Shadow Fancy
02-08-2013, 11:15 AM
I recently learned that a fellow artist, who has contributed much to the corseting community was finally diagnosed with advanced neurological lyme disease.
Her name is Sidney Eileen. She may not be part of the mermaiding community, but she is an artist and inspiration. She has brought much into the corseting world. Here is her story as on the indegogo fund raising to help raise the money for her treatments-
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 (http://sidneyeileen.com/portfolios/corsetry/), 1 surtout, and a wedding gown (http://sidneyeileen.com/portfolios/costume/punk-wedding/); wrote 12 tutorials and articles (http://sidneyeileen.com/tutorials/sewing/) 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 (http://lymedisease.org/activism/idsa-protest-why.html) on LymeDisease.org (http://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 (http://www.lymebook.com/top10forms) 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 (http://ocimc.com/), 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.
You might be asking WHY she needs the money to pay for the treatments. Sadly, Medicaid and disability does not cover lyme disease. Sidney shared in an update why
Some of you are already asking about why I’m not on medicaid or covered by disability, and really, I should be, but like most patients with advanced lyme disease, I am not. I am making efforts to gain coverage, but the odds of doing so are poor at best. The politics surrounding lyme disease and the guidelines used by the IDSA and the CDC mean that medical coverage is routinely denied to sufferers of advanced or chronic lyme, and disability is almost never granted despite the very real disabilities that occur among sufferers.
The important points about the controversy and the problems with the guidelines are explained by the experts at LymeDisease.org better than I ever could, so please go read their brief page Why We Protest Against The IDSA (http://lymedisease.org/activism/idsa-protest-why.html), and while you are there, I’d be grateful if you’d take a couple moments to sign their petition requesting that the guidelines be changed to reflect real science.
The controversy pages (there are lots, if you just plug “lyme controversy” into google) usually refer to “chronic” lyme disease. I currently have advanced lyme disease. Chronic lyme disease is when a person has been treated for lyme, but the infection remains and there is a relapse of symptoms after treatment, creating further permanent damage and requiring another round of antibiotic treatment. I don’t want to end up with chronic lyme, and I’d much rather just stay on the antibiotics long enough to take care of the infection with the first round of treatments, even if the treatment time is very extended.
If you want further proof of the lack of medical coverage for lyme disease, plug “lyme cost” into Google and see what you get. It’s the rare lucky soul who is covered for full treatment, not the norm.
I apologize for the long read, but I needed to provide pertinent information for an announcement I made yesterday on the Shadow Fancy facebook page. I also wanted to make the announcement here as well.
For the next 60 days, ALL profit from tails, accessories, and tops bought from will be going towards this fund raiser to help Sidney get the treatments she needs. We will also be holding several auctions to sell pre-made items over the next couple weeks. And again, all proceeds will be going towards an anonymous donation to help Sidney.
If you can't afford a tail, but still want to help you can find the fund raiser HERE (http://www.indiegogo.com/projects/help-sidney-eileen-defeat-the-dread-lyme?c=activity). And you will also be able to read the entire story for yourself, and read the updates as well.
The entire corset community is coming together to help her. All mermaids are artists in their own way, artists need to stick together and help each other out.
Her name is Sidney Eileen. She may not be part of the mermaiding community, but she is an artist and inspiration. She has brought much into the corseting world. Here is her story as on the indegogo fund raising to help raise the money for her treatments-
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 (http://sidneyeileen.com/portfolios/corsetry/), 1 surtout, and a wedding gown (http://sidneyeileen.com/portfolios/costume/punk-wedding/); wrote 12 tutorials and articles (http://sidneyeileen.com/tutorials/sewing/) 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 (http://lymedisease.org/activism/idsa-protest-why.html) on LymeDisease.org (http://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 (http://www.lymebook.com/top10forms) 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 (http://ocimc.com/), 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.
You might be asking WHY she needs the money to pay for the treatments. Sadly, Medicaid and disability does not cover lyme disease. Sidney shared in an update why
Some of you are already asking about why I’m not on medicaid or covered by disability, and really, I should be, but like most patients with advanced lyme disease, I am not. I am making efforts to gain coverage, but the odds of doing so are poor at best. The politics surrounding lyme disease and the guidelines used by the IDSA and the CDC mean that medical coverage is routinely denied to sufferers of advanced or chronic lyme, and disability is almost never granted despite the very real disabilities that occur among sufferers.
The important points about the controversy and the problems with the guidelines are explained by the experts at LymeDisease.org better than I ever could, so please go read their brief page Why We Protest Against The IDSA (http://lymedisease.org/activism/idsa-protest-why.html), and while you are there, I’d be grateful if you’d take a couple moments to sign their petition requesting that the guidelines be changed to reflect real science.
The controversy pages (there are lots, if you just plug “lyme controversy” into google) usually refer to “chronic” lyme disease. I currently have advanced lyme disease. Chronic lyme disease is when a person has been treated for lyme, but the infection remains and there is a relapse of symptoms after treatment, creating further permanent damage and requiring another round of antibiotic treatment. I don’t want to end up with chronic lyme, and I’d much rather just stay on the antibiotics long enough to take care of the infection with the first round of treatments, even if the treatment time is very extended.
If you want further proof of the lack of medical coverage for lyme disease, plug “lyme cost” into Google and see what you get. It’s the rare lucky soul who is covered for full treatment, not the norm.
I apologize for the long read, but I needed to provide pertinent information for an announcement I made yesterday on the Shadow Fancy facebook page. I also wanted to make the announcement here as well.
For the next 60 days, ALL profit from tails, accessories, and tops bought from will be going towards this fund raiser to help Sidney get the treatments she needs. We will also be holding several auctions to sell pre-made items over the next couple weeks. And again, all proceeds will be going towards an anonymous donation to help Sidney.
If you can't afford a tail, but still want to help you can find the fund raiser HERE (http://www.indiegogo.com/projects/help-sidney-eileen-defeat-the-dread-lyme?c=activity). And you will also be able to read the entire story for yourself, and read the updates as well.
The entire corset community is coming together to help her. All mermaids are artists in their own way, artists need to stick together and help each other out.