lately i feel i've been traveling through foreign land. everything is different. food, language, ritual, habit, street signs and landscape. it's all very confusing. and frustrating. i'm sure there are some wonderful things i'm missing out my window, but i'm consumed with my survival in this strange land and so far have failed to see any landmarks that might make this journey a little less traumatic.
rhett & i were recently diagnosed with lyme disease. we were bitten by ticks this summer while picnicking under our favorite old tree. we didn't get a distinct rash (only about 35%-60% of lyme's patients got the "bull's eye rash"). we were a little tired...but it was summer and we were flying through all our favorite things.
soon enough school started. i was editing photos in front of my computer every day...but sore at the end of day...and so tired at night you would have thought i was running marathons in between photo sessions. but i couldn't sleep...and then i started having chest pain. and that sent me straight to the dr. one night i thought i was dying. crushing chest pain, heart flutters, pain in my left arm...and yet...i'm such a non-medical kinda girl...it took all this to get me to my local urgent care. they did an EKG and said there was nothing wrong. i said,
oh, yes. there is something wrong all right. i know it. run every test. diabetes, heart disease, lyme disease, I DON'T CARE.
and i must have been pretty scary in that moment because, without another question,
he did.
Lyme's came back positive. i was devastated i have seen with my own two eyes how terrible this disease could be...i could hardly believe it was lurking in MY body. my strong and young and capable body. i got rhett tested the same day(because he was bit by two ticks the same day i was). he tested positive. my momma's heart withered.
we both started treatment in september.
if getting diagnosed with a potentially debilitating disease was not enough.
there is some very bad news about lyme's disease. i'm learning more every day. here is the information i've gathered thus far (in my own simple words),
if you don't get proper treatment for lyme's in the beginning stages, you could have it for the rest of your life.
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it's very hard to get proper treatment
BECAUSE...
people think it's not here or it's not there or it's only in the northeast (including my urgent care dr and the florida health department).
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it's a VERY politically clouded disease that the government doesn't like to talk about or acknowledge.
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insurances don't like to pay for the expensive treatments.
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the CDC doesn't stand to benefit from lyme's research and they don't know enough about the disease to properly treat it.
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dr's get shut down for treating lyme's any way but by CDC guidelines (a few days or weeks of antibiotics). they are getting their licences taken away for doing anything more. naturally, there are very few dr's willing to take this risk.
all of this =
a very scary and unfamiliar journey for me and my little wonderboy.
luckily (for us) we have some friends here in florida that have been down a similar road. they pointed us to some lyme literate medical doctors in the area (l.l.m.d.) right away and have eased the entrance into this strange land by their familiarity with all the things we are currently wading through. while this is amazing and graceful...this journey has still been dark...for me.
lyme disease if not treated is thought to be linked to some very scary diseases like parkinson's, arthritis, lupis, chronic fatigue syndrome, fibromialgia, and alzheimer's. in my limited understanding it can lead to heart damage, organ damage and even death. all from one little tick at a pretty picnic.
this is all so unfamiliar to me. like a different world than i knew just several months ago. my body feels like someone else's some days. i hurt. i ache. i feel like my mouth won't make the right words and that's if my brain can find them. every day is different. it rarely looks the same. it's confusing to me so i can't imagine what it looks like in my little boy's head.
as a strong woman...i am frustrated. as a momma...i am enraged. as a daughter of a big God...i am learning.
i'm learning (once again) i am small. i'm learning lots from this out of control feeling. i am learning that i never really trusted Him to begin with. i am learning alot about how to live today and let tomorrow worry about itself. i am learning to wait and i am learning that He can do more in my waiting that i can ever do in my doing. i'm learning the value of good health. i'm learning about the art of taking care of others (as others care for me). i'm learning that a call or text or pot of soup or apple pie really can mean HOPE to someone. this whole thing has been a lesson in patience and humility and self control and joy. and i'm still learning...
Oh, Lexi... I don't even know what to say other than that I'm so incredibly sorry. I remember you telling me that something was wrong, but that you weren't sure what. I can't even imagine. I will put you and that sweet boy of yours at the very top of my prayer list. And just know that I'm here if you ever need anything.
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