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sidneyeileen

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Starting Long-Term Antibiotics
This morning at 6:30 am, I took my first dose of antibiotics. It will be the first of three today. If all goes well, I will continue to take them on a schedule overseen by my doctor for the next six months. I will be taking monthly blood tests to ensure that the antibiotics themselves don't result in complications. Hopefully the anaplasma infection will be cleared up within that six months, and we won't need to extend the duration of the antibiotics.

So, herx reactions... Well, so far I'm in a damned good mood, and feeling mostly normal. I do have a cough now, and my nose is running a bit. I've also has a weird ringing and pressure in my left ear a couple times that threw my balance momentarily. I suppose just not enough of the buggers have died yet for me to be feeling it much. I'm sure that will change.

Oh, and as for side benefits, I'm keeping my fingers crossed that I won't have acne for the next several months.









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Help Me Defeat the Dread Lyme!

Lucy of Lucy's Corsetry is helping me with a crowdfunding campaign on Indiegogo to fund my treatment for advanced Lyme Disease.  Without help from people just like you, I won't be able to afford treatment, and there will be nothing to stop the progression of the disease.

Etsy Sellers for Sidney Eileen is an Etsy Team focused on helping raise funds for my lyme disease treatment.  It is open to all artists and artisans.  The only criteria for inclusion is that at least one item offered must donate at least part of the proceeds to the Indiegogo campaign.  So, if you are interested in buying something and knowing you are helping me get medical treatment, please check out the member shops.  If you would like to help, but don't have money to spend, please set up a donation item (or three :) ) in an Etsy shop and joining the team.

There's less than three weeks left on the Indiegogo campaign, and as of writing this journal we're at 55% percent funding.  That's a lot of funds still to raise, but with all the people coming together to help I still have hope that it will happen.

Thank you! <3








I Heart Tea Stamp by croaky Coffee Addict Stamp by poserfan Art Geek Stamp by xoxostudios I Support Animal Rights Stamp by AshlieNelson :thumb48208781: i love my pencil by lex-shadow Size Acceptance Stamp by Bountiful wolf stamp by war-armor Omnivore Stamp by Nestly :thumb78207617:

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Help Me Defeat the Dread Lyme!

Lucy of Lucy's Corsetry is helping me with a crowdfunding campaign on Indiegogo to fund my treatment for advanced Lyme Disease.  Without help from people just like you, I won't be able to afford treatment, and there will be nothing to stop the progression of the disease.  So please, if you can, chip in a little something, even if it's just one dollar.  If you can't, please take a moment to share the campaign with the people you know.

 

Our goal is $18,000, but 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 my illness.

None of my 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.

 

Some people have already asked 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, 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.








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I have been ill for six years, disabled for two, and have only now finally received a 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 my illness is real and debilitating.  No other country in the Western world would have forced me to go through all this hell.  In no other Western country would 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 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, adrenial insufficience, paraestherias, 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.

If you are interested in reading about lyme disease, the signs and symptoms, stages and treatment, I recommend starting with ILADS ( 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 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 a tick, and am prone to swollen allergic reactions to bug bites, so the thought of lyme never entered my mind.  I only remember it 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.

There is only one real 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 that hip that's been bugging me for five years, and the nervous system, so oral antibiotics are unlikely to reach the actual infection in appreciable quantities.  It 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 progressed to the point I have it, oral antibiotics will completely destroy the digestive system long before the lyme is dead.   That means once I start treatment, I can expect to be on intravenous antibiotics continually for 6-18 months, at a monthly out-of-pocket expense of $2500-$3500.  That officially makes paying for the treatment the most difficult part of the entire process.  I'm not in the least bit concerned about the negative effects of the antibiotic treatment itself, as they are all minor compared to the realities of living with my illness unchecked.

Before I can start the IV antibiotic treatment, I need to make sure the money will be there for as long as I need to be on the antibiotics, and I need to get my digestive system functioning again.  This is no small feat, as my digestive system is a complete and total wreck.  I also need to reduce as much strain as possible on my adrenal gland, which is having a very hard time coping with the illness.  I'm not on any prescription medicines, but I am starting on about a dozen different over the counter medications and pharmaceutical-grade supplements.  Over the next couple weeks I will be adding them one at a time until I am taking all of them every day, and hopefully the result will be some regularity to my bowels in the relatively near future.  The expected monthly cost of the supplements and medications, doctor visits, blood tests, and travel expenses is about $1000.

I'm also starting on a special amylose free diet to help with the gut and my adrenal gland.  Basically, I must avoid cow dairy (although goat and sheep is fine – yay!), gluten, sugars, soy products, and processed foods as much as possible.  I also need to try and eat small meals and snack frequently to help moderate my sugar levels.  It's basically like being both diabetic and gluten intolerant at the same time, with some dairy restrictions thrown in for spice.  That might sound awful, but if you think about it in a positive way, it's also very similar to the "Caveman Diet", and is also extremely similar to the kinds of food Diana and I eat anyway when she is sticking to her weight loss diet.  I just have to avoid a couple of things she doesn't, and I don't have to worry about fat intake beyond my own desire to not balloon in weight from lack of activity.  As it is, I've put on about ten pounds in the past two months and very few of my clothes are fitting.

I need to take some blood tests in the next month, but the next big step I will be taking is related to the fatigue and malaise diagnosis.  I will be going to the Workwell Foundation in Ripon, CA, where I can be objectively, quantitatively tested for Chronic Fatigue Syndrome.  This should provide the undeniable proof that I am disabled and unable to work, and I can begin the process of getting on disability so I have some sort of income coming in.  As an added bonus it means I will be visiting Cali, so hopefully I'll be able to see some of my friends in the Sacramento area.

As a result of my illness I am shutting down for business.  I kept trying for as long as I could manage it, but I am tired of disappointing my customers and myself.  I just can't do it, no matter how hard I try, and it's just adding to my stress.  Last year I only managed to make one corset and one vest.  That's it.  And it wasn't for lack of desire.  As for my artwork, on top of the exhaustion I now have mild seizures and tremors every day, which is in no way helpful for the precise kind of art I like doing.  From a business standpoint, most months I don't make money, so there's not enough income to warrant the stress.

I do have a few open projects which are partially or completely paid for, so I will be talking to those customers directly about how I will be proceeding.  It may take me a while longer, but I do want to finish them.  There are also a couple prospective projects I had been discussing with people, which will probably not happen.

On the bright side, if I don't have the looming stress of customer orders I'm not getting to, I am hopeful that when I have the energy and inclination I'll be better able to work on personal projects and tutorials.  I miss writing tutorials, and I have a lot of material just waiting to be written up.  I also have a lot of art projects bouncing around in my head waiting for the opportunity to be made real.  I was in business because I love sewing and art and wanted to be able to do them all the time, so I'm not going to stop just because I'm not able to do what is required for a functioning business.

It's going to be difficult, it's going to take a long time, and it's going to be expensive, but I am tremendously relieved to have a diagnosis and a plan of action.  It's very likely that some of the symptoms will never go away, that the damage caused by my illness is permanent, but I can live with that.  I want to stop the tumble down the slope, and reclaim as much of my life as possible.

As for the nitty-gritty, at the moment I have absolutely no means of paying for any of my own medical care.  Diana has been paying for all of our living expenses without my help for months, almost entirely with student loans.  She is also taking the brunt of the medical expenses.  My parents did kick in to help with the first doctor's appointment (many grateful thanks for that), but it's unlikely they will be able to help very much on a regular basis.  I will be getting on disability as quickly as possible, but I don't know how much income that will provide.  It's unlikely to be enough to pay for all my medical costs.  I also have the promise of help from a couple different friends (OMG, thank you from the bottom of my heart), and we certainly need it.  If you want to help, please send me a message.  If you have my PayPal address, please do not send me money there.  I don't want to complicate the process of shutting down my business.

If you have any questions, I will do my best to answer them.  I'm not concerned about medical privacy, so you may get more information than you actually wanted.  You have been warned.  ;)








I Heart Tea Stamp by croaky Coffee Addict Stamp by poserfan Art Geek Stamp by xoxostudios I Support Animal Rights Stamp by AshlieNelson :thumb48208781: i love my pencil by lex-shadow Size Acceptance Stamp by Bountiful wolf stamp by war-armor Omnivore Stamp by Nestly :thumb78207617:

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55% off everything in my store through 12/23/2012!



Correction: I posted originally that the sale was 50% off and free shipping.  As it turns out, storenvy will only allow one discount per order, so I cannot do both discounts at the same time.  Instead, the sale is 55% off, which should be fairly close to the shipping on most items, a little less on some, and quite a bit more on others.

I have set up a new shop at Storenvy!
Everything I have available, originals and limited edition giclee prints, may be purchased through that store.  If you've been thinking about buying a piece of my art, now's the perfect time.  If the art is a present, please buy early to be sure it will arrive in time for the holiday.

As an added bonus, your purchase will be helping to fund me seeing a competent doctor in January, and hopefully starting treatment for my illness.  I don't have medical insurance, and very limited ability to work due to disability, so finding a way to pay for a specialist and expensive treatment is daunting to say the least.  Every little bit helps, and some prints are as little as $20 with the sale.








I Heart Tea Stamp by croaky Coffee Addict Stamp by poserfan Art Geek Stamp by xoxostudios I Support Animal Rights Stamp by AshlieNelson :thumb48208781: i love my pencil by lex-shadow Size Acceptance Stamp by Bountiful wolf stamp by war-armor Omnivore Stamp by Nestly :thumb78207617:

Doctor Steel Stamp 1:  Cookies by Toy-Soldier-Enyo World Emperor by Toy-Soldier-Enyo Stamp: Abney Park by ArtByFlan

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Featured

Starting Long-Term Antibiotics by sidneyeileen, journal

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My Illness - Closing Business by sidneyeileen, journal

Holiday Sale on My Art (Correction) by sidneyeileen, journal