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...!