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My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear.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.

SO please look into your heart and see if you want to pull my plug by voting to kill "Obamacare
 
This is the tale of two households.  Both have suffered the loss of their mother within the last couple of years.   Both consist of two people.  There the similarities pretty much stop.

Household A:  A man & wife.  She is disabled and he is "long-term unemployed."  Both are under 60.  They drive a car (low end) bought, owned and insured by her brother.  Their brother provides them with in-kind goods: food, clothing, utilities, home maintenance (the part the husband cannot do himself, and he's pretty talented at it)., auto maintenance, gasoline, etc.  Technically, they qualify for food stamps, which his $250K republican mother suggested they apply for (instead of offering help to her son in the form of a check) because "I help my workers (farm) get them all the time."  NOTE:  the husband is pretty sure these are mostly illegal migrant workers.  They have not bothered to apply, however, because in Texas, a married couple with no resident children, on the average, receives food stamps for three months only, and the check is pretty small.  The maximum they could receive them, from their understanding, is sic months anyway.  Not worth the time and effort put into the application process.  When I say "pretty small" I mean around $100 a month.  Instead, they grow fruits and vegetables (organically), herbs, shop sales, using coupons.  The dryer broke; the husband fixed it.  He mows the grass, despite having high blood pressure and living in Houston, where it already 80+ every day. They bought grass plugs and re-sodded the lawn after the recent drought themselves.  Yes, I mean they went outside, dug up the hard packed clay, put in sand and manure and planted the plugs.  six they did manually.  Then they found a tiller on sale for $129.99 + shipping, the brother paid for it, and the rest they used the tiller to plant.  Mind you, they aren't re-sodding from lawn edge to lawn edge, just placing plugs in the worst spot about 6" apart,  expecting the plugs to grow and fill in the sod.  They do not have a working dishwasher.  They eat beans, soups, make their own stock from the chickens  & vegetables they cook, wear very inexpensive clothing (the most expensive thing in their wardrobe was a winter jacket at $29.99.  They have low energy light bulbs, conserve electricity (and going with very little air conditioning is not always pleasant), conserve water, collecting roof run off for their garden and lawn.  They have a "full charity" card at the county hospital/clinic system, but they do not use the services routinely.  They got it for an emergency situation only.  They have a small inheritance/saving account (originally less than $15,000 and now just under $3000.  No maid, no gardener, the only outside help with the housework being a friend of the wife's.  The wife engages in online activities to earn money, win prizes, sell used goods, and generate any income she can.  She gets free samples, haunts clearance racks and "as is" sections.  So far this year, she has scored $500 in a grocery gift card, two "free Big Macs for a year with the purchase of a value meal" cards, about $40 in free birthday food for the two of them, a $5 Walmart gift card, a $10 prepaid American Express gift card, and a lot of free food through the use of coupons combined with sales and store discounts.  They have also donated to Toys for Tots, the local food bank, disaster relief clothing drives, Salvation army clothing drives, and other charities through "click and we will donate" drives, the purchase of brands which donate part of the purchase price to charity.  They routinely pick up school supplies at little to no cost to donate to the local schools, take their newspaper and cardboard to the school for its paper drive, save and donate Box Tops for Education, Labels for Education, and other such programs.  They randomly give food, shelter,  rides, coupons, and such to the homeless, those with less than they have, family, friends, & neighbors. Expired coupons go to the American miliitary overseas.  They do not attend church.   They vote Democratic mostly, and consider themselves to be liberals.

Household B:  Two sisters, one of whom is mentally challenged and autistic.  They own & live in a house on a piece of property worth over a million dollars,   One is almost 65, works as a substitute teacher and is applying for full-time jobs.  She is bipolar.  The other receives SSI and is applying for food stamps, and has a small job working at Ellington Field one Saturday and one Sunday a month (the costs to get her there and back uses up a lot of her earnings).  There is a trust fund for them.  They have cards to the county hospital/clinic system, although not at "full charity," but the next step up (instead of $4 per dr visit, they pay something like $8.  They use the services routinely. including the pharmacy where their prescriptions are $8 (instead of $30 at WalMart like household A's, which the brother pays).  They have someone to cut the grass.  If their dryer goes out, they call a serviceman.  Recently, the one who drives had a wreck, totaling her Toyota Camry Hybrid, which she replaced with a brand new Toyota Camry hybrid.  Guess who picked her up at the accident scene, took her home to call the insurance company, out to the dealership to get a loaner, and to the hospital to be checked out?  She did give them $5 for parking, which was $10, and also treated them to a lecture about "taking the money out of the mouths of a retarded woman and her unemployed sister."  Note that earlier this year, she was hospitalized and they drove her sister out to visit her, ferried her cell phone (a Verizon plan with a monthly fee instead of the prepaid rarely used cells Household A uses), drove the younger sister to visit their (then still living) mother in the hospital, to work, to the grocery store, picked the older sister up from the hospital, took her to get her car from the shop, followed her home to make sure she was safe -- never asking for a penny, never being offered one.  For this they get a lecture?  Twice they have had to pick the sister up from the house and house her overnight  because the two of them got into a fight, once they were called by the police to do so.  This at a cost to of about $200 (which the brother paid).   Twice now they have driven the mentally challenged woman to her job and picked her up (both days she worked).  These sisters don't use coupons, discounts, store loyalty points for gas -- nothing.  It's "too much trouble."  Constantly the older sister moans about their impoverishment to household A.  The mentally challenged sister uses the Metro-lift service, except when she needs to travel outside its service hours. They have "scholarships" to the local Y and work out regularly.  They grow nothing, and the younger sister does all the housework.  They eat frozen dinners, go to church across town, sing in the choir, and do what they want to do.  the older sister says an Internet connection is too expensive, while she wears her late mother's diamond rings easily worth $10,000 and wears designer clothing.  Only one votes, but she votes Republican always and talks down about "people on welfare."  Hellooooo?  

I give up.  The system is crazy.  Can anyone explain it to me?