Okay, so yesterday I had my SSDI trial (because after I had my daughter via c-section back in Oct '08, my body didn’t recuperate as well as the prior yr when I had my son in Sep ‘07), but I after my maternity leave I went back to wk and tried to push through the pain. Mind you, I was a Respiratory Therapist that worked in the hospitals on my feet 3-4 days a wk 12 hr night shifts. Which I had previously done for 7 yrs. I would come hm crying because my back, joints, and hips hurt so bad. There were times when we didn’t get breaks because of our job duties. So I decided to file for Disability. In that process, my husband was laid off from his job, we short-saled our hm, lost our cars, and insurance. But at least the kids had coverage. Thank God. Any how fast forward to 2 yrs. First and foremost, I spoke with my attorney a couple days before the trial and she’s basically telling me that they’re going to question me on my daily tasks that I had done when I first applied. Well back then I was able to do a little more than now and I was also 20 lbs heavier. I mean seriously? A lot can happen in people’s lives in 2 yrs! Then they had this “Doctor” appealing against me on speakerphone. And I say that because he’s just reading ppwk abt me and not even knowing me from a whole in the wall, stating Fibromyalgia is “controversial”. In other words not a real disease and I don’t have it or Lupus, when clearly my Rheumo Dr stated I had increased AnA titers, swollen joints, deformation of fingers, and sensitivity to the sun which causes blisters or rashes. Then he had the gall to say lupus has to affect one or more organs in order to have true SLE. Ummm… Last time I heard, word on the street was ur skin was the largest organ on your body!!! And uh your joints and connective tissue were apart of your skeletal system. I’m just sayin’… So to to chop it up Quacker Jack said I was just suffering from a severe case of post-partum depression. Really? I didn’t know it could do all that. Because I actually know women who’ve suffered from that. And just because I had a baby and my body has become my enemy, please don’t use depression as a reason. Especially when you don’t even know my whole history. I was sickly as a teenager but didn’t think anything of it. If someone coughs around me, the next day I’ll be sick. So now it’s the waiting game. Again.
wow…you are absolutely right! And I am sorry you have to fight this battle. Do you have a disability lawyer? Many of them will take your case and not charge you till you win. When I got ssd I had a caseworker–a social worker that I found through the social service center who advocated for me.
good luck and keep your fighting spirit–you sound fierce like a Good warrior. I wonder if the Lupus Foundation has any suggestions? If not maybe we should think about how we could form some kind of coalition…
HI TOMMIE, SO SORRY TO HEAR BOUT ALL OF THIS, I HATE THAT, WHEN WE ARE DOWNGRADED CAUSE OF $ ISSUES…THAT IS ALL IT COMES DOWN TO, THEY DON’T WANNA TAKE THESE AUTOIMMUNE ISSUES SERIOUSLY CAUSE THEY ARE SO MYSTERIOUS & WIDESPREAD AND DIFFERENT FROM PERSON TO PERSON AND THEY DO NOT WANNA PAY OUT ANY $ EITHER… IT MAKES ME SO MAD TOO. IT ISN’T EASY, AND I AM SO SORRY THAT U WERE TREATED LIKE YOU WERE. THAT ISN’T FAIR AT ALL! PLEASE DON’T GIVE UP OR LET THEM GET YA DOWN…THEY ARE NOT WORTH IT, PLUS IT’LL ONLY MAKE YA FLARE EVEN WORSE! HANG IN THERE & KEEP US POSTED…{{HUGS}} SUZIE :0)
One of the worst days of my life was when I had to take my daughter to court to proove she was disabled right at the time of a flair up, she was so sick and heavily medicated I had to keep tapping her to respond to the judge, I had a stack of medical records 500pages for 4 months I felt like if they read they wouldn’t have to ask me anything, it was terrible she’s young and really self concious because of what her illness has done to her looks so she still tries to dress fashionable and she couldn’t even walk with her little dress shoes, from the outside in she looked as if she had been at the happy hour and tossed back more than a few. you cant fake this, but this illness is so unpredictable I cant understand the games of the people in charge.
I know how stupid it is to have to fight like we do…is it this hard with other diseases?
When I read these horror stories I am so very thankful I'm Canadian and we have socialized medicine. I've never had to apply for disability but I can't imagine it being the horrible here with a confirmed diagnosis and clinical evidence. I am happy to pay through my taxes so that I and everyone else can receive equal treatment. Our health care system is far form perfect but I don't have to deal with the stress of an HMO telling me I am not covered. Most of my eye exams are covered at the optometrist's because of the Lupus. All of my paramedical services are tax deduct able with a prescription. I am also very fortunate to have decent benefits from my employer. If I didn't I'm not sure what I would do but there is likely some help somewhere.
Tommie, I hope you get positive resolution from your fight for disability.
Hi Tommie, My name is Beverly L. , I really don't know what to say about thing (LUPUS) or never the less social security !!!! Ha!Ha! Well for years , like yourself i would come home from work or just out from outings and would hurt very bad !!! So about 2006 the pains would cause me to sleep ( 4getting ) that i had to probably had to go to work !!!! yeah - the manager dealt with it 4 awhile , but as the years passed the pain got very worse and my family started saying that I was faking , wanted attention , and what ever else could have been said , it was . Well as time passed - the pains and haveing to go to the hospital (not able to walk for 2days they eased up , and started being alot more concerned with what the doctors were telling me and my oldset son ,whom moved back home to help me , from the very start of this LUPUS stuff) , THANK GOD !!! smile He was the only one from the beginning who didn't doubt me . Months, weeks, appointments and needles, whatever else came with the doctor visits was done ! Meds. out my but became very depressing to me (had to start back seeing the physch doctor every week and take 3 different types of meds. !!! yeah sound CRAZIE but i really had to do this for myself and family (everyone had started being afarid to be around me because of the pain motions and out BURSTs, that i was haveing -when the noise would start up ) Man what !!! the H*** is /was going on -i thought ? I would really break down and cry every and anywhere , it didn't MATTER , who was round or where i was, sounds funny - right !!??? Well from my outlook , nothing was funny !!! The pain and everything was CRAZIE and hard for me to deal with (not knowing what hapopened to me and where was i and where could this had come from ) , i was PUZZLED and hurt . Never had this much problem with my health, not even when i had any of my 3 kids , which are now grown and i alos have 3 grandkids . Thank GOD for the time i took not to KILL MYSELF , since Aug. 23,2010-Feb. 7, 2011 , when the doctors said, (" Beverly you have LUPUS , and there is no CURE !!!)" . My emotions went crazie once again, i cried from 2weeks none stop (REALLY) my family placed me in the ward (physch) to help deal with this stuff (LUPUS), and then i got on the ball wanting to find out EVERYTHING IT was to KNOW about LUPUS. Then in June or July i found this online system " It has really helped me to cope with alot of things that my regular family and friends want to do ) , so i express what am feeling through this family . And til this day / nite it has really been my SPECIAL FAMILY AND FRIENDS!!!! But to talk about the SS matters : I was denied once and then i wrote to the Judge whom sided with the SS doctors , then the next thing i know there was a letter saying they want a hearing in front of the Judge , i thought "oh my god what did i write to this person ? " , my kids were trying to help my find my copy (which was no luck !!! LOL) , so i returned their notice back accepting the review (going on FAITH!!! ) - i attened this appointment ( I could not remember nothing that i wrote - REALLY ) . Hopeing that they didn't arrest me or lock me up in in the ward again !!!!LOL But anyways i had everything, 2 folders of stuff from 2007 til then , also have papers and etc. til presnet moment , to show my case is at the point of no return !!!! Things take time but it works if you focus on yourself and not the SS, just have your proof of everything includeing recepits (anything that the doctors write to you ) everything !!!! Also get your family and friends whom knows you very well to write letters stateing how much you have changed and this LUPUS stuff has taken you away from daily life !!! it works -and it would be the TRUTH!!!! Also you write a letter to the Judge stateing how this has caused you not be able to function with them !!!! Well once again hope that these words find some PEACE for you and also remember 2 things : !. Have FAITH , 2. Keep it Moving Living with LUPUS.... Beverly L.
P.S. My next meeting with the is very soon , hope that GOD has taken some of this STRESS from ME !!!!!Beverly L.
Sorry this was so long .