Sunday, May 15, 2016

Slow it Down Babe, You're not Better Yet

It's May and that means it's Lyme disease awareness month.  One of the things I want to get across the most this year, is that ticks are in all states and they are in Bellingham, WA.  How do I know that they are in the place I reside? For one, there's this thing called migration.  Birds and other animals migrate and they bring along things like ticks with them.  So this isn't just an East Coast thing anymore.
This makes me feel so gross inside

For two, I GOT BIT BY ONE 6 years ago in BELLINGHAM, WA and it has completely flipped my world upside down!

This is how it went down:

I developed a bulls eye rash on my stomach, just like the photo above.  I showed it to my then boyfriend, and the owner of the company I work for.  All three of us were clueless, so I threw some ointment on that bitch and watched it dissipate over the course of a week.  About a week or so after the rash I developed a flu that knocked me on my ass, so hard!  I have never felt anything like it before, nor do I ever want to again. That was the Lyme bacteria evading my central nervous system.  From that point on I photographed evidence of my body, mind, and quality of life degrading.  This is also where I turned from a "yes" person to a "no" person and spent most my days trying to figure out what was wrong with me.

Just a few to give you an idea : /

Ugh, do I replay that rash in my mind over and over and wish somebody, somewhere taught me about Lyme disease?  NO, the past is the past and there is nothing I can do to change it, nor is there a way to rid myself of this disease.  All I can do is try to educate others so they do not have to endure what I have endured, and take away the positives from this disease. I'm not sorry if I bug you with my Lyme disease posts.  Read them, learn from them and educate others because the people around here, where I live, are clueless as to what lurk in their own backyards.  How do I know this?  Because this is what I hear:

"I didn't know there are ticks out here"
"My vet says I don't have to worry about ticks on my dog here"
"No, there's not Lyme here?"
"You got it here?!"
"I'm sorry, but I don't know much or anything about Lyme really"
From my own doctors:
"No, it can't be Lyme"
"Did you ever think that any of your symptoms are all unrelated?"
"Lyme doesn't happen here"
"You can put Lyme on the back burner, I think it's a false positive"
"Lyme?  What, no it's not Lyme"
"Lets just have you try this medication first"  (Steroids)

 I'll never forget this one, "What's a healthy girl like you doing here?"  At my sickest, this is what I heard from a new doctor when I came to plead for a Lyme disease test.  He wrote me off before I even opened my mouth!  And why?  Because how I look externally?  To me I looked sick as hell because I had seen a "before Lyme Becky."

I decided to venture out to the place where I got bit.  My old neighborhood and my backyard.  Every Spring they used to mow the fields down making it really easy to walk through.  I guess it's good that they haven't mowed because it would take a crazy person to walk through that mess.

The ironic thing about this photo, is that the building you see off in the distance, is a hospital.  It is the exact building that I heard some of the remarks above,  from doctors about Lyme disease.  It's the first place I went when I figured out I had Lyme and I actually thought that I could finally get help after 4 years of advocating and fighting for answers that nobody could give me.  Boy was wrong.  Lyme and ticks are sitting in their backyard and they are telling me I'm crazy!  Pretty scary.

Above is the view of the condos where I lived.  The grass is so overgrown that you cannot even see the small trails I used to walk my girl on.

Here is the start of one of the trails leading into tickville.  I was in flipflops and that was as close to the grass as I was getting.  I met a lil buddy and of course warned his mom about ticks!  This is Dr Pepper, he's been running around that neck of the woods since I lived there.

I have assumed that my sweet, pumpkin, sugar, butt, hunny pants of a dog that I don't have anymore brought the tick inside my home, on her.

Here she is

I used to think that those tiny lil trails were the perfect spot to walk my pumpky, but I know differently now. Guys, don't do that.  Don't go walking near or in tall grasses, just don't.

If I got bit by a tick that was infected with Lyme disease and co-infections, in a city that nobody thinks has Lyme or ticks, 6 years ago, it's a fucking epidemic!  Anybody can get Lyme anywhere.  Be afraid because this disease takes away every single part of your body and your personality.  There is no cure, your normal becomes extremely different than the normal you used to have and that's just something you have to deal with.
There is treatment and things can improve, for most people but that's if you...

1.  Get properly diagnosed  Hahahaaaaaaaaaaaaaaaaaaaaaaa Good luck. I had to research and diagnose myself.  Doctors will not even say the word Lyme and now it's become a fad, because the celebrities are coming out to raise awareness.  The tests are inaccurate.  You must go through IGeneX lab testing in CA and find a Lyme Literate doctor through

2.   Can somehow muster up the funds to get treatment. The CDC does not believe chronic Lyme exists so we pay out of pocket if we want a life back.  I've paid over $20,000 in the year and a half of treatment.  LL doctors risk loosing their medical licenses to help us, so they do not work with insurance companies.

3.  Get "lucky."  That's what my doctor says. Because there is very little understanding of Lyme disease, it's basically a guessing game on how to treat it.  There are very little studies and very small amount of funds going into the research of Lyme disease.  People don't just get Lyme, they get co-infections of Lyme, that can make treatment very challenging.  As far as I know I also have Bartonella, it's what has been attacking my eyes.

Some updated treatment news:
My treatment stopped.  My lever enzymes went through the roof and I have not been on any antibiotics for two weeks.  I have to wait for the enzymes to go down before starting my treatment again.  I have been on antibiotics for a year and half and I am scared as shit.  I am scared that the bugs inside me will flourish.  I am scared to death that some of my symptoms will come back and I will feel as I did 2 years ago.  I'm scared that this is going to be the roller coaster of my life.  On treatment, off treatment.

My doctor also told me to, "cool it mother"  Violet Beauregarde style.  I've been going a bit too hard, if you read my last blog post you can see why.  I'm not ready for that intense of exercise and she's right. It's just hard to hold back when you are starting to feel better after 6 years of hell.  I'm not ready for a lot of stuff yet and that's ok.  The last thing I would want is to overdue it and have more setbacks.  So I'm lightening my load a bit ;)


My promise to myself is to not let fear of what can happen control my life. Because as of late, I feel good, near normal good.  Or maybe this is my new normal?

Here is my updated treatment video

Help raise awareness for Lyme disease and Take a Bite Out of Lyme

Thanks for reading!l