Anger, Fear, Despair

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New Member

Date Joined May 2008
Total Posts : 3
   Posted 5/20/2008 11:43 AM (GMT -6)   
Need to vent. Not self-pity, but have had it!! Can't talk to anyone else about this, they don't get it. Others of you with SLE Lupus might. I'm at the point I can't take much more of it. Lupus robbed me of more than my health. Hope is for people who aren't poor, not people like me.
In and out of hospitals after nearly dying several times. Raised 3 kids as a single mom on my own with Lupus, working 2 physically demanding jobs simultaneosly for 10 years since I'm considered "low skills" because I only have a High School diploma. Nearly killed me. ADA a joke, no enforcement. Tried lawyer, did nothing. So bye bye full-time job after "too many" hospitalizations. No full-time job = no medical benefits = no more medicines, so Lupus spun out of control. Part-time jobs helped bills, but didn't offer medical benefits. SSI turned down after 5 years of Appeals, Judge told me and my doctor to not bother returning until I had only 6 months or less left to live. Arrogant, cold B*stard!
Kids grown by that point and got fed up with me being sick. Told me so. So son joined military to get away. Oldest daughter moved in with boyfriend to get away. When I collapsed at job with Lupus induced pneumonia she told youngest daughter to come live with them to get away. Sick and alone. Not enough funds for rent working just the 1 part-time job and so sick, so had to move out of apartment. Nowhere to go. Turned to church I'd been faithful member of. Told me they wouldn't help if family wouldn't help. Phoned every aid agency in phone book. All said "Sorry, we can't help you." So lived in car for 3 days with SLE induced pneumonia. Heartbroken. Wasn't as if I'd gambled or drank or drugged away my life, so why so unloved just because I am sick?? Barely fought off temptation to drive car off cliff and end it all.
Oldest daughter found me, took me in for 2 week limit, but very angry at feeling "forced" to by her guilt. Returned to part-time job still ill, scrimped up enough to rent room from scary kooks. Car repossessed when couldn't afford payments, so spent hours on buses to get to job, rent more rooms from more kooks. Seems only weirdos rent out rooms, apparently. A few years pass.
Youngest daughter decides it's not my fault I'm sick. Asked me to move in with her because husband is constantly deployed in Iraq. Am very sick, but do my part to help in every way. She gets stranger and stranger over next 2 years, screams, yells, taunts, blames, humiliates. Behavior goes over the top after her baby is born. She becomes unable to care for baby, so I must do so day and night. Also lets house go, so I have to do all cleaning, laundry, dishes, etc. or everything stays undone and filfthy. Discover cause after a year of this: she is diagnosed as Bi-polar and Post-partum depressed. Meds help her, but still tremendous strain. Never know what will set her off. Have to emotionally tiptoe around her.
She also taunts and snaps at me over my pain, trouble walking, and inability to open things due to Lupus induced arthritis, gets angry on days when I can't bail her out due to Lupus induced migraines, etc. Recently refused to take me to ER after month of health going downhill, bad cough, fever. Taunted me when I asked her to watch baby so I could shower to lower fever. She only got alarmed when she finally called ER advice nurse and told them my symptoms and that I had Lupus and ER nurse demanded she bring me in immediately. Turns out I had pneumonia.
Tried to talk to counselor for help to cope, but he had his own agenda. Then fed me the "things could be worse line".
I turned 50 this year. It's been 15 since I was first diagnosed with SLE Lupus. It hit me that I will never fulfill any of my dreams. If I stay with my daughter I will at least die with a roof over my head, but at the cost of her bi-polar induced daily emotional torture of me. I'm at the point of deciding, Why bother anymore? I'm so miserable I pray I draw my last breath soon. It will be such a relief to finally draw my final breath!!
Ready to scream at the next non-Lupus sufferer who lightly utters the idiotic phrase, "Things could be worse" one more time...!

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 5/20/2008 1:57 PM (GMT -6)   
    Bless your heart! You have endured well more than your share. My heart goes out to you.
    I'm so sorry you have gotten no help from anyone what so ever over the years. It's a shame that your family and everyone around you is treating you this way. I just can't imagine how overwhelming this must be for you.....(((Hugs))).
   You have come to a good place for support. This is the most caring group of people I have ever encountered.
   Can you get on state aide, like Medicaid or get food stamps to help you get by till you can get on your feet better? I wish I knew how to help you. Hopefully, someone will come along soon that will have better advice.
   Please keep us updated and feel free to vent anytime you need too. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/20/2008 2:57 PM (GMT -6)   
I would reapply to SSI because you do not have to be at death's door to qualify. I won my case last year, had tried several times in the past and lost. This time the judge took one look at the doctor reports and gave it to me. He wrote a scathing report saying the state DDS failed to do their job correctly and basically that I should have been one of the immediately approved cases. You have been through hell and do not deserve the kind of abuse you suffer with your daughter. Thing is neither does her child. Seriously this kind of stuff will do serious harm to her baby. Every mental health person I have ever dealt with had their own agenda and always tried that it could be worse bullcrap. They tried it when my daughter died and again when my son died. I hate mental health people, they made my situation worse by prescribing meds my body can't handle and upping the dose until it drove me crazy.

There are supposed to be places to help in situations like yours. You would be considered an adult at risk of abuse by the state protective services agency, and they are supposed to interviene when someone abuses an adult at risk. Even if they won't, most states have funds to help older adults if they are disabled or seriously ill. I wish I could offer more than I have but I do not know what else to say. Your children have behaved abominably and there is no excuse for their attitude, you sacrificed what little health you had for them. You will find many here who understand. Many in my family refuse to believe I am sick- my signature says it all.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

New Member

Date Joined May 2008
Total Posts : 3
   Posted 5/20/2008 10:48 PM (GMT -6)   
Thanks for replies. Know this is heckuva way for me to have introduced myself, but have no energy to be socially correct right now. A scream of pain is all I could manage. Sorry. Figured those who couldn't handle it would move on to more positive Posts.
Appreciate efforts made to advise, know from experience how much it takes out of you to do so. But as for trying to find any tangible help: been there, done that. Yes, I too used to believe the hype that there were agencies in place for the hard working, tax paying, through-no-fault-of-their-own desperately ill. There are not. Except for AIDS; several places offered me hospice care and shelter if I had AIDS induced Lupus. No joke. Am not exaggerating when I said I phoned every agency in the phone book. Federal, State, public, private, religious, you name it I called them. Lived in L.A. area at the time, so phoned hundreds of numbers over several days. It was after I made final call and heard final "We can't help you" that I broke. No one cares if you live or die when you are poor, period. I hung up and stared at the phone and figured I might as well end the life everyone obvously felt was so worthless. Nearly did.
Reapplying for SSI not an option. Don't have medical records I did before when I used to have medical coverage years ago. Couldn't begin to track them down from all the places I saw doctors/was hospitalized. Too numerous, and covers decades. Also am no longer resident of the State I was in when I first applied, went through Appeals and was rejected all those years ago. Would have to try again from scratch.
Have minimal medical care through son in law's coverage, so am finally back on a few meds. Several weeks of Prednisone with several rounds of different high level antibiotics kicked the pneumonia, but it took 3 months to get rid of it. Am able to get meds for high blood pressure, nausea and migraines as well. Also have me back on Plaquenil, so that should help.
Just hard that my daughter's mental meltdowns aggravates my Lupus.
In reply to the response, of course I know her mental illness can do serious damage to my grandchild. That's why I've been the main caregiver. Now that my son in law is back from Iraq, he is shouldering some of the responsibility. Don't mean to be rude, but the baby's well being is closely monitered by my daughter's health professionals. My well being, however, is not. That's why I had to find a place to vent with people who "get" it. So I Googled and found this forum of folks like me who have Lupus.
The physical suffering I've endured with Lupus has been excrutiating. Have had decades of Lupus induced illnesses like pancreatitus, hepatitus, and unpronouncable stuff. Had several occasions blood poured out of both ends (if you know what I mean). Been doubled over in agony for weeks, barely able to even sit up. Had to crawl to feed my kids and change their diapers when they were young. Dropped to 100 pounds for several years at a time, several times over the decades because so ill. Had countless bouts of pnemonia. Was NPO in hospital for 2 months when my entire digestive system shut down at 25. Lost my Gall Bladder and Uterus before I was 30. There's more, but you've been through what Lupus can do; you know.
Yet the rejection, helplessness and poverty is the greatest agony. It's harder to bear than the disease.

Ready to scream at the next non-Lupus sufferer who lightly utters the idiotic phrase, "Things could be worse" one more time...!

Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 5/24/2008 4:38 PM (GMT -6)   
I have never heard such a sad story in my entire life. I thought I had it bad!
I am not in America, but Europe.
I know only a little about Health services in America.
Would you have any friends in other states who could shelter you and help you get on some kind of scheme in a dfiferent state?
Do you have social workers for those who dont qualify for aid?

Are ALL the states the same? If not what state provides certain things you would need most?
What age are you, would you be even able to move country as you would have a passport, and ease your way into their system?

You dont mention friends etc. If family is allyou have and they are not supprtive would you move away, even to gather emotional strength to work all this out.
What about another church in another town?
I am just tying to find questions but have no answers.
I know things are really really bad for you. Surely they dont have to be, or am I naieve about your health services
xx I will pray for you tonight.
xxAn n
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 5/24/2008 7:49 PM (GMT -6)   
Hi Leesie, bless your heart, you have had a tough time over the years. I just wanted you to know you will be in my thoughts and prayers. (((( hugs ))))

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)

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