If you have been reading my blog, or any of my pages, or my Facebook page, you know that I have SLE (Systemic Lupus Erythmatosis). What you may not realize is that this is primarily "a woman's disease," as 90% of the patients are women. Most of them are 15 -45, the childbearing years. For some enlightening information about pregnancy and lupus, please read this study in Japan about pregnancy outcomes and lupus .
Women of color, across the board have higher rates than white women. I once had a former Texas benefits evaluator tell me that "lupus is a made up disease by people who are too lazy to work." To me, it was clear he was referring to Black women. Black women have higher death rates from breast and cervical cancer, higher rates of STD's and teen pregnancies, higher infant mortanlity. SOURCE: Debunking the myth. Black women, Hispanic women, Native American women all have higher rates of lupus. Black women have more severe outcomes more often. Poor women without health insurance have a harder time getting the help they need to treat lupus. SOURCE: Lupus Fact sheet
For some information about lupus symptoms in general, please read this article about two lupus patients.
My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear. At the time, I had health insurance. I no longer have health insurance, and my best option for pap smears is Planned Parenthood. Read one woman's story about not affording to go anywhere but Planned Parenthood.
Please make yourself aware of two FACTS:
1. NOT ONE TAXPAYER DOLLAR GOES TO ABORTION. That has been prohibited since the 1970s.
2. Abortions are only 3% of their services FACT SHEET HERE
Finally, let's talk about SOCIAL SECURITY and Disability and Social Security Supplemental Income. I worked from age 15 until about 40. I've been fighting to get SSDI so I can get Medicare to cover my lupus medications. First they told me I ought to be able to work (in 1995) because I am educated. Know many employers who want employees who fall asleep on the job, or who miss work frequently because they cannot drag themselves out of bed and stay awake long enough to bathe, dress, and get to work? Or who catch the flu and the miss weeks because the immunosuppressant drugs they take for lupus don't fight the flu well and leave them with bronchitism pneumonia and a lupus flare in which their joints swell and cause agonizing pain? If so, please send those employers my way! I'd love to work, use my brain again for pay. Of course, it has to be low stress and pretty free of deadlines, because stress makes my lupus worse, and I never know which day I'm going to wake up and be unable to stay awake -- which makes it difficult to meet those deadlines. See this blog for another person's perspective.
The next time I applied for SSI/SSDI they told me my $3000+ savings account made me ineligible for SSI and I no longer had enough qualifying quarters for SSDI. I appealled and they told me I wasn't disabled! NOIT DISABLED? I cannot shop without either my husband pushing me in the wheelchair or an electric cart. Some days my knees hurt so badly the 8' from my bed to the toilet has me in tears. I cannot stand in lines for more than 30 seconds without the knees and hips begging me to sit down. That's not disabled?
Now their story is that we cannot prove I was disabled WHILE I STILL HAD ENOUGH QUALIFYING QUARTERS. THEY have the 1995 records with the doctors names, but OOPS I can no longer get those records because the doctors who made the disagnosis, and who treated me, destroyed the records 10 years after my last visit. I'm SURE those records are in the SS records; they just demand that I produce them, knowing I can't.
So now I'm still 5 years too young for SS and Medicare. What if they raise the retirement age? First how will we tap into our retirement accounts without penalty to pay for medical expenses? I will NEVER see my SS money that I paid into the system all those years I worked (sometimes at 2-3 jobs at a time!). I WILL NOT LIVE LONG ENOUGH!
Let me repeat that I WILL NOT LIVE LONG ENOUGH! I can no longer take Methotrexate because my platelet levels drop too low and I am in danger of bleeding to death internally. The prednisone I have been on for over a year now will, according to my rheumatologist "take five years off your life." It also induced Type II diabetes, which is implicated in heart disease, even if I didn't have the extra clotting factor from lupus. The Hydorxychloroquine (Plaquanil) no longer controls the disease by itself. I also cannot take aspirin, NSAIDs like ibuprofen. So I take ginger and turmeric for the constant pain. Some days it works, some days it doesn't work so well. I need Ben Lysta, according to my rheumatologist, but she's not going to administer it. It's about $2000-$3000 a pop. I think it's once a month. I tried to get onto a drug trial, but the diagnoses (both of which I think are wrong) the county hospital gave me of non-alcoholic cirrhosis and heart failure keep me out of the trial. I need a liver biopsy to rule out the cirrhosis, and an echocarcdogram for the heart failure.
My only hope is Obama's health care plan, because I could not be denied coverage for pre-existing conditions. If I cannot afford the private health insurance or the high risk pool insurance, I could, as I understand it, get Medicare without having to be on SS, SSI, or SSDI. So think twice before you pull the lever for someone who wants to repeal Obamacare; that lever pull will be a death sentence for me and many others with my illness or others like it. Of course, it you want to be a good, compassionate Christian, you can send me money at PayPal to help with my medical expenses. Leave a comment on this website and I'll send you my email. They are. or would, if I were seeing the doctors I need to see and taking the meds I need to take run from $3000 in a good year for routine meds and visits and tests to upwards of $24,000 if I had to be hospitalized. My brother is currently supporting us and paying our medical expenses. He's nearing retirement age. He spent years paying for our mother's needs because her SS didn't cover the utilities, food, out of pocket medical expenses. Now he has us, and his own family.
Women of color, across the board have higher rates than white women. I once had a former Texas benefits evaluator tell me that "lupus is a made up disease by people who are too lazy to work." To me, it was clear he was referring to Black women. Black women have higher death rates from breast and cervical cancer, higher rates of STD's and teen pregnancies, higher infant mortanlity. SOURCE: Debunking the myth. Black women, Hispanic women, Native American women all have higher rates of lupus. Black women have more severe outcomes more often. Poor women without health insurance have a harder time getting the help they need to treat lupus. SOURCE: Lupus Fact sheet
For some information about lupus symptoms in general, please read this article about two lupus patients.
My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear. At the time, I had health insurance. I no longer have health insurance, and my best option for pap smears is Planned Parenthood. Read one woman's story about not affording to go anywhere but Planned Parenthood.
Please make yourself aware of two FACTS:
1. NOT ONE TAXPAYER DOLLAR GOES TO ABORTION. That has been prohibited since the 1970s.
2. Abortions are only 3% of their services FACT SHEET HERE
Finally, let's talk about SOCIAL SECURITY and Disability and Social Security Supplemental Income. I worked from age 15 until about 40. I've been fighting to get SSDI so I can get Medicare to cover my lupus medications. First they told me I ought to be able to work (in 1995) because I am educated. Know many employers who want employees who fall asleep on the job, or who miss work frequently because they cannot drag themselves out of bed and stay awake long enough to bathe, dress, and get to work? Or who catch the flu and the miss weeks because the immunosuppressant drugs they take for lupus don't fight the flu well and leave them with bronchitism pneumonia and a lupus flare in which their joints swell and cause agonizing pain? If so, please send those employers my way! I'd love to work, use my brain again for pay. Of course, it has to be low stress and pretty free of deadlines, because stress makes my lupus worse, and I never know which day I'm going to wake up and be unable to stay awake -- which makes it difficult to meet those deadlines. See this blog for another person's perspective.
The next time I applied for SSI/SSDI they told me my $3000+ savings account made me ineligible for SSI and I no longer had enough qualifying quarters for SSDI. I appealled and they told me I wasn't disabled! NOIT DISABLED? I cannot shop without either my husband pushing me in the wheelchair or an electric cart. Some days my knees hurt so badly the 8' from my bed to the toilet has me in tears. I cannot stand in lines for more than 30 seconds without the knees and hips begging me to sit down. That's not disabled?
Now their story is that we cannot prove I was disabled WHILE I STILL HAD ENOUGH QUALIFYING QUARTERS. THEY have the 1995 records with the doctors names, but OOPS I can no longer get those records because the doctors who made the disagnosis, and who treated me, destroyed the records 10 years after my last visit. I'm SURE those records are in the SS records; they just demand that I produce them, knowing I can't.
So now I'm still 5 years too young for SS and Medicare. What if they raise the retirement age? First how will we tap into our retirement accounts without penalty to pay for medical expenses? I will NEVER see my SS money that I paid into the system all those years I worked (sometimes at 2-3 jobs at a time!). I WILL NOT LIVE LONG ENOUGH!
Let me repeat that I WILL NOT LIVE LONG ENOUGH! I can no longer take Methotrexate because my platelet levels drop too low and I am in danger of bleeding to death internally. The prednisone I have been on for over a year now will, according to my rheumatologist "take five years off your life." It also induced Type II diabetes, which is implicated in heart disease, even if I didn't have the extra clotting factor from lupus. The Hydorxychloroquine (Plaquanil) no longer controls the disease by itself. I also cannot take aspirin, NSAIDs like ibuprofen. So I take ginger and turmeric for the constant pain. Some days it works, some days it doesn't work so well. I need Ben Lysta, according to my rheumatologist, but she's not going to administer it. It's about $2000-$3000 a pop. I think it's once a month. I tried to get onto a drug trial, but the diagnoses (both of which I think are wrong) the county hospital gave me of non-alcoholic cirrhosis and heart failure keep me out of the trial. I need a liver biopsy to rule out the cirrhosis, and an echocarcdogram for the heart failure.
My only hope is Obama's health care plan, because I could not be denied coverage for pre-existing conditions. If I cannot afford the private health insurance or the high risk pool insurance, I could, as I understand it, get Medicare without having to be on SS, SSI, or SSDI. So think twice before you pull the lever for someone who wants to repeal Obamacare; that lever pull will be a death sentence for me and many others with my illness or others like it. Of course, it you want to be a good, compassionate Christian, you can send me money at PayPal to help with my medical expenses. Leave a comment on this website and I'll send you my email. They are. or would, if I were seeing the doctors I need to see and taking the meds I need to take run from $3000 in a good year for routine meds and visits and tests to upwards of $24,000 if I had to be hospitalized. My brother is currently supporting us and paying our medical expenses. He's nearing retirement age. He spent years paying for our mother's needs because her SS didn't cover the utilities, food, out of pocket medical expenses. Now he has us, and his own family.
SO please look into your heart and see if you want to pull my plug by voting to kill "Obamacare
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