lynn09 says (in blue):

The SSA has been waiting since 1999 for my doctors to give my immune-system disorder a name so they can assign it a code so it can be listed in my primary disability diagnosis. They have also been waiting for my doctors to evaluate my other chronic medical conditions to determine to what extent they contribute to my disability, as well. THIS is what my siblings have worked so hard to prevent. They do NOT want my medical conditions evaluated, diagnosed, or treated - they do NOT want my disabling medical conditions substantiated because they want to convince everyone that all of these conditions that my doctors have treated throughout my life and all of the surgeries I have had over the decades are all "delusions" and "hallucinations" asserting that I have been fooling ALL of my doctors my entire life, and somehow causing them to see in lab results and on x-rays, MRIs, etc., things that really didn't exist - even tricking them into doing surgeries on me for non-existent conditions!!!!!!

Lynn, here's the web site for Immune System Disorders (SSA Disability Evaluation Section):

http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm

for other physical disorders, go to:
http://www.socialsecurity.gov/disabi...ltListings.htm

and choose the correct one.

DISCLAIMER (meaning i am really searching my brain to remember this one!): there is also something called the ICD-9 which are diagnostic codes for all illnesses as well. the above are the SSA's codes they use in determining disability. the ICD-9 codes are the one's used by medical practitioners. they also will be on the doctor's printout after they tested you originally, they HAVE to enter a code to be reimbursed by the insurance company. you can request a printout of your diagnoses from your doctor with the codes on it. it's not your medical record, is usually a 1-page document (if they keep their patient files in a computer?).
http://www.ehow.com/about_6586074_de...d_9-code_.html

The testing has never been done. I was diagnosed with Stevens-Johnson Syndrome up north (those 3 major allergic reactions in 1999, plus numerous other allergic reactions since 1969). My doctors up north wanted to start the testing, but I had no insurance. I had to pay $300/month beginning in September 1999 to COBRA my medical insurance; but the carrier wouldn't contract with any medical doctors or facilities in my area because they knew I had a chronic immune-system disorder and they didn't want to pay benefits. I finally had to drop my insurance in January of 2000 because I could not afford to pay $300/month to be denied access to medical care by my insurance company. I then qualified to be treated at a reduced fee at the county hospital and finally had medical doctors again. But I was not eligible for Medicare until November of 2001, so from January 2000-November 2001, I had no medical insurance coverage at all. This is when my brother offered his assistance if I would move back to Texas. My immunologist told me that the doctors down here needed to start that testing immediately after I moved to find out what the underlying immune-system disorder was that was causing the repeated SJS reactions.

This testing is what my family members have prevented from happening - this is why my brother and sister wanted me to move back here so they could make certain that that testing was NEVER done. In 2002, my PCP/internist referred me to a huge specialty medical center in a nearby city for testing, but I had no way to get there. I begged for over a year, but my family refused to drive me there knowing full well that I could not make that drive by myself, and no one else here would even speak to me because of the lies my family had told them, so I was stuck. I do not qualify to use Handitran because I am under the age of 65 and my disability doesn't specifically prohibit me from driving - and I certainly could not afford to pay $200+ to take a cab there and back. A few years later, I asked my brother why he wouldn't help me get to that medical center, and he replied, "WE decided that it probably wouldn't be worth our time and money." That must have been the "royal" WE because I most certainly was not involved in making THAT decision. As for the "money," I guess he meant for gas because I had already refused to sign my Power of Attorney over to him in exchange for a ride or assistance with the co-pays.

In late-2004, my PCP/internist finally referred me to another specialist here in town. He diagnosed "Chronic SJS" and wanted to start running a huge battery of tests. He knew that I was waiting for the settlement from the class-action suit against UNUM that had just been filed so that I could afford the co-pays on the tests. My brother contacted that specialist immediately following my appointment with without my knowledge or consent and fed him the same batch of lies he, my sister, and my mother had been spreading about.

I did not find out until June of 2006 that that specialist had turned around and reported to my PCP/internist, UNUM, and everybody else that my chronic medical conditions "may be psychiatric in origin." He made no mention of the chronic SJS, nor of his instructions to me to continue with the high-antihistamine-dosage regimen prescribed by my doctors up north and to strictly restrict my exposure to heat and light. I had requested a copy of that specialist's report again and again, but his staff never sent it to me. I never saw his report until June of 2006. When my internist called him and asked why there were so many discrepancies between what he told me and what he reported to my PCP/internist and everyone else, the specialist replied, "She was talking fast during the exam." He had also told my PCP/internist and some other doctors that, "She's uncooperative, unresponsive, and dragging her feet" because I had to save up the money to pay for the tests he wanted performed.

My brother had told me that he would help me with the cost of the co-pays, but only if I signed my Power of Attorney over to him and gave him unfettered control over my healthcare and life - his terms were unwarranted and unacceptable, so I refused. A few days after that June 2006 appointment with my PCP/internist, I received the letter telling me that I was dropped from the class-action suit and would not receive any portion of the settlement. That specialist's billing clerk also reported me to the SSA and Medicare as a "criminal" because she input my SS# into her computer program incorrectly and couldn't be bothered to pull my chart and look at the copy of my Medicare card.

Furthermore, my PCP/internist still had not requested my medical records from up north. I gave him the list and signed releases in June of 2002, October of 2004, and June of 2006. At no time did he or his staff ever inform me of any difficulties getting my records - by the time they requested and received them, it was too late - that $90k in long-term disability benefits was lost. Once he received my records, his staff informed me that I could not see or speak to him until my account balance was paid off. Without my LT benefits, it took a while. I called in every month to make a payment when I received my SSD check. On October 9, 2008, I called his office to make the final $20 payment and found out that he had committed suicide just 3 days before.

None of the doctors here that I saw prior to my current PCP will communicate with me. I have requested copies of my records, as well as copies of any Michigan records they have (only 2 ever requested them), and copies or a summary of whatever verbal and/or written information regarding me has been provided to them by my family and/or any other individual/entity. I've received some of my records, the copies they sent me of my Michigan records do not match up with what my Michigan providers have recorded as having been requested by and provided to these 2 doctors and are in no way representative of 20 years-worth of records; and, of course, they have refused to tell me what information that was provided to them by my family members and what information they provided to my familiy members. They have also refused to provide me with a printout of my SSD diagnoses and codes. Basically, since I arrived here in 2001, my rights have been completely suspended and I have not been permitted to know anything about my own healthcare.

What I lost as a result of my siblings' illegal interference in my healthcare was approximately $90,000 (just under $500/month after I started receiving SSD benefits) in long-term disability insurance benefits through my employer's carrier. In fact, I lost those benefits twice - when the carrier illegally terminated them in 2001, and again in 2006 when I was dropped from the class-action suit that had been brought against that carrier for illegally terminating my and so many other eligble beneficiaries' benefits. I informed my new doctors here of the lawsuit, but they never informed me that my family members were illegally directing and controlling my healthcare without my knowledge and consent - nor did my doctors inform me that they deliberately made certain that I lost out on recouping any portion of those benefits from the settlement because my family members had convinced them that I was a "demented, delusional lunatic," "pathological liar," "criminal," and "drug addict." That $90K is lost to me forever - there is no legal recourse available to me. This left me with only SSD as income - just a little over $1,000 per month at the time - just over the income limits to qualify for Medicaid, food stamps, assistance with utilities, housing, or anything else; so, I had to pay full price for everything. My brother's solution for my dire financial situation (that he and my sister deliberately created) was, "Put on some makeup, dye your hair, find someone to date, and get a job!" The other $30K that I lost later on was because I had to take early distribution of my retirement benefits in order to survive forcing me to forfeit about 1/2 of that fund.

As far as the lawsuit, all lawyers are online now. Could you go to their website and write the lawyers in the class action suit and at least challenge why your were dropped from it? And also explain your family's interference with your medical care and being instrumental in trying to defame you and preventing you from receiving these benefits? Those doctor's also need to be reported to the Medical Board. Oh this is so awful Lynn. There is no challenge - to be part of that class-action suit, I had to sign a document that stated that I would abide by the court-ordered review decision.

I made the mistake of trusting my doctors and their staff members to respect and protect my rights and confidential personal and medical information, to do their jobs and advise me of any difficulties they encountered doing their jobs, to direct their questions to and discuss their concerns with me directly, to advise me of any apparent discrepancies between information I provided to them, information contained in my medical records, and information they received from any other source so that I could make certain that my medical records were accurate and complete as provided under HIPAA regulations, and to adhere to the highest standards of professional and ethical conduct. I will NEVER make this mistake again.

As for my doctors here allowing my siblings to interfere in my healthcare and giving them access to my confidential personal and medical information - I NEVER signed any authorization or release of any kind whatsoever that would permit my doctors and/or their staff members to do such a thing! When I first moved back here from up north, I wrote an emergency contact designation letter TO MY APARTMENT MANAGEMENT that authorized my apartment management to give my siblings access to my apartment, pets, vehicle, and personal property ONLY IN THE EVENT THAT I WAS HOSPITALIZED, UNCONSCIOUS, AND COMPLETELY INCAPACITATED. At no time since I have lived here have those 3 criteria been fulfilled; therefore, those authorizations were NEVER legally executable. Anyway, as soon as I learned that my brother had lied to me to TRICK ME into moving back here so he could coerce me into signing my Power of Attorney over to him in exchange for access to medical care, I revoked his authorization (2002); and as soon as I found out that my sister had been a part of this "crazy-making" scheme all along, I revoked her's, as well.

did you go to this site Lynn? Yes - thanks!
http://www.caringinfo.org/userfiles/File/Texas.pdf
when you have a durable power of attorney and living will in place, they can't touch you. Those forms are very specific and don't leave any room for misinterpretation or misrepresentation. A copy goes to your doctor as well. I even keep one in my car in case i am incapacitated in a wreck. I don't want my family anywhere near me except sis. The others are like circling vultures waiting to fly in to pick over the remains. They also appoint my neighbor as my guardian, beneficiary, and power of attorney. And, separate document, my Last Will and Testament pretty much says who doesn't get what and why not.

I have those covered, but as things stand now my family can still challenge them. That's why I want to get a permanent restraining order against them because that process will reveal the truth about the entire situation to everyone.


They have NEVER been authorized to participate in my healthcare in any way whatsoever, nor to have access to my confidential personal and medical information!!!

These healthcare providers and their staff members here allowed my abusive family members to manipulate them into becoming abusers themselves - and, now, the only way that they can protect their reputations and careers is by defaming and discrediting me and destroying my life - the very thing that my abusers wanted them to do. It's perfectly obvious to me, too, that the rest of the doctors in the local medical community intend to protect the reputations and careers of their colleagues at my expense, as well. The thing that hurts the worst is that all of the pain and damage that my family members and these healthcare providers have inflicted on me is deliberate, intentional, pre-meditated - none of them ever intended to do me anything but harm.

Personally? i would call everyone of the danm doctors and demand proof in writing why they thought they had a legal right to allow your family privy to your personal information. ohhhh i would be livid!!! You can also write to the State Medical Board that oversees the licenses of these so-called practitioners and report them. HIPAA laws are very strict Lynn and it's against the law to violate your confidentiality. At work, at every staff meeting, we are reminded: don't discuss your clients' diagnoses, you can be sued. They tell us that over and over.

I did that in early-2007 after I found out what my family had been up to; like I said, those doctors refuse to communicate with me. I didn't want to go after the doctors and ruin their reputations and careers because I know that they have been victimized by my deceitful, manipulative, abusive family members just as I have. But, since they all have been concealing their misconduct and protecting their reputations and careers at my expense all this time even knowing since at least 2007 that my family's activities were illegal and none of them have done anything to rectify the situation, I'm done. My compassion for them is all used up.

Thanks for your input, links, prayers, and support, DancingAlone - I need all the help I can get if I'm going to survive this. lynn09

i'm here my friend. i wish i was a lawyer, i'd help you in a heartbeat. but am holding your hand, saying prayers. take care Lynn.