The Art of War: According To a Pisces

Recently, while putting together the final touches to the Indiegogo campaign, I had the honor of speaking with the Founder and CEO of Inanna House, Mara Williams. 


Something she said, struck me and I finally realized why I've chosen her vision for Inanna House to both advocate and fundraise for.


I had inquired about getting a very prominent Lyme Advocate involved in the campaign, and she simply replied that this person was too busy, and so entrenched in trying to change "the Political Affairs regarding Lyme Patients" to participate.


The second she said that, a vision of a person passionately throwing himself against an enormous black mountain in a desperate attempt to move it, flashed threw my mind, and I kind of chuckled and said, "Well that's not gonna happen just yet... : )


Please don't misunderstand, I admire ALL efforts that are being put forth to change and rectify the controversy surrounding this epidemic...it's just that I've recently chosen to "fight" in a different way - one that suits my nature much better : )


I'm sure there are a LOT of different opinions about Pisces in general out there, but the ONE thing that is incredible about us is our ability to adapt! 


Going back to the metaphor above, if I saw an enormous black mountain that I needed to have moved, I would NOT throw myself against it, no...the Pisces in me would simply want to carve a watery path around it, and ask others to follow and - in a nutshell, this is what Inanna House is doing for us!


Eventually, if enough of us follow that path, something amazing would happen, something only water could do. It would erode the foundation of that impenetrable rock and we'd all watch in wonder as that mountain simply crumbled to the ground. Now...wouldn't that be the ultimate understanding of Lao Tzu's quote in The Art of War, "Know Thy Enemy"??

Here's What We Need To Do

• Click on the icon for our campaign below, and if you can, contribute - we have amazing perks AND if we don't reach our goal in 45 days all contributions will automatically be refunded, so there's no harm in trying : ) 
• I know there are many Lyme patients in financial despair and cannot contribute, but even then, there's so much you can do to help. A short lesson in understanding the "Indiegogo platform" will help you show you why:

*They have something called a "gogofactor" which means that a unique computer algorithm can automatically tell how many people are going to the site and sharing the campaign with others. If enough people go to the site and share using the "Indiegogo Sharing Tools" Inanna House will be featured on the website itself, which in turn, would gain us global and media exposure!*

How to "Share"

1. If you have a facebook or twitter account, go to the website by clicking on the icon below, and click the facebook "like" icon on it; if you have a twitter account, click on that icon and tweet something GREAT about it!
2. E-mail the campaign to any contacts and friends you'd like and use this particular URL link to direct them to the campaign: http://igg.me/p/161260?a=666784 (it's the gogofactor URL)
3. If you have a blog or website, please either share this post, or create your own post about it, and use this HTML embed code to get the image below, it will enable them to click on it and direct them to the site: <iframe src="http://www.indiegogo.com/project/161260/widget/666784" width="224px" height="429px" frameborder="0" scrolling="no"></iframe>
4. The last thing you can do to help us get featured is just by going to the site and clicking through it...that's it!

All My Best,

Sarah : )

PS: I know my pitch video is a little choppy; I did my best, and I have Lyme Disease - get over it! I do enjoy a good laugh though, and am happy to be the fool for a good cause, soooo if you want to see something REALLY funny, go to my "blooper reel" in the Gallery Section on the website : )

Crossing the Celebrity "Red Tape" Divide

Those of you who've read my previous post, "Taking the Initiative For Inanna House," would know that for the past few months I've literally exhausted myself in an attempt to raise funds for this amazing healing facility.
I feel so fortunate and proud that I was at least able to raise close to $1,000 for them, however, from this I've learned one very important lesson, and have also found myself asking one very important question.


I've always had this annoyingly stubborn notion that if you want to get something done, you have to do it yourself, but circumstances being as they are, health-wise at least, I'd liken the experience to being similar to that of a Cancer patient trying to fundraise for the American Cancer Society while undergoing Chemo. Kinda silly, no?


There is a very prudent and heartfelt reason for this kind of idiocy however, and it is this: Unlike The American Cancer Society, Chronic Lyme Disease Patients really don't have an Organization or Society to help them while they are sick, and they especially don't have these types of programs to raise money for those who can't afford treatment. 


This realization got me thinking (oh boy : ) about a simple question.

Would knowing the right people, those of influence in particular, help raise the kind of money needed to make Inanna House a reality?

This question has led me, Mara Williams, Celebrated Author of "Nature's Dirty Needle," and Katrina Makris, Late Stage Lyme Disease Survivor and bestselling Author of "Out of the Woods" form an idea for a different kind of fundraiser...

Indie Gogo is an amazingly successful on-line fundraising platform for various causes, and might just be exactly what is needed to get us to our $175,000 start-up goal. However, it is my understanding that the success of an endeavor like this is solely reliant on the "Perks" it gives to donators. And this is the area I need help in...

If there is anyone out there who has a contact, whether it be a famous celebrity, artist, musician, actor, sports player etc. who would be willing to participate in this fundraiser by either signing  autographs or memorabilia, donating signed by artist music cd's, or even donating products or a service as a "Perk" for a high paying contributor, please let me know - I would be SO grateful!!


I can be reached at: 
Lamandos22@gmail.com


Also, if anyone has any other ideas as a "Perk" for this campaign, I am definitely ALL ears : )


Thanks again,
Sarah


PS: We can't begin the campaign until all "Perks" are noted and accounted for, so please let us know before July 1st.

Taking The Initiative for Inanna House

       INITIATIVE:

 Success comes to the person who does Today what you were thinking about doing Tomorrow.

I remember looking at people who fundraised for various causes, and found myself curiously wondering at their passion, their dedication and, of course, their perseverance. I would look at them and think,"Jeez! What on EARTH lit a fire under that guy's ass!" Lol - you know what I mean...What created that motivation? What happened to them?

Well, one random early April day, I finally got a taste of this elusive fire; it literally exploded within me as I learned that my step-father and mother were, after thirteen years, ending their marriage, and...that this action was partly due to his inability to understand or even accept how Lyme Disease has affected me and my life. 

In fact, he became so adamant and abrasive towards me about the fact that my illness was, "ruining their marriage" that I actually had to leave the house and was graciously taken in by my Uncle and Aunt.

At the time, I was already planning my first Inanna House Fundraiser, but the events mentioned above made me take it to a whole new level. I simply could not process all the emotions I was having regarding the situation, and my role in it, that I found myself obsessively trying to distract myself by creating bracelets, necklaces, rings, earrings, Dead Sea Salt Scrubs and Mud to supplement the donation classes that had originally been intended as the main fundraising tool at the Yoga Studio we were having the fundraiser at.

The only thing I was capable of focusing on was the idea of Inanna House, and how it simply needed to exist so that something like an illness tearing a family apart due to ignorance and a lack of resources, such as a place that offered in-patient longterm care for people like me, would never happen to another family again.

Looking back on the last two months, however, I can't help but notice that good things CAN come from seemingly catastrophic events. I don't know how long I will be staying with my Aunt and Uncle, but my time spent here has literally been an oasis of peace...so different from the tension that I suppose I always knew was there when I was living with my step-father and his children. I think I'd have to invent a new word for them, because "gratitude" simply can't contain or even explain the bursts of emotion I feel every time I realize where I am...all I can say is that I haven't slept this well in years!

Although I hate that it happened the way it did, I can also honestly say that I haven't seen my mother this excited about her future in years...she has already sold the house and is steadfast in her decision to move out to Ojai, California with my sister and eventually, me. In my heart I know she has always dreamed of moving to the west coast. 

As for the fundraiser itself, I honestly didn't make as much money as I had hoped for them, but I still have tons of handmade items left that will eventually be sold at other upcoming venues. So, when all was said and done, we made a whooping $655.00, and in my mind...that's a pretty good start : )

Here is a slide show of the event and some of the products we made for the fundraiser:







It would have been impossible to pull something like this off by myself, so I kindly like to take a moment to thank the people who made this event possible:

Kaitlyn Orchanian is an amazing instructor and marketing director at the Bikram Yorktown yoga studio, and is the person I initially contacted to see if "Inanna House" could be part of the studio's Community Karma weekly donation classes designated for non-profit organizations. It is because of her that this event was even remotely possible.

Jane Kartsch is the owner of both the Bikram Yorktown Studio and the Bikram Bronx Studio. I hadn't realized that both studios were participating in the donation classes for Inanna House, and was overjoyed to learn that $350 was donated from these classes alone. Thank You Jane! xo

There isn't enough I could possibly say to Tracy and Tony Mosca (my Aunt and Uncle) for all they have done for me these past months...I wouldn't even know where to begin! 
They have not only given me a safe, peaceful space to heal, but have also supported my fundraising efforts, and amazingly donated tons of supplies for creating jewelry that has been left over from their own six-year, $61,000 worth of fundraising efforts in Yorktown, NY's Relay For Life for the American Cancer Society. This year, on June 8, I'm honored to be joining in on their team and plan on donating 50% of all items sold to Relay, and the rest will go to Inanna House...now, that's what I call a win/win situation : )

Lauren Bova and I have known each other since Grade School. In fact, we were inseparable our Senior Year, and even then I was truly astonished of her unique, artistically funky and creative ways. Her re-entrance into my life has truly been a gift, and I would say that she has been a great muse and teacher to me in my own creative efforts. 


Her talents to create fashion mixed with a deep passion for everything "Green", and an ability to take something old and transform it into something unbelievable and new is entirely uncanny. At the moment, her products such as handmade jewelry, rugs, scarfs, hats, crocheted purses, satchels, and pocketbooks are exclusively sold at Salon Elle in Armonk, NY, but she plans on supplementing this with an upcoming Etsy Shop called Bovella. Look for it in the future and be amazed...here's a taste of what you'll find: 

I'd also like to thank Lydia Cassia, owner of Salon Elle Hair Artistry for lending me ALL the supplies, gift boxes, and wraps, needed to present the products sold at the fundraiser. I literally think she saved me a small fortune by doing so! Thank You Lydia!

When I told my Mother that my "Dead Sea Salt Scrubs" HAD to be organic, I don't think she envisioned spending hours of her time grating two bags of limes so that I could add real lime peel to the concoction, but she did it! She also managed to help set up the event, which meant putting up with my wretchedly incessant OCD remarks about how EXACTLY things should be placed and where. And, she did all of this during one of the most trying times of her life with as much grace as I have ever seen. So, of course, my final BIG thanks goes out to my Mother. I love you! xoxo 




Much Love and Many Blessings,
Sarah

Crafting The Day Away

Many of you may have noticed that my posts have been scarce this past month. (So sorry bout that...) What I've come to realize though is that energy is a Lymie's most precious commodity, and when you don't have a lot of it, multi-tasking is simply impossible. 


Happily, I can say that I'm not pulling a "disappearing act" this time, but am slowly forging my way towards May, filling my days with crafting projects. Why? Because the month of May is "Lyme Disease Awareness Month" and I've become determined to raise as much money as possible for Inanna House . Lol - I've written about this amazing healing center manifesting its way into reality for months now so I doubt any of you have no idea what I am referring to, but if you don't, please click on the "Inanna House" link above to read more about it. 


I would sincerely like to thank Katie, Jane and Bikram Yoga Yorktown for designating this May's monthly donation classes for the benefit of Inanna House, and for allowing me to set up a table where all the goods - like the decorative votive candles pictured above can be sold to benefit the House as well. 


It does take a LOT of time and energy to create these items, so I'm planning ahead and starting early! (super smart idea : ) 


The best part is that it hasn't cost me a cent! These are things I just happen to have stored around the house or are things that friends and family have donated for the cause. Pretty cool, huh?


Even though it may take me longer than the average person to pull this together, it is SO good to know that I CAN do something to help - Inanna House is a place that I've, at times, literally cried myself to sleep wishing such a space existed for me to go to and heal. How could I not help create it??


So...if you were wondering why I fell off the radar, well...now you know : )


Many Blessings,
Sarah

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...

Welcome to my "Slice of Lyme"

Several times I’ve been asked to write a detailed account of my life with Lyme, but have always felt a kind of irony in doing so, as I don’t even know if there are words that can capture such an experience… Recently however, I've decided to take on this rather challenging task and promise to do my best - with the hopes that from it you will understand the unique circumstance I, and thousands of others like me are in. I'd like to take this opportunity to not only tell my story, but to offer support, love, and helpful ideas for my fellow "Lymies". I've found that this is often an illness that precipitates seclusion and reclusive behavior (and for good reason) - which is unfortunate and, through this media, is something that I'd like to help remedy if at all possible. Nothing like a good "community" feel - right? The other intended purposes of this blog is to hopefully do the following:
• 1. Raise awareness about the devastating affects of Late Stage Lyme Disease and their Co-Infections.
• 2. Provide information about the disease that will help both patients and their often bewildered caretakers. There will be support links, research links, healing ideas, recipes and meditations to practice -- and if all else fails - a page whose sole purpose is to make you LAUGH (for those really, really bad days : )
• 3. Share my experiences with this illness in hopes that it will help people who aren't affected by this disease understand what an extremely difficult climate it is to be in, and why so many people just aren't getting better. For those that DO have Lyme, I pray that at least some of the stories I have to tell will provide relief in knowing that you are not the only one going through this!
• 4. To generate much needed income for necessary medical treatments, not only for myself, but for others like me who simply don't have the means. There are several ways to do this, through online donations, by clicking on those damn "Adsense" links (an unfortunate necessity), through "Gratitude Paintings" (more on this later), or by being sponsored by a third party. Um...at this time I honestly don't know what that means, but I'm sure I'll find out (lol).
• 5. To give people like me HOPE! Such a beautiful, and empowering thing...

Before I finish my very first post, I'd like to point out that some of the things I will be telling you may seem contrary to popular belief, and in some instances downright blasphemous to the medical community. My only response to this well-known controversy is to simply say that I agree. There is a big conflict here and it saddens me.

With all of the respect I hold for Western Medicine, admiring and acknowledging leaps made and boundaries crossed over the past hundred years, I cannot put aside my visceral experience of this illness no matter how much I would like to.

Anyone can read something and understand it, but experiencing that something leads beyond a simple understanding to a complete and cemented knowing of it that cannot and will not be shaken from me.

Finally, I'd like to tell you that you are about to follow a 9 year story still in the making, chock filled with every kind of theatrical element invented, and I do intend to take a "No Holds Bar" approach to it, so sit back, relax and enjoy the ride!

Sarah