just me lexi

i am a lover of all things beautiful in a relentless pursuit of art, ideas, projects, words, photos and the master Artist. i hope to share all my findings here...

Monday, November 11, 2013

still learning...


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.

+

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).  

+

 it's a VERY politically clouded disease that the government doesn't like to talk about or acknowledge.  

+

insurances don't like to pay for the expensive treatments.  

+

 the CDC doesn't stand to benefit from lyme's research and they don't know enough about the disease to properly treat it.  

+

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...

come what may


as a child i hated roller coasters.  but i tried my best.  i nodded every time my mom asked if i wanted to ride.  i put my brave face on and envied my baby sisters as they strolled out the chicken exit.  but not me...<gulp> i rode every ride.  as i buckled myself into the ride fear bubbled in my stomach--not the excited kinda fear but the terrified.  i'd close my eyes and stomp my feet on the floor every loop and hill.  i hated every second.  i wanted so badly to like it.  i'd have to remind myself  itwillbeoversoon, itwillbeoversoon in order to make it through.  but if ever i was brave enough to open my eyes, i could see for miles!  hills and trees and houses and people...the view was beautiful!  i hardly knew because i spent most of my time with my eyes squeezed tight.  there is something about that free falling feeling i just can't take.

life feels a bit like a roller coaster right now.  God is the parent that buckled me in and promises me i'll be alright. He makes it clear that it's Him and not me that is in control.  i'd like so much to make Him proud so i put my brave face on and envy the others that take the chicken exit.  i buckle in and try my best.  at the loops and hills i close my eyes and stomp my feet and try to remember all my Father tells me about being afraid.  i don't like this ride.  some days i have to remind myself itwillbeoversoon, itwillbeoversoon in order to make it through.  if i dare open my eyes long enough...some parts of this ride are breathtaking--like nothing i could ever see from anywhere else.   the landscape is painted in shades of forgiveness and redemption, humility and kindness--the view is beautiful!  all beauty aside, there is something in this free falling feeling that i just can't take.  

but for Him?  

anything...
even this falling feeling.

faith?
trust?

whatever it is, i don't like this ride. but i'm buckled in and leaning towards Him--

come what may.