Support Jimmi on her 7th surgery
Donation protected
UPDATE: July 31
Jimmi’s been home for five days now, after five days in the hospital, following her 7-hour surgery. She did get two colon resections along with the extensive endometriosis excision, but her surgeons determined that an ileostomy was not required now. Jimmi is in a great deal of pain and can’t do much yet, with hives and a rash on top of the surgical pain (from allergic reaction to the adhesive used to close her wounds), but i and her mom Nancy are here to support her. Everyone’s support, lifts her spirit.
We have raised one half of the goal here on the campaign web page. She also received one generous contribution off-site that puts her at 3/4 of our goal. We are making one last outreach effort. If there is anyone in your world you can forward the campaign to, who might be interested and able to join in, it would be so appreciated for her long recovery ahead.
Blessings to all,
webster
THE BASICS
Jimmi faces major surgery on July 20th, to treat her stage 4 endometriosis in the only way modern medical science knows: Cut as much of it out of her body as the surgeon can find. The operation will include endometriosis excision from the bladder, diaphragm, small intestine, colon, rectum, and ligaments; removal of adhesions; removal of growths from her retained ovary; a colon resection; and a potentially reversible ileostomy which will require a follow-up surgery. Surgery to remove a large diverticulum from her stomach may also be needed.
Surgery does not "cure" this disease, but it offers the only relief available. This will be Jimmi's 7th excision surgery to treat endometriosis. She is always in serious pain, and often in extreme pain. She is not yet 40 years old.
WHO IS JIMMI?
Jimmi is an artist, writer and musician (visit her Patreon, her Caring Bridge, and view her new song):
Brilliant, hard-working, creative and compassionate, Jimmi is an active member of online communities where people with endometriosis find and support each other, sharing experiences, research and information that is often far beyond the level of knowledge the average doctor has. Jimmi has done many hours of research to be able to educate herself, other patients, and doctors to fight for more equitable coverage and treatment. Her hard-earned expertise is equivalent to an advanced University degree in advocating for women, patients and herself toward institutions, gatekeepers and practitioners.
Jimmi is a warrior for patient empowerment and a culture of respect against the institutional power and humiliations of the medical-industrial complex. I want her star to shine as brightly as possible, for herself and for others.
WHAT JIMMI NEEDS
Our $20,000 goal for this campaign will not fully cover the cost of these surgeries, let alone other medical and related expenses, and let alone rent and utilities during her months of recovery. Her partner webster will also reduce his work and income in order to support Jimmi's recovery, unlike past surgeries when (thanks to people coming to Seattle to provide support) he could work more. This time, due to Jimmi's compromised immune system, and a quarantine period the hospitals require amid a global pandemic, we will not have an on-site support team.
HOW YOU CAN HELP
Contributing to this campaign, and promoting it to your personal network, are the best ways for friends and family to help Jimmi.
Jimmi's story is just one example of why medical fundraisers are the largest category of GoFundMe campaigns in the USA. No one wants to ask others to help, but people are driven into impossible situations that can only be addressed by active communities of support.
We are not rich, and we are not miracle workers. If you are able, please contribute, and share with people you know, adding a personal note about how you know Jimmi. She needs help to pay for this surgery, to get through the long recovery, to survive and to thrive. Please join Jimmi's community of support!
ADDITIONAL INFORMATION
Jimmi has found a surgeon at an in-state surgical center who is recognized as one of the top endometriosis excision specialists in the USA. This surgeon does not accept Medicaid or commercial insurance, and the hospital does not accept Medicaid, so Jimmi had to drop her coverage and pay for private insurance.
But due to:
* Outdated information posted on the hospital web site;
* Incorrect information from a hospital staff person;
* Advice from an insurance “broker” who is there to help patients navigate the insurance marketplace under the Affordable Care Act; and
* An ACA prohibition against changing insurance plans outside of the designated “open enrollment” period;
Jimmi's insurance plan does not cover the excision specialist, and does not cover the affiliated hospital.
The surgery cannot be postponed. Because of the structural dysfunction of the US health care and health insurance systems, Jimmi will pay for these surgeries and hospital costs out of pocket.
PREVALENCE, DIAGNOSIS, ACCESS and PRIVILEGE
Millions upon millions of people have endometriosis. One out of every ten people, or one out of every twenty, according to estimates i've read recently. It is hard to get an accurate estimate due to the widespread lack of diagnosis, but endo is as common or more common than diabetes, with massive economic costs on top of the personal costs, but with far less recognition, research, or funding.
The undiagnosed pain of endo has been pathologized as anxiety or hypochondria, or completely dismissed. The average time between first complaint and accurate diagnosis has been estimated at ten years. Many never receive a diagnosis and their endo is never recognized, or only recognized upon an autopsy. Many, many people suffering with endo are gaslit and told that the pain is in their heads. Even upon diagnosis, many doctors in the past and some still today, inaccurately believe that pregnancy will cure or alleviate endo.
We are painfully aware that it took Jimmi years, working through a lot of gaslighting and ignorance, to receive an accurate diagnosis. It then took more years for her to find knowledgeable and open-minded doctors who offer respect, and care, and treatment. We also know that as a white woman with an accurate diagnosis, Jimmi is privileged to be receiving the treatment she now is getting, while millions of people with endo live and die without diagnosis or treatment.
On top of other falsehoods about endometriosis and pain, it has been claimed that Black women rarely get endometriosis while supposedly also being impervious to pain. Endometriosis has also been found in cis-men, in transgender people and in intersex people. It is not solely a women's disease, and not solely a reproductive system disease, but a full-body disease. Diagnosis is a privilege. We need more and better advocates for care, and anyone can be an advocate.
STRONGER TOGETHER
There is also no institutional support in the USA for the long recovery that follows these surgeries, during which Jimmi's capacity to work has been greatly diminished, and career pathways have been foreclosed. Twice she has applied for disability support, and twice been turned down, because by institutional definition — despite the experience of so many who live and die with this disease — endometriosis is deemed "not fatal" and "not disabling." We actually have a letter stating that if her disease kills her, then she will be eligible for disability.
This funding campaign cannot address the systemic problems of health care, health insurance or disability in the USA. But we can help each other face difficult situations when our systems fail us. Let's pull together and help Jimmi come out of this stronger than ever, making art and being the beautiful warrior that she is.
With much love,
webster
Jimmi’s been home for five days now, after five days in the hospital, following her 7-hour surgery. She did get two colon resections along with the extensive endometriosis excision, but her surgeons determined that an ileostomy was not required now. Jimmi is in a great deal of pain and can’t do much yet, with hives and a rash on top of the surgical pain (from allergic reaction to the adhesive used to close her wounds), but i and her mom Nancy are here to support her. Everyone’s support, lifts her spirit.
We have raised one half of the goal here on the campaign web page. She also received one generous contribution off-site that puts her at 3/4 of our goal. We are making one last outreach effort. If there is anyone in your world you can forward the campaign to, who might be interested and able to join in, it would be so appreciated for her long recovery ahead.
Blessings to all,
webster
THE BASICS
Jimmi faces major surgery on July 20th, to treat her stage 4 endometriosis in the only way modern medical science knows: Cut as much of it out of her body as the surgeon can find. The operation will include endometriosis excision from the bladder, diaphragm, small intestine, colon, rectum, and ligaments; removal of adhesions; removal of growths from her retained ovary; a colon resection; and a potentially reversible ileostomy which will require a follow-up surgery. Surgery to remove a large diverticulum from her stomach may also be needed.
Surgery does not "cure" this disease, but it offers the only relief available. This will be Jimmi's 7th excision surgery to treat endometriosis. She is always in serious pain, and often in extreme pain. She is not yet 40 years old.
WHO IS JIMMI?
Jimmi is an artist, writer and musician (visit her Patreon, her Caring Bridge, and view her new song):
Brilliant, hard-working, creative and compassionate, Jimmi is an active member of online communities where people with endometriosis find and support each other, sharing experiences, research and information that is often far beyond the level of knowledge the average doctor has. Jimmi has done many hours of research to be able to educate herself, other patients, and doctors to fight for more equitable coverage and treatment. Her hard-earned expertise is equivalent to an advanced University degree in advocating for women, patients and herself toward institutions, gatekeepers and practitioners.
Jimmi is a warrior for patient empowerment and a culture of respect against the institutional power and humiliations of the medical-industrial complex. I want her star to shine as brightly as possible, for herself and for others.
WHAT JIMMI NEEDS
Our $20,000 goal for this campaign will not fully cover the cost of these surgeries, let alone other medical and related expenses, and let alone rent and utilities during her months of recovery. Her partner webster will also reduce his work and income in order to support Jimmi's recovery, unlike past surgeries when (thanks to people coming to Seattle to provide support) he could work more. This time, due to Jimmi's compromised immune system, and a quarantine period the hospitals require amid a global pandemic, we will not have an on-site support team.
HOW YOU CAN HELP
Contributing to this campaign, and promoting it to your personal network, are the best ways for friends and family to help Jimmi.
Jimmi's story is just one example of why medical fundraisers are the largest category of GoFundMe campaigns in the USA. No one wants to ask others to help, but people are driven into impossible situations that can only be addressed by active communities of support.
We are not rich, and we are not miracle workers. If you are able, please contribute, and share with people you know, adding a personal note about how you know Jimmi. She needs help to pay for this surgery, to get through the long recovery, to survive and to thrive. Please join Jimmi's community of support!
ADDITIONAL INFORMATION
Jimmi has found a surgeon at an in-state surgical center who is recognized as one of the top endometriosis excision specialists in the USA. This surgeon does not accept Medicaid or commercial insurance, and the hospital does not accept Medicaid, so Jimmi had to drop her coverage and pay for private insurance.
But due to:
* Outdated information posted on the hospital web site;
* Incorrect information from a hospital staff person;
* Advice from an insurance “broker” who is there to help patients navigate the insurance marketplace under the Affordable Care Act; and
* An ACA prohibition against changing insurance plans outside of the designated “open enrollment” period;
Jimmi's insurance plan does not cover the excision specialist, and does not cover the affiliated hospital.
The surgery cannot be postponed. Because of the structural dysfunction of the US health care and health insurance systems, Jimmi will pay for these surgeries and hospital costs out of pocket.
PREVALENCE, DIAGNOSIS, ACCESS and PRIVILEGE
Millions upon millions of people have endometriosis. One out of every ten people, or one out of every twenty, according to estimates i've read recently. It is hard to get an accurate estimate due to the widespread lack of diagnosis, but endo is as common or more common than diabetes, with massive economic costs on top of the personal costs, but with far less recognition, research, or funding.
The undiagnosed pain of endo has been pathologized as anxiety or hypochondria, or completely dismissed. The average time between first complaint and accurate diagnosis has been estimated at ten years. Many never receive a diagnosis and their endo is never recognized, or only recognized upon an autopsy. Many, many people suffering with endo are gaslit and told that the pain is in their heads. Even upon diagnosis, many doctors in the past and some still today, inaccurately believe that pregnancy will cure or alleviate endo.
We are painfully aware that it took Jimmi years, working through a lot of gaslighting and ignorance, to receive an accurate diagnosis. It then took more years for her to find knowledgeable and open-minded doctors who offer respect, and care, and treatment. We also know that as a white woman with an accurate diagnosis, Jimmi is privileged to be receiving the treatment she now is getting, while millions of people with endo live and die without diagnosis or treatment.
On top of other falsehoods about endometriosis and pain, it has been claimed that Black women rarely get endometriosis while supposedly also being impervious to pain. Endometriosis has also been found in cis-men, in transgender people and in intersex people. It is not solely a women's disease, and not solely a reproductive system disease, but a full-body disease. Diagnosis is a privilege. We need more and better advocates for care, and anyone can be an advocate.
STRONGER TOGETHER
There is also no institutional support in the USA for the long recovery that follows these surgeries, during which Jimmi's capacity to work has been greatly diminished, and career pathways have been foreclosed. Twice she has applied for disability support, and twice been turned down, because by institutional definition — despite the experience of so many who live and die with this disease — endometriosis is deemed "not fatal" and "not disabling." We actually have a letter stating that if her disease kills her, then she will be eligible for disability.
This funding campaign cannot address the systemic problems of health care, health insurance or disability in the USA. But we can help each other face difficult situations when our systems fail us. Let's pull together and help Jimmi come out of this stronger than ever, making art and being the beautiful warrior that she is.
With much love,
webster
Co-organizers (3)
Webster Walker
Organizer
Seattle, WA
Jimmi James
Beneficiary
Jesse Harold
Co-organizer
Nancy Johnson
Co-organizer