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My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear.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
 
 
The other thing that happened yesterday was that I got a call from the SSI office regarding my (forced) application for financial assistance.  I say forced because when I was hospitalized in May, I awoke on the 19th, after having arrived about 5 pm, being admitted at about 6:45 pm, lain in the "holding area" of the county hospital until about 4 am and then put in a 5 bed ward, to find a cheery young woman telling me that I had to apply for SSDI before they could honor Gold Card Status and pay the bills for me.    So we filled out the forms to the best of my groggy, lacking all the back up documents for the application, condition.

The way this works is that they submit the apllication for RSDI (Retirement, survivors, Disability Income).  This is what the old Social Security for retirees, dependent (minor) survivors of a deceased person and the disabled used to apply for, all rolled into one.  I already knew I would be rejected because when I applied in the mid-1990s for Disability due to my lupus, I was denied on the grounds that as an educated person I should be able to work.  Sure, and when you find an employer who likes employees who miss random numbers of days when the pain and fatigue are simply overwhelming, and who sometimes gets up feeling good but within a few hours starts nodding off at their desk without the help of heroin or other illegal drugs (or even legal soporifics for that matter), let me know.  I haven't worked since, so now, although I worked from age 15 to 40-something, sometimes 2-3 jobs, I no longer have enough qualifying quarters within the past 10 years (DUH!), so they again declined SSDI.  I SHOULD have gotten it before.

After about 10 minutes of questions, the woman told me she was terminating the interview because I was ineligible.  Why?  I have more than $2000 in my savings, checking, CD's, and IRA and my husband's 401K.  Why didn't they ask that question firs,t I wonder?  Could have saved us both the time, and the taxpayer money.  Second, I don't work, my husband (age 49) started his third year of unemployment just after Labor Day. without much interest, even for part-time work (7 offers in the three years, all within the 2nd & this new third year.  I have more than $2000 because I inherited about $10,000 from my mother's insurance policies, and the estate was only recently settled.  Oh he was offered a temp job last week -- 1.5 hours one way from our house, and about an hour's worth of the pay at the job per day in gas required to get there (no bus service available which would get him there without several hours of travel each way and a long walk from the stop to the job site). 

What is the purpose of making me spend all of that money when I may need it to live on next year.  Rebuilding a life would be a lot easier if I got  a little help NOW despite that money,, instead of waiting until I have no assets.  If I spend it, and my husband doesn't ever get another job making enough to support us and get him to a job, I'll need help until I die paying for medical expenses, care-taking while he's at work, and part of our normal expenses, since $10 an hour (much less than he was making before) will not cover the basic expenses in Houston.  My husband's prior salary barely did, when you figure in the cost of clothing, gasoline, maintenance on the car my brother lets us use, medicines, food, etc. etc.  In fact, a home health care worker for 4 hours a day would eat up his entire take home.  The guy across the street has MS, and he has someone who comes in to help him, and his wife told me his entire income of about $40,000 a year barely covers that, his health insurance and medications.  Do the math.

As to the 401(K), if we take it out we pay a substantial penalty, and if they raise retirement age in Congress, it's likely neither of us will be alive to collect it, or Social Security we both paid into.  Which means either my older brother will inherit it, which is ok because he's paying all our bills and expenses now, or if he's gone, it will go to charity.  We have discussed this, and our charity of choice is one which helps orphans and foster children who are "aging out" of the system get established in college, careers, and life  (See http://www.cwla.org/programs/fostercare/agingoutresources.htm  for data on the 20,000-25,000 of these kids per year and their problems, and just think about how much help YOU got from your parents during your years from 18 - 25 or so and imagine facing life without that help.)   In this economic climate, these kids face daunting challenges as jobs and contributions are thin on the ground.  Why can't Congress remove the penalty for long-term unemployed, people losing their homes, people like myself who are denied SSDI because we have been disabled but denied and lack the qualifying quarters.

I know WHY it is.  Some people are so afraid SOMEONE might get a penny of THEIR money.  It's still insane policy to force people all the way down the road into abject poverty and then expect them to climb out without any assets to work with.  It would be insane policy to TAX them into it, like Cain's 9-9-9 would as well. 

Tomorrow I have to deal with the county clinic doctor who has been billing FULL PRICE (instead of my Gold Card price I was eligible for as of the date of the visit) until the RSDI/SSI decision came down, and has already turned me over to a collection agency.  Not only did I not have the money to pay full price ($320 for an office visit -- my private rheumatologist doesn't charge me that much for a visit AND the inhouse lab work!)  --  I was reluctant to do so because I was afraid I'd never get back my overpayment.  The Physicians Group refused to even tell me what the Gold Card fee would be or to negotiate for me to pay that amount until this process was settled.  Now that it has been, I wonder what they will come up with as an excuse for not billing me the Gold Card price.  To top it all off, the last correspondence I have seems to say that this clinic, run by the Harris County Hospital District "does not deal with Ben Taub Hospital" (where I was hospitalized) and will not even call them to discuss my eligibility.  All the clinics and the hospitals are run by Harris County Hospital District, so what's that deal?  They told me to call LBJ Hospital (where I have only been once in my life, and not as a patient, but to visit my Little Sister in the 70s when she had her baby there) to "get your records straightened out."  They also seemed to suggest that since I didn't use LBJ, I should be going to another (more distant) clinic.  However, their email was rambling and unclear, so I might have misunderstood them. ;)

So happy days in