(the following is a post I put up on a new blog, mostly for facebook friends who've known me a long time in real life...it won't make as much sense to anyone who comes across it on SGs, as most of you don't know me well, but it is an attempt to explain briefly a lot of the issues I've been going through for half of my life now)
Sixteen Years, Four Before the Crash
This blog entry is about what I'm going through right now, and what I've been going through for several years now. I'll try to summarize as best I can, but I'll still need at least several paragraphs, just for the basics. I'm not asking anyone for anything by writing this, it is merely an attempt to fully explain to several friends some issues that I have been vague about for a long time now. Most of below is a highly condensed version of my SSA case and genetic disorder, the two main issues that affect everything else.
I was born with a genetic disorder called Alport Syndrome. I manifested symptoms of hearing loss in my early teens, but the full effects of renal failure and everything connected to that did not hit me until just before my high school graduation, at the age of 17. In that 15-16 years, I've dealt with several health issues coming from the disease itself and the medications I'm required to take every day; including hearing loss, vision loss, lack of bladder control, headaches, daily aches/pains, high blood pressure, mood swings, depression, anger issues, infertility, and the recent clotting that I've been hospitalized for (twice). I have sleeping issues and nightmares on a frequent basis. This disease has affected my life in very awful and powerful ways. It is made worse by the fact that I look 'fine' from the outside. Internally, I am a goddamn mess. I have been for all of my adult life.
During those 16 years, I have worked several part-time jobs, as I was legally allowed to work a certain amount of hours without losing my dsability benefits. I have always hoped to one day find a line of work that would be compatible with my disability issues and ease off of disability permanently. During one of these part-time jobs a few years ago while working at WLKY, I was worked over my limited allowance of hours when I was assured they would be watched, and this came to the attention of the Social Security Administration*. The SSA sent me several confusing letters with conflicting information and threatening to stop my benefits, so I gave notice and left WLKY try and sort this out, as I could not do without medical insurance.
*- this is in no way the fault of my boss Dave Levy, for those of you know him (if anybody was sympathetic to my health issues, it was him)
I eventually broke down and asked a friend, Jaime Patterson, to represent me as a disability lawyer, because the conflicting information coming from the SSA was too much for me to make sense of. Soon it was overwhelming Jaime as well, and I quickly realized that my case was not a typical case. Over the time we've spent on this, we've discovered mistakes by past relatives (when I was a minor), the revelation that my transplant records no longer exist, the fact that a SSA worker from the Elizabethtown office tried to help me out by waiving something but actually making it worse, and that I had no less than THREE conflicting accounts at the SSA (mine, and ones where I was paid under my dead parents). I went to several appeals and a hearing, and all were denied. I am of the opinion that the judge did not even consider the information we presented him, and just wiped out everything to get this confusing and expensive case off the books.
Lastly, until a little over a month ago, I was under the impression that we had eventually won our hearing. The judge said he needed more time after the hearing to review the case, and I heard norhing back from him. However, my disability benefits had started up again after a couple of months of waiting. I called the SSA to ask, "Are my benefits reinstated?" The reply I got was "Yes, sir, they are." I was lied to by that SSA employee. A little over a month ago, my disability benefits were yanked again, with no warning. I got letters after this, informing me that my 6-month benefits period was over and my benefits would stop...in a few days, right before rent was due and meds were needed. No warning. I have not had any income except my limited part-time church job since then. I also do not have any medical insurance.
This is the first time I've been without medical insurance in my entire adult life. I just went to the hospital 4 months ago for clots and near-renal failure. I almost lost my transplanted kidney. I am in the worst physical shape I've been in since recovering from my transplant. I'm fucking terrified of whats going to happen to me in the next few months. I've asked people about possible jobs out of panic, knowing full well that I could end up hospitalized at any moment again for reasons beyond my control, and that I cannot physically handle working at any of the jobs I'm asking about. I don't know what else to do. Jaime is trying her best to help me work on a new application, but I have no faith that anybody at the SSA is going to even read it. I don't even want to file one, except I'm forced to as a basic survival mechanism. I have developed a burning hatred of the SSA after going through this shit.
The above is an extremely condensed version of what I've been going through for 15 years, and it came crashing down to it's lowest point a little over a month ago. The health part is the easiest thing to explain. The SSA case is a lot more complicated than above, but I think I hit all of the main bullet points.
I asked Jaime to read over this for me to assure I at least had the timeline straight, and she asked me to add footnotes from her, below.
Add this please (footnotes are by Jaime)
fn1: Yev's case is actually legendary at the local office of SSA, and I've heard anecdotally that the local office representatives pray that his case won't land on his desk. It usually takes about two hours to figure out the "status".
fn2: by Appeals Council review.
fn3: I (Jaime) have only felt hopeless on a few occasions in my life: notably, when I was pregnant at 17 with my now 17 year old daughter. I was afraid, ashamed and so desperate. I bought her clothes at garage sales and took every government benefit there was. I vowed then to help other people not be treated like shit by the government b/c basically the government can and will treat you like shit. I remember the fear I felt and the feeling like nothing I did or would do would matter. I can only imagine Yev feels the same way, without the kicking fetus.
I will eventually win this case, if it kills me. The shitty thing is, most people that are facing this continuing disability review nightmare cannot afford counsel. There is no government set aside to help people maintain their benefits, only to obtain them. Thus, it pretty much sucks to be them.
Sixteen Years, Four Before the Crash
This blog entry is about what I'm going through right now, and what I've been going through for several years now. I'll try to summarize as best I can, but I'll still need at least several paragraphs, just for the basics. I'm not asking anyone for anything by writing this, it is merely an attempt to fully explain to several friends some issues that I have been vague about for a long time now. Most of below is a highly condensed version of my SSA case and genetic disorder, the two main issues that affect everything else.
I was born with a genetic disorder called Alport Syndrome. I manifested symptoms of hearing loss in my early teens, but the full effects of renal failure and everything connected to that did not hit me until just before my high school graduation, at the age of 17. In that 15-16 years, I've dealt with several health issues coming from the disease itself and the medications I'm required to take every day; including hearing loss, vision loss, lack of bladder control, headaches, daily aches/pains, high blood pressure, mood swings, depression, anger issues, infertility, and the recent clotting that I've been hospitalized for (twice). I have sleeping issues and nightmares on a frequent basis. This disease has affected my life in very awful and powerful ways. It is made worse by the fact that I look 'fine' from the outside. Internally, I am a goddamn mess. I have been for all of my adult life.
During those 16 years, I have worked several part-time jobs, as I was legally allowed to work a certain amount of hours without losing my dsability benefits. I have always hoped to one day find a line of work that would be compatible with my disability issues and ease off of disability permanently. During one of these part-time jobs a few years ago while working at WLKY, I was worked over my limited allowance of hours when I was assured they would be watched, and this came to the attention of the Social Security Administration*. The SSA sent me several confusing letters with conflicting information and threatening to stop my benefits, so I gave notice and left WLKY try and sort this out, as I could not do without medical insurance.
*- this is in no way the fault of my boss Dave Levy, for those of you know him (if anybody was sympathetic to my health issues, it was him)
I eventually broke down and asked a friend, Jaime Patterson, to represent me as a disability lawyer, because the conflicting information coming from the SSA was too much for me to make sense of. Soon it was overwhelming Jaime as well, and I quickly realized that my case was not a typical case. Over the time we've spent on this, we've discovered mistakes by past relatives (when I was a minor), the revelation that my transplant records no longer exist, the fact that a SSA worker from the Elizabethtown office tried to help me out by waiving something but actually making it worse, and that I had no less than THREE conflicting accounts at the SSA (mine, and ones where I was paid under my dead parents). I went to several appeals and a hearing, and all were denied. I am of the opinion that the judge did not even consider the information we presented him, and just wiped out everything to get this confusing and expensive case off the books.
Lastly, until a little over a month ago, I was under the impression that we had eventually won our hearing. The judge said he needed more time after the hearing to review the case, and I heard norhing back from him. However, my disability benefits had started up again after a couple of months of waiting. I called the SSA to ask, "Are my benefits reinstated?" The reply I got was "Yes, sir, they are." I was lied to by that SSA employee. A little over a month ago, my disability benefits were yanked again, with no warning. I got letters after this, informing me that my 6-month benefits period was over and my benefits would stop...in a few days, right before rent was due and meds were needed. No warning. I have not had any income except my limited part-time church job since then. I also do not have any medical insurance.
This is the first time I've been without medical insurance in my entire adult life. I just went to the hospital 4 months ago for clots and near-renal failure. I almost lost my transplanted kidney. I am in the worst physical shape I've been in since recovering from my transplant. I'm fucking terrified of whats going to happen to me in the next few months. I've asked people about possible jobs out of panic, knowing full well that I could end up hospitalized at any moment again for reasons beyond my control, and that I cannot physically handle working at any of the jobs I'm asking about. I don't know what else to do. Jaime is trying her best to help me work on a new application, but I have no faith that anybody at the SSA is going to even read it. I don't even want to file one, except I'm forced to as a basic survival mechanism. I have developed a burning hatred of the SSA after going through this shit.
The above is an extremely condensed version of what I've been going through for 15 years, and it came crashing down to it's lowest point a little over a month ago. The health part is the easiest thing to explain. The SSA case is a lot more complicated than above, but I think I hit all of the main bullet points.
I asked Jaime to read over this for me to assure I at least had the timeline straight, and she asked me to add footnotes from her, below.
Add this please (footnotes are by Jaime)
fn1: Yev's case is actually legendary at the local office of SSA, and I've heard anecdotally that the local office representatives pray that his case won't land on his desk. It usually takes about two hours to figure out the "status".
fn2: by Appeals Council review.
fn3: I (Jaime) have only felt hopeless on a few occasions in my life: notably, when I was pregnant at 17 with my now 17 year old daughter. I was afraid, ashamed and so desperate. I bought her clothes at garage sales and took every government benefit there was. I vowed then to help other people not be treated like shit by the government b/c basically the government can and will treat you like shit. I remember the fear I felt and the feeling like nothing I did or would do would matter. I can only imagine Yev feels the same way, without the kicking fetus.
I will eventually win this case, if it kills me. The shitty thing is, most people that are facing this continuing disability review nightmare cannot afford counsel. There is no government set aside to help people maintain their benefits, only to obtain them. Thus, it pretty much sucks to be them.
VIEW 3 of 3 COMMENTS
thebeliever:
Sorry to hear about all the things you've had to deal with. I strongly suspect that it has made you an interesting and stronger person, though I suppose that's not a hell of a lot of comfort when you're dealing with a legal/medical one-two punch. Good luck, and persevere!
dryad:
We still have them here, but not til at least June.