The long & the short of it:
I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.
As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?
This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!
It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!
But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)
Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)
So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.
So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)
A million thanks.
Fibrogrrl
Showing posts with label Healthcare. Show all posts
Showing posts with label Healthcare. Show all posts
Saturday, November 22, 2008
Thursday, October 30, 2008
Healthcare: Is it as Important an Issue to Voters as it Should Be?
I was very happy to read this blog by Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, and even more happy to read the statistics she she cited about the importance of the healthcare issue to women voters:
I am lucky enough to have insurance right now, though it could be better. (I have to pay a $2,000 deductible to get any physical therapy, which I'm needing more and more lately.) But I will never forget how two years ago, when I lost my last "real" job, I was sick in bed at my parents house for weeks, fighting bizzare symptoms, mostly bed-bound because even standing up from a sitting position made me almost pass out, and fighting a deep depression at the idea of losing yet another job to my illness, and I forgot to pay my health insurance premium.
It was a COBRA plan, and they were more than happy to be rid of me, so they wouldn't take the payment, even a couple of days late.
So here I was, in a major crisis, having very frightening symptoms (like a pounding heart that actually kept me awake all night, not to mention the other of what I know to be POTS symptoms, but I couldn't go to the doctor. My only choice was the County ER, and that is hell in itself, feeling like that, I couldn't fathom sitting around for 12-16 hours waiting to be seen. Plus, at places like that, when they can't understand what your symptoms are right away, as long as you aren't obviously about to have a heart attack or turning blue, or actually passing out, they send you right back out to the waiting area.
When I saw the documentary Sicko, by Michael Moore, I was astonished at the types of healthcare available in other countries. Canada, Cuba, England, France... I so wanted to move to France after seeing that!
I will never forget watching the part where the British Doctor tells Michael Moore how he actually gets paid incentives for getting people into preventative care programs, getting them to stop smoking or lose weight, lower their blood pressure. Imagine!
And France...imagine living in a place where if your doctor determines you can't work, the government takes their word for it. Here, the Social Security Disability Judges are out to PROVE you can work, no matter what your doctors say. You think, Judges, okay, impartial, right? But umm...they're getting paid by the government to basically deny all but the most cut and dry cases. And Fibro and CFS, are far from cut and dry...so while health insurance companies recognize their validity if using it to deny insurance to someone, they won't always cover treatments because it's easy to debate a new treatment for something for which the cause is not known, and can be brushed off as not serious. And the government readily works the same angle.
Here, the Social Security Disability administration will deny you for not having enough evidence, despite the fact that you can't afford to see a doctor steadily. But isn't that why you're applying for Social Security Disability? Because you can't work, and need MediCare, to get your case better documented and maybe, if you're lucky, under control enough to get healthy enough to get back to work? (And even though I'm lucky enough to have insurance, I haven't always been able to afford my co-pays, or pay the things it doesn't cover. I was lucky enough to get credit from a great chiropractor, the only doctor that made me better a couple years back when I was having those crazy issues with my heart and all that...I saw him 2-3 times a week for months...but the SSA doesn't give any weight to that, because he's not a MEDICAL doctor. Although they legally tell you they will take it into consideration.)
Sicko does a great job of illustrating how all these travesties are going on here in our beloved U.S.A., where most people believe a sick person couldn't possibly become homeless because all their options run out. I was lucky. I had family to turn to at the last minute, when all hope was gone and I'd exhausted all my resources, recourses, and much of the little bit of health I had. I shudder to think how many people out there aren't...
So go rent Sicko if you want to learn more, and here's the link to Laurie Edward's blog for more on the importance of the issue of healthcare.
Laurie Edwards, A Chronic Dose
Her book is awesome, too by the way! Just finishing it up. Very helpful and real, great tips on relationships w/chronic illness, getting through school, and trying to find a career that will work for you. There's a link to the book on the sidebar to your right. She is one wise chicky!
"...the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.
The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues."
I am lucky enough to have insurance right now, though it could be better. (I have to pay a $2,000 deductible to get any physical therapy, which I'm needing more and more lately.) But I will never forget how two years ago, when I lost my last "real" job, I was sick in bed at my parents house for weeks, fighting bizzare symptoms, mostly bed-bound because even standing up from a sitting position made me almost pass out, and fighting a deep depression at the idea of losing yet another job to my illness, and I forgot to pay my health insurance premium.
It was a COBRA plan, and they were more than happy to be rid of me, so they wouldn't take the payment, even a couple of days late.
So here I was, in a major crisis, having very frightening symptoms (like a pounding heart that actually kept me awake all night, not to mention the other of what I know to be POTS symptoms, but I couldn't go to the doctor. My only choice was the County ER, and that is hell in itself, feeling like that, I couldn't fathom sitting around for 12-16 hours waiting to be seen. Plus, at places like that, when they can't understand what your symptoms are right away, as long as you aren't obviously about to have a heart attack or turning blue, or actually passing out, they send you right back out to the waiting area.
When I saw the documentary Sicko, by Michael Moore, I was astonished at the types of healthcare available in other countries. Canada, Cuba, England, France... I so wanted to move to France after seeing that!
I will never forget watching the part where the British Doctor tells Michael Moore how he actually gets paid incentives for getting people into preventative care programs, getting them to stop smoking or lose weight, lower their blood pressure. Imagine!
And France...imagine living in a place where if your doctor determines you can't work, the government takes their word for it. Here, the Social Security Disability Judges are out to PROVE you can work, no matter what your doctors say. You think, Judges, okay, impartial, right? But umm...they're getting paid by the government to basically deny all but the most cut and dry cases. And Fibro and CFS, are far from cut and dry...so while health insurance companies recognize their validity if using it to deny insurance to someone, they won't always cover treatments because it's easy to debate a new treatment for something for which the cause is not known, and can be brushed off as not serious. And the government readily works the same angle.
Here, the Social Security Disability administration will deny you for not having enough evidence, despite the fact that you can't afford to see a doctor steadily. But isn't that why you're applying for Social Security Disability? Because you can't work, and need MediCare, to get your case better documented and maybe, if you're lucky, under control enough to get healthy enough to get back to work? (And even though I'm lucky enough to have insurance, I haven't always been able to afford my co-pays, or pay the things it doesn't cover. I was lucky enough to get credit from a great chiropractor, the only doctor that made me better a couple years back when I was having those crazy issues with my heart and all that...I saw him 2-3 times a week for months...but the SSA doesn't give any weight to that, because he's not a MEDICAL doctor. Although they legally tell you they will take it into consideration.)
Sicko does a great job of illustrating how all these travesties are going on here in our beloved U.S.A., where most people believe a sick person couldn't possibly become homeless because all their options run out. I was lucky. I had family to turn to at the last minute, when all hope was gone and I'd exhausted all my resources, recourses, and much of the little bit of health I had. I shudder to think how many people out there aren't...
So go rent Sicko if you want to learn more, and here's the link to Laurie Edward's blog for more on the importance of the issue of healthcare.
Laurie Edwards, A Chronic Dose
Her book is awesome, too by the way! Just finishing it up. Very helpful and real, great tips on relationships w/chronic illness, getting through school, and trying to find a career that will work for you. There's a link to the book on the sidebar to your right. She is one wise chicky!
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