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 sheetFor 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 My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear.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
Don't get me wrong. Politicians from both parties say idiot things. The reason I'll be talking about Republicans today is that the Republicans are the only party with a Presidential primary this go round, and we are bombarded almost daily with their idiot comments.
The first idiot thing I want to mention is Virginia State Delegate Bob Marshall (R) saying that disabled children are "punishment from God" for earlier abortion(s) by the mother. First, it's pretty clear that Marshall knows NOTHING about the causes of birth defects and disabilities. Many birth defects are in fact, GENETIC, caused by an error in the DNA. Many others, if they are punishment for anything, are the result of drug or alcohol use use during pregnancy or getting the measles! Down's Syndrome is related to the aging of the parents and the physical decaying of their components of the embryo (egg and sperm). Some are caused by combinations of things, including lack of proper pre-natal nutrition, and mother 17 or younger. Still others have not been definitively assigned a cause.
Second, Marshall throws out a statement saying the number of disabled children born subsequent to an earlier abortion has risen "dramatically." Since what year? What is his source of data for this allegation? How does he know the mothers of the disabled children had earlier abortions? I don't know of any study which has asked motehrs of disabled children if they had earlier abortions nor of a study that follows women who obtain abortions to their next pregnancy to see if that child is disabled. If such exists, Marshall should be able to provide the source, and indeed, a responsible user of statistical data would supply the source of data for such an allegation. If there WERE such studies, wouldn't they violate the women's privacy rights? OK possibly someone has conducted such a study on women WILLING to participate. The question then becomes how much self-selection warps the data. What are the odds a woman who doesn't want to tell anyone about her abortion(s) who has a disabled child would participate? And what are the odds women who had an abortion but don't have disabled children would be included, or participate if they were somehow invited to participate As it is, it appears that Marshal is either practicing MSU (Making S..T Up) or he fails to comprehend the basics regarding unbiased research design and statistical analysis, or both. Why would any voter accept this kind of assertion, give no data to back it up? Unless they are intellectually or educationally disabled themselves? (If you suspect you don't understand statistics, or you just don't trust them, please read my "Liars, D***d liars, and Statisticians essay under my The Language of Math page. If that doesn't help, contact me directly and I'll become a Statistics Instructor just for you. :) I did that for years and published in international Statistical journals.
The second idiot thing I wish to discuss is Rick Santorum's call for higher birth rates and his assertion that cjhildren are our greatest resource and create wealth. Is he attributing the US's post WWII growth with the baby boom? More babies means more GDP? Apparently Rick leaps his logic right over the devastated European economies who needed American goods to rebuild, as well as over the shuttered American factories which don't make anything any more. In Research Methodology, this is called confusion of correlation with causality. The classic example is the old joke about "100% of people who smoke marijuana drank milk as infants, therefore drinking milk as a baby must CAUSE marijuana use." Now quit laughing like you just inhaled a doobie! ;) Just because two things happen in order does not mean one causes the other. Let's take a look at some US household sizes over time here.
The average US household size has been falling since 1790, even through the Baby Boom. The Baby Boom was also partially an artifact in changes in the timing of births, caused by the war. On one hand, you had couples rushing to have a baby before he left, unmarried women giving birth to children conceived when their intendeds left before the couple could get married, and after the war, couples separated for several years rushing to make up for lost time. Moreover, there may be a causality working in the opposite direction. The prosperity of post-WWII America, combined with the loss of so many American men in the 18-35 age range (prime childbearing years) may have encouraged couples to have more children than they would have without that prosperity. The GI bill made it easier to buy a home and go to college. Jobs, and salaries were plentiful, especially in the eyes of new young parents who had grown up during the Depression when large families often found putting food on the table difficult. Rick Santorum seems to be unaware that the world has changed: unaware of the unemployment rate compared to those during the Baby Boom, unaware of the falling median income, the larger percentage of families living at or near the poverty level, and the larger number of older Americans who will fall into poverty from being laid off so long that they are now unemployable according to many human resources people. Those with children are the fortunate ones, as the children may be employed and making enough to help their parents. If nothing else, they may combine their households, which is happening more and more now. Those without children may find themselves at the bottom of a deep deep pit from which the only escape is death. Just who is going to profit from having more children? Since the Industrial Revolution, when the added hands on the farm weren't a benefit in the city, groups have risen on the economic ladder by having fewer children, not more. China is perhaps the most extreme example, with India not far behind. These are rising economic stars which many economists expect to eclipse the US in the next 25 years. Both have instituted compulsory birth control policies. China opted for mandatory abortion if the couple did not use birth control to limit the family size to 1 child. India opted for encouraging and providing free birth control pills and devices. Both encourage rigorous education in math and science, for men and women. Historically, female education has been the single greatest predictor of falling family size and increased household wealth. I know, I'm not providing the data to back up these statements. However, I have studied these issues since I took my first demography class in 1972 or 3. I encourage you to learn to find these statistics. They are readily available online, easily searchable using the terms I have used here. You will find statistics to support what I have said. You will not find any credible, unbiased design studies to support Santorum, or Marshal. If you do, I'll eat this post. I'll also write a blog entry called "Idiot things Bloggers say and do." Go for it!