A Horse of a Different Color...

"An eye for an eye makes the whole world blind" ~ Mahatma Gandhi

As a woman, and probably a Pisces, (sorry for you non-astrology believers...) I never quite "got" the whole idea of "Fighting Fire with Fire" - it just doesn't make any sense to me...when I hear people speak of this well known ideology, I often turn my head to the side, nod in COMPLETE confusion, trying desperately to understand this kind of nonsensical logic when all the while, the only thing running through my head is, "Huh, um...Rrriiight...you know...Water would probably be a MUCH better solution for that..." Hell, I mean - it HAS worked pretty darn well for our firefighters all these years - right?? 


Unfortunately, what I have noticed is that the "Western World" tends to not "agree" so to speak with what they would most likely consider to be my "idealistic" (even romantic) notions mentioned above.


And THIS is why I tend to get ecstatic whenever I meet or see someone who has cleverly managed to put the principles I so adore into practice - and SUCCEED.


You may or may not have heard of her, but I'd like to introduce you to a person I am VERY fond of, a person who has literally stepped outside the box and dared to take a look at molecular biology from a completely different perspective; a perspective that I believe will not only change the way the medical community understand bacteria, but one that will hopefully lead to the NEXT generation of antibiotics. Her name is Dr. Bonnie Bassler, and I believe her work to be the future in modern medicine.


To learn who she is, and what she has discovered take a look at this quick video:




I have tried numerous times to put her famous "TED" video (found under the "inspirational videos" in this blog) up in hopes that it will, lol, start a FIRE amongst us CLD patients with all of the implications this discovery of "Quorum Sensing" could mean for our future, but it hasn't really seemed to catch. So - I decided to spell it out and write a post about her and WHY I think she's so amazing!


In order for me to do that, let's go back to my little analogy about fighting fire with fire. In my eyes, I believe this is how today's "broad-spectrum" antibiotics work. They do NOT distinguish "good" from "bad" bacteria and basically kill everything in their sight. This is NOT good, and actually NOT true. With the discovery of antibiotic resistance, mutations, pleomorphic changes in the bacteria to avoid being harmed, as well as the discovery of impenetrable bio-films, one would think that a "new" tactic is in desperate need. 


What Bonnie has essentially managed to do is this: in a world where the only answer to anything pathogenic is KILL! KILL! KILL! Here's a woman who is basically cocking her head to one side and saying, "Hey! Don't you know that the best way to win a war and still preserve the land is NOT to blow everything to shreds? Why don't you simply silence the enemy's lines of communication? Seriously, what could they possibly do then? Now, THAT is what I call fighting Fire with Water : ) 


Thank you Dr. Bassler for your unbelievable work, and I'm sure that I'm not the only who thinks this when I say: 

To learn more about Dr. Bassler, please visit the following sites:

Princeton University Molecular Biology Website

Obama Nominates Bassler to serve as a memeber of the National Science Board


And for those of you who are EXTREMELY left-brained and want a truly scientific explanation, here is a speech Dr. Bassler gave to the NIH (National Institute of Health in 2009)

Lol - my favorite part is when she says (to the NIH), " So I really only have one goal in this seminar and that's to try to convince you that bacteria talk to each other."


Another favorite quote that she says is, "...What's SO remarkable is that the last 60's year's of antibiotics actually worked...!"


Lastly, as a side note if you will, I read an article in the news (from my very own blog by the way) this morning, entitled, "Don't get thrown for a loop by Lyme Disease" written by a Dr. who advocates against the existence of CLD. In the article he states that those of us that say we have it are pretty much insane...


The only thing I could think to say to this man is this: Lyme patients often suffer from various lapses in cognitive abilities. One of them happens to be the ability to process and assimilate NEW information. With all of the emerging evidence on this disease and its' co-infections, I can't help but wonder if he may possibly be suffering from the same malady :P


Many Blessing and Thanks for Reading!
Sarah

The Part of Me I Hope Remains...

"People do not see the world as it is, they see it as they are."

It's funny how things change... I remember when I fell in love the first time, the only thing I seemed to notice were other people in love; people who were happy - just like me. Life was easy, weightless, and time seemed to move just a little too quickly. Not that I noticed that particular peculiarity of it, but how could I have? I'd never known differently...

I also remember the first time I experienced depression and anxiety and how during that phase, I only seemed to notice things that were depressing and anxiety producing. How my body felt heavy, and this time, time seemed to move at SUCH an excruciating slow pace. Even the world seemed more burden-filled, dark, and unsafe.


Now, I'm pretty sure that the paragraphs above are relatable to most people to some degree; everyone has had at least a "sense" of these types of feelings before, however, I can't say the same about CLD. I know it's not something that is relatable to a LOT of people, and this fact unfortunately separates me from the "norm" and catapults me into a space that is only familiar to me and the Lyme Community. 


Because of this, I believe that in some respect there's an opportunity here that I don't want to pass up. So, this is the part that I hope remains with me, the part that I never want to forget from having this particular experience:


1. From experiencing years of suffering, feeling helpless, and desperate, I couldn't help but "notice" and have deep compassion for others who have experienced the same (and I'm not just talking about Lyme...), and because of that I will always remember to take only what I need (no less, no more), and GIVE anything "extra" to those who need it. In order to do this, I will constantly remind myself that:







2. Because my illness is "Invisible", I want to remember to never judge anyone...I can honestly say that no one can tell what a person is going through just by looking at them, and because of this I will remind myself to:

3. I realize that this may sound like a totally RADICAL idea, but because I've seen how the very governing bodies that were made and meant to protect and serve us without ANY KIND of conflict of interest or gain, completely abandon, ignore, humiliate, and leave people like us to continue to suffer and die for nothing but greed, money, stature or simply because their ego's refuse to say they were "wrong", I've realized that SOMETHING needs to change.

I actually believe that as a whole, the world would be a MUCH better place if everyday people began to entertain the notion that we are ONE, and therefore responsible for one another, and for each other's well being. For me, the days of "This is not your problem" are over - if I see an injustice being done, and know that help is both wanted and needed, I WILL NOT stand aside and watch. 

This also means that I'm now an advocate for "Practicing Random Acts of Kindness". I WANT everyone I meet to be happier after they've left. These two ideas put into practice can cause quite an extraordinary ripple effect... try it and see : )

4) This last tid-bit is something that I think I will have to work on for a LONG time before I come to terms with it, but after YEARS of experiencing feelings of anger, despair, frustration and downright disgust towards those "governing bodies", I've learned that anger and all of those other emotions are a poor use of whatever limited but precious energy I have, and realize that it in itself is toxic to feel on a day to day basis. There is only one quote, and it's a favorite of mine, that even allows me to entertain the notion of "forgiveness" towards those who have wronged and ruined the lives of SO many, and the above is it. I HAVE to remember that to be wronged is to be hurt once, but to not forgive those who have wronged you, empowers them to hurt you twice. From now on, I'll do what any Pisces does best - learn to cleverly swim around obstacles...even if they are ones that were never meant to be there in the first place.

Thanks for reading and Many Blessings,

Sarah

Why Are You Telling Me This...?!?

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...


Many blessings,
Sarah 


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...

Little Bee and Me

If any of you have read the book, “Little Bee” by Chris Cleave, you’d know that experiencing certain situations can drastically change the way a person perceives their reality.

The book is about a little girl who after watching her Nigerian village be destroyed and all of her family raped and slaughtered after an oil company had discovered that underneath her land, lay abundant, untapped natural fossil fuels; she alone survived and was sent to a refugee camp somewhere in England that she eventually escaped. 

The Nigerians that had been paid to “get rid” of her family had done so in such an unimaginable way, that whenever this girl found herself in a new environment, in any new type of surroundings, the very FIRST thing she did was find a suitable and effective way to...kill herself. Why? Because she knew that if anyone ever found out who she was, she would be sent back to Nigeria, and her fate there was, in her mind, so horrible, that she would rather die quickly and by her own hand than go back.

Why am I sharing the details of this book? Well, if I try to set my political and VERY “Green Energy” (Oil Hating) beliefs aside, it’s because I’ve noticed a similar change in myself after years of experiencing life with Chronic Lyme. It has given me a new set of eyes, changed my thoughts about the world, and above all, what I care about in it.

I started noticing this about two years back, when after being completely bogged down by medical expenses and seeing no reprieve from it in sight, I began to look at my surroundings and whatever new environment I entered into and start to really “look” at material things, comparing what each item costs to what kind of medical treatment or item needed I would have been able to afford had I NOT bought whatever the “thing” was I was looking at. I also started to do this with other people as well... 

Lol - you know when a person gives you the “once over” look (hate those people!!) to kind of weigh and measure you as to how fashionable you are, or well kept - basically it’s a VERY shallow way to determine how “worthy” of their time (at least in their mind’s) you are.

I began to notice myself doing the very same thing, but in the complete opposite manner. I would mathematically calculate the cost of what they were wearing, their accessories, shoes, and makeup were, and found that the higher the number was, the more sick to my stomach I felt. I felt like shaking them, like they needed waking or something, and I couldn't seem to stop these three despairing questions from running through my head;

1. Why are you buying such useless shit, that will probably end up being in a landfill three years from now, completely forgotten by you, and adding to the very severe non-degradable waste issue we are experiencing right now! 
2. Do you know that your outfit could’ve given me five months worth of treatment, that I honestly have no idea how I'm going to be able to pay for? Why aren’t you using the money you’ve earned to save for anything and everything you can’t conceive of at the moment? Please...don’t do what I did - build a safety net for yourself! Just in case... 
3. I apologize, but this has to be said...Do you know that what you are wearing was probably put together by a child, who works in a sweat shop, lives in a third world country, and gets paid pennies by the hour...Ummm - I’m sorry, how much did you say you paid for that “designer” outfit you’re wearing? 

Did you also know that what you are really paying for is the advertising costs it took for that company to put your product on some photo-shopped, impossibly flawless model up on a billboard, to try and make you think that having that product is what “Happiness” is all about?? Does knowing this change AT ALL how you feel about what you just purchased? If not - I honestly don't want to know you (Lol - and I BET, by now, you probably don't want to know me : )

Bottom Line: I REALLY don’t care about material things anymore. (Hmmm - there was probably a MUCH nicer way to say that...uhh -sorry?)

The thing that surprises me the most is that people already KNOW this - it’s become the norm. Our generation was brought up on “Brands,” have completely disconnected with nature, and therefore, cannot even emotionally react and even connect to its’ alarmingly destructive changes or imagine what that really MEANS. 

Don't Believe me? Try this: In one minute write down as many name brand products you know AND the names/species of the trees/plants and animals that are found in your local area.  Lol - see what I mean?!

Mark Twain really DID get it when he said,

“Civilization is nothing more than an endless multiplication of unnecessary necessities.”

Even though the above mentioned is true, it IS the "Holiday Season," so if you care enough and understand that there is something you can do about this, please try avoid buying products from the following companies that are notorious for their child-labor sweatshops. Also, there ARE some really awesome companies out there that refuse this type of child slavery and believe in "Fair Labor or Trade". This list is a little harder to find, but I know that Patagonia is among them, and that both Nike and H+M have both (forcefully) been cleaning up their acts and are now members of FairLabor.org 


Also, independent artists such as those who make products to sell on Etsy.com make awesome and unique gifts as well. Some of these artists even donate portions of their proceeds to charities, including Lyme organizations! (which makes me VERY happy : ) So, for this christmas, why not give them a shot?? Happy Shopping!

List found at: http://feelgoodstyle.com/2011/05/09/sweatshop-labor-used-to-produce-common-brands/

Many blessings,

Sarah