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My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear.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
 
 
Most of us are suspicious and distrustful of people we meet on FB, with some well-founded reasons.  However, it is beyond me how, with all the extreme couponers around, I have been unable to interest anyone in the coupons I am willing to give away..  I have tried giving them to neighbors, to extreme couponing website operatiors, to FB friends.  So far as I know, nobody has responded.  Is it because I ask for a mailing address?  Is it because my form didn't work?  Nobody even wants to leave a record of visiting my website apparently.  Well, guess what?  If someone gives me their address and asks for some coupons, they're going to get those coupons (unless someone asked first & they were gone already.  I have literally 100s of coupons I will never use.  What am I asking in return?  Nothing. Oh sure, I'll accept Coveted Coupons off my list if they are sent to me.  And after all, my return address will be right on the envelope with the coupons I send out..  Is it required?  Nope.  Will I be more inclined to continue sending coupons to those who send something back? Sure, who wouldn't be?  However, I can probably offer all comers some of what they ask for.

I'm also thinking about this because I am dealing with a family member who has clearly developed an intense paranoia as part of a bipolar disorder.  This relative keeps complaining about not having any money, but all suggestions about saving money are seen as attempts to "control my life."  The latest manifestation is a belief that I and another cousin are "breaking into my house and going through my papers when I'm not home."  This is actually laughable, and dreadfully sad.  From my readings on this disorder, paranoia, delusions, hallucinations, and disordered thinking are part of the illness.  The reason I say this is laughable is that, to be blunt, neither of us has the time, nor the inclination, to figure out when she's not home (her hours are irregular), rush over to her house, commit a crime, and get out before either she returns or someone notices and calls the cops.  In short, we have our OWN lives to live, and plenty of activities to fill up the hours of those lives.   That's another characteristic of bipolar disorder apparently -- self-absorption to the point that one thinks everyone else's activities revolve around them.  That nobody has anything to do except pour their time down the drain marked "How to make life difficult for her." That, and the fact that with my SLE, the scenario she has imagined is literally impossible for me.  I don't move that fast, and if I ever did break into her house, I'd probably fall asleep on the floor before I could rifle through her papers!

Not that I don't have sympathy for her troubles.  I rather imagine that living with a constant belief that others are trying to control one, sabotage one, or make one miserable has to be hallacious.  I really cannot, and do not want to, put myself in those shoes.  Normal life, in which people, through their clumsniess, preoccupations, and dsitractions hurt each other's feelings and create problems, from minor to major ones, is bad enough.  To be completely honest, I have also encountered people with horrendous streaks of "I don't get mad, I get even."  Now that sounds clever, but in my experience the getting even from these people is usually magnified by several times over the original affront.  IF that affront is a misinterpretation of events and intents, you may be dealing with someone with emotional imbalances.

I maintain a general distrust myself of certain things.  If it sounds too good to be true, it probably is.  My employers weren't interested in my well-being as much as in the bottom line, so I didn't trust them to protect me.  Politicians are more interested in serving their parties and their pocketbooks than serving the people, so I don't trust them to protect the people.  There'a a lot fo things I don't broadcast on FB to any and all.  (Sadly, I'm sure the government and most employers and any good hackers could find them out, and probably have).

We live in a society built on distrust.  Republicans and their voters distrust the motivations of the poor. We are told to be afraid of terrorists, hackers, sex offenders, yada yada yada.  Blacks mistrust whites, and while to some extent that is with good reason, it can also be carried to the extreme.  Hispanics distrust whites and, at least in some places, Blacks.  Then there's the distrust of Muslims, Jews, Mormons, Catholics, Baptists, and just about every religion in America, and "secularists,"  which many oddly seem to see as equivalent to "atheists."  It's not.  Remember when Jesus said "Render unto Caesar tjat which is Caesar's?"  Jesus was saying there are things of the Spirit, or God, and things of the world (Caesar) and each has their place.  If that wasn't a clear statement of the separation of church (Spirit) and state (Casear).  "Secular" simply refers to those things which are of the state:  schools, taxes, government, public roads, etc.

Isn't about time we learn to take some informed risks?  Or do we want to resort to becoming a nation where nobody trusts anybody and we are all paranoid?  It will certainly make the job of those who wish to control us easier if we all distrust each other.  Freedom is self-governance.