A Few Words from Lucy
Please note that if the above video isn't working, you may watch it here: http://youtu.be/iB4X3fgFsao
My name is Lucy. My Youtube channel is now home to the largest and most comprehensive collection of educational corset-related videos on the internet. But before I had made my very first video, Sidney Eileen showed me incredible kindness, patience and encouragement early on in my journey as an amateur corsetiere. More importantly, Sidney and I share a philosophy that everyone should be able to experience the joy of creativity and expression, and that basic art skills are able to be shared and nurtured without fear of competition. If it were not for Sidney's encouragement, I might not have been inspired to become an online teacher for others and my channel as we know it may not exist today.
When I learned about Sidney’s health struggles and diagnosis with advanced neurological lyme disease, I reached out and offered to launch this campaign in her behalf. Sidney has been an incredible asset to the corset making community; the least that can be done is to help Sidney return to health, so that our friend and teacher will be given the chance to enjoy life again, and to continue sharing her beautiful work with the world.
If you are an artist, corset enthusiast or seamstress and have ever appreciated the information provided on my channel or Sidney's site, I ask you to consider “paying it forward” and sparing what you can afford to this campaign. Don’t feel that any donation will be too small; if each of my subscribers contributed only $1, we would immediately reach our goal.
I, Sidney Eileen, Need Your Help
Without your help, I have no financial means of receiving the treatment I so desperately need.
I am a self-taught artist, seamstress, and craftswoman, specializing in realistic artwork, minimalist artwork, Celtic knotwork, corsetry, and costuming. I have a passion for unique and custom creations, a passion for learning, and a passion for passing on what I learn. Unfortunately, advanced neurological lyme disease has had a tremendous negative impact on my life, and my productivity has gone further and further downhill until at this point I only finished two corsets, one vest, and one tutorial in all of 2012. By comparison, in 2010 I drafted and created 16 corsets, 1 surtout, and a wedding gown; wrote 12 tutorials and articles of various lengths, including most of the longer tutorials on my web site; completely rebuilt my web site TWICE, once at the beginning of the year (ZenPhoto), and again at the end of the year (WordPress, which I still use); and also organized and put on workshops. In 2011 my symptoms reached the point of causing disability, and my productivity went steadily downhill. The longer I go without treatment, the more debilitating my condition will become, especially since it is now affecting my coordination and cognitive functions, and periodically causing seizures.
But with long-term treatment and a lot of help I plan to fight back and regain my life.
I have been ill for six years, disabled for two, and have only now finally received a doctor's diagnosis. The path to that diagnosis has been a constant battle with the health care system in the US, its reluctance to treat those who don’t have financial resources to bleed, and its reluctance to acknowledge that advanced and chronic lyme disease is real and debilitating, and difficult to treat. I have had to research my own illness, research to find a doctor competent to diagnose and treat that illness, and then pay out of pocket to see that doctor and receive the medical care I so desperately need.
I have advanced neurological lyme disease. As a result of that illness I have fatigue and malaise, anxiety, depression, constipation, sleep disturbance, night sweats, joint pain, generalized pain, neuropathy, sensory disorder, polydipsia, polyuria, muscle spasm, memory disturbance, visual disturbance, cognitive problems, adrenal insufficiency, paraesthesias, dysautonomia, itching, and flushing. While the progression of the disease was rather slow the first four years, two years ago the increase in symptoms became like a slippery slope, and the past nine months have seemed like a head-over-heels tumble, with a whole new set of symptoms popping up every month or two and adding to my misery and further reducing my ability to function in any way, shape, or form. My daily life is not unlike having very early stage alzheimers, mild eplilepsy, fibromialgia, Chronic Fatigue Syndrome, hives, and a bit of Crone’s Disease, all at the same time, with the expectation that all of them will continue to get worse.
As of December 31, 2012, I shut down my art and sewing business as a direct result of my illness. Some of the rewards offered here are items I still had in stock when I closed business, which is not very many due to my decreasing productivity. It is my sincere hope that with treatment I will eventually be able to re-open business, and even while I am ill I will continue to write and create as much as my illness will allow.
If you are interested in reading about lyme disease, the signs and symptoms, stages and treatment, I recommend starting with ILADS ( http://www.ilads.org/ ). I grew up in an area with lyme disease, was warned that it was “bad” (seriously, I was never told more than that), and was told specifically that if I got a tick bite, I should watch for the “bulls-eye rash”. I was shown photos and told the rash would always follow a tick bite, be pale white with a bright red ring, and swelling was never mentioned. After hiking at Lake Bariessa in 2007, I had a swollen bite come up on my leg, bright pink, with a red ring. I never saw the tick, and am prone to swollen allergic reactions to bug bites, so at the time the thought of lyme never entered my mind. I only remember the bite because it stayed for about 3-4 weeks before finally going away. I didn’t have health insurance at the time, but even if I had, I must admit I probably would not have seen the doctor for a swollen bug bite. I'm lucky I had the bulls-eye rash, and that I remember the bite, because it's as good an indication as there is for lyme. There is NO reliable test for the illness, which is a large part of the reason it so often goes undiagnosed, and why I was unable to get a diagnosis in the spring of 2012 when a friend realized I might have lyme.
Why Do You Need So Much Money?
We actually need a lot more than the goal. If we reach goal, it will pay for roughly 6 months of just the IV antibiotic treatment. That doesn't include any of the supporting medications, monthly blood tests, doctor visits, or any miscellaneous expenses related to Sidney's illness.
None of Sidney's medical expenses are covered by insurance.
The politics of controversy around advanced lyme disease are a very difficult barrier to receiving adequate medical care for the treatment of advanced lyme. "THE CURRENT IDSA LYME GUIDELINES MISREPRESENT SCIENCE AND RESTRICT ACCESS TO CARE." - from Why We Protest Against The IDSA on LymeDisease.org.
Sidney has not worked reliably or had much income in more than two years, and even before that she definitely qualified as a “starving artist”. She has not worked for an employer since September of 2011. At this point she is unable to work at all, even on her own business.
Sidney is not married, and lives with a very good friend who is a PhD candidate at UNLV. That friend is supporting both of them, and barely makes ends meet on essential living expenses.
There is only one sure treatment for advanced lyme, and that is intravenous antibiotics for as many months as it takes to kill the infection. There are a couple reasons for the IV antibiotics. The bacteria mostly sits in parts of the body with very poor circulation, like deep in joints, and the brain and nervous system, so oral antibiotics are unlikely to reach the actual infection in appreciable quantities. Lyme bacteria also cysts up in a very similar manner to tuberculosis, so you have to keep the body inundated until they’re all dead. Once the disease has reached an advanced stage, oral antibiotics will completely destroy the digestive system long before the lyme is dead. That means once Sidney starts treatment, she can expect to be on intravenous antibiotics continually for 6-18 months. The time frame varies because it's impossible to predict how long it will take to be cured of the infection. The monthly out-of-pocket expense of the intravenous antibiotics and related medical supplies is $2500-$3500, and that's if Sidney does the treatment at home for herself. Receiving such treatment in a hospital or clinic can cost upwards of $10,000 each month. For obvious reasons, she's choosing to do the treatment at home.
IV antibiotics are, on their own, a risky endeavor, especially when administered long term. To help the body cope with the antibiotics Sidney needs to get her digestive system functioning again. It's been hit hard by the lyme and is a complete and total wreck. She's not on any prescription medicines, but is on large quantities of about a dozen different over the counter medications and pharmaceutical-grade supplements, at a monthly expense of about $300. Of course, this is also in conjunction with a specialized diet.
The entire time Sidney is being treated by Dr. Chitra Bhakta, she will require monthly blood tests and doctor visits to monitor her progress and ensure there are no complications from the antibiotics. Another added expense is the travel to see her doctor. Sidney is currently living in Las Vegas, but there are NO doctors in her area who specialize in lyme. That means she must travel all the way to Santa Ana, a roughly 5 hour drive each way, and most visits she will likely need to stay in a hotel the night before or after the appointment. That means the expected monthly cost of the supplements and medications, doctor visits, blood tests, and travel expenses is about $1000.
At the present time, Sidney is hoping to be ready to begin the antibiotic treatment in May of 2013.
Breakdown
Monthly Medical Costs Pre-Antibiotics:
$300 (approx) supplements and medications
$300 (approx) monthly blood tests
$200 (approx) doctor visit
$200 (approx) travel expenses
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$1000 total
x3 (February, March, April)
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$3000 approximate expenses before starting IV antibiotic treatment
Monthly Medical Costs During Antibiotic Treatment:
$1000 (approx) medications, tests, doctor, and travel
$2500-$3500 IV antibiotic cost (medicine, and all medical supplies needed to do it at home)
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$3500-$4500 total monthly cost for antibiotic treatment
On the Short Treatment End:
$3000 (pre-antibiotic expenses)
$3500-$4500 total monthly cost for antibiotic treatment
x6 (May, June, July, August, September, October)
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$24,000-$30,000 total cost for treatment
On the Long Treatment End:
$3000 (pre-antibiotic expenses)
$3500-$4500 total monthly cost for antibiotic treatment
x18 (May, June, July, August, September, October, November, December, 2014 January, February, March, April, May, June, July, August, September, October)
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$66,000-$84,000 total cost for treatment
What That Means for Total Projected Costs:
The final costs for all Sidney's medical treatment for advanced lyme disease will work out to somewhere between $24,000 and $84,000. That's a HUGE range, but it all depends upon how long the treatment takes, and there is no way to predict that. If Sidney's lucky, it will work out towards the less expensive end.
Treatment won't end with the antibiotics, but at this time it's even harder to predict how much that will cost, or how long it will go on. Whatever it is, it won't be nearly the monthly expense of the antibiotics.
The Impact
Your contribution WILL help Sidney receive the treatment she needs. Of course we hope the response will be overwhelming and the funds raised will exceed goal, but just in case, this campaign is set up with Variable Funding, so even if we don't meet goal Sidney will still receive the aid you send, and you WILL receive the perk you earned with your contribution. Every dollar counts and is greatly appreciated.
EVERY.........SINGLE........DOLLAR.........COUNTS
Throughout treatment Sidney will post updates letting everyone know how she is doing and exactly how your contribution dollars are being spent. There will be an update at least once each month following doctor visits, and occasionally at other times as well. You can also follow her progress (minus most of the financial breakdown) on her Blog and FaceBook page.
The ultimate goal, of course, is to cure Sidney of the Dread Lyme. It is likely that some of the symptoms (like joint pain) will be chronic due to permanent damage, but by killing the disease it IS certain that the progression of the disease will cease, and she will regain much of the quality of life she has lost.
Other Ways You Can Help
If you can’t contribute, that doesn’t mean you can’t help:
- Get the word out and make some noise! Post about Sidney's illness and campaign to any of your homes online, or share it with your friends and family.
- Use the Indiegogo share tools (at the top of the page)!
- Share the YouTube video explaining the campaign!
And that’s all there is to it.
The Perks
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Thank You!
Donation Amount: Any
We appreciate every dollar, and to show that, every donation made that is not anonymous will receive a heartfelt Thank You on Twitter and FaceBook. If you'd like us to thank you by your Twitter name or FaceBook page, just tell us when you submit your contribution!
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Thank You Card From Sidney!
Donation Amount: $10 and Up
Sidney is grateful for every donation, because each and every donation brings her a step closer to wellness.
For every donation over $10, she will send a personal, hand-written thank you card.
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Four Blank Note Cards by Sidney Eileen
Donation Amount: $20
Thank you for your generosity!
You will receive a personal thank-you card signed by Sidney, and four individually packaged blank Celtic knot note cards designed by Sidney.
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A Dozen Blank Note Cards
Donation Amount: $35
Thank you for your generosity!
You will receive a personal thank-you card signed by Sidney, and a box of 12 blank Celtic knot note cards designed by Sidney.
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Thank You Video from Lucy!
Donation Amount: $50 and Up
You are making a big difference. Your donation alone is paying for a couple bottles of the supplements Sidney needs on a daily basis.
You'll receive a personal thank-you video from Lucy, emailed directly to you. Also, you'll receive a personal hand-written thank-you card from Sidney.
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Original Minimalist Painting by Sidney Eileen!
Donation Amount: $100
Your generous donation will make a substantial contribution to travel expenses and hotel for one month's visit to the doctor.
For your contribution, you will receive an original small minimalist painting by Sidney Eileen of any animal you choose. You will also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
Sidney's Minimalist Art Portfolio may be found on her web site.
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Limited Edition Signed and Numbered Giclee Print (animal subject)!
Donation Amount: $150
Your donation will pay half the cost of one of Sidney's monthly blood tests.
As a thank you, you will receive a random animal subject signed and number limited edition giclee print from Sidney Eileen. You will also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
Sidney's Animal Art Portfolio may be found on her web site.
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Limited Edition Signed and Numbered Giclee Print (sepia toned steampunk theme)!
Donation Amount: $150
Your donation will pay half the cost of one of Sidney's monthly doctor visits.
As a thank you, you will receive a random sepia toned signed and number limited edition giclee print from Sidney Eileen. You will also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
Sidney's Steampunk Themed Art Porfolio may be found on her web site.
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Custom Corset Pattern by Lucy!
Donation Amount: $250
Your donation will make a substantial contribution to the monthly cost of Sidney's antibiotic treatment.
You will receive a custom corset pattern drafted to your measurements (overbust or underbust), made by Lucy. (Will be folded in the mail) You will also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
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Custom Underbust Corset by Lucy!
Donation Amount: $750
We can't thank you enough. Your donation alone will cover the majority of Sidney's montly medical expenses outside of the antibiotic treatment.
You will receive a custom-fit, non-embellished underbust corset in twill or satin, in your color choice, created by Lucy. Also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
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![Versatile Collage Versatile Collage]()
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Standard-size overbust or underbust from Versatile Corsets!
Donation Amount: $500
We can't thank you enough. For your generous donation you will receive a standard-size overbust or underbust from Versatile Corsets, in your choice of size, fabric and style.
You will also receive a personal thank you card from Sidney and a personal thank you video from Lucy.
Many thanks to Nancy Lynn and all those at Versatile Corsets for this wonderful perk. To see all the available styles at Versatile Corsets, click here.
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Original Animal Drawing by Sidney Eileen!
Donation Amount: $750
Mere thanks are not adequate to express our gratitude. Your donation will make a very substatial contribution to the monthly cost of Sidney's antibiotic treatment.
You will randomly receive an original animal-subject colored pencil drawing by Sidney Eileen with a certificate of authenticity, plus a personal thank you card from Sidney, plus a personal thank you video from Lucy.
Sidney's Animal Art Portfolio may be found on her web site.
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Custom Ink Portrait by Sidney Eileen!
Donation Amount: $3000
There are no words to express our gratitude for your generosity. Your donation is enough to pay for an entire month's antibiotic treatment, all on its own.
To show her gratitude for your generous donation, Sidney would like to make a custom monochromatic ink painting portrait just for you. It can be of a person or a pet, in costume or just normal clothes. If you want, she will create a costume and environment just for the portrait.
She will do her best to make the painting during treatment, but it is possible that she will not be able to complete it until after treatment is finished.
Most of Sidney's ink work can be found in the Steampunk Themed Art Porfolio on her web site.
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