browser life

Working on this in bits and pieces while making copies of medical records. Unfortunately, I've been so focused on this doggone Mayo visit that I can barely remember the movies I watched, even though some of them were excellent. But I'll say a few words at least about each one.

My last review was in September. The next movie I got was "Best in Show", a parody of dog shows that Dan started to watch with me and decided he didn't like about 10 minutes in and left. I thought it was extremely funny, but my sense of humor and Dan's differs somewhat. Anyway, the film is a star-studded extravaganza with a fair amount of ad libbing going on. There is an extremely neurotic married couple showing a Wiemaraner who practically come to blows over a missing toy bumblebee. Another couples' relationship is strained when the husband finds out that his wife has slept with practically every man they run into. There is a guy who looks and sounds pretty much like his champion bloodhound. And I particularly enjoyed watching the gay couple because they did the most ad libbing. But the funniest of them all was Fred Willard, who played the "color commentator" at the dog show. He knew nothing at all about dog shows, and he kept saying the most inappropriate things. This movie is best appreciated if you watch a real dog show first, so you can see how accurate the comedy is.

Next, we were overdue for a movie of Dan's choice. He picked "National Treasure", of particular interest because part 2 was filmed in South Dakota this year. This was part one starring Nicholas Cage as a man on a scavenger hunt of sorts to discover a message hidden in the Declaration of Independence. This leads him to all sorts of historical sites and improbable sources of information. You must possess a very powerful suspension of disbelief to really get into this, particularly the part about stealing the original Declaration from its heavily guarded glass case. If you disengage your sense of logic and just go along for the ride, it is fairly enjoyable.

After this, I was ready for some more high brow fair. I chose "The Queen" starring Helen Mirren as Queen Elizabeth in the days right after Lady Diana's death. The basic story line is the royal family's reaction to Diana's sudden demise. The queen at first does what traditionally befits her status; she keeps her mourning private and expects her son and grandsons to do the same. Diana was no longer in line for the throne, so she did not qualify for the usual machinations of a head of state's funeral. But Diana was treasured by the British public, and they cried out for a pop star funeral, no matter how inappropriate or appalling it was to the royal family. Tony Blair ended up playing the go-between because he rightly realized that if the royals fell out of favor, his reputation as Prime Minister would be affected as well. So he works very carefully but diligently at persuading the queen to address the public and allow an unprecedented extravagant farewell for a woman who was still a princess to her admirers around the world. Helen Mirren does a fantastic job of showing us the humanity behind all the dignified pomp and circumstance.

For even more dramatic tension, I went for "Notes on a Scandal" next. Judi Dench is excellent as a sarcastic, snobbish teacher who views her new colleague, played by Cate Blanchett, with great disdain. But it seems Ms. Dench protests too much. One begins to suspect that she is just lonely, and so it comes as no surprise and a bit of a relief when she reaches out to the young art teacher in a gesture of friendship. Their relationship becomes almost pleasant, but not quite, because Ms. Dench's character is difficult to like. And then Ms. Blanchett's character does something that could ruin not just her life, but others' as well: she falls for a student, and her new friend finds out. Cue the jealously, emotional blackmail and plot twists. Great writing and acting all around. Made me wonder about some of the creepy teachers I had as a kid, heh heh.

Continued on my streak of watching Oscar-nominated actresses with "Transamerica". Dan watched it with me. This is the story of a former man about to have sexual reassignment surgery to fully become a woman. She is played by Felicity Huffman. She looks so different here from her character on "Desperate Housewives" that I almost didn't recognize her at first. Not just makeup, but her demeanor, the portrayal of the awkwardness of a woman trying to move about in what is still technically a man's body. And the manner of speaking, not just a lower voice, but the inflection which is typically less varied in a man than a woman. She portrays all this quite well. If only the writing and plot had been a bit better, and then the whole movie might have been Oscar material. Basically, her character finds out right before the surgery that she has a son, fathered when she was still living as a man. She meets the boy but does not reveal her identity, pretending to be from a church, and that's the part that didn't quite ring true with me, that the boy just buys the church lady story. They end up on a cross-country road trip with plenty of adventure. I really enjoyed it, but I did have a nagging sense that I could have enjoyed it even more.

Next, I moved on to a movie my friend Robert recommended, "The Science of Sleep". This is about a socially awkward man whose dream life is much more interesting than his waking one. He falls for a woman who is as creative as he is, but he has difficulty properly conveying his feelings in a waking context. He does try to introduce her to his dream world, but it comes at a price. Normally, I do just fine with movies in foreign languages, but this one confused me, perhaps because I was watching it while extremely fatigued. The main character speaks Spanish, but he is living in France, and his French is terrible, so that people around him cannot understand him unless he speaks to them in English (assuming that they know English). So the subtitles are translating grammatically incorrect French with a Spanish accent, or something like that. Anyway, the dream sequences were pretty cool, and I liked how his dreams began spilling into the waking world, which reminded me of "Eternal Sunshine of the Spotless Mind". I should try watching it again sometime when my brain is working better.

A foreign language film I had a much easier time with was "Volver". I hadn't seen anything by Pedro Almodovar in quite awhile, and Penelope Cruz was in it, so there were two good reasons to watch. Ms. Cruz plays a woman who is dealing with multiple crises. First, her mother dies in a fire. Then her aunt passes away, but not before her mother's ghost is spotted or at least heard in her aunt's village. While she is dealing with this, something happens to her husband, and she must figure out a way to cover this up and to survive economically. She does this by cooking for a film crew in an abandoned restaurant that is supposed to be for sale. And then she finds out the truth about her mother, which I don't want to spoil here. There is humor, drama, surprise, beauty and darkness in this movie, and I highly recommend it.

Back into the drama realm: the next movie I saw was "In the Bedroom", which Dan watched with me. It's the story of a couple with a college-aged son who falls in love with an older single mother, played by Marisa Tomei. Their relationship is reasonably well-accepted by everyone except single mom's ex. There is an awful confrontation that results in the death of the couple's son, and everything changes. They become consumed with mourning and with seeking justice in an unjust system. This movie didn't seem to have gotten a lot of publicity when it came out in 2001, at least I don't remember it, but it is definitely worth watching.

I continued the dark theme with my next choice, "The Hours". It's the story of three women in three different time frames who are connected in some way. Nicole Kidman plays Virginia Woolf, and she is nearly unrecognizable as the inspired but tortured writer. Julianne Moore portrays a pregnant American housewife in the 1950's who reads one of Woolf's books. And Meryl Streep is an editor in present day New York whose life parallels the book Moore's character was reading. All three women have strong feelings for other women and some sort of dissatisfaction with the men in their lives, but their stories have a lot of differences, too. The resolution of all three stories is tragic but inevitable. Not for those looking for something cheery, but very well done.

Finally, something I'd been meaning to watch for a few years, "Boys Don't Cry". I was already familiar with the story because it really happened, during the early '90's, I think, and I remember reading all the local newspaper coverage on it. Hilary Swank portrays Teena Brandon, a girl who is transgendered but cannot afford the treatment or surgery to transform into a boy. She leaves her hometown of Lincoln and passes herself off as a young man named Brandon Teena. Gender issues aside, this was a person headed for trouble, with a history of auto theft, forgery and other legal entanglements. But Brandon wants a fresh start and shows up in a small town where no one knows him. He gets off on the wrong foot almost immediately and makes friends with a group who will be a bad influence on him at the very least. Things become more complicated when he falls for the ex-girlfriend of one of his new buddies. When Brandon's past and true gender are discovered, the results are disastrous. Even if you know what eventually happened to Brandon, it is quite shocking and difficult to watch. Hilary Swank is entirely credible as Brandon, and I can't think of many other actresses who could convincingly pull the role off. Amazing.

It took me three days to put this together this time. I have "Pursuit of Happyness" at the house now, and I'll watch it before I leave for Rochester if I get finished packing and copying medical records soon enough.

Ran across this on But You Don't Look Sick, posted by cynner68 (website is on my Links list and worth checking out). I'm sure it's a legit recipe with the word "doc" substituted for "duck", but I still laughed my ass off when I saw it, and it seems very appropriate given my current doc phobia....

Best Roast Doc Recipe courtesy of Spoonie Gourmet Magazine

1 Large, annoying Doc, thawed, innards removed, wing tips removed, neck trimmed, and extra fat removed

4 1/2 quarts Doc stock saved from a prior roasting, or Basic Chicken Stock, or three 46-ounce cans chicken broth, skimmed, or water

1 teaspoon kosher salt

3/4 teaspoon freshly ground black pepper

OPTIONAL INGREDIENTS (instead of salt and pepper)
1/2 recipe Star Anise Rub
1/2 cup skimmed stock from Doc or water, for deglazing

Remove the Doc from the refrigerator. Let sit at room temperature for the 20 minutes that are needed for the next step.

Pour stock into a tall narrow stockpot. Be sure there is enough room left in the pot for the Doc. By using a narrow pot, less stock is needed to cover the Doc than in a wider pot. Add the wing tips, neck, giblets, and any blood from the Doc. Cover the pot and bring to a boil over high heat.

Meanwhile, using the tines of a fork, thoroughly prick the Doc all over, paying special attention to the fattiest areas. Insert the tines at an angle so there is a minimum risk of pricking the meat beneath. Carefully lower the Doc into the boiling stock, neck end first, allowing the cavity to fill with stock so the Doc sinks to the bottom of the pot. To keep the Doc submerged, place a plate or pot cover over the Doc to weight it down. The Japanese otoshi-buta-wooden lids that are 1 1/2 to 2 inches smaller than the diameter of the pot-are perfect.

When the stock returns to a boil, reduce the heat and simmer 45 minutes. Even with the plate as weight, the Doc will tend to float to the surface, so check about every 10 to 15 minutes to see that the Doc remains submerged. Keep the stock at a gentle simmer; if it boils, the Doc will rise to the surface.

When the Doc has finished simmering, spoon 1 tablespoon of the Doc fat off the top of the stock and spread it in the bottom of a shallow 12 x 8 x 1 1/2-inch roasting pan. Remove the plate and carefully lift out the Doc, holding it over the pot to drain any liquid from the cavity. Place Doc in roasting pan. Do not tuck the neck flap under the Doc. Spread it out in the pan.

Pat the Doc thoroughly dry and lightly coat the skin with the salt and pepper or one of the optional ingredients, gently pressing them against the skin. The Doc is hot and the skin is tender, so work carefully. The Doc may be prepared ahead up to this point and refrigerated for a day. If made ahead, return Doc to room temperature. If proceeding with roasting right away, for optimum results, leave the Doc sitting out at room temperature for 30 minutes to permit the skin to dry and heat the oven to 500 degrees with oven rack on the second level from the bottom.

Place Doc in oven legs first. Roast 30 minutes. After 10 minutes, spoon out the fat that accumulates in the roasting pan. Move the Doc around in the pan with a wooden spatula to prevent the skin from sticking to the bottom of the pan. If it is easier, remove the pan from the oven being careful of the hot fat and spoon off fat. This will avoid getting fat on the inside of the oven, which would smoke. Make sure the oven door is closed, so that the temperature doesn't go down.

After the full 30 minutes, remove the Doc from the pan. Pour or spoon off the fat, and deglaze pan with stock or water.

When time is available, skim Doc stock and place in freezer containers for the next time, or add carcasses and bones back into pan and cook as Doc Stock, Double Rich.

Just killing some time while I scan various pertinent lab reports. I don't actually leave until Sunday, but I've got a ton of last minute things to do Thursday, Friday and Saturday, and I might not get a chance to start a post before then. Getting ready to go someplace is just about as exhausting as actually going there.

My appointment is 6:45am on Monday, which is actually pretty amusing because I'm rarely coherent enough to form a sentence before 10am. I've been told it's not worthwhile to try and park near the hospital, so we're going to use the free shuttle provided by the hotel we're staying at. There's not enough room in our small car for suitcases, food AND my wheelchair, so I'll just use one of the wheelchairs at the hospital (I can get around ok without one for short distances).

I've got charts done of all my various tests over the past ten years. I've got a two page bio because no matter how much I condense it, I'm still complicated, and the stuff they're gonna wanna know just isn't gonna fit on one page. I finished up the nine pages of paperwork they sent me that I have to bring to my appointment. And I recycled an old training notebook from my last job to store this stuff plus the most recent medical records so I can bring it with me Monday morning.

I got a no-frills hotel room with a kitchenette because it's easier to accommodate my various dietary restrictions that way. I'm bringing all the food from home except for stuff we have to buy at the grocery like eggs and milk. I've Map-Quested the hotel and the nearest grocery to it so we won't get lost (I'm an excellent navigator if I have a map in my hand).

I'm only bringing four days' worth of clothing because there will be a washer and dryer at the hotel. All the same, I was shocked to find out how much room winter clothing takes up in a suitcase! I haven't traveled during the month of December since I was in college.

The forecast for Rochester is only about 10 degrees colder than Sioux Falls, but the wind chill is gonna be rotten, as in minus 30 degrees. Not exactly the greatest news for someone with Raynaud's. But no snow forecast, which is awesome for the four hour drive out there.

We're going to try to get there Sunday afternoon because I have to fast that night and need to eat my supper prior to 7pm, and it can't have any fat in it, so I'd better make it myself (the usual eggs and cream of rice). I am supposed to bring all my meds and supplements in their original containers with me to the appointment, not an easy feat because I can barely fit them into two gallon-sized and one quart-sized bags. Between all the pills, the paperwork and a snack for when I'm done fasting (can't wait around too long for food when you're diabetic), I'm gonna look like I'm moving in!

As for entertainment, I really feel sorry for Dan because he doesn't like to read books and we don't have a portable computer or music player. I at least will have stuff to read, and I'm bringing a handheld Yahtzee game for both of us. For the car trip, I'm bringing a selection of '80's, '90's, present day and Christmas music to keep us both happy, heh heh.

One thing that has me stressed out is that my health insurance has not yet responded to my appeal for their denial of coverage for this visit. I sent my appeal on November 7th. I guess I'll call them tomorrow and see if I can get an answer out of someone because I really want this resolved before I leave.

Also before I leave, I need to call the rheumatology department at Mayo and make sure they got the original slides of my lip biopsy that the lab in Denver promised to send. I have a dentist's appointment tomorrow afternoon. I have to pick up Chip's medication that was on back order. I have to drop off the house key with the lady who will be taking care of him. And Friday night, Dan's parents are having us come over for dinnner to celebrate his birthday and our anniversary since we'll be gone on the 5th.

Despite all my preparation, I am still scared to death of going to another new doctor, especially when the outcome of this appointment could affect the entire course of my medical and financial future. I've been seriously traumatized over the past decade with all the insurance denials and dismissive medical professionals. I went to three rheumatologists this year alone who wouldn't deal with me because I was on disability; how in the world can I have an open mind after that?

I think the LTD company that denied me has successfully brainwashed me. I keep thinking that Mayo is going to tell me that all my previous doctors were wrong and that there's not anything much going on with my health, as silly as that sounds. It has happened to me so many times in the past that I can't seem to banish it from my head.

Ah, late night ramblings! Sorry about the vent. But I bet I'm not the only one who thinks this sort of thing, particularly when plagued with things that are so doggone difficult to diagnose.

But I suppose even answers I don't like are better than no answer at all, right? And at least I'm getting my foot in the door in Rochester.

All the same, I'll be mighty glad when it's over with.

Happy Thanksgiving! Here's a feast for your eyes, a gorgeous photo montage, the link courtesy of Silverlady:

Chiquita

Will be going to the in-laws in the afternoon; they said it would be just a small thing, but it sounds like there's gonna be a ton of food anyway. My tummy can't tell a holiday from any other day, so I'll pretty much limit myself to a bit of turkey breast, mashed potatoes, and a small piece of crustless pumpkin pie.

Dan and I will probably watch Christmas-themed movies at home in the evening. No matter what, it's gonna be nicer than last year, when I was packing up the last of the stuff in the house for moving the next day.

I'm thankful that I'm not still living in my in-laws' basement, and hopeful that I won't be living there in the future.

After agonizing about it for two weeks, and then slaving over it for another week, I have finally finished documenting my arguments against my long term disability insurance company's recent cessation of benefits on the basis of "somatoform disorder" and "self-reported symptoms". During the process, I had nightmares of homelessness and other dark concerns. Every time I would read through the denial letter, I would be flooded with feelings of hopelessness, and every time I would try to compose myself and put my appeal into words, I would become discouraged, but I forced myself to work through it.

What follows is the basic text of what I sent my lawyer, with identifying names removed and replaced with a generic term in parentheses. I am posting it to provide some examples of how a long term disability insurance company can exaggerate, mislead or even flat out lie in order to justify termination of benefits. Maybe this will serve to make the public more aware of the difficulties the disabled face in obtaining benefits and retaining them once they've begun:


Rebuttal of (LTD company's) Termination of Benefits Letter Dated 10/25/2007

For ease of reference, I will list the applicable page number and quote the paragraph I am disputing.

Page 3: "A formal Functional Capacities Evaluation was completed on January 31, 2006 by (a physical therapist). After her evaluation, (physical therapist) determined that (I) would be able to perform sedentary work.....it was additionally determined that she would be able to keyboard occasionally."

(Physical therapist) did nothing but a brief physical exam. Her assistant did all the rest of the FCE, and he is not a licensed physical therapist. So how reliable is this "evaluation"? A single afternoon exam does not equate to a 40 hour workweek. I was not even able to complete the exam, so how does that translate to full time work? (Denver primary care doctor) documented very well the adverse affect the FCE had on me the next day as she saw me in her office. Her notes for 2/1/2006 include the following statement: "She has significant myofascial hypertension in her masseter muscles, her trapezius, and all the way down the paraspinal muscles." This is NOT a "self-reported" symptom as she palpated the muscles herself, and as no such muscular tension was noted the previous day by (physical therapist), it occurred as a result of the test, and indeed would occur again should I be subjected to repetitive motion such as the type required for sedentary work.

Page 3: "On February 28, 2006, a comprehensive neurological evaluation was completed by (psychologist)....There was evidence of variable effort on (my) part...."

What (LTD company's) letter fails to mention is that this "variable effort" was likely due to the fact that I kept dozing off during the exam while at a computer terminal. The evaluator does not mention this in her report even though she was aware of it. If my fatigue were merely a somatic complaint, I would not be actually falling asleep during a test. The "personality" exam had many questions about physical symptoms which I answered in the affirmative. These questions were true due to physical illness, not mental, the but the test does not make that distinction, and neither did the evaluator.

Page 4: "(Denver rheumatologist #1) stated that (my) last office visit was on November 6, 2006."

Actually, my most recent visit was June 20, 2007.

Page 4: "On January 11, 2007, (Sioux Falls rheumatologist) sent a letter to (Denver rheumatologist #2)....(Sioux Falls rheumatologist) stated that he had reviewed (my) medical records and asked (Denver rheumatologist #2) if he felt she really had Sjogren's syndrome.....he stated that he was unable to make a diagnosis...."

Before (Sioux Falls rheumatologist) looked a single page of the medical records I brought to my appointment, he stated the following: that one cannot have Sjogren's with negative antibodies, that Sjogren's does not cause arthritis, that it is just dry eyes and mouth, and that Sjogren's is never disabling. This is contrary to what (Denver rheumatologist #2) told me in my appointments with him. I also mentioned these statements to (Denver rheumatologist #1) when I saw him on June 20, 2007. (Denver rheumatologist #1) confirmed that all of these statements are untrue and that there is medical evidence to support that. (Sioux Falls rheumatologist) is not a reliable medical source because he is not knowledgeable about Sjogren's syndrome.

(Denver rheumatologist #2) wrote back to (Sioux Falls rheumatologist) and stated that he felt I had Sjogren's syndrome, particularly since I had a positive lip biopsy. (Sioux Falls rheumatologist) then sent me a letter that stated that even though he conceded that I probably did have Sjogren's, he felt it would not cause extraglandular activity. This is despite the medical records I gave him documenting arthritis, skin dryness and rashes, peripheral neuropathy, Raynaud's phenomenon, reflux, gastroparesis, carpal tunnel and lymphadenopathy, all of which are extraglandular manifestations of Sjogren's. This is further evidence that (Sioux Falls rheumatologist) is not a reliable medical source.

(LTD company) is taking the word of a rheumatologist I saw just once over that of a rheumatologist I saw four times a year for seven years and a rheumatologist with extensive expertise regarding Sjogren's syndrome. Surely (Denver rheumatologist #2) extensive documentation of the progression of my illness is worthy of more consideration? (LTD company) cannot even get (Sioux Falls rheumatologist's) office staff to talk to them since (Sioux Falls rheumatologist) left medical practice in April. How much weight is (Sioux Falls rheumatologist's) opinion going to have without his office's cooperation?

Page 5: "On March 13, 2007, (I) had another office visit with (Sioux Falls primary care doctor).....(Sioux Falls primary care doctor) had a report from (my) Colorado doctor regarding the lip biopsy and that both her rheumatologists have recommended repeat lip biopsy."

This is untrue. Neither (Denver rheumatologist #2) nor (Denver rheumatologist #1) have indicated that a repeat lip biopsy is recommended. (Denver rheumatologist #1) in fact told me in June that he believed it was unnecessary as this test does not produce false positives.

Page 5: "On May 29, 2007, (I) had another office visit with (Sioux Falls primary care doctor)....He noted that (I) was a well woman..."

I was there for an annual gynecological exam, which is called a well woman exam by most medical insurance companies. This does not indicate absence of any of my chronic ailments. This exam could not be completed due to severe dryness from Sjogren's.

Page 5: "Our on-site physician, whose specialty is Internal Medicine reviewed (my) medical records...."

The review of an internal medicine specialist regarding a connective tissue disorder is not superior to that of a board-certified rheumatologist. What qualifications does (LTD company's) on-site doctor have?

Page 6: "In regards to (my) central nervous system illness....Prior neurological opinion in 1998 indicated that physiologic basis was not proven and recommended psychological evaluation for possible conversion disorder or functional disorder."

The neurologist did in fact refer me to a psychiatrist to evaluate my mental health. He concluded that there was no conversion disorder present and could not make a diagnosis of functional disorder.

Page 6: "In regards to (my) gastrointestinal disorders with her history of gastroparesis, reflux disease and constipation, these conditions can be treated with small meals, lifestyle changes and oral medications."

As documented in medical records by (gastroenterologist), oral medications for the gastroparesis were all either ineffective or caused bodywide uncontrollable muscle twitching or other intolerable side effects. The small meals and lifestyle changes have been followed since 2003, and they have not caused significant improvement in the condition. I still have daily nausea and unexpected bouts of vomiting. This and the necessity for eating every two hours would interfere with light work where I am expected to remain at my post performing my duties for the better part of eight hours per day and not snacking or making unscheduled bathroom breaks.

Page 6: "in October 2003, (I) has a gastric emptying study with significant delay noted. Etiology was not established and may be a medication side effect."

What medication would be causing gastroparesis? (LTD company's) "expert" does not specify. (Gastroenterologist) reviewed my medications and did not indicate that any of them could be causing this or that I should discontinue any of them. Gastroparesis is most commonly caused by disease, and (gastroenterologist) felt that this was the case with me.

Page 6: "In regards to (my) history of peripheral neuropathy which is presumed associated with Sjogren's syndrome, her condition would not preclude her from sedentary to light work activities."

A mildly abnormal result on an EMG does not necessarily correlate with a mild course of disease. People with such severe neuropathy that they are confined to wheelchairs can have normal EMGs. My neuropathy is aggravated with prolonged sitting at an office chair as one would do at a sedentary job. The carpal tunnel flares up with just a few minutes of typing.

Page 6: "The neuropathy diagnosis is inconsistently reported....There was no mention of neuropathy by the new primary care physician or rheumatologist or prior endocrinologist."

The reason (Sioux Falls primary care doctor) did not mention neuropathy until September is that she is not a neurologist, and I was going to her for routine things such as bronchial infections, hemorrhoids and annual physical. When I did go to her for a referral to a neurologist, she did note the problems I was having. (Sioux Falls rheumatologist) did mention my neuropathy in his notes during that single office visit, and it is mentioned in pages 7 and 8 of (LTD company's) own letter. (Endocrinologist) does mention neuropathy in her notes for December 9, 2004. She does not mention it in subsequent visits because she is not a neurologist.

Page 6: "As noted by the Social Security Disability Insurance doctor, (some dude) on January 5, 2006....."

I am unclear as to who this is, as I have no record of a doctor by this name. If this is the state agency medical consultant referred to by the Administrative Law Judge in his ruling, the consultant's opinion was weighed as that of a nonexamining expert source. (Administrative Law Judge) stated: "because the opinion is markedly inconsistent with the opinions of examining and treating physicians and the other medical evidence, the undersigned finds it unpersuasive."

Page 6: "In regards to (my) periodic limb movement disorder, her condition would not preclude her from light work activities with treatment running concurrent with work."

The polysomnography done on 12/19/2004 showed SEVERE periodic limb movement disorder with 98 periodic limb movements per hour of sleep resulting in 44 arousals per hour. Also the mean sleep latency was borderline for excessive daytime sleepiness. This is a measurable, not self-reported, cause of extreme fatigue. As a result, I could not be reliably alert and productive during an eight hour work day.

As for treatment, I tried various with a neurologist specializing in sleep disorders whom I saw from June 2005 to June 2006. To sum up, Provigil for daytime drowsiness increased stomach problems, Klonopin caused severe next day sedation, Baclofen causes next day sedation and stomach upset, Rozerem was ineffective. My current sleep medication, Zolpidem, does not reduce the limb movements. So no treatment has gotten rid of the limb movements without sedation that would further hamper my ability to stay alert and productive at a sedentary job.

Page 8: "On May 3, 2007, (I) met with (Sioux Falls rheumatologist's) physician assistant.....(physician assistant) indicated that (I) does have very good saliva present on exam....She noted that on exam there were positive tender points, no synovitis, rash or significant range of motion abnormalities noted."

(Physician assistant) is not a rheumatologist. Furthermore, she did NOT do ANY sort of physical exam on me, and she did not look in my mouth. She merely read the comments (Sioux Falls rheumatologist) had made during my single visit to him in January and used them to produce her report. Her comments to me were exactly the same as (Sioux Falls rheumatologist's), which are noted above. As (Sioux Falls rheumatologist) is not a reliable treating source, neither is his assistant.

Page 8: "In order to complete a comprehensive evaluation, we decided to send her medical records to a designated medical officer (DMO)"

Who is the DMO? (LTD company) doesn't provide a name. Since (LTD company) selected this person, he or she could hardly be considered an impartial source.

Page 9: "He noted that if (I) has Sjogren's syndrome, it is mild. He stated that this conclusion was based on the lack of significant dryness on exams, the normal serologic tests, the normal sedimentation rates, and the lack of need for aggressive treatment."

(ENT's) medical records indicate consistent signs and symptoms of dryness in the sinus, mouth and throat. My c-reactive protein levels, a blood test for inflammation, have been elevated for the majority of the time since 2000. Normal sedimentation rates do not preclude one having Sjogren's syndrome. Normal sed rates do not indicate a mild course of disease either, particularly if one has extraglandular activity. As for treatment, I have been on immunosuppressants for four years. I have had to go on prednisone, which is an aggressive treatment, for edema and for peripheral neuropathy, neither of which are self-reported symptoms. I discussed the possibility of trying Humira, Embrel or Remicade with (Denver rheumatologist #1) and (Denver rheumatologist #2), but they both confirmed that they are contraindicated in Sjogren's patients with neurological complications as these medications often worsen those problems. Also, both (Denver rheumatologist #2) and (Denver rheumatologist #1) told me that medications for rheumatoid arthritis are usually not effective for primary Sjogren's syndrome.

Page 9: "As part of our claim review, we referred (my) file to a vocational consultant for evaluation."

Who is this vocational consultant? (LTD company) doesn't name this person. It is unlikely that he or she is impartial since (LTD company) selected them.

Pages 10 and 11: "However, the administrative law judge's determination did not consider (my) formal functional capacities evaluation on January 31, 2006 which supported her ability for at least sedentary work capacity. The administrative law judge also did not consider the Neuropyschological Independent Medical Exam on February 28, 2006 which indicated support for ongoing psychological impairment for the Somatoform Disorder, without any reliable objective findings of cognitive restrictions and limitations."

Those two tests did not "support" anything except (LTD company's) intention to deny a valid claim. Even if the administrative law judge had had those tests in my file, it is doubtful his ruling would have been different as the opinion of the treating medical specialist carries more weight than the opinion of individuals hired by a private insurance company. While SSDI does grant disability for mental illness, this was not applicable in my case. I was granted disability based on the SUM TOTAL of medically determinable impairments, none of which are mental. (LTD company) went to a great deal of trouble to state that the Sjogren's was not disabling, the gastroparesis was not disabling, the arthritis was not disabling, the neuropathy was not disabling, the periodic limb movement disorder was not disabling, etc. But they did not consider the effect of having multiple chronic ailments concurrently.

And (LTD company) does not mention one thing that the administrative law judge DID consider: (Social Security doctor) as an independent medical source. (Social Security doctor) was hired by Social Security, not me, to do a consultative exam on December 29, 2005. It was (Social Security doctor's) professional opinion that my fatigue, insomnia and chronic pain were the result of autoimmune disease, endocrine disease and neurologic disease, all of which were verified with testing by proper medical specialists and so are not merely self-reported.

(LTD company) contends that my disability is limited to psychological and self-reported complaints. SSDI found me disabled on the basis of neither of those. (LTD company's) decision is indeed inconsistent with that of the Social Security Administration.

In conclusion, (LTD company's) denial is based upon their desire to limit financial obligation to their claimants, no matter what the nature of their disability. Their "self-reported symptoms" clause is a convenient cop out as they can apply it to nearly every medical illness. Their 24 month limitation on mental illness is also extremely convenient for them as all they have to do is hire a psychologist who is willing to label a claimant with somatoform disorder. Their disregard for documentation from reputable medical specialists such as (Denver rheumatologist #1) and (ENT), both of whom have treated me for at least seven years, suggests that they have no interest in the truth. Their tactics to deny my claim have been unethical and must be challenged.

My article of updated air travel advice for But You Don't Look Sick has been posted. Some of the tips in here might even apply to those without special needs:

Air Travel Tips for the Chronically Ill: Meeting TSA Regulations, Wheelchair Advice

Now I need to put some serious work into a rebuttal of my long term disability insurance company's termination of benefits. I figure if they came up with 16 pages' worth of garbage to deny me, I should come up with at least 16 paragraphs about why they are wrong and either need to re-start benefits or come up with a settlement.

I'm hoping that the keyboard is mightier than the sword.

Still in the midst of rebutting (is that even a word?) the LTD benefit termination and getting ready for the Mayo Clinic visit. Oh, and I'm trying to sneak in a quick But You Don't Look Sick article on complying with the current TSA regulations. And trying to squeeze in some social life like phone calls and attending my nephew's baptism.

What I have finished so far: have sent an appeal letter to my medical insurance company to try to convince them to cover my Mayo Clinic visit as in-network. Have made reservations at an Extended Stay hotel, a place with rooms that have kitchens, in Rochester for a week. Have arranged for the lab that processed my lip biopsy in 2003 to send the original slides to Mayo so they can be studied.

In progress: the air travel tip article is about three-fourths complete. Have started a list of items to bring on to Rochester. Am on page four of spreadsheets of my various lab work so that the Mayo docs will be able to compare the results and see if there's any pattern to them; I figure with ten years' worth of tests, I'm probably gonna end up with at least 15 pages of documentation. A bio for the Mayo docs summarizing my known ailments, a chronology of then they occurred, what I want to accomplish with my visit to them, family med history, med sensitivities, etc.

Still to come: a paragraph by paragraph rebuttal of the 16 page long term disability insurance company's denial letter. Contacting my primary care doc to see if she will put something in writing as to the LTD company's innacuracies regarding her conversations with them. Copying my medical records. Calling the pet sitter to see if she can watch Chip while Dan and I are gone.

Being sick is a full time job.

I've got a ton of stuff to do, such as: appeal my medical insurance's denial of coverage for the Mayo Clinic visit, put together a rebuttal of the LTD company's denial paragraph by paragraph so the lawyer can see if there are any avenues he hasn't pursued yet, book a place to stay in Rochester next month, look up gluten free places to eat there, put together comprehensive lists of tests and surgeries and symptoms and questions for the Mayo docs, and other things that escape my mind at present. But I'm gonna pause for a bit and focus on my trip to Florida as the memory of it is already fading. I'm not gonna do a series of posts on it like I had planned, just a summary, but I suppose that's better than nothing.

Let's see....we left for the Sioux Falls airport EARLY on the morning of October 6, at 5am. Dan and I went through security ahead of his parents because it always takes me a long time to get through there with my wheelchair and all. We waited and waited at the gate for them to show up; turns out Dan's mom had lost her parking slip already and looked everywhere for it, but they made it to the gate just in time to board.

The first flight was to Denver and was uneventful except for the usual uncomfortable seats. But we had an incident in the Denver airport: Dan's mom wanted to push my wheelchair even though she had knee replacement recently, and for some reason, she wheeled me onto a moving walkway, a bad idea anyway because with the wheelchair traveling at a different speed than the walkway, I got really nauseous and thought I was gonna pass out. But then when we got to the end of the walkway, my wheelchair got stuck, and Dan's mom tripped over me, fell and couldn't get back up!

I don't know who yanked my wheelchair off the walkway, but I saw two strangers helping Dan's mom to her feet after I got turned around. She said she was fine, but she injured her back, and it bothered her for at least a few days. Not a good start to the trip.

We waited to meet Dan's aunt at the gate to the flight to Tampa as she'd had to fly in from Rapid City. We thought she was gonna miss the plane, but she finally showed at the last minute. Seems she was using the airline's wheelchair service, and they took their sweet time getting her a ride.

The flight to Tampa wasn't too bad, especially since they changed the seating so Dan and I could sit together. They showed a movie, "Evan Almighty", but I couldn't see the tiny little screen because of the glare from the window, and we didn't have headphones for sound anyway. So I just read my book about Rush by Neil Peart and munched on snacks I'd brought from home since they only served pretzels.

Upon retrieving our baggage, we discovered that Dan's suitcase was BROKEN and UNZIPPED! Amazingly, though, nothing appeared to be missing. But we had to buy a new suitcase and a TSA lock in Florida for the trip home.

I was pretty wiped out when we finally got to the rental car place, but we weren't nearly finished with our day yet. We had rented a van that was supposed to hold seven, but it turned out to be barely large enough for five adults plus suitcases plus a wheelchair. And no one seemed to be able to figure out how to adjust the steering wheel or the driver's seat so Dan's mom could fit in there, so that took awhile.

We still had an hour and a half drive to where we were staying in Lakeland. By this time, everyone was hungry, but I wasn't comfortable leaving a van full of suitcases in plain view while we ate someplace, so I convinced them to get us checked in at the hotel first (after we got lost twice). Then we tried to go to the Outback, but the wait was over an hour, so we tried Chili's, which wasn't much better.

At Chili's, I asked the waitress for one of their wheat allergy menus, and she'd never heard of one. The manager found one for her, and I ordered plain salmon with plain mashed potatoes, but I got a plate covered in gravy! Neither she nor the cook knew that gravy contained wheat, so I had to wait while they did my entire order over from scratch.

By this time, it was almost 9pm, so we went over to Dan's grandfather's house (after getting lost again) since his aunt was going to be staying there. Various other relatives were there already, and they wanted me to go to church the next morning before the birthday party, but I declined as politely as I could because there was no way I'd have the energy to do both. I was already so exhausted that I could barely follow the conversation in the room.

Good thing I'd begged off church, because I was a mess the morning of October 7. I'd gotten no sleep due to pain and muscle cramps, I was vomiting and I couldn't stop coughing (still had the bronchitis). Luckily, I was able to keep a couple of hard boiled eggs down after awhile, and I was able to limp around somewhat and help set up for the party, which was held at the clubhouse of the trailer park where Dan's grandfather lived.

I was really surprised when the guests started arriving early (in my family, everyone is late for everything). Dan's grandfather's wife, Virginia, pointed out to me all the people who were related to her, but I was so fibrofogged I pretty much forgot all the names. Still, I had brought my camera, and I tried to get candid shots of all who attended, difficult because there were at least 75 people there.

Taking pictures, however, is one of my favorite activities, so it gave me a bit more energy than I might have otherwise had. I did try to be sociable even though I had trouble following the conversations. But I have to admit I was relieved when things wrapped up three hours later, and I was looking forward to going someplace quiet and resting.

Dan's family had other plans though. We went back to his grandfather's house and hung around another four hours, I think. I socialized, but a lot of what I said was probably babble because I was on fumes.

I did get a chance to chat with Dan's cousin's wife, who has celiac disease and fibromyalgia. We compared treatments, symptoms and diets. It was good to talk with someone in person who understood all the hurdles these ailments present in one's life, and I think Dan might not have minded hearing that I am not the only one with these sorts of problems.

Some of the group planned to go to Sea World the next day, and I desperately wanted to go too, but I knew I would likely collapse if I didn't take it relatively easy, so I had to decline. Dan's parents and he and I agreed to come back to his grandfather's house for lunch the next day at noon and then go to a museum in Lakeland, something much less exhausting. We got back to the room sometime after 10pm, and I still hadn't had my eggs and rice for supper, so I ate them quickly and fell asleep sitting in one of the uncomfortable chairs, not something I recommend.

Had serious trouble getting up the next day; kept dozing back off after Dan woke me up. Did manage to keep the lunch appointment, but Dan's grandfather was too tired from the previous day's party to go to the museum. I was bummed, but to be honest, it was probably actually a good thing I didn't go either because it would have been too much activity too many days in a row.

Instead, we hung around and talked more. Dan's parents and he and I did drive around Lakeland for awhile in the afternoon because I hadn't gotten a chance to see the town yet, so I appreciated that. We went to the college campus that had been designed by Frank Lloyd Wright, to some of the larger lakes, gawked at some lovely homes, and I of course took pix.

On Tuesday, we embarked upon a major outing: my sister-in-law had invited us to Anna Maria Island for the afternoon where she and her husband and mother-in-law were renting a condo right on the beach. Most of the rest of Dan's family was coming too. It was an hour and a half drive not counting the times we got lost, and I dozed off in the van.

The condo was pretty spacious, a two bedroom, two bath number with a screened-in balcony overlooking the beach and private pool. I knew I had only one day to enjoy the Gulf coast, so I made the most of it by hanging out on the balcony, watching the pelicans diving for fish and marveling at the dragonflies (at least I THINK they were dragonflies) the size of birds. I did go inside long enough for lunch.

After we finished eating, I could feel what little energy I had waning already, so I boldly announced I was going to the beach while I was still able. To my surprise, several people went with me. I brought my camera, naturally, and a bag for collecting seashells.

The Gulf of Mexico is pretty tame compared to the waves I'd experienced in Hawaii, particularly in the middle of the day, and I'd been doing water aerobics for four years, so I figured I could handle it. But even though there wasn't any undertow, I'd seriously underestimated just how poor my balance and strength had become. At one point, I got knocked right off my feet and onto one knee, and when I tried to get back up, I fell right on my butt.

I was determined, though, and I continued to wade around looking for shells even though I was swaying all over the place like a drunken idiot. I wandered out to deeper water for a few minutes to get a break from the waves, but I didn't go out any further than chest deep because I knew I no longer had the strength for swimming, and I didn't want to get so fatigued that I couldn't make it back to shore. I would have been happy to stay outside all day, but my legs started getting pretty weak after maybe 20 minutes in the water, so I reluctantly came back to shore and retrieved the camera from Dan (I'd asked him to hold it for me while I played drunken sailor).

Once semi-safely ashore, my brother-in-law asked our niece if she wanted to bury Dan in the sand. Dan played dutiful uncle and agreed, but I don't think either of us really believed they would do it. Were we surprised when Dan found himself covered completely up to his neck!

Not too long after that, despite having only been outside for 45 minutes tops, I began to feel as though I would collapse and asked Dan to help me get back in the condo. I'd forgotten there were two flights of stairs to climb, and my legs were shaking so badly that I could barely put one foot in front of the other. Dan had to keep catching me as I nearly fell multiple times.

I spent the most of the next hour or two sprawled in a lawn chair on the balcony. I did watch some video my brother-in-law had made of my niece trick or treating at Disney World, but have to admit I was so exhausted that I nodded off a few times during it. I slept in the van pretty much the whole way back to Lakeland too, not good for the neck, but I didn't care because I'd had my vacation day at the beach.

I'd been invited to go to the Tampa Zoo on Wednesday, but I knew there was no way I'd be able to handle two straight days in the sun, so I reluctantly declined. I'd already committed to a big family dinner Wednesday night anyway, and I figured I'd better save my energy for that. I honestly don't remember what I did the rest of Tuesday, if anything.

And I can't remember what I did before dinner on Wednesday, either. I suspect I may have stayed at the hotel most or all of the time before we went to the Steak and Ale restaurant at 5pm. I'm pretty sure Dan went shopping without me.

Anyway, since there was such a large group at the restaurant, we got a separate room all to ourselves. Dan's aunt had phoned ahead and inquired about gluten free options, which was way cool. I got to have a delicious 6oz. filet steak, baked potato, steamed asparagus, and vanilla ice cream for dessert.

Thursday was a really big day for Dan and me. We went with his aunt, uncle, cousin and cousin's wife to Epcot Center. I naturally brought the wheelchair, and it was a good thing because I doubt I would have lasted two hours in that park without it due to the extreme heat and the sheer size of Epcot.

I had been there before, but enough years had passed so that there were new things to see and do in addition to the old faves. We started near the entrance in Future World since that had the most things we hadn't seen before. Our first stop was at a building called The Land.

We found out really quickly that Disney World is truly the most wheelchair-friendly place on the planet. Every ride had an icon that told you whether you needed to get out of your chair to go on it or whether you could go on it staying in the chair. For the ones that you needed to get out to ride, they asked if you needed transfer assistance, and they would move your wheelchair to the place where your ride ended so you didn't have to hunt for it.

The coolest ride at The Land, and actually my fave in the whole park, was a hang gliding simulation called Soarin'. You are lifted into the air so that your feet dangle, and your motion exactly matches what's on the screen, so images of going over water are accompanied by just the right amount of wind and moisture. It was so realistic that when it appeared we were going near an ocean wave, I instinctively pulled up my feet so they wouldn't get wet, heh heh.

The Sea has been completely redone. The giant aquarium with the manatees is still there, but there is a cute Finding Nemo ride and a really awesome Q and A with Crush, the animated turtle from the movie. I don't know how they pull this off, but the turtle actually has conversations with real kids in the audience, identifying them by what they're wearing and giving unique responses to what they say!

Land of Imagination is still there, and so is Figment the purple dragon, but I think maybe they added something new to the ride (either that, or my memory just sucks, heh heh). There was a 3D movie called "Honey, I Shrunk the Audience", where they use visual effects as well sensory stuff in the theatre to make it seem like you have gotten smaller. I was in my wheelchair with my feet in the footrests, so I missed the sensation of mice running across the floor, but judging from the way the audience was screaming, it must have been pretty realistic.

After that, it was after 1pm, and Dan and I wanted to take a break by going to a gift shop, but the others wanted to go to the race car test drive ride, so we just agreed to meet them out front when we were done (my reflexes are too slow now to do very well on a race car anyway). Dan and I had wanted to do the ride in the geosphere, but it was getting late and we had reservations for dinner at 5:30 at the opposite side of the park, so we skipped that and the Energy stuff and headed for the countries. We started with Mexico and went in order around.

By this point, Dan's uncle was pretty worn out, so he rented a wheelchair, and his wife pushed him. It was a little awkward because we were all going different speeds in different directions (Dan pushes my chair really fast), and I think I threw everybody off because I kept pausing to take pix. We did a water ride in Norway and a 360 degree movie in China, and then we were out of time to do anything but just blast straight through Germany, Italy, Japan and America before we got to the Morocco restaurant for our reservations.

The restaurant was really cool with authentic food and live entertainment. Not every night you get to listen to sitar music and watch a belly dancer while you eat, heh heh. Dan looked particularly pleased.

Since we had two in our party with celiac disease, we asked the waiter what on the menu might be safe. To our surprise, the head chef personally came out of the kitchen to our table and helped us figure out what we could eat! He even made gluten free bread just for me along with my roast lamb, which was delicious.

When we got done with dinner, it was nearly dark outside, too late to really sightsee in the other countries. We decided we would go back to America to see their show featuring various historic figures. We found out the next show wasn't for another hour, but that a concert by Starship would be starting right across the way, so Dan and I went there while everyone else went to France for pastries to eat later on.

This was the incarnation of Starship with Mickey Thomas. The arena where they were playing had steps, so the wheelchair area was at the very back. Surprisingly, I still was able to get some photos using the zoom lens.

The history retrospective in America had been updated with film footage and a more elaborate montage at the end. By the time it was done, though, I had a case of sensory overload going on because it had been an extremely long day. I think I wasn't the only one, though, because we didn't do any more poking around in the countries and just headed closer to the park entrance where there was a space set aside for wheelchair viewing of the fireworks show.

We had gotten there early enough to snag a place toward the front near the water. Good thing, too, because the centerpiece of the show was a floating rotating globe on a barge in the lake that was lit with moving images in the shapes of the continents. There were also fireworks on the water and in the sky, and I impressed myself by actually getting some photos, not easy with a digital camera where you have to guess where the explosions will go off and press the shutter before it happens.

The park closed for the day when the fireworks ended, so everyone headed for the exit at once. Fortunately, we were already close to the parking area and got out surprisingly quickly. And it was only a 40 minute drive back to Lakeland, good thing for Dan because he must have been exhausted from pushing my wheelchair around for 12 hours.

On Friday, Dan's parents wanted to go back to the beach condo, but I was wayyy too wiped out from the Epcot advanture to even leave the hotel the next morning, so they went without Dan or me. Dan entertained himself by walking to a nearby mall, and I alternated resting with packing up the room so I wouldn't have to do it Saturday morning at the last minute. We did go with them in the evening to take Dan's grandfather and his grandfather's wife to dinner at the Outback so we'd have a chance to bid them adieu.

Saturday was the big departure day. We left the hotel at 9:30am and headed for Tampa. We got lost in Tampa and nearly got t-boned, which my neck didn't appreciate.

The Tampa to Washington DC flight was pretty uneventful. We even lucked out that the departure gate for the next flight, which was only 30 minutes after we landed, was moved closer to our arrival gate. And they boarded a bit late, which helped.

The next segment was Washington DC to Denver. I was most pleased that the in-flight movie was "Harry Potter and the Order of the Phoenix", and I even managed to snag some headphones that worked. Good thing the movie made the time go by a bit faster, because we ran into problems after that.

When we were just 150 miles from Denver, the airport was shut down due to a freak hailstorm. We couldn't turn around and go somewhere else because we didn't have enough fuel! There was some discussion about trying to make it to Colorado Springs, but DIA relented and told us we could land.

But once we landed, we pretty much just had to sit outside the airport. The grounds crews were all inside due to lightning, so there was no one to set us up with a gate. Weird, sitting on the tarmac watching a thunderstorm.

We finally got off the plane well after our connecting flight was supposed to have left. But it hadn't left yet because as luck would have it, the pilots were stuck on ANOTHER plane. So we boarded, and waited, and waited.

It was 9:30pm when we took off from Denver, and I was in agony. But we still had an hour and a half to go, and it was high turbulence all the way. I was trying not to cry by the time we touched down in Sioux Falls.

It got worse when we discovered after a considerable amount of waiting that some of our luggage was missing! My suitcase and one of Dan's parents' bags never arrived. So we had to go over to check-in to have their lone employee to file a claim.

I thought we were finally on our way home then, but Dan's mom had never found the stub she had gotten for parking, so we had no proof how long we'd been in the lot. We had to sort it out with the attendant, and then we got lost again. Dan and I got home at midnight, and I made a vow to NEVER do two connections in one day again.

Our luggage finally showed up Sunday night. Stupid airline. They again managed to mar an otherwise decent trip.

I'm glad I went, especially since we're not gonna be able to do any more vacations for I don't know how many years. I just wish I was well enough to really make good use of our rare travel opportunities. Despite having to miss so much, I still managed to take 400 pictures, heh heh.

And I probably should have broken this up into segments after all, because it took me eight days to type this post.

I had been in limbo for awhile now. This summer, my LTD company informed me that it was "re-evaluating" my claim because I had been receiving benefits for 24 months, and there are some limitations in my contract. The limitations are for mental illness and "self reported" (anything not measurable by diagnostic tests, like pain and fatigue) symptoms.

In truth, I was expecting a denial because the LTD company contends that I have somatoform disorder, based upon the opinion of a shrink they paid to force me to undergo a "personality" exam (they refused to give me benefits unless I did this plus a full-day functional capacity test). So I figured I'd be able to beat this easily, as it is impossible to have somatoform disorder if you have legitimate physical disease present. The letter I got in the mail on Tuesday, though, completely blew me away.

It is 16 pages long! They do mention their "diagnosis" of somatoform disorder, but they also go through summaries of medical records from 13 different doctors I have seen and have essentially discredited every single one of them! They also went through my SSDI file and "proved" that the administrative law judge who approved me for Social Security was incorrect as well.

But the most damaging part of the letter is where they go over the records of an incompetent Sioux Falls rheumatologist whom I only saw once. Unfortunately, this guy had never heard of sero-negative Sjogren's syndrome and told me that I could be cured of fibromyalgia with vigorous exercise. Because he put in his notes that he felt I was not disabled (I found out later that he did this to lots of people who were very obviously disabled), the LTD company is using this as "proof" that I can do sedentary work.

I called my lawyer. He said that he had never seen a more lengthy, complicated denial letter. He also said that this is not the slam dunk case he thought I had, that the LTD company is unlikely to agree to settle and that it will probably have to go to court, which could take years.

This would be much easier to take if I truly had a negligible case. But I have very real ailments that go beyond the arbitrary "self reported symptoms" label. You can't fake a positive lip biopsy, or a positive EMG, or a sleep study, or a glucose tolerance test, or a gastric emptying test, or an endoscopy.

Yet it is entirely possible this LTD company may get away with denying my benefits. All because I am sick enough to go to 13 doctors who believe I am ill, but not sick enough to actually be dying of anything, so all the findings are distorted to suit a company that will do pretty much ANYTHING to save a dime. Getting approved for Social Security Disability was nothing compared to this.

This is not to say I'm giving up. The appeal has already been filed. And when it is denied, I will appeal again.

But I am absolutely exhausted at the thought of the uphill battle I have ahead of me. A battle that I shouldn't even have to be waging. I have done my part to prove I am not well, yet this company can arbitrarily decide to violate our contract so that my financial future is in jeopardy.

I do have an appointment set up with the Mayo Clinic. If they can confirm some of my previous diagnoses, I'll be in good shape. But I really hate that this one hospital visit could make or break my ability to receive disability.

There are other things I want to vent about, but my hands are hurting already just from this post. So I will save it for another day. Sigh.

I will eventually get my head together and fight this latest setback. But for the moment, I need to grieve a little and ask the world for a pat on the head of sympathy. Even disabled warriors are human.

I wish I had never moved to South Dakota.