Hello....
It seems there have been several posts lately regaring people being on disability and it continues to shock me how many CFers have been accepted and are receiving disability with varying degrees of this disease. I feel like the minority.
I had applied several years ago and was denied, appealed, denied, appealed, denied, got a lawyer, went to court, denied, appealed, denied. I had exhausted ALL the appeals allowed.
At that time I was doing IV meds every year and had an FEV1 of around 55%. My weight was in about the 10th percentile and I wasn't able to work even part time without my health suffering terribly.
I was told at my final appeal that although I couldn't maybe work a labor-intensive job around fumes, I could in fact work a desk job. I was also told that since I'd not worked full time (I'd only worked part time and got sick even when I did that and tried to take a class or two in college), there was no way to know whether or not I could work full time. So, basically, the system (judge and Social Security Admin.) told me that I could work a desk job and how could I know I'd get sick since I'd only worked part time? I was crushed. I could barely work 10 hours a week and take ONE college course without becoming rundown and physically and mentally drained.
My doctors all wrote letters and apparently said all the "right" things that would usually get someone SSD. But, to no avail.
Well, when I read posts from people with far better FEV1 than myself (I'm still around 55% at baseline and around 67% after IV meds) and people who are getting SSD and still working (I get rundown even when I'm just taking a class or two at school at this point, so have stopped working and school entirely), how on earth do they get it and I get denied? Is there a special way to get this that I don't know about? I mean, personally I think CF in general (with our therapies and expenses and IV meds and other illnesses we deal with) should automatically fit into a category for SOME sort of federal aid. So, I'm not unhappy it has gone to other "healthier" CFers, but in the same respect, I feel wronged and have not worked for the past 3 years (part time or other) because I simply cannot tolerate it, and I get denied again and again.
According to the SSA's criteria for CF, my FEV1 liters do not match the necessary to be accepted (they were off last visit by around .10 liters), however, I am in the hospital once a year (lately more like twice) and have an active infection and do IV meds (oral and inhaled) daily (also a criteria, I think) So, what gives??? I'm so confused.
And, though I'm happy others who have far better FEV1s and energy than me are getting $$$ from the government, it irks me a little everytime I read it cause why isn't that me? I wouldn't even be able to work a portion of hours I'm allowed to work on disability if I wanted to. I know my body and know I get rundown and sick.... Even when we go on a vacation, it takes so much out of me I get rundown (and sometimes need IV meds), and that's not work!
Urgh... Sorry, I just had to vent. It feels like nearly everyone on these boards is on it and I've done ALL I could to be on it and can't. I hate to whine, but it feels like a royal kick in the nuts.
So, for those who are on it currently... What are your FEV1s? How often do you go in for home/hospital IV meds? Did you have to work full time first to find out it made you too sick to work? What else do you suggest I do? NOTHING has changed since those 7 years ago when I applied (my lung function should have probably even gone down further with my age and didn't), so am I just out of luck?!?!
Not only that, but I'm sure some will suggest to speak with my social worker at my current clinic. This is also a big problem... My DH is military and its very tough to get a good rapport with a new social worker every few years. They often have no idea where I've been health-wise and have no idea what kind of aid I would qualify for since my records currently would have to be read by the truckload from about 5 previous CF clinics. So, generally, when we PCS somewhere new I have to be the expert and tell them what <b>I</b> think, which when it comes to SSD, I have NO idea. And, they don't know me well enough to make an assessment.
Thanks for listening to my rant. Any suggestions would be appreciated.
Plus, just so you know I"m NOT referring to SSDI (that is based on income). I am only referring to Social Security Disability Benefits that you get from the federal govt when you can't work due to a disability... It is usually based on what you've paid into the system (I think) to determine your monthly payment.
Thanks, guys....
It seems there have been several posts lately regaring people being on disability and it continues to shock me how many CFers have been accepted and are receiving disability with varying degrees of this disease. I feel like the minority.
I had applied several years ago and was denied, appealed, denied, appealed, denied, got a lawyer, went to court, denied, appealed, denied. I had exhausted ALL the appeals allowed.
At that time I was doing IV meds every year and had an FEV1 of around 55%. My weight was in about the 10th percentile and I wasn't able to work even part time without my health suffering terribly.
I was told at my final appeal that although I couldn't maybe work a labor-intensive job around fumes, I could in fact work a desk job. I was also told that since I'd not worked full time (I'd only worked part time and got sick even when I did that and tried to take a class or two in college), there was no way to know whether or not I could work full time. So, basically, the system (judge and Social Security Admin.) told me that I could work a desk job and how could I know I'd get sick since I'd only worked part time? I was crushed. I could barely work 10 hours a week and take ONE college course without becoming rundown and physically and mentally drained.
My doctors all wrote letters and apparently said all the "right" things that would usually get someone SSD. But, to no avail.
Well, when I read posts from people with far better FEV1 than myself (I'm still around 55% at baseline and around 67% after IV meds) and people who are getting SSD and still working (I get rundown even when I'm just taking a class or two at school at this point, so have stopped working and school entirely), how on earth do they get it and I get denied? Is there a special way to get this that I don't know about? I mean, personally I think CF in general (with our therapies and expenses and IV meds and other illnesses we deal with) should automatically fit into a category for SOME sort of federal aid. So, I'm not unhappy it has gone to other "healthier" CFers, but in the same respect, I feel wronged and have not worked for the past 3 years (part time or other) because I simply cannot tolerate it, and I get denied again and again.
According to the SSA's criteria for CF, my FEV1 liters do not match the necessary to be accepted (they were off last visit by around .10 liters), however, I am in the hospital once a year (lately more like twice) and have an active infection and do IV meds (oral and inhaled) daily (also a criteria, I think) So, what gives??? I'm so confused.
And, though I'm happy others who have far better FEV1s and energy than me are getting $$$ from the government, it irks me a little everytime I read it cause why isn't that me? I wouldn't even be able to work a portion of hours I'm allowed to work on disability if I wanted to. I know my body and know I get rundown and sick.... Even when we go on a vacation, it takes so much out of me I get rundown (and sometimes need IV meds), and that's not work!
Urgh... Sorry, I just had to vent. It feels like nearly everyone on these boards is on it and I've done ALL I could to be on it and can't. I hate to whine, but it feels like a royal kick in the nuts.
So, for those who are on it currently... What are your FEV1s? How often do you go in for home/hospital IV meds? Did you have to work full time first to find out it made you too sick to work? What else do you suggest I do? NOTHING has changed since those 7 years ago when I applied (my lung function should have probably even gone down further with my age and didn't), so am I just out of luck?!?!
Not only that, but I'm sure some will suggest to speak with my social worker at my current clinic. This is also a big problem... My DH is military and its very tough to get a good rapport with a new social worker every few years. They often have no idea where I've been health-wise and have no idea what kind of aid I would qualify for since my records currently would have to be read by the truckload from about 5 previous CF clinics. So, generally, when we PCS somewhere new I have to be the expert and tell them what <b>I</b> think, which when it comes to SSD, I have NO idea. And, they don't know me well enough to make an assessment.
Thanks for listening to my rant. Any suggestions would be appreciated.
Plus, just so you know I"m NOT referring to SSDI (that is based on income). I am only referring to Social Security Disability Benefits that you get from the federal govt when you can't work due to a disability... It is usually based on what you've paid into the system (I think) to determine your monthly payment.
Thanks, guys....