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

Lucky 22

I was eight years old when I first learned that there are no coincidences in life. Actually, there were a lot of "firsts" that day as it was not only the day I gained the above understanding, but it was also the day I would experience my first "traumatic injury" as well as my first conscious hospital visit (being born and having a bi-lateral hernia procedure done at two months doesn't count!), and my very first MRI. Here's the story:


If you were to ask her, my mom would tell you that when our nanny, MaryAnne, (Man-Ann as my sister and I would call her until we could get that darn "ry" sound right) first introduced us to her horses, that it was similar to watching at child gaze upon a celestial being. We immediately fell in absolute LOVE and awe with these majestic animals; one that even the test of time would ultimately surpass.

The Black Friesian: A Girl Can Dream  : )

I can't tell you how many times we would literally beg our beloved nanny to visit that barn, and eventually we found ourselves in the saddle - english riders in the making.


At the barn one morning, I was thrust on top of a spunky thoroughbred, named Siran, with nothing but a knitted hat my grandmother had made me. Usually we would wear a riding helmet whenever we climbed on the back of a horse, but this day was different. 


Maryanne had fitted the horse with a lunge line - which is basically a long rope that is attached on one end to the horses' bridle, and the other end, held securely by my nanny. It enabled the horse to walk around in wide circles with Maryanne standing at its' center. 


Before this event, I had only ridden ponies before, and was thrilled (and a little intimidated) to be on such a huge animal, so we decided that a slow walk was the only gait I would be riding at that day. 


To an onlooker, this probably would have been quite the boring scene had it not been in fate's hand that on this particular day, MaryAnne's husband, Dick (Lol - aptly named : ) had also been at the barn and decided to not only drive his enormous truck up the sandy path next to the pasture we were in, but to also honk his VERY LOUD horn a couple times, just in case we hadn't realized he was there. (Sigh...the stupidity of some people...)


Well, as you can imagine, the sound gave Siran quite the start, and he immediately started bucking and rearing, and tried to shoot off into a gallop while Maryanne desperately did everything in her power to calm him down. I tried to hold on as long as I could, but being an eight year old, unskilled rider got the best of me, and with one last buck of persistence I went flying through the air.


I remember landing on my side, and turning onto my back completely stunned. Suddenly, I felt a sharp, swift blow to the head and everything went black.


It was only when I was being carried into the car that I awakened, took one look in the mirror and realized I was had been trampled. It was truly an awful sight, both my eyes started to form black rings around them, and even the whites of my eyes started looking blood red. I also happened to have a huge crater of bloody hoof-print on my forehead from where I was hit, and believe me, it was not pretty.


At first I wasn't in any pain at all, just numb, but as the time went by, I started to feel just how badly I was injured. For some reason, I found myself being mad at "God" over the whole thing, and as only an eight year old would do, started to believe He owed me for this. Lol - I even decided that I should be granted a wish for it!

Now, during this time period, my favorite movie had been, "The Man From Snowy River" (It's an old horse movie - of course it was my favorite!) and as I lay on the MRI table, I silently asked god to make a sequel to my favorite movie, so that I may watch it one day. (Hey - at the time, I considered this to be a very BIG and important deal!)


Later on that evening, I was released from the hospital, and headed back to MaryAnne's house to rest. What I could not have known was that while I was being treated, Dick, must have felt some kind of remorse for causing such a perilous situation, and went to the store to pick up some movies and popcorn for us to watch once we came home.


I'll never forget two things about the moment I saw him again back at the house. First was the look of undying guilt and utter shame he held in his eyes, a look the drained any anger I had felt towards him about the situation. The second was the title of the movie he handed me in hopes of forgiveness. Not believing what I was seeing, I remember reading the title of the movie again, just in case I was hallucinating, but no, what I held in my hands was definitely something I could not have known had already been made. Unbelievably, it was the movie I had wished for, a movie called, "Return to Snowy River"...


The effect this experience had on me as an adult, is one that I think is quite understandable. Not only do I NOT believe in coincidences, but I even believe in the idea of "signs" as a way to help guide me on my path. Don't get me wrong, I never look for them, but am always observant when they appear. Hey - the last time I checked, there IS NO manual or instructions out there as to the purpose of one's life, and following signs, to me, has become more or less of a subtle guide, a way of letting me know I'm on the right path; doing the right thing. And for me, the "sign" I'm referring to just so happens to be the number 22.


It first started to appear when I was in high school, and I didn't take much stock in it as it was more of an affection than anything. It had been my first love's birthday, and the number he always wore in football. In the beginning, the number just reminded me of him, and therefore made me happy.

Walkabout 22 Adirondack Trip 1999
(From Left) Amanda, Hannah, Mary and Me 

Later though, I would realize that there was more to this. When I was a senior in high school I was one out of four people from our high school chosen to be part of an alternative senior year called "Walkabout". There was three to four people chosen from each high school in the Westchester County, NY. It had been one of the best year of my life, I met amazing people, our curriculum included an internship, a community service project, and (for gym credit) two, one week camping trips - one in the Catskills for the fall, and one in the Adirondacks in the spring. We experienced hands on learning, and our teachers treated us as adults - we were even allowed to call them by there first names! (That was definitely a first : )


It was the first time I felt like a part of a community; the first time I ever felt empowered, like I was able to do something that mattered in this world. And - I took this experience as a sign...How could I not, after all - we were the 22nd group to ever experience "Walkabout", and therefore we were known as Walkabout 22.

Had to keep it!!

Much later, as I was waiting in line to get my Team In Training, Lake Tahoe Cyclist Race Number, I couldn't help but be pleasantly surprised to see that out of the thousands of cyclists that were riding that day, and therefore the thousands of numbers I could have been given, mine just so happened to be 22.




There are actually many more circumstances that I've had where this favorite number of mine has popped up, but I think you kinda got the idea, right? 


I would say that the point of telling you about this story is this: Having Lyme Disease is one Scary "Mother" of an Illness to go through, and I tend to enlist all and any help I can get! Oddly enough, that "help" often includes following serendipitous acts and signs (Lol - especially when I see my Lucky number 22!) that I now know better not to dismiss. At every turn, and in every progress I've made on my journey has most likely been the result of persuing some seemingly unconnected coincidence. So let me ask you this, and I think it will be the only time I won't be referring to astrology when I ask it, but - What's your sign?? 


Lots of Love,
Sarah

You KNOW I just had to put a tiny bit of humor into all this...LOL.

Priceless...

"Why are you building me a house?" a woman once suspiciously asked me, as if Habitat for Humanity held some kind of monetary gain for its' participants that she was blatantly unaware of. I noticed the confusion in those guarded, untrusting eyes of hers, a look that forced me to look away for a moment and re-examine my motives. 


"Well...I think it's mostly because I can." I finally replied. It took me a moment before I looked up again at her after answering. The first look she had given me had left my heart pounding with the knowledge that this woman had suffered in a way that I, in my twenty-one years could not begin to imagine, and for some reason had left me feeling ashamed. I couldn't help but think that a look like that must have been developed over time, and almost felt responsible for it, as if something or someone could have prevented it from ever surfacing.


Overcome with the guilt that accompanied this thought, I almost didn't realize that I suddenly was surrounded by warmth as this woman reached out to embrace me. The hug went just as quick as it had come, and she pulled away, but not without first taking a moment to grab my face gently with her roughly calloused hands, raising my head up, and with a detectable quiver in her voice, whispering, "Thank You" to me. She then turned to look at her nearly finished house, placed her hand over her heart and with amazement, headed away from the porch we were both standing on and into the front door of her new home. 


I remember standing there for a second, feeling dazed and overwhelmed with emotion as I tried to choke back the tears that were starting to threaten my composure. It wasn't her words that struck me, I hear people say, "Thank You" a million times a day and often for reasons that are minuscule in comparison.  


Nope. It definitely wasn't the words that left me speechless, it was the look in her eyes as she said it. They had softened with gratitude, tears of joy were playing at their corners as if some of that ice she had formed around her heart had melted, and with that a weight that even Atlas couldn't shrug had been lifted. To her, I didn't just help build her a house, I had somehow managed to restore her faith in humanity. What I had given her was a home, but what she had given me - that look, and the implications behind it, was priceless.  


There is a short story I'd like to share, a story that some of you may have heard before, but is worth repeating...

The Wise Woman's Stone

"A wise woman who was traveling in the mountains found a very rare and precious stone in the midst of a stream. The next day she met another traveler who was hungry, and the wise woman opened her bag to him, offering to share her food. The hungry traveler saw the precious stone inside and asked the woman to give it to him. She did so without hesitation, and the traveler left, rejoicing in his good fortune. He knew the stone was worth enough to give him security for a lifetime. But a few days later he came back to return the stone to the wise woman. 

"I've been thinking," he said, "I know how valuable the stone is, but I give it back in the hope that you can give me something even more precious. Give me what you have within you that enabled you to give me the stone."

A lot of people think that Chronic Lyme Disease is an invisible illness. I couldn't disagree more. There's a certain unmistakable look in the eyes of every Lyme sufferer I've ever come across, and I even notice it in mine at times. It's the look of someone exhausted from carrying the weight of the world on their shoulders, a look that holds immense physical pain and unrelenting mental confusion that often is incapable of verbal expression; the look of defeat in a battle-wearied soul. But how many people ever really take the time to look into those eyes...why on earth would they ever want to?

I guess the message I'm trying to convey is that, in my experience, there is nothing more rewarding than giving to those in need, and that - if you are healthy enough to do so, it is the one thing that I find is the most enriching to lives (yours included : )


Sarah


PS. In a previous post, I said that I would try to avoid advertising on this site. However, one of the main intentions of this blog is to help raise funds for the medical treatments of those in need. Unfortunately, the whole "donating" idea hasn't proven to be effective, and believe me, in this economy - I understand! 


However, raising funds is still a priority of mine, and therefore I've "given in" to the whole advertising idea, and have even joined "Amazon Associates" where if you go to the page entitled "My Amazon Store" and purchase a product through that online store, Amazon has agreed to give me a 15% commission.


 I've also added info-links (they're the underlined words colored in fuchsia). If you click on them, I will receive a small payment, however, I feel obliged to tell you that if you find them EXTREMELY annoying, all you have to do is click on the question mark after you hover your mouse over the link and chose the "opt out" option. This will prevent your browser from ever seeing them again.

One last, but VERY important thing. I can't help but notice that I've accrued some followers along the way, and to be honest, many more than I had originally expected! To me this is truly an amazing kindness, one that I can't help but feel unbelievably grateful for. You have no idea how good it feels to know that I'm not alone, that these words are not being most heartfully said in an entirely empty room. Thank You...

Something to Talk About...

It is truly an honor to introduce Mara Williams, best-selling author of, "Nature's Dirty Needle" as she shares her story about her daughter's struggle with Lyme Disease, why she wrote her book, and her upcoming and much anticipated plans in the creation of her unique healing facility called Inanna House. All proceeds from the sale of her book are directly going into the funding needed to create this amazing center.

Hello, my name is Mara Williams and I am a Nurse Practitioner. Three years ago I was working for an Integrative Doctor who discovered her daughter had Lyme Disease. She decided to begin treating it and spent the next few weeks with LLMD's. Anything that she did, I needed to learn as well, so I dove right into it. I listened to ILADS workshops, studied power point presentations, and read whatever I could find about the disease. Needless to say, I was absolutely stunned by the medical controversy, the political conflict of interests, and the horrific marginalization of care that our current healthcare has bestowed upon those who suffer from Chronic Lyme Disease.

Eventually, I left this practice and moved on to work at Gordon Medical Associates where I began what I call, "Grad School" for CLD as well as other Chronic Illnesses. Then, about a year and a half ago, I was shocked to discover that my own daughter, Amanda, had Lyme Disease. She fell gravely ill, and our journey began in earnest on Sept. 26, 2010, when we first went to the ER for unrelenting vomiting and severe dehydration. Since that day, we have been gone an additional sixteen times for the same symptoms, and she has also been admitted seven times as well. We tried several different hospitals, but they were all the same in how they chose to address her condition.

On our seventh trip to the ER, I finally realized that Amanda was not going to get the support or treatment she needed for her illness. The only thing the hospitals were willing to do for her was to get the vomiting under control and give her IV meds for a few days until she was able to take food and fluids by mouth. Because her initial CT Scan and labs came back normal, no diagnostic work-up or antibiotics were given to her. One doctor wanted to diagnose Fibromyalgia, another Rheumatoid Arthritis, and most just saw Amanda as a Psych case.

I knew then that what was needed was a center where those with tick borne diseases could go for treatment and support in a compassionate setting and receive care as if they were in a hospital with 24/7 nursing care and other support.

I began talking to friends about creating such a place that I would call, "Inanna House" and telling them how I envisioned it. One friend advised me to write a book so that I would have some clout when I presented a business plan to those with the resources to fund the center.

This motivated me to write, "Nature's Dirty Needle". The book describes what it is like for those who suffer from Lyme and its co-infections, how it affects their families and friends, and how it impacts their lives on every level, and in every way. I wanted the book to be a resource for those still undiagnosed, and for those family members of Lyme sufferers who do not believe that they are sick, and mistakenly think it's all in their head. Reading story after story of cases with so many similarities brings home the reality of Chronic Lyme Disease, and how devastating it is for everyone concerned.

I have been asked many times to write another book with more stories after Inanna House is up and running and cannot wait to do so, and share all the success stories we will have to tell from it.

Inanna House will be a place of hope, healing, and peace. I envision a retreat-like setting in the country, private rooms, safe pathways for walking, pools and hot tubs, an infrared sauna, energy treatments, IV treatments, IV antibiotic treatments, detox programs, organic, healthy foods to eat, and emotional support. I believe that the mental, psychological, emotional and spiritual aspects need addressing in order to completely heal from any disease, and this will be a part of the program as well. I also plan to create an endowment so that those who have depleted their resources can still come and experience this unique type of healing. At this center, the best of all worlds of medicine will be incorporated into the program.

Inanna House will also have MD supervision. There will be treatment rooms, a clinic, and room for conferences and classes. I hope to be able to offer residencies for health care professionals so we can increase the number of Lyme literate providers. I also hope to use the clinical data we collect to further prove to the nonbelievers that we aren't crazy, and that these infections do indeed exist, and in epidemic proportions.

Currently, we are treating Amanda at home. We give her IV hydration everyday, and include amino acids and minerals, and phosphytidal choline, which helps bind the die-off toxins, clean cellular debris, and enables the liver to function better. We are giving her meds around the clock every four hours.

Her pain with the Herxing is incredible, but after fourteen doses of Gentamycin for Bartonella, her eyes are more clear, her brain is more sharp, and her nausea is better. She is encouraged and feels that she is finally moving forward. However, it's unbelievably shameful that we are forced to do this at home because hospitals either don't believe she has an infection or are in fear of their liability. 

This MUST change, and by creating Inanna House, I believe that the Lyme community will be taking their first step in the right direction, and will soon be shown the acknowledgment they deserve in our current healthcare system.

Thank You,

Mara Williams, NP


Please help us create Inanna House by clicking on the link below, and thank you so much for your support! Lots of Love, Sarah

The Relationship Dilemma

"I was once so in love, that everyday I would wake up and smile just knowing he was in my life, and all mine..."

At times, the hardest thing for me to imagine is that the quote written above was actually once said and experienced by...Me. 


Sometimes I don't even remember what it was like to be that "person" I once was. It seems like she existed in a lifetime that swiftly ended LONG ago. 


I'd like to go along and say with the rest of the "Haven't yet found that RIGHT person yet" crowd, but my hesitance towards any type of serious relationship is for an altogether different reason.


Please don't misunderstand, in the now almost 10 years I've been aware of and constantly trying to keep at bay the illness I suffer from, I definitely have had relationships every now and again, but they were with people who I knew would never work, and at the most would last six months (lol - which is usually when the chemistry runs out and the both of us realized we had NOTHING in common).


I believe it was a conscious choice I made, and one that most people could understand. You see, when someone is critically ill, most people assume that they either get better, or - die. That's how it is in Nature and how it should be in life (in my opinion). 


No one wants to watch someone they love suffer for years and years, and AFTER those years and years even the "sufferer" notices the changes in those "loved ones" around them. It IS really hard to watch; a dire situation where both parties involved seem to whither, fade, and lose that "light" within them with every failed attempt after another. 



SO. Having said that - why would I purposely allow someone in my life if I knew I would be a burden to them? I'd like to think that when you enter a relationship there should be a 50/50 give and take, and I know that with being chronically ill, that is something that I simply cannot give.

However, I never thought it would take this long...I always felt I had a "shot" at recovery (and still DO!), it's just that I'm coming to realize that Life without Love is just as damaging to a person's soul as a disease is to their body. 


I'd like to think that one day I'll meet someone who can look me in the eye and without need for explanation, just somehow understand where I've been, know where I'm at, and with that knowing, catch me as I (inevitably) collapse with sheer exhaustion into their embrace, soaking up all the Love I've missed out on, and finally being able to give that love back with the simple knowledge that this person has been there too. 


I watched an oddly beautiful movie the other day (ironically) called "LOVE" and was so captivated by the beauty in the opening lines that I thought to share, as it not only reflects how I often feel, but continues to give me hope in the most lonely and dark days:

"Sometimes when I wake up, I feel like I'm still dreaming. I feel like all the colors and shapes of the world have collided, and all I can do is just sit there and watch. I think a person's heart has a way of turning off when it can't find reason...I guess that's why nature has always had an inspiring presence - there everything follows a purpose...

 ...I'd like to hope our history is worth remembering; an imprint of careful design, a feeling of heartfelt purpose, and a sense of hope for something greater than ourselves. Then...maybe I'll wake up."

 Sarah

Dear Universe: "You Win."

Photograph taken by: Rosie Hardy

"I have found that there are times when there is simply nothing else left to do but run outside, throw your hands up, look with sheer amazement at the Universe, and with astonished humility and awe say..."You Win." 

Believe it or not, I no longer envy those who have the illusion (Yes - illusion) that they are not only in "complete control" over their lives, but even feel as if they are its choreographers. Nope! I can sincerely say that I had abruptly abandoned that notion a LONG time ago, and (obviously) for good reason!


Before this illness, however, I actually used to think of myself as a very imaginative person, and could even have probably come up with a million different problem-solving solutions to "what if" scenarios on the spot. 


However, of all the millions upon millions of things I could have conjured up in my crafty brain, not once (ever) did it occur to me that I would end up where I am today: not only trying to live with a chronic illness that even the best horror novelists couldn't conceive of, but ALSO having absolutely no CLUE how to fix it. 


It seems that with both the controversy and the illness itself, every road I attempt to take inevitably turns out to be a dead end. Sometimes, it's almost as if they're SO many walls around me, that I often feel completely and utterly - trapped. 


And...THIS is where the whole "You Win" comes in : )


It's ironic how we consider calling on a "higher power" (whatever that may mean to you) only after every possibility and every resource has either been exhausted or has failed. I often wonder why it takes SO many people to get that far, and that desperate before they realize that just saying, "You Win" (please fucking help!) was an option they had all along.


Surrendering to the notion that you cannot possibly control and see the outcome of all the events put into motion in your life is quite an interesting prospect. Why? Because there is a second part (the part I LOVE!) that inevitably comes with it. The part that, after doing so, literally catapults you down paths you never thought to follow, ones that ultimately lead you to the answers found in places you never even dreamed of looking. 


Like I said in the beginning, I no longer envy those who "think" they are in control of their lives...why? Because their realities are filled with finite possibilities whereas mine, mine is open to the fact that there are (often unexpected) endless ones. 


All it takes is to stop saying Why? and start asking that "Higher Source"...How? If you trust that "one day" you'll understand the "why" part, please try and put that same trust in this - it works (if you let it!)


Lots of Love,
Sarah

Bridging The Gap

"People May Not Remember Exactly What You Did, or What You Said, But They Will Always Remember How You Made Them Feel"
          -Unknown 

I've been told quite a few times in my life that curiously, I have a "way" of explaining things that sorta makes whatever I'm talking about, not only understandable, but almost...palpable. (Wow - Kudos to ME, right?! : )

What's my secret? - I like to talk in metaphors...that's it! (Um...Sorry to disappoint...) But it's actually the only tool I have that enables me to "bridge the gap," between what I may experience that you may not understand. How do metaphors help with this? Well...it gives me the opportunity to allow you to momentarily "feel" (using symbolic analogies) what I feel. Actually, it's pretty easy...

I often get a LOT of questions from various people, asking me to describe my symptoms...most times they are surprised at what I end up saying (which I find extremely entertaining : ) So - here's the list:


Note: Thankfully, I do not feel like this ALL of the time, and I certainly cannot say that other Lyme suffers have the same experiences I do, but I CAN say that throughout my long history with this illness, every single one of these "metaphors" have been fully felt and expressed in the exact manner I describe below.

1) Q. What does having Lyme feel like?

    A. It feels like I'm trapped in prison with a really annoying, 

        life long neighbor. One who simply refuses to leave me 

        alone...REFUSES!!

Gosh...can't someone please (for the love of God!) get me one

of those "Get OUT of Jail Free" Cards! Sigh...this whole set-up we got going here, is seriously driving me BAT-SHIT crazy!!

*Notice how I'm "personifying" a bacterial infection here. This is not a mistake - every single Lyme patient I've ever met will tell you the same thing. They very strangely, and quite uncommonly feel as though they're playing a torturous game of ME vs. IT. They are oddly aware of its presence...which is something I've NEVER felt about any other type of illness or infection I've ever had.


2) Q. What do you mean when you say you feel 
       weak and tired?

    A.  Are you a swimmer? When you were a kid, did you ever

         have contests with your friends to see how long you could

         hold your breath underwater? If so, do you recall the

         sensation you felt, just a 

         millisecond before you 

         decided you couldn't take 

         it anymore, and came up

         gasping for air?          

         Remember how the "life"

         seemed to drain out of you,    

         and you felt your entire 

         body almost go limp as 

         you started to fade out (right

         before you came up for air)?  

         That momentary sensation you felt, the one that made you 

         feel like you were going to die if you didn't get oxygen...Yeah

         - that's how "weak and tired" I feel every single second on
        most days.


3) Q. What does the "pain" in your spine,  joints, 
        and head feel like? Didn't the IV Rocephin 
        help with that?
    A. Have you ever cut your finger, or some other body part, that
         eventually became infected? Do you recall what it felt like?
         It's an unmistakable burning, tingling, gnawing, infection-
         type pain. Now, remember when you came to your senses and
         FINALLY put some Neo-sporin, hydrogen peroxide, or some
         other topical antibiotic remedy on the infected area?
         Notice how doing so seemed to tame that "fire" you felt?
         How you kind of sighed with relief, knowing that doing so 
         was exactly what your body needed to fix the problem? It was
         soothing and comforting, right? The area surrounding my 
         spine, joints, and head feel very much like that "infected
         cut", and for the first few months, receiving the IV Rocephin,
         felt almost like a liquid Neo-sporin. It had a way of "taming
         that infectious fire" and it allowed me to pretty much get on
         with my day. Unfortunately, for me, the last few months were 
         different. I suddenly felt like I had a MUCH bigger "cut" and 
         was still adding the same amount of that liquid Neo-sporin. It
         just wasn't enough anymore, and I slowly felt that fire come
         back. It was only then that I just knew I was in serious 
         trouble...especially when my Dr. suddenly decided it was
         time to STOP the treatment, but that's a different story.


4) Q. What are your thoughts about applying for
         and receiving disability for Lyme Disease?
    A. I find that the "disability" process is quite similar to 
          suddenly waking up one day and realizing that your house
          and everything you own is on fire. Frantically, you start
          calling the fire department, the police, and every other local
          entity that may assist you, while barely managing to crawl
          to safety without becoming engulfed by the flames yourself.
          You mistakenly think that the people you called are on their
          way, but it is only after EVERYTHING you ever had is lying
          in molten ash around you, and you are left with nothing, that
          they finally decide to show up.


*The rest of the following questions, I actually don't have metaphors for, BUT I am happy to answer them all the same : )  


5) Q. If you're SO disabled, how can you possibly
         be writing a BLOG??

    A. To be honest, it took me about 4 years to be able to start
         "writing" again. Even now though, my symptoms wax and
         wane in such a way that there are times (a LOT of them) 
         where I look at what I've written so far and wonder how on 
         earth I was able to not only write an entire post, but even be
         able to coherently organize, plan, and execute a single 

 fucking sentence! (As you can see this obviously frustrates
me...) What do I do to get around it? I write when and what I can, and try and be grateful that I'm able to do so...at least part of the month.






6) Q. Why are you constantly saying "I'm Sorry"
         whenever you have those seizure-like 
         episodes, walking issues, and periods of 
         paralysis?
    A. For the LIFE of me, I simply do not understand why people 
         don't "get" this! To me, going through this type of experience
         while someone is watching is the most mortifying, horrifying,
         and utterly embarrassing thing that could EVER happen!
         I HATE it when people see me lose control over my body like
         that! I mean - how humiliated would YOU feel if you 
         suddenly, for no reason at all, lost control of your bowels, 
         and actually shit  
         your pants in front
        of everybody!
        Thankfully that
        humiliation has
       NOT happened to
       me, but I would 
       imagine the feeling
       being quite similar.
       I'm only 30 for 
      Christ's sake. SO -
      let me say it again: 


7) Q. You're going through so much...why don't 
         you ever cry?
    A. For two very easy reasons. The first is that the saying, 
         "People can get used to pretty much anything" is very true.
        In that respect, I've simply gotten SO used to constantly being
        in pain, dealing with the financial hardships, coping with the
        endless (self-inflicted) loneliness, and trying to just "get by",
        that THIS reality has become almost "normal" to me. In fact,
        the only time I actually cry is from any kind of RELIEF (Ha -
        it's more like a "reprieve"!) I experience over any one of the 
        above mentioned being even temporarily abated. The second
        reason is that (especially with the neurological, cognitive,
        and psychiatric aspects of this illness) some of the symptoms
        I experience are SO downright bizarre, incomprehensible
        and astonishingly unimaginable, that when I experience them,
        I often find myself in a state of complete shock and can not
       even begin to mentally process such a phenomenon - much less
       have an "emotional response" to it!


8) Q. Why does having "moments of clarity"
          ultimately make you sad?  
     A. There are moments, even hours that randomly occur where
          a shift takes place, and you suddenly, and without effort,
          feel and perceive everything normally again. (You'll know
         when this happens because you'll suddenly start wondering
         with alarm, why on earth you AREN'T working, are living 
         with your parent's, DO NOT have a social life anymore, and
         are SHOCKED to realize that you are NOW 30 years old! -
         where did those three years go?!) While you experience this
 you think it will stay, that you are "back" to your old self again, and you begin to have HOPE. Without fail, however, these moments or hours never last, and you can almost feel yourself being pulled back into "Lymeland". You desperately try to fight it, to hold on to this sudden clarity, but attempting to do so is pointless - it's like trying to catch the wind, and you watch helplessly as this feeling fades, as it slips right through your fingers. 







*If you are reading this paragraph and managed to make it through to the end of this post - I sincerely Thank You! (I KNOW no one likes to hear about this type of stuff...usually, and quite understandably, it's simply easier to look the other way.) 


However, please know that I am not looking for "sympathy" here, my intention is really to help people UNDERSTAND how life-changing this disease can be if NOT caught in its early stages, and one of the ways I can get that through to you is, unfortunately, by trying to have you imagine yourself experiencing the kind of insanity that comes along with the later stages of the illness. 


Hopefully, by now, Lyme Disease is AT LEAST on your radar...it IS epidemic nowadays, and prevention and early treatment is KEY.


Best Wishes,
Sarah