey), I am writing this letter to tell you to keep pushing forward, don't take NO for an answer, when you hit a wall keep pounding until it crumbles, when you feel lost Cry Out for there are people who are there to help you, when you feel alone lift your head and look at the thousands who stand with you.

You won't know or even remember all their names, but you'll know their stories and it’s that connection that will forever link you to each other, strengthen one another even from a distance. It's that connection that will take a debilitating disease that can weaken even the strongest, toughest person and make them #Lymestrong \0/

NOTE: Due to space limitations, you can read the article and the letter in its entirety on my blog “LYME TIME with Paula Jackson Jones, which can be found on our website www.mldse.org

As we roll into the new year, as the truth becomes more and more apparent producing much needed change, may you find your voice and take a stand, advocating for yourself or a loved one, support a family member or friend who is suffering from this horrible disease. Every day, share words of encouragement, find those reasons to believe that your day of health and wellness is coming and until then ~ stay #Lymestrong!

Paula Jackson Jones is president of Midcoast Lyme Disease Support & Education, a nonprofit 501 (c) (3) and Maine-partner of the Natl Lyme Disease Assoc and member of Maine CDC Vector-borne Workgroup. You can reach her at paula@mldse.org or visit their website www.mldse.org