I know a lot of my friends and family are a bit shocked, and maybe even a little embarrassed that I am sharing such a deeply personal and vivid account of what my life has been like with Lyme Disease.
It's actually interesting to note that before I started this blog, I NEVER had ANY intention of "coming out" and sharing my story, so I suppose I have two questions to answer regarding that....
To my family and friends: I know some of the things I've been talking about is hard to hear, but please know that I'm not telling it for you. I'm actually writing it for everyone but you, with a sincere desire to spread awareness to as many people as I can about this disease.
It's the only "weapon" we have as a community against the controversy, and I feel that if enough people are "Aware" of what can happen if not treated early, that it will not only aid in the prevention of later stage manifestations, but will also eventually FORCE our governing bodies to finally acknowledge us so that more and much needed research and the "fight for a cure" can even BEGIN.
This leads me to the second question I need to answer: Why am I coming out now about it? Well, there's a couple of factors that went into this. Mainly, it's because I was simply too sick to actually create a blog, but there was also the yearning to NOT want to be associated with the disease at all. I just wanted to get better and forget it EVER happened. Lol - trust me, there's a MILLION other things I'd rather be blogging about! Fun, Wonderful, Adventurous things - things that I can only dream of at the moment.
I once asked a cousin of mine, (who is a very left-brained "realist"...lol - we're quite the opposites :) I asked him why the CDC or ISDA won't put money into research to learn more about Lyme, it's co-infections, how it effects the body, and why aren't they trying to find a cure for us? His answer will always haunt me: He simply replied, "Sarah, it's because Lyme doesn't kill you". Oh - how I very much disagree with that statement! It actually does KILL a person, in every way possible without them actually dying (and in some cases, people DO actually die from it!.)
Everyday, I feel like I need to prove myself to people, like they don't believe me that what I'm going through is real, and that in itself is exasperating to me. I SO wish the medical community was more like our Judicial System...Like - What ever happened to being "Innocent until Proven Guilty". I mean...gosh - I've never been a liar, a hypochondriac, and I certainly DON'T suffer from Munchausen Syndrome! In fact, I absolutely hate going to doctors, hospitals or anything of the like, and believe me, your "sympathy" is the LAST thing I want or need.
Even if we had a rather large death count for this illness, think back to when "AIDS" first came out, and how long it took the CDC to do SOMETHING about it, and that illness REALLY did kill - and quickly!...it's such a shame knowing that it could've been contained...Don't believe me? Take a look at this scene from the movie, "And The Band Played On" and see what I mean:
Luckily, there have been "Independent" Organizations that have risen to the challenge, and are finding their own ways to research and raise funds. This is beyond miraculous, and because of these organizations we have some hope to hang onto.
I honestly don't know how long it will take, but ONE DAY, I know CLD will be acknowledged, and actually feel very saddened by that at the moment. I know it sounds ridiculous, but really, when this DOES happen, what can they possibly say to us? Can they give back years missed, friends lost; can they repair our jaded hearts from being cast out and labeled as "crazy" or "psychosomatic" patients when for years what was REALLY happening is that we were infected by a vicious anti-biotic resistant, stealth bacteria? (Don't you remember warnings about this type of anti-biotic resistant bacteria in the early 90's? Why IS everyone so surprised that it is actually happening!?)
The answer is NO - they really can't; I just don't think an "I'm Sorry" will cut it this time. It's too late. The only comfort I will get is knowing that I was part of the group who DEMANDED a second look, a look that I know will eventually save millions from having to go through what I have. THAT is why I'm telling my story...I only hope that you will to be brave enough to read it...
PS: If anyone has been following, "My Story," you may be wondering where on earth Chapter 6 is. To be honest, September 2007 is VERY hard for me to look back at and write about, and a LOT of it I simply cannot remember. I also don't want to post it during the holiday season, but promise to do so afterwards. Trust me, it will be a VERY hard read, and even though I survived it, I can sincerely say that sometimes, I wish I hadn't. There are just some things that should never be experienced, and I would count those last four months in LA as one of them. Don't worry - there was NO suicide attempt this time, I learned my lesson the first time! But...I did repeatedly beg my sister to kill me, and at times I almost think she considered it. Because of that whole experience, we even have a pact about what to do if I ever become that "gone" again...