God gives us life, and He takes it away.  What those who have never been in the position this woman is, or many others with debilitating diseases, do not realize is that sometimes our lives are taken from us bit by bit.  It is that particular situation, not young people in good health with lives ahead of them going through a rough spot, that I address.


We disabled watch those who love us working to take care of us until they are exhausted. EVERY. SINGLE. DAY.  We watch their financial sacrifices, and watch their enjoyment of life drain from their tired eyes.  The more and more dependent we get on them, the more we think "they could have a better life without me."  We love them and want that for them, especially if they are also getting older, feeling arthritis, experiencing heart disease, depression or other health concerns of their own.  


Ever thought God also gives us the will to continue or the courage to die?  The choice to keep fighting beyond physical, mental, spiritual exhaustion, or the courage to free one's loved one's from debt, struggle and the same kind of exhaustion? It just might be cruel to deny this woman the peace she seeks for herself. 


I speak as one whose life has eroded from beneath her feet for decades. My career.  My dreams of motherhood.  The respect of people who knew me but not my disease.  Suffered the contempt of people who do not know me and do not know my disease; managing to find the love within myself that made it impossible to wish they suffer this one day.


I still fight to make the most of every day, , to find, create, as much joy and laughter to buoy my own heart and those of others,  to do as much as I can for myself, for others, for the world, for love.  I admit that I am growing increasingly less willing to fight as my abilities continue to erode, as  it becomes increasingly difficult to make even the tiniest of dreams come true, and most of all, as I see the stress my beloved husband undergoes every day.  I die by breaths, but the amount of time I can hang on, long after I can do nothing for myself or others, stupefies me.   


I am not there yet.  Yet I see my future, with all its pain, and I do not wish that on my husband.  Some day I will be where Marie is, and anyone who stands in my way does not know the first thing about loving others as we love ourselves.  


My prayer is that Marie and the Irish courts find the wisdom to break free of medieval views on death and suicide.  I'm amazed that any Christian who looks to heaven can willingly insist that someone with no will to live any longer MUST suffer and make suffering for the ones they love until some "critical" body part wears out. 


I could not say I love anyone that  I made endure suffering: physical, emotional, mental.  If you think you can confront God and say "I kept her from killing herself so you could decide when," don't be surprised if He says "I loved her enough to let her decide when she could stand no more, and you didn't love her enough to let her go."  Cause the God I believe in would say just that.  I hope the Irish courts know that God.
 
Again, Mr Romney, you are speaking from your gilded gated "every need met" world.  Allow me to introduce you to mine.

I am almost 60, an SLE patient who has no insurance coverage.  I was hospitalized in May 2011 with low platelets (~37,000 when normal is !50,000-400,000+.  I was in danger of bleeding to death internally.  I went to the county charity clinic, where I met with the most incredible incompetence.  Mostly, they just don't treat the poor patients with the same kind of respect and concern I got/get from doctors I pay.  I have retained my private rheumatologist, although I didn't go for a year, and that's why we didn't catch the platelet issue until it was so severe. 

Now I cannot take the medication that was keeping my lupus at bay because it destroys platelets.  I also cannot take aspirin or NSAIDs such as Ibuprofen for the pain in my joints.  Nor can I afford the medication I need, Ben Lysta.  Why?  It's $2000-$3000 a pop, and the first three doses are to be taken 2 weeks apart and then once a month after that.  I am still taking prednisone, which isn't really controlling my lupus, and my doctor estimates will take 5 years off my life.

I have been turned repeatedly for SSDI, despite the fact I cannot walk more than about 100', suffer from exhaustion so badly that I often require 12-14 hours of sleep, and suffer pain in my joints on a daily basis.  Right now I am taking 50 mg of Tramadol 4 times a day to get through the days. I'm not old enough for SS & Medicare, and if Congress raises the age requirement, I won't live long enough to collect.  Even if they don't, I might not live long enough to collect.

My husband has high blood pressure, and he is not covered either.  We lost our insurance when your friends the Koch brothers outsourced his job to India in 2009.  He has not found a job.  The first year, he didn't even get a nibble at anything suitable.  So he took care of my late 80s mother and me, the house and the yard, the shopping, the laundry, theerrands.  Mother died 21 November 10, and in the midst of her final days and the funeral, he got a call from a headhunter, which he missed because he was ferrying me around and sitting with my mother in ICU, and taking care of my needs.  By the time he got the message, it was too late.  

My brother is an attorney, and he has been paying all our bills, including house maintenance and some modifications for my condition, and supplying all our basic needs.  I have a computer because he believes, that since I am often housebound, I need the intellectual stimulation. We also have a television because we never go to movies unless we get free tickets.   He has also been paying for my medical care.  He is 62 and about to retire from the law.

I had a friend who died from a curable cancer in 2009.  He had no insurance, and could not pay for the ongoing treatment.  So he got a pain prescription and died a long slow death.

My cousin, who is bipolar, has a heart condition, and is in charge of her 58 year old mentally challenged sister, had a breakdown not long before their Alzheimer's patient mother died.  She had no insurance, and despite her pleas, the EMS took her to the NEAREST hospital instead of the charity one.  They said that was their policy.   She now has a $25,000 bill from that NEAREST hospital, an income under $20,000 a year, and goes to the charity clinic run by the county.  If she has a heart attack, the EMS will take her to the NEAREST hospital, where she will once again incur charges she cannot afford. The NEAREST hospital to her house is about 5 blocks away and a for-profit institution.  It's also the nearest one to my home.  So guess where the EMS would take my husband or myself if we have a medical crisis at home?

We have elected to die rather than have that happen.  If we were eligible for medical care under your plan, we would not be able to afford the premiums.  the only quote I have gotten is close to $2000 a month.  So yes, Mr Romney, people ARE dying for lack of insurance, and it is not because we have "chosen" not to be covered.  You simply do not have any concept of the realities of live for the unemployed, the disabled, the underemployed, the working poor, or anyone in the REAL middle class (which, statistically is about $30,000 to $80,000, NOT those making $150K - $500K., as you seem to think.

Look through my posts.  I invited your equally clueless wife to come viist me some montjhs ago.  I promise you, we could give an education you've never had.
 
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 house has an accumulation of things dating back to before 1957 when my parents bought it.  What's worse is that it has an accumulation of things from 4 generations and 6 households.  My mother's parents' things, my parents' things, my own things from when I lived alone, my brother's things from when he lived alone, and my husband's things from when he lived alone, and what we brought home from my father-in-law's after his death.  To be fair, the last two households don't account for much of the "stuff" around here.  More stuff seems to keep coming in. Not sure how with our reduced financial circumstances.

As long as my mother was alive, it was her house.  She had this vision of  the house as she and my father intended it.  Changing anything, getting rid of anything, was harder than getting  Sarah Palin to go away. My brother has now moved out, into his bride's house, which is about the size of a postage stamp.  They're building an addition, but ti's slow going.  Mostly because her own mother has moved here from Oklahoma, and my sister-in-law's time has been occupied by that instead of meeting with the architect, contractor, etc.  So most of his "stuff" is still here.

 If I look at the whole, it's overwhelming.  So I have adopted a "five minute burst" philosophy.  I spend five minutes doing what I can.  On good days, those bursts come close together.  On bad days, I might have as many as two bursts.  On the worst days, I have none.  I focus on the progress, not what remains to be done.  I realize most outsiders would walk into this house and see what has not been done. To the judgmental of those observers, I'd say "Spend five minutes HELPING rather than criticizing."  


The point of this little blog is this:  Is there an elderly, disabled, or both person in your life?  In your neighborhood?  Give them 5 minutes of help once a week. What a blessing it would be to me if just a handful of people gave me 5 minutes of help once a week.  A dozen people giving me 5 minutes a week is an hour of help.  It takes very little time to make a big impact in someone's life.  Look around.  Someone needs 5 minutes of your time.