Monday, March 26, 2007

Rave of the Day for March 26, 2007: 

Linda Fullerton, President/Co-Founder of the Social Security Disability Coalition, was recently allowed to present testimony to Congress addressing the horrific backlog of cases awaiting judge hearings. Even though I managed to get approved for SSDI, there are hundreds of thousands who haven't yet, and they are extremely fortunate to have someone articulate speaking on their behalf who has also undergone the grueling process. I ought to be doing advocacy like this myself, and I hope to eventually.

Subcommittee on Social Security - Hearing on Social Security Disability Backlogs - Wednesday, February 14, 2007

Also, if you haven't yet, please visit the Social Security Disability Coalition website on my links list.

Sunday, March 25, 2007

Junk about junk..... 

Have been scarce on the computer again because I've tried to dedicate more time to unpacking. When I realized recently that we've been in this house for a quarter of a YEAR now and I still don't know where stuff is, I decided to quit waiting for some energy to return and push myself a bit. My progress is still maddeningly slow by most people's standards (including Dan's), but every box I empty is one step closer to victory.

Dan has volunteered/threatened to just empty all the boxes, stash the contents wherever and let me sort it out at my leisure. I'm trying to keep him from doing that because I'll never be able to find anything. Usually when he goes into a cleaning frenzy, he "tidies" first and then tries to remember where he put something later; if I do it myself, it may take me until Christmas, but I rarely lose anything.

Actually, at the moment, I'm proud of myself because I finally finished the command center and the bedroom next to it, and it was a bitch. I basically took records, receipts and the like that had been scattered throughout a 9x9 bedroom, a 9 foot wide closet and an 11x13 bonus room and squeezed them all into a filing cabinet, a desk and a closet that's only three feet wide! I still have a pile on the desk of things involved with projects on the computer (like e-mail addresses of people I promised to write to after I got moved in), but the stack is only about three inches high versus the three separate piles a couple of feet high of unfinished stuff I had in Denver.

The hardest thing besides the lack of energy is the forcing myself to throw things away. I did some de-cluttering last May when we were getting the house in Denver ready to put on the market, and some more when packing up in November, but it wasn't nearly enough. And I will freely admit I'm still keeping way too much stuff now, but some progress is better than none.

I have a rather discouraging legacy. I don't consider myself outrageously materialistic, but most of my family, both on my mother's AND my father's side, has serious pathological pack rat issues. I don't mean things like saving newspapers to recycle them, I mean things like hanging onto receipts so ancient that they can no longer be read and actually weeping when someone tosses it into the trash.

So I am actually kinda brave in comparison, but it is still difficult and exhausting, and I keep changing my mind and fighting with myself over things. For instance, I emptied over a dozen shoeboxes' worth of receipts and filed them into the new cabinet, but I couldn't bring myself to toss out the empty boxes, thinking I'd still need them for something. After several weeks, I finally put them in the garage tonight so that Dan can break them down for recycling at some point.

One thing that seems to help is black trash bags. When I'm feeling conflicted about tossing something that could be even minutely useful, I throw it into a black trash bag so that I cannot see it, and I tell myself that it is now trash that absolutely cannot be retrieved. If I leave items out where I can view them, I'm more likely to decide to keep them.

I'm far from perfect. I did manage to toss out dozens of ancient file folders that I think may have belonged to my mother in the 1980's, but I have kept blank paper of every conceivable kind that is at least as old. My rationalization is that being a writer, I will always need something to write on, but I will never have to buy paper again, heh heh.

One thing I'm pleased about is the pile I have made of things for Dan to shred. If I piled it up single file, it would easily reach the ceiling. The only question is, how did I manage to move a dozen times and STILL have insurance EOBs from 1986??

I do have a game plan for the rest of the unpacking. I'm going to head upstairs as soon as tomorrow if I'm up to it and start puting away the three remaining bookcases' worth of books and then get to work on the collectibles/mementos. When that's done, it will be back downstairs to organize my hundreds of CDs/audio cassettes/vinyl albums.

The wall hangings won't go up until the other stuff is done because they're all packed together, and I'd like to distribute them evenly around the house. I'm saving the scrapbook/photographic stuff for the very last because it's going in the back corner of the basement. When I have done all that, I will declare the house unpacked and get back to things I'd rather be doing like blogging and reading and working on my websites and other forms of communicating with the world at large.

So me not posting much might be a good thing, at least it will be if it means I'm using the time to finish moving in. Gotta keep reminding myself that empty boxes are a sign of accomplishment.

One. Box. At. A. Time.

Saturday, March 17, 2007

Quickie movie mini-reviews..... 

Have viewed two more DVDs via Netflix. My service got disrupted for over a week just because we had a blizzard. The lazy-ass postal worker in my neighborhood wouldn't deliver to our mailbox because the snow plow only cleared the middle of the street and poor Mr. mailman could't reach our mailbox from his truck!

First up was "Thank You For Smoking". A tobacco industry lobbyist, slick as Teflon and just as bright and shiny, manages to escape from serious damage to his reputation despite kidnapping, near death, an expose by a sexy journalist, and a Congressional hearing. The guy can pretty much out-spin a tornado and keep a smile planted on his face the entire time. Along the way, he manages to bond with his son while teaching him the value of thinking for himself. Hilarious, well-written, excellent cast. I wonder if the Bush camp took lessons from the book it was based upon? I recommend it for anyone with a good sense of irony.

Then Thursday, I watched the Carlos Mencia DVD "No Strings Attached". This is a stand-up comedy performance recorded in San Francisco last year. Not for the faint of heart or narrow minded. Mencia takes no prisoners. He points out how boring and condescending political correctness has always been and leaves no minority group unscathed, including his own. He has a bit in which he describes his refusal to give a guy in a wheelchair special treatment, and just when you're thinking he's shameful for this, he points out that the man in the wheelchair thanked him for paying attention to the man in the chair and not the chair itself. When Mencia goes on a rant about how society treats the disabled as though they are invisible, he's telling the uncomfortable truth. And that's the basis for most of his stand-up routine: uncomfortable truths that are funny whether you want to admit it or not.

Should get back to unpacking the bedroom next to the command center so I can get the Gazelle machine set up, not that I have the energy to use it yet, heh heh. I keep finding more and more stuff to put in the filing cabinet I bought; I would estimate it's about 90 percent full now. It's turning out to have been a much better investment than I would have thought possible.

More later.

Thursday, March 15, 2007

I pulled a Britney Spears! 

Well, not quite. My haircut is longer by about an inch, heh heh. So I look more pixie-ish and less military than she does.

My rationale was that I was bored with my hair, and I promised not to spend money having it colored anymore, so what else could I do that was cheap but interesting? I had in fact asked to have it extremely short and spiky the last time it was cut in January, but the woman at the ubiquitous chain hair place I'd gone to only knew how to make me look like every other female in Sioux Falls with a cropped 'do. Not awful, but way too conservative for me.

So I went to a different place today, oddly enough in the same mall with the same prices but not part of a large chain. I found a photo of something similar to what I had in mind, showed the stylist, and she was delighted! I guess she doesn't get too many women coming in asking for something bold, especially when it's still winter.

And she wasn't timid at all, cheerfully hacking away with the scissors and then getting out the electric trimmer thingy (um, can you tell I've never used one before?). Gone was that lifeless chunk of fringe in the back, gone were those unmanageable wings on the sides, and the top finally got short enough to spike! What was left was just long enough to give my face some definition but not long enough to lie flat against my skull like usual.

I appear to be a different person! I think I look a few years younger and a bit mischievous. Not that I'm capable of much mischief anymore, but no harm in having some fun with my hair.

I had the stylist completely spike it out just to see what it would do. I imagine I'll probably do the usual fluff and go most of the time, but I like knowing my options. I do have some styling products at home for those occasions when I want rock and roll hair.

Here's a surprise: I think my ears are really cute! A bit smallish, but they don't stick out, they're not mis-shapen in any way, and they actually look good with no hair covering them. And now I'll have a chance to really show off my extensive earring collection.

My face is a bit on the long side, but it doesn't look as strange without hair as I thought it might. I think it helps that I'm not obese anymore because when I was heavy my face was too round to pull off something like a buzz cut. I do think most women have to feel pretty comfortable with themselves before they go for such a butch look, though.

Dan says my hair's really cute! I didn't realize it until after he got home from work tonight, but he and I look a bit more alike now. At least I don't have to shave my face, heh heh.

Ok, I did have Dan take a photo, but I've never been able to get an image to post on this blog. I'll give it a shot. I guess you'll know if it worked if you see a goofy grinning brunette somewhere near this post.

So nice to have hair-apy at last.

Monday, March 12, 2007

The lesser of two rheumatologists, I mean evils? 

I got a very surprising letter in the mail over the weekend. It was from the first rheumatologist I saw in Sioux Falls, the one I went to in January. This was the guy who told me that I didn't have Sjogren's, that Sjogren's is never disabling and doesn't cause arthritis, that most of my symptoms are from fibromyalgia only, and that the arthritis I do have is from "old age".

It seems that he got a letter from one of my former rheumatologists in Denver who is a famous expert on Sjogren's. Former doc informed current doc that while my bloodowrk is negative, my positive lip biopsy plus undeniable symptomology put me in the "probable" category for Sjogren's syndrome. I won't argue with that because it absolutely fits the diagnostic criteria.

So Sioux Falls rheumy admits I should continue to be treated for Sjogren's even though he doesn't believe I will experience extra-glandular activity, which is ludicrous because I already HAVE extra-glandular activity! The neuropathy, vasculitis, severe reflux, gastroparesis, horrendous fatigue, Raynaud's and neurological symptoms are indicative of the disease affecting my entire body, not just my eyes and mouth. And he didn't say anywhere in his letter whether he has changed his mind about whether or not Sjogren's can be disabling.

Sioux Falls rheumy has agreed to keep me on the Restasis, Plaquenil, and Salagen but did not mention whether he'll continue to prescribe the Mobic which helps my joints. He wants to monitor me on a yearly basis whereas I had been checking my liver and kidney function every three months because of all the medication I'm on. I'm hesitant to see a rheumy so infrequently because I'll be quite lacking in the documentation that SSDI and my long term disability insurance company require.

So while it is a good thing that this rheumy decided to agree with my Sjogren's diagnosis, I don't know if it is enough to persuade me that this is the doctor I want to decide my medical future. How's he going to respond to queries about my ability to work if he only sees me once a year? And even if he saw me more often, would he acknowledge that I am indeed disabled?

On the other hand, the rheumy I saw a few weeks ago is less experienced than rheumy #1, absolutely convinced that I must be lazy just because I have fibromyalgia and insists that my lip biopsy was inadequate despite evidence to the contrary. I don't think she would be any more likely to support a disability claim than the other guy. She wanted me to come in every six months, which would provide more of a chance for me to demonstrate that my limitations are not exaggerated.

Do I go with the board certified guy with outdated notions about Sjogren's or with the woman who hasn't had enough patients to see firsthand the consequences of exercising oneself into a flare? It really is a choice between the lesser of two evils. Which doc would be less of a jerk in the long run?

I see my primary care doc tomorrow, and I will mention my dilemma to her and ask for her professional advice. But ultimately, I suppose the decision is mine to make. I really miss all the choices I had in Denver.

Does anyone have a crystal ball I can borrow?

Friday, March 09, 2007

Now I've seen it all! 

This is a multi-part post. First, please read the following outrageous and infuriating article, and then return here to read the rebuttal by the co-founder of the Social Security Disability Coalition (and please feel free to visit her website at your leisure; it is in my Links list). At the end of her article, I'm adding some comments of my own.....

Social Security provides tax-paid golden disability for job slackers

Social "Insecurity" Disability - Warning To All Americans – This Could Be You!

My name is Linda Fullerton and I’m President/Co-Founder of the Social Security Disability Coalition. I’m writing in response to the article published 3/5/07, by Melanie Scarborough entitled “Social Security Provides Tax-paid Golden Disability For Job Slackers.” It’s obvious to me that Ms Scarborough is totally out of touch with reality here, and failed to do the proper research on the subject that she chose. Sadly, I must also say that the majority of the people in this country think like Ms Scarborough, because the media for the most part only chooses to print pieces like hers, and fails to tell the American people what is really going on, since it would be too scandalous to do otherwise. I only hope that Ms Scarborough and those who think like her, never have an accident or become ill themselves, and have to apply for this help, because I assure you, they will be writing a different story! I think the time has come for the American people to get educated on this topic since it affects almost every citizen of this nation, and yet they know almost nothing about it, as evidenced by Ms Scarborough’s article.

You may be wondering how I know about these things. I was very unaware of this problem myself, like most people, until it suddenly happened to me. Many years ago I almost died, and continue to battle several incurable diseases, which have caused me to be permanently disabled and unable to work. Due to the government fraud, negligence, incompetence and backlogs I encountered, I lost all my life savings and pension money, and will never be able to recover from the financial, physical and emotional devastation that was caused by the process of filing for my own SSDI benefits in addition to battling my illnesses. My personal horror story can be found here:
A Bump On The Head

Social Security Disability Insurance/SSDI is a disability insurance plan administered by the Federal Government. If you should become sick/injured and can no longer work, it provides a financial resource to help you survive until you reach retirement age, at which point SSDI benefits automatically turns into regular Social Security retirement benefits. This is a Federal insurance policy, not a hand out like Ms Scarborough would like you to believe. It is not a reward, golden parachute or jackpot by any means and I would bet that Ms Scarborough would be hard pressed to survive on it. It’s supposed to be a safety net for millions of disabled Americans. Unlike her article states, it is not easy to get these benefits at all and I firmly believe (while nobody from the SSA or Congress will ever admit this), the SSDI program is purposely structured to be very complicated, confusing, nebulous, and with as many obstacles as possible from beginning to end, with the deck stacked against the claimant from the very start. This is in order to discourage you, hoping you “give up or die” trying to get benefits you’ve paid for all your working life! That’s how the government systematically robs your money and uses it for other purposes.

This program originally set up to help the disabled, in fact, is causing devastating, irreversible harm to both their health and financial wellbeing. The SSA instead, has been systematically destroying disabled Americans for decades, and Congress as a whole has failed miserably to do anything about it. This major ongoing problem within the State and Federal government is so scandalous, it should be on the front page of every newspaper, and on every TV/Radio news channel in the country. This is a very well kept secret in this country, that our government doesn’t want you to know about, yet they are taking money out of your paychecks every week for it. Unfortunately what you don’t know in this case, could be very detrimental to your health and financial wellbeing.

While the majority of Americans were shocked at the reaction of the Federal government in the aftermath of hurricane Katrina, I wasn’t surprised at all. I have seen the horrifying results of their incompetence on a grand scale for the past few years. Nowhere is this more evident, yet rarely mentioned, than in the way the Federal government/Social Security Administration treats the disabled population of this country. Americans saw in a major way since hurricane Katrina struck, how the poor and disabled were left to die in the streets when they needed help the most. I shudder to think of how many more lives will be further ruined or lost, when the mentally and physically disabled victims of Katrina, other natural disasters, 9/11 victims who survived that day but are now disabled and facing a similar fate, Veterans and the millions of other disabled Americans, encounter their next experience with the Federal government as they apply for their SSDI/SSI benefits. There are cases of Veterans rated 100% disabled by the VA who get denied their SSSDI benefits and end up living in poverty or even homeless on the streets. Horrible treatment for those who protect and serve our country.

In fact disabled Americans who apply for SSDI benefits, at a time when they need help the most, are often treated like criminals. The general feeling, which Ms Scarborough has mistakenly helped to further generate, is that they’re frauds trying to scam the system. In fact the percentage of claims that in the end, aren’t legitimate is very miniscule. Nobody in their right mind would want to go through this process, and then live in poverty on top of their illnesses, if they could in fact work. In our country you’re required to have auto insurance in order to drive a car, you pay for health insurance, life insurance etc. If you filed a claim against any of these policies, after making your payments, and the company tried to deny you coverage when you had a legitimate claim, you would be doing whatever it took , even suing, to make them honor your policy. Yet the government is denying Americans their legitimate SSDI claims everyday, and everyone should be outraged!

Disability benefits determinations should be based solely on the physical or mental disability of the applicant. Neither age, education, or type of work experience should ever be used when evaluating whether or not a person is disabled, as long as they meet the medical and non-medical requirements for receiving benefits (work credits, citizenship etc.) If a person cannot work due to the severity of their medical conditions – they CAN’T work no matter what their age, or how many jobs or educational degrees they had, yet these are factors used to deny a claimant their right to collect disability benefits.

Ms Scarborough is very judgmental when it comes discussing the impairments that qualify a person for disability benefits. She fails to mention anywhere in her article, that she has any sort of medical degree, making her an expert in that field. She, nor anyone else has the right, or knowledge to judge another person’s health problems. Only those who actually suffer from these ailments, and their physicians, can possibly know what it is like to deal with these conditions. She chooses to insult the disabled citizens of this country further by claiming that they are frauds, when she states “more than 1.3 million claims — indicate how many people are trying to take advantage of the system.” I actually submitted written testimony to the Congressional hearing on disability backlogs that Ms Scarborough refers to. Her comment that “genuine disabilities are relatively rare,” holds absolutely no merit, and again shows that she has failed to do her homework as a journalist.

Yes I’m also well aware as I write this, that there’s some who’ve abused the system and that’s a shame, because it casts a bad light on those who really need this help. It is an extremely small percentage, and there are ways to “filter” them out, without causing harm to legitimate claimants. Social Security, SSDI, SSI and Medicare are great programs when they function properly, and have helped millions of Americans who may never have survived without them. It’s time that the government fixes the problems, so that those who really need this help can access it as soon as possible, instead of being treated as frauds, and criminals on trial, when they need to file a claim for benefits. Nobody in their right mind would want to live under the conditions that the majority of SSDI/SSI claimants and recipients are forced to endure. The majority would much rather have their health back and the jobs that once had before their lives were changed by illness or accidents. I am sure that any corporation in this country who ran their business this poorly, would be out of business in it’s first year!

If you have any doubt what I am saying here, you can read the horror stories of thousands of disabled Americans from all over this country on my organization’s website and on our petition to the US Government at:
Social Security Disability Coalition – offering FREE information and support with a focus on SSD reform:
Social Security Disability Reform Petition – read the horror stories from all over the nation:

I think our sites prove beyond a shadow of a doubt, what is really going on, rather than anything that Ms Scarborough has to say. SSDI claimants were once hard working, tax paying citizens with hopes and “American dreams” but due to an unfortunate accident or illness, have become disabled to a point where they can no longer work. Because of that, they’re often considered "disposable" people by general and government standards. In addition their cries and screams are often ignored, many preferring that they just shut up or die. Does that mean they’re not valuable to our country, or give the government/society the right to ignore or even abuse them? A country is only as strong as it’s most vulnerable citizens, yet this program preys on the weak, decimating the disabled population even further. I ask that you please urgently contact all your elected officials and the media on this issue, as millions of American’s lives depend on it. We are your mothers, fathers, sisters, brothers, children, friends and acquaintances and remember that disease and tragedy do not discriminate on the basis of age, race or sex. Wake up America! If you think this couldn’t happen to you – you could be DEAD wrong!

NOTE: This article is dedicated to Dane Edwards, who applied for Social Security Disability benefits in October 2006, because of terminal lung and brain cancer. When he’d call to check on the status of his claim he was told that he must wait like everyone else, and that he should stop calling to inquire about the status. He obviously didn’t have the luxury of time. Dane will no longer be calling and he never received his benefits. He was 53 years old when he died on February 13, 2007 - his SSDI disability claim still waiting for approval. Unfortunately I must report that stories like his are becoming more and more common.

Linda Fullerton
President/Co-Founder - Social Security Disability Coalition

The klbrowser commentary portion begins here.

I agree with pretty much every word Ms. Fullerton said. I just want to add a few views of my own as the Examiner article is just too objectionable for me to ignore.

The entire piece is misguided, even the title. Tax paid benefits? Not if you have a spouse that works; depending on your spouse's income, up to 85 percent of SSDI benefits are taxable.

Golden disability? My SSDI payments are less than a third of what I had been earning when I'd been able to work, and that is considered generous by SSDI standards. More like rust than golden.

The phrase "job slackers" is also inaccurate. You don't even qualify for SSDI benefits unless you have enough credits; for the most part, that means you have to have worked at least five of the past 10 years in a situation where you're paying into Social Security to get a penny out of its disability program. A true slacker would be SOL.

Now, onto the article itself. What on earth does a corporate compensation package have to do with disability? It's not like a CEO gets severance or any special consideration when they become too ill or injured to work; they are subject to the same financial limitation imposed on all who apply for SSDI.

In fact, a CEO would be far LESS likely to be approved for SSDI than a low-income manual laborer. The federal government considers whether an applicant has skills that are transferable to another type of work or whether they are educated enough to learn to do something less demanding. A CEO with a master's degree might be able to re-train to a simpler job, while a heavy-equipment operator with a fifth-grade education might not be able learn how to do sedentary work at a computer.

The example the article gives of the coach who blows out his knee and collects disability is ridiculous. Social Security would probably deny this person, claiming he can coach on the sideline without running, or can do another type of sedentary job. It is obvious the author of this article did no research on SSDI at all.

Since when did the disabled become undeserving? Most of them worked hard for as long as they could, applying for benefits only after they exhausted every job option. Cut them some slack; is it really fair to describe a person dying of cancer as undeserving of some financial consideration??

The story of the Newport News pipefitting apprentice who was granted disability for a wrist injury is the exception rather than the rule. It is entirely possibly that when this woman is up for review, her SSDI benefits will be terminated and she will be expected to go into another line of work not using that wrist. The author of the article fails to mention whether the woman had any sort of mental impairment that prevented her from re-training, which could also be a factor.

According to the author, SSDI's guidebook walks people to the disability pot of gold at the end of the rainbow. Has the author ever tried to live on $900 a month? If she had, she would realize that, basically, the government requires you to be unable to earn more than poverty level before you can even apply for disability benefits.

The author presents a very misleading picture of Social Security's Blue Book. Yes, there are a lot of impairments listed because many ailments or injuries can be disabling. But just having one of the named conditions does not guarantee approval of benefits.

The quote from the Blue Book about musculoskeletal conditions, “inability to walk on the heels or toes, to squat, or to arise from a squatting position may be considered evidence of significant motor loss” is only PART of the requirement for disability for that condition. The applicant must meet the criteria in Listing Level Severity for the type of condition described as well as a very specific set of limitations outlined as Residual Functional Capacity to be considered. The diagnosis must be made by an appropriate medical specialist and must be substantiated by appropriate tests such as x-rays, blood work, biopsies, MRI, etc in order to meet most of the Blue Book criteria.

The form of dermatitis described in Social Security's Blue Book is NOT dishpan hands. It is wheals, papules and blistering extensive enough to limit function of the area involved (as in hands that cannot withstand any pressure applied to the skin), AND it must not be responsive to prescribed treatment. Up to 20 percent of these cases have an associated digestive disorder.

The author also demonstrates an astonishing amount of ignorance regarding mental illness as a disability. A person with severe bi-polar disorder or schizophrenia may appear to the uninformed as a jerk, but they can be just as unable to function at a job as a person with a physical malady or injury. Again, the Blue Book has very specific Listing Level Severity and Residual Functional Capacity requirements.

When evaluating an applicant's “concentration, persistence or pace,” at their job, Social Security compares it to the level of functioning the applicant had PRIOR to the onset of their illness or injury. It must be markedly different, not merely a bit slower than the applicant's co-workers. This might be documented by an increase in work-related errors in a worker whose record was exemplary until they became ill or injured.

The backlog of 1.3 million claims is NOT indicative of bogus claims. Anyone who had done their homework would know that Social Security has a severe shortage of personnel with which to handle claims. The other big reason for the backlog is that Social Security routinely denies up to 80 percent of LEGITIMATE initial claims, thus ensuring that these claims remain in the system for reconsideration, judge hearings or whatever it takes get them approved as they should have been in the first place.

The author lists only three potentially disabling conditions: MS, Down's Syndrome and blindness. There are upwards of 80 autoimmune diseases besides MS, many of which are potentially disabling and even fatal. And any uneducated person knows that cancer has that potential as well, so the 1.3 million disability applications is actually not artifically high at all.

The so-called extra expense to taxpayers of an award of backpay is ludicrous. An SSDI applicant usually has ZERO income during the entire time they wait to be approved for benefits, a wait that can last years. Backpay is simply giving them the benefits they were due, minus a five months' benefits for a waiting period, minus 25 percent for legal fees if necessary, and does NOT include interest for the period these benefits were withheld from the applicant.

What sort of expertise does Melanie Scarborough have? There were no quotes from medical professionals, legal professionals or actual disability claims examiners. I think it is she who is doing the scamming.

There are other factors she doesn't consider in her criticism of disability benefits recipients and applicants. One is that a reputable medical professional is unlikely to write up bogus documentation so a patient can defraud the government. Social Security will not approve benefits without adequate medical records, no matter how sick the applicant is.

Ms. Scarborough also conveniently ignores the fact that a person who qualifies for SSDI benefits may have astronomical medical expenses that eat up most or even all of their "windfall". An SSDI recipient must wait TWO YEARS before he or she is eligible for Medicare. And then payment for Medicare comes out of the SSDI benefits, eating further into that "jackpot".

This article is an insult to everyone who calls himself a journalist.

Monday, March 05, 2007

Rave of the Day for March 5, 2007: 

I have not intentionally hiding or anything, but I have been spending an inordinate amount of time trying to resolve my dispute with the security system company I had in Denver. I wasted over two months trying to negotiate via the Better Business Bureau. As there appears to be no way to fix this that isn't going to cost me more money, I've decided to just issue a public service announcement via a consumer complaint website and call it like I see it:

Rip Off Report Apex/APX Alarm

I will probably get another smarmy reply from their Director of Legal Affairs, but it isn't going to get me my money back, so I'm done. The Better Business Bureau will only handle this further if I agree to shell out $75 on an arbitrator.

At least my little report may protect someone else from extortion and lies.

Friday, March 02, 2007

Belated view of the Oscars..... 

Finally, I have the actual time and a teensy bit of energy, so I can chime in on the Academy Awards even though it is extremely old news by now. Welcome to my world of unintentional delay. I'll be lucky to make it to my own funeral on time, heh heh.

Dan and I kept our usual tradition of grabbing a list of the nominees and selecting what we thought would win. We're usually at quite a disadvantage due to not having seen mosst of the movies in question, and this was no exception. We had both seen "Pirates of the Caribbean 2", "The Devil Wears Prada" and "United 93"; Dan had also seen "Superman The Return" and "The Black Dahlia".

Dan kicked my butt with his picks. He got 13 right, while I only predicted nine correctly. Both of us did better than usual, though.

There were some definite shockers this year, like Alan Arkin for Supporting Actor, "Little Miss Sunshine" for Original Screenplay over "The Queen", and Melissa Etheridge's song for "An Inconvenient Truth" instead of something from "Dreamgirls". But I knew that when Scorsese got Best Director that "The Departed" was a shoo in for Best Picture. And there was absolutely no doubt about Helen Mirren as Best Actress.

About the show itself: the opening segment was painfully slow and long, and Ellen Degeneres was quite obviously nervous. But she gained confidence as the show went on, and the later segments, especially the ones with Scorsese and Eastwood, were quite amusing. I think overall she was very good, and I hope that she will be given the chance to host again.

Moments I liked: Will Farrell and Jack Black singing to Helen Mirren, better than usual Original Song performances, Martin Scorsese receiving the Best Director award from Coppola, Spielberg and Lucas. Moments I disliked: every time the orchestra drowned out a speech. Best part of the whole show: Forest Whitaker's moving acceptance speech, which is posted in its entirety a few posts below this one.

Fashion critique: no truly dreadful designs, but what was with all the atrocious colors? Shades of brown, orange, yellow and green....Bouncy, I mean Beyonce, and Kate Winslet looked like they were wearing pistachio pudding. Both Beyonce and Jennifer Hudson wore much more attractive red dresses during their Best Song performances.

Meryl Streep and Jessica Biel were dressed so casually they looked like they were going to a backyard barbecue. And does no one curl their hair anymore? The flat hair was drab and unappealing on several women.

Nicole Kidman's fire engine red dress just was too much for her pale complexion. And that bow on her right shoulder just looked silly and ruined an otherwise elegant style dress. The only thing that was worse was Jennifer Hudson's space suit jacket, which thankfully she removed once she got inside.

Kudos to Helen Mirren, who managed to look sophisticated and a bit slinky at the same time. Emily Blunt wore a gorgeous blue number that totally outshown Anne Hathaway's dreadful bow-tie top dress when they presented together. And for the pantsuit crowd, Melissa Etheridge looked great in silver grey.

The amateur critic has spoken.

Thursday, March 01, 2007

It happened AGAIN! 

WARNING: This post is gonna contain profanity! I am too upset to be polite on my own blog. I am at my wit's end here.

I went to the new rheumatologist yesterday. I made sure I had made a copy of ALL tests, procedures, previous rheumatologist office notes etc. as requested and hand delivered them to the office the day before. At the top of the pile was my lip biopsy report so there would be no doubt as to its existence.

It was an early morning appointment, and I was extra fibro-fogged and extremely nauseous, but I didn't think it would be a problem as maybe this time the extent of my fatigue would be apparent. But it turned out to not be a factor whatsoever as practically the first words out of this doc's mouth were: "So, what makes you think you have Sjogren's?" I replied, "Umm, the lip biopsy report's right in front of you!"

She glanced at it briefly, sniffed and said, "This isn't diagnostic enough. It doesn't describe the lymphocytes except to say they exceed fifty in number. You should have it done again." My jaw dropped to the floor! Lip biopsies are generally only done as a last resort as they are invasive and carry a risk of permanent nerve damage to the face; they are NOT something to do on a whim!

She then asked why my ENT decided to do one even though my bloodwork had been normal. I described to her the chronic fungal infections and dryness in my sinuses, the signs of extreme dryness of my mouth and tongue, the chronic lesions, the problems swallowing. She was not impressed and stated that lots of things cause dry mouth.

After that, the doc asked why I thought I had Reynaud's. I tried my best to describe it to her. She actually did take note of it.

She wanted to know what hurt the worst. My fibro-fog was kicking my butt, and after I mentioned that I pretty much hurt everywhere, I fumbled some reply about low back and feet. I know I should have told her about the joint pain and stiffness, but I don't think she would have believed me anyway as the anti-inflammatory I'm on reduces these symptoms so that they are less obvious.

She then began the physical exam. She wanted me to tell her when somethng hurt, but she was also asking me questions while she was poking me and flexing me in all sorts of directions. I would start to answer her, and then whenever something was incredibly painful, which was every few seconds, my brain would completely go blank, and all I could do was wince or shout, and I finally told her that I could not converse and be poked at the same time.

Finally, stopped whacking and bending me and cheerfully pronounced that I had all 18 fibromyalgia tender points. I gently replied that, yes, I'd had them for at least seven years. She then launched into a standard speech about what fibromyalgia was, not a word of which was news to me.

But she went further and claimed that all the symptoms I was attributing to Sjogren's were probably caused by fibromyalgia and that's all that was wrong with me. Flabbergasted, I asked her if she was telling me that fibromyalgia causes gastroparesis. She hesitated and then said, "Well, not typically."

She went on to inform me that all I really needed to do to get better was to engage in 30 minutes of cardiovascular exercise per day, that the aquacise I've been doing the past three years was no good because I wasn't increasing my heart rate enough. She saw I was going to protest this and stopped me by clucking at me in a disapproving tone, "All fibromyalgia patients claim they can't exercise, but that's only because they are severely deconditioned and won't do anything that hurts. All the studies have shown that exercise is what works." I tried telling her that while I had been capable of that amount of exercise five years ago and in fact did exactly that, it was no longer possible due to ever increasing fatigue, but she told me I must not really be trying!!

She repeated that I really should have the lip biopsy done over again. I informed her that I had been on anti-inflammatories and immuno-modulators for four years and asked her if that wouldn't affect the results of a new biopsy. She conceded that it might and said that she'd put it off for now.

She then ordered bloodwork that I had done just last month and said I should come back in six months. She said that since I only had fibromyalgia, I shouldn't really need the Salagen, the Mobic and the Plaquenil, but she wrote me new scripts anyway, which puzzled the crap out of me. After all, none of those meds would be a great deal of help for a fibromyalgia patient unless they ALSO had something else!

The bottom line is I'm screwed. I have no other options as I have been to the only two rheumatologist offices in Sioux Falls. I never expected to have to PROVE I have an ailment that was diagnosed without question four years ago.

I wouldn't give a flying rat's ass what I was diagnosed with or what type of doc I saw if I was still productive and able to work. But SSDI makes a big deal out of diagnoses and is very particular about documentation by the "proper" specialist. And my long-term disability insurance company considers fibromyalgia to be a mental, not physical illness and subject to benefit termination in the absence of documentation about something they can't easily deny like a verifiable autoimmune disease.

So I can't easily blow off these idiot rheumatologists. I cannot understand why they won't believe the doctors I had in Denver! I would just skip these morons and go straight on over to someone reputable in Minneapolis, but my insurance absolutely won't cover it, and Dan wouldn't be able to spare the time off work to drive me five plus hours each way anyway.

I don't know what the hell to do. Without the cooperation of a knowledgeable rheumatologist, my financial future is doomed. If I lose disability benefits, Dan and I will lose the new house and probably everything else we barely managed to salvage.

I am furious that incompetent doctors have this sort of power to wreck my life. I'm not expecting them to perform any sort of miracle; I just want them to look at the records of the last seven years of treatment and continue to treat what has already been diagnosed. I have absolutely no reason to doubt that I have both fibromyalgia and Sjogren's syndrome, and I deserve to be taken seriously.

There's a lot more ranting I want to do, but as what I've already said has exhausted me, it would be counter productive. Besides, I'm supposed to be out jogging or something right?

As Nixon said, I am not a crook.

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