Lyme Time At The Fair
Author: Paula Jackson Jones
Orig Published: 08/24/2017
As I
sit writing this week’s article, I am 6 days into the Union Fair and oh, what
an emotional week it has been. I truly
enjoy talking with people. I always have. My grandmother used to tell me that I have an
old soul. I have a heart for helping people. So, to be surrounded by people at
a local fair for an entire week ~ I am in my glory.
Paula Jackson Jones and Angele Rice, Co-Founders of MLDSE |
My Husband ~ my Rock and greatest supporter |
Me and My Mom |
Me and Ben Borkowski, one of our valued volunteers!! |
Love these ladies ~ my Union Fair family! |
Our
booth has been flooded with visitors of all ages, some touched by tick-borne
disease and others who want to know more about prevention. Many avid readers of my column pleased to meet
me in person. Many shared old wives’ tales and debunkable myths while others
question why isn’t the state of Maine doing more about the tick problem. Many came
to the booth, pensive after listening to me share my personal journey and found
validation of their own. And when handed resources to enable their journey
towards health and wellness, through tears and hugs, were once again renewed
with hope.
I spoke
with so many people, previously been treated, who were told that in time they
would get better. Just give it time. Oh,
if only it were that simple. In my case,
giving it time meant that the infections would spread, meant it would be harder
to diagnosis the true cause of my debilitating symptoms, meant that my recovery
period was much longer and more expensive.
In the Lyme community “giving it time” pretty much means they’ve done
all they know to do and now you’re on your own.
Hearing
all the variances in how people were treated ~ or not ~ even after all the
research and work that’s been done, I felt that I needed to do something. I reached out to an acquaintance at Maine
Health and I asked this question:
“With a
federal protocol in place for endemic regions (Maine is now an endemic state),
why are so many doctors treating patients so differently?” And I was told that
this is “common with many illnesses.”
Right
now, a patient in Maine can go to their doctor or ER with a bulls-eye rash, a
clear indication of Lyme, and they can leave with any amount of treatment from
7, 10, 14 to 21-28days. And I’d like to
say that it depends on where you go but it doesn’t. In three years, I hear stories from people from
all over the state. I will say that WHO
you see does make a difference. If you
see a provider who has more education with tick-borne disease, they are more
apt to recognize the symptoms and know how to appropriately treat. I say appropriate because so many of the folks
who reach out to me are still sick. So,
patient care is actuated upon a physician’s knowledge.
It's
heartbreaking to think that in 2017, who you see determines that outcome of
your illness, when education is so freely available and that a standard federal
protocol for an endemic region that continues to deal with growing numbers of
new cases of not only Lyme but other tick-borne disease, should be mandatory and
enforced across the board ~ but it is not.
The
time spent here at the fair has been valuable and eye opening.
I was angered to hear
how drs continue to treat people,
I was saddened by the personal stories,
I was elated to receive tearful hugs when I offer helpful resources,
I was burdened to remain professional when attacked verbally by naysayers,
I was challenged and criticized for not doing more...
I was saddened by the personal stories,
I was elated to receive tearful hugs when I offer helpful resources,
I was burdened to remain professional when attacked verbally by naysayers,
I was challenged and criticized for not doing more...
And then it happened...
Someone came along, who
had lost all hope of ever getting better, who'd succumb to the idea of a
pain-filled future, who sat by silently and listened as I shared my personal
journey from misdiagnosis to debilitating health to struggling thru years of
treatment to finally full remission and says....
"Thank You, you
have given me back hope"
and
I was once again reminded of why I began advocacy work in the first place.
#Lymestrong #MLDSE #buildingbridges |
~ Paula
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