Friday, August 12, 2005

Willie Wonka's squirrels are dragging me to the garbage chute..... 

....because this applying for disability shit has driven me nuts.

I'm researching as much as I can on how best to support my SSDI application on Wednesday, but the more I find out, the more upsetting the whole process becomes. Someone actually suggested to me that I not have vacation pix on the web because a judge could decide that since I went to Hawaii last year, I must not be disabled. Never mind that the trip was four months before I stopped working, that I had a month-long flare afterwards, that my fatigue caused me to doze off during meals and on tour buses, and that the pain from sitting on an airplane to get there and back drove me to tears. And that the only trip I took this year was to a local convention where Dan had to push me around in a wheelchair for three days. Most of the pix of the convention were taken from my wheelchair.

While I'm having a hard time believing Social Security would go to the trouble of looking me up on the web, the long term disability company probably WOULD do that. This company has done video surveillance on people who filed in the past, so web surveillance would not be out of the question. If they do start snooping around the web, I hope they find this blog, because most of my entries mention something about the reality of illness in my life.

Anyway, I've decided to remove all photos of myself from my gallery pages and websites. I am NOT going to take down the galleries as it took too damned much work to build them. And I'm NOT giving up the blog as it's my only link to many people who are concerned about my welfare. I have gone to a few message boards and have eliminated e-mail access and links to my websites, even though I feel like my work on them is being wasted if no one knows about them. I'll probably be scarce on message boards except to offer support. I haven't yet deleted all my gallery page links, but plan to finish that up tomorrow. So I won't disappear, but I may be slightly less accessible. And those of you who hadn't already seen a pic of me will be SOL.

In gathering pay stubs to bring to my Social Security interview, I noticed that the raise I was supposed to have gotten in January appeared and then disappeared. So the long term disability had been given the wrong pay scale by my employer, AND I was underpaid on my short-term disability to the tune of $400, a very expensive tune. It took six phone calls and five days, but I managed to get payroll to agree to send me a check for the $400, and got human resources to call the long-term disability company with the right pay scale figures. Now my only business remaining with my employer is to get paid for the 22 shifts of vacation they owe me. My manager was supposed to get back to me nearly a week ago.

Did get the last of the medical records from my rheumatologist today and have made copies of them. They will be the most important proof of disability according to SSDI. Called the ENT's office today about records since I only have a few. That doc moved at the first of the year and only took the last two years of my records to the new office. The other three years are in storage someplace, and I probably wouldn't have time to get them before Wednesday's SSDI appointment, so I asked if I could at least have test results from the last two years. It will really help my case if I provide a copy of my lip biopsy results as that was what diagnosed my Sjogren's. I don't have any records for my gastroenterologist except for the results of my endoscopy showing evidence of gastroparesis, but I did tell her last month that Social Security would be asking for them. I do have all of my records for three neurologists, some sleep study results and my neuropsyche exam. I probably should have worked harder at getting all of my records, but I got kind of complacent when I read Social Security's statement that they would obtain any records that I didn't already have. Then I found out last night that a lot of records never make their way into Social Security's possession because they don't try very hard to get them. Also, a lot of records are stored at facilities who charge a fee in advance for making any copies, and Social Security won't pay in advance. But I don't have enough time to get any more records sent to me before Wednesday. Hope it doesn't come back to bite me in the ass.

Did get an excellent idea in my research of asking Dan to make an affidavit as a witness to how my illness was impaired at work. He's gonna put together a letter about how I was falling asleep at my desk, any mistakes he saw me make, how often I missed work due to illness, physical limitations, etc. This can be considered valid testimony if it is notarized.

Did quite a bit of thinking about it and decided that I am going to include my own doctor visit notes with my Social Security application. Before every visit with a specialist, I type up a summary of what symptoms I'm experiencing, what treatments I tried since the last visit, and any concerns that need to be addressed. I started keeping copies of these notes in April 2004. I'm also going to include my description of a typical day for me that I wrote in June as it contains a lot of the information Social Security asks for in their function report. There's always the possibility that some of these statements could be mis-interpreted, but then again, I don't want to risk being denied due to lack of information.

I feel as though I'm back in college the week before finals, trying to study for an essay exam in which there are no right answers for a professor I've never even met. I can study and study, and I won't have any idea how well I did until well into the next semester.

Did run across something that pretty well sums up how I feel about the Social Security process right now: it's a petition for reform. I signed the petition and encourage anyone reading this blog to check it out:
Social Security Disability Reform

I'm not even gonna pretend to be strong about this. I'm depressed and humiliated and resent the way disability applicants are treated like criminals. My migraine, which did respond to massage and disappeared for two days, is back (although thankfully not nearly as bad as before). I am having scads of nightmares. I dream about being homeless, about being naked in public places where I am laughed at, about having to live in a monkey cage at the zoo. I even dream about dying from my illness all alone. I feel like a burden to Dan....he is terribly stressed out due to the uncertainty of our financial future, and I have no means to reassure him. I am continually fighting powerful feelings of worthlessness, even though I know in my heart that I must still be good for something. I awoke in tears this morning and have fought them a good deal of the evening. There have been a few occasions I've retreated to bed because I just couldn't deal with the reality of having so little control over the direction of my life. I've forgotten to take a shower three times in the past few weeks, and have forgotten to eat on several occasions. After eight years of valiant fighting, the illness is winning.

I did see my therapist today. It did help for several hours. But I can't help marveling at how sane I was before I stopped working. I'd give anything to be able to get up tomorrow and go back to work. Anything.

"You've got to get yourself together. You're stuck in a moment, and you can't get out of it." --U2

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