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sevenhelz at 10:29pm on 24/09/2011
sevenhelz at 10:29pm on 24/09/2011This page: http://www.latentexistence.me.uk/fight-for-healthcare/ has a video. This is a transcription.
Hey everybody this is Chelle, also known as the purplegimp, and this is episode 8 of my disability webvideo series. I'm filming this episode for healthcentral.com's "This is me; your healthcare journey" contest, and the winner gets $200 to donate to the charity of their choice. So I thank them for their interest and their support.
It's been a while since I've been here... a lot has happened in the last month, month and a half, since I filmed my last episode. As many of you know, I struggle with Sjogren's disease, lupus and rheumatoid arthritis. I also have permanent endometriosis and severe bowel adhesions.
The Sjogren's disease has caused extensive damage to my mouth, my teeth, and my upper and lower jaw, because it attacks the moisture-producing glands in your body - in my case, the saliva glands in my mouth - and without moisture, your teeth and your jaw cannot live. And so about four years ago, the Sjogren's disease started snapping my teeth like glass; crumbling them at the slightest touch. I'm now down to about fifteen teeth and have rampant continuous bone marrow infections in my upper and lower jaw, because of the extensive deterioration and infection. In most cases, you would think the logical think to do would be to go in and have the necessary surgery needed to correct the situation, however, um. My medical insurance, despite letters from four doctors and extensive medical records showing that the severe damage to my mouth is cause by the Sjogren's disease, and the bone marrow infections are threatening my life (because they are beginning to refuse to respond to antibiotics after so much time), um, my insurance company as of Friday has refused my claim for reconstructive surgery and bone grafts.
I've never shared this, uh, with only a small handful of people close to me, but the last year or so, it's been so bad, that I've actually had to glue my teeth back in, just to be able to eat.. and to try and not look like s-such a freak.
I wake up and I find pieces of my tooth and my jawbone underneath them, in my bed and on my pillow. The pain is, it's constant, and at the same time that this is going on, my lupus and rheumatoid arthritis has begun to threaten the use of my arms and my legs, because of the swelling to the soft tissue and muscle underneath. And so we've spent the last six weeks waiting for an answer from my insurance company.. only to be told that I guess my life doesn't matter.
Or maybe it's the fact that I'm on permanent disability, and there's no cure for the diseases I have, so, why invest the $80-100 000 that it's gonna cost for me to have reconstructive surgeries and bone grafts. I don't know what the logic is... I really don't know anything anymore.
I'm unable to seek treatment for my lupus and rheumatoid arthritis because the biological IV infusion drug that I need to take to slow down the severe advancement of the diseases destroys my immune system (since my immune system is what's attacking me), and doing so would allow the severe infections in my jaw and bone marrow to run rampant, um, without any defence at all and I'll die. So we've been holding onto hope that our insurance company, who is already treating my Sjogren's disease in other ways, would see how important and how necessary this surgery is so I can be around and see my kids grow up.
...
I'm not really sure what our next move is. I don't even know if there is one. And the things that I see happening around me make me sad and make me sick. Our healthcare system, especially in the private sector, has sunk to all-time lows. I have another dear friend named Stephanie who suffers from severe lupus and coeliac's disease, and I watched Stephanie work herself down to 89 pounds, killing herself driving back and forth to work every day when she has no business doing so; when she needs to be home, resting and trying to heal, so that she too can be around to see her lovely young children grow up. But she can't afford to go on disability. She *can't afford* to take care of her health. Just think about that for a second. She can't afford to take care of her health. That's the situation that we have put millions and millions of people in. Because, in taking disability, her income stops. She runs the risk of them losing their home, being unable to pay bills, buy school clothes, put food on the table. And so she's been forced to choose between providing for her family now, and being there for her family in the future. Nobody should be forced to make that choice! And a lot of you will say, well why doesn't she just quit working, and file for permanent disability through social security? And that's all well and good, but how many of you know that the disability application process takes anywhere from one and a half, to two to three years from start to finish?
I was blessed when I applied for disability, to have a partner that was still working and making just enough money, that without my income we were able to squeak by. But a lot of people either don't have a second income in their family or the one that they do have is still not enough, with the cost of living being as high as it is these days, to be able to afford t-to languish for two or three years while disability decides if you're actually disabled or not. And so, great women like Steph are forced to continue to push themselves into the grave, because there's no support there when they need it the most.
Many of you watching know that my dearest friend in the world, Jennifer, was fighting a long and hard battle with pancreatic and kidney cancer. In the middle of July, the decision was made to put her into hospice; to keep her comfortable and allow her to transition into the next life as pain-free as possible, surrounded by her family and friends, in a comfortable home-like setting, which is what hospice is supposed to be all about. We put Jennifer in the hospice, and within a, a week or so of her admission, the staff and the doctors at the hospice care system decided to remove every. single. one of Jennifer's pain medications that were prescribed by her pain management doctor and was a working regimen that had been in place for a couple of years, and provided Jennifer tremendous relief from the excruciating pain that she dealt with every second of the day from the cancer.
All of her medications were removed, and they were replaced with a synthetic heroin, methadone. Now many of you don't know that methadone is used to treat chronic pain. Widespread, across America. I myself spent some of the sickest years of my life on methadone and know first-hand how poisonous this medication is. And so at the end of her life, when she should have been kept the most comfortable; when the plan was in place and working well to do so; they removed her medication, put her on methadone, and then sat idly by while she vomited the last of her strength away. From the severe side effects of the methadone. I'll never forgive myself, but I had a flare-up during that time, and for two days I couldn't walk, and so I didn't find out right away what they had done to her. And as soon as I did I talked with her mother, and we had them stop the methadone right away, and we insisted that all of her other drugs were put back in place, but it was too late. She had vomited the last little bit of her strength away, unable to talk through the heaving. For five days all she could do was just lay there, and vomit, and let us clean her up.
...
She slipped into a coma almost as soon as she was removed from the methadone, and without ever waking up, without ever being able to say goodbye, to her daughter, to her mother, to all of us that loved her, she died. Not with dignity. Not pain-free. Not even remotely resembling comfort.
Not long after that I went to see my pain management specialist, who I trust and respect very much, and I related the story as I've just related it to you. About how Jennifer's pain meds were managed, and how methadone was introduced at the end of her life and everything that was working was removed, and I asked him why they would do this to Jennifer in her most dire time of need; and he looked sad, and said just one word. Cost. Jennifer was on over $500 a day worth of pain management and support medications, which had been paid for by our federal government under her social security disability and would've continued to be paid for up until her death; however, because the cost is reimbursed to the hospice, methadone is only $8 a pill, and so it was much cheaper for them (sobbing) to take away her comfort. To take away the end of her life, to save a few dollars up front. Eight dollars. That's what one young mum's life is worth now in America. Eight. Dollars.
I ask any of you watching, especially anyone in the health care industry, if you could put a dollar value on your mother's life? On your father's life? Your sister, your brother, your husband? Your wife?
How many dollars are their lives worth? And how, how has this been allowed to happen? We all deserve to live. We all deserve to be treated with compassion and respect. Being disabled doesn't mean that we're any less worthy, or any less human than a healthy person.
Our contributions to the world may be measured in a different way, but they are no less of value. Jennifer deserved better. Stephanie deserves better. I deserve better, and so does the ten percent of the world's population that's disabled. Things have to change. Be part of that change, in some way, no matter how small. Please, be part of that change. For Jennifer.
As usual, if you're out there, if you're watching this, you're not alone.
Thankyou all for being here. Bye.
Hey everybody this is Chelle, also known as the purplegimp, and this is episode 8 of my disability webvideo series. I'm filming this episode for healthcentral.com's "This is me; your healthcare journey" contest, and the winner gets $200 to donate to the charity of their choice. So I thank them for their interest and their support.
It's been a while since I've been here... a lot has happened in the last month, month and a half, since I filmed my last episode. As many of you know, I struggle with Sjogren's disease, lupus and rheumatoid arthritis. I also have permanent endometriosis and severe bowel adhesions.
The Sjogren's disease has caused extensive damage to my mouth, my teeth, and my upper and lower jaw, because it attacks the moisture-producing glands in your body - in my case, the saliva glands in my mouth - and without moisture, your teeth and your jaw cannot live. And so about four years ago, the Sjogren's disease started snapping my teeth like glass; crumbling them at the slightest touch. I'm now down to about fifteen teeth and have rampant continuous bone marrow infections in my upper and lower jaw, because of the extensive deterioration and infection. In most cases, you would think the logical think to do would be to go in and have the necessary surgery needed to correct the situation, however, um. My medical insurance, despite letters from four doctors and extensive medical records showing that the severe damage to my mouth is cause by the Sjogren's disease, and the bone marrow infections are threatening my life (because they are beginning to refuse to respond to antibiotics after so much time), um, my insurance company as of Friday has refused my claim for reconstructive surgery and bone grafts.
I've never shared this, uh, with only a small handful of people close to me, but the last year or so, it's been so bad, that I've actually had to glue my teeth back in, just to be able to eat.. and to try and not look like s-such a freak.
I wake up and I find pieces of my tooth and my jawbone underneath them, in my bed and on my pillow. The pain is, it's constant, and at the same time that this is going on, my lupus and rheumatoid arthritis has begun to threaten the use of my arms and my legs, because of the swelling to the soft tissue and muscle underneath. And so we've spent the last six weeks waiting for an answer from my insurance company.. only to be told that I guess my life doesn't matter.
Or maybe it's the fact that I'm on permanent disability, and there's no cure for the diseases I have, so, why invest the $80-100 000 that it's gonna cost for me to have reconstructive surgeries and bone grafts. I don't know what the logic is... I really don't know anything anymore.
I'm unable to seek treatment for my lupus and rheumatoid arthritis because the biological IV infusion drug that I need to take to slow down the severe advancement of the diseases destroys my immune system (since my immune system is what's attacking me), and doing so would allow the severe infections in my jaw and bone marrow to run rampant, um, without any defence at all and I'll die. So we've been holding onto hope that our insurance company, who is already treating my Sjogren's disease in other ways, would see how important and how necessary this surgery is so I can be around and see my kids grow up.
...
I'm not really sure what our next move is. I don't even know if there is one. And the things that I see happening around me make me sad and make me sick. Our healthcare system, especially in the private sector, has sunk to all-time lows. I have another dear friend named Stephanie who suffers from severe lupus and coeliac's disease, and I watched Stephanie work herself down to 89 pounds, killing herself driving back and forth to work every day when she has no business doing so; when she needs to be home, resting and trying to heal, so that she too can be around to see her lovely young children grow up. But she can't afford to go on disability. She *can't afford* to take care of her health. Just think about that for a second. She can't afford to take care of her health. That's the situation that we have put millions and millions of people in. Because, in taking disability, her income stops. She runs the risk of them losing their home, being unable to pay bills, buy school clothes, put food on the table. And so she's been forced to choose between providing for her family now, and being there for her family in the future. Nobody should be forced to make that choice! And a lot of you will say, well why doesn't she just quit working, and file for permanent disability through social security? And that's all well and good, but how many of you know that the disability application process takes anywhere from one and a half, to two to three years from start to finish?
I was blessed when I applied for disability, to have a partner that was still working and making just enough money, that without my income we were able to squeak by. But a lot of people either don't have a second income in their family or the one that they do have is still not enough, with the cost of living being as high as it is these days, to be able to afford t-to languish for two or three years while disability decides if you're actually disabled or not. And so, great women like Steph are forced to continue to push themselves into the grave, because there's no support there when they need it the most.
Many of you watching know that my dearest friend in the world, Jennifer, was fighting a long and hard battle with pancreatic and kidney cancer. In the middle of July, the decision was made to put her into hospice; to keep her comfortable and allow her to transition into the next life as pain-free as possible, surrounded by her family and friends, in a comfortable home-like setting, which is what hospice is supposed to be all about. We put Jennifer in the hospice, and within a, a week or so of her admission, the staff and the doctors at the hospice care system decided to remove every. single. one of Jennifer's pain medications that were prescribed by her pain management doctor and was a working regimen that had been in place for a couple of years, and provided Jennifer tremendous relief from the excruciating pain that she dealt with every second of the day from the cancer.
All of her medications were removed, and they were replaced with a synthetic heroin, methadone. Now many of you don't know that methadone is used to treat chronic pain. Widespread, across America. I myself spent some of the sickest years of my life on methadone and know first-hand how poisonous this medication is. And so at the end of her life, when she should have been kept the most comfortable; when the plan was in place and working well to do so; they removed her medication, put her on methadone, and then sat idly by while she vomited the last of her strength away. From the severe side effects of the methadone. I'll never forgive myself, but I had a flare-up during that time, and for two days I couldn't walk, and so I didn't find out right away what they had done to her. And as soon as I did I talked with her mother, and we had them stop the methadone right away, and we insisted that all of her other drugs were put back in place, but it was too late. She had vomited the last little bit of her strength away, unable to talk through the heaving. For five days all she could do was just lay there, and vomit, and let us clean her up.
...
She slipped into a coma almost as soon as she was removed from the methadone, and without ever waking up, without ever being able to say goodbye, to her daughter, to her mother, to all of us that loved her, she died. Not with dignity. Not pain-free. Not even remotely resembling comfort.
Not long after that I went to see my pain management specialist, who I trust and respect very much, and I related the story as I've just related it to you. About how Jennifer's pain meds were managed, and how methadone was introduced at the end of her life and everything that was working was removed, and I asked him why they would do this to Jennifer in her most dire time of need; and he looked sad, and said just one word. Cost. Jennifer was on over $500 a day worth of pain management and support medications, which had been paid for by our federal government under her social security disability and would've continued to be paid for up until her death; however, because the cost is reimbursed to the hospice, methadone is only $8 a pill, and so it was much cheaper for them (sobbing) to take away her comfort. To take away the end of her life, to save a few dollars up front. Eight dollars. That's what one young mum's life is worth now in America. Eight. Dollars.
I ask any of you watching, especially anyone in the health care industry, if you could put a dollar value on your mother's life? On your father's life? Your sister, your brother, your husband? Your wife?
How many dollars are their lives worth? And how, how has this been allowed to happen? We all deserve to live. We all deserve to be treated with compassion and respect. Being disabled doesn't mean that we're any less worthy, or any less human than a healthy person.
Our contributions to the world may be measured in a different way, but they are no less of value. Jennifer deserved better. Stephanie deserves better. I deserve better, and so does the ten percent of the world's population that's disabled. Things have to change. Be part of that change, in some way, no matter how small. Please, be part of that change. For Jennifer.
As usual, if you're out there, if you're watching this, you're not alone.
Thankyou all for being here. Bye.