browser life

This item appeared in my local newspaper. It pretty accurated describes the world of a person whose life has been transformed by an onslaught of ailments:

Living with pain: Iowan has allergies, constant pain from rare syndrome

In other news, I have not fallen off the face of the earth. I am, however, making progress on the article I'm writing for But You Don't Look Sick and hope to get it finished up this weekend. I also intend to post about some fun stuff very soon.

Lots of different stuff on my mind right now. I was already pretty brain fogged and am headed toward feeling overwhelmed. Very little is simple in life.

My primary care doc called me yesterday about the Mayo Clinic referral. They want the records and test results from my Denver rheumatologist plus some other stuff before they will even consider getting me set up, with the earliest available appointment being in January. They also want an ANA and sed rate, blood tests I haven't done in years because they're always negative, so I'll give myself up to the vampires on Tuesday and have the results faxed to Mayo's rheumatology department.

The increased neuropathy is getting aggravating. The right hand and arm are now either numb or burning/tingling nearly all the time. As a result, I am repeatedly dropping, flinging or knocking over things.

The vet called on Wednesday about Chip's hips. The best thing for the pup would be total hip replacement because the success rate for that is 95 percent, but nobody does canine surgery that complicated in South Dakota. Plus, to be perfectly blunt, the cost would be way beyond anything we could pay.

The second best option would be something called FHO, where they actually remove some of the bone. This mainly works on young, small dogs with no arthritis. Chip is nine years old, 50 pounds and seriously arthritic, so we need to think carefully before putting him through such an invasive procedure.

The cost for the FHO surgery could be about one-third as much as a total hip replacement. Most dogs get only one hip done, but Chip has to have both. At the moment, though, Chip is no longer limping, so the vet said we can put it off awhile longer if we need to as long as we can keep him comfortable (Chip, not the vet).

And my father in law just found out this afternoon that he has tumors on his bladder that are likely cancerous. They are doing a biopsy on October 3rd, three days before the family is scheduled to go to Florida to celebrate my husband's grandfather's 90th birthday. The recommended treatment if they find cancer is surgery.

I guess there is some truth to the statement "when it rains, it pours". Anyone got an umbrella?

I was gonna wait until I was done with the article I was writing for But You Don't Look Sick (moving tips) to do post anything about my personal health, but that article is taking forever due to my fibrofog, so I'm just gonna take a break and make this entry all about me, heh heh. Besides, it has been so long since I updated that this is gonna be close to novel-length anyway. Um, where do I start?

Let's see....when I went to my Denver rheumatologist in June, he told me he wasn't comfortable with me not having a specialist closer to Sioux Falls monitoring me regularly. But I'd already been to three rheumatologists out here on the prairie that were complete a-holes, so that left me sort of nowhere. And Denver doc didn't have anyone to refer me to, which was considerably less than helpful.

I did plenty of asking around on the ol' internets, but not a whole lot of response. Someone over at Fibrohugs was kind enough to recommend two rheumatologists in Omaha that were good with fibromyalgia, but I dragged my feet about contacting them as I didn't know if they would be any good with sero-negative Sjogren's. Meanwhile, my long-term disability insurance company announced it would be cutting off my benefits, claiming I had a mental illness subject to a 24-month limitation despite mountains of medical records describing my very real physical ailments.

Then last month, I stumbled across a message forum called NeuroTalk (someone remind me to add it to my Links list). On there, I discovered that someone with sero-negative Sjogren's had been evaluated by the Mayo Clinic. They had specialists there that had done research on Sjogren's, so I got the names of two rheumatologists and two neurologists.

But I continued to drag my feet. Why? Because I actually felt traumatized by the shitty way the Sioux Falls rheumatologists had treated me, to the point where I was afraid to even set foot in a new specialist's office. There's hardly anything in this world that frightens me anymore, but the very idea of being berated by another doc freaked me out.

In the meantime, my flare from Hades that set in after I had three dental procedures and a breast biopsy within two weeks of each other failed to resolve. The pain level did what I expected, which is to say got unbearable for awhile and then went back to my regular baseline (about 7 on a scale of 1 to 10) after a couple of weeks. But the brain fog and fatigue stayed elevated, and the neuropathy that had been stable since 2005 started getting worse again and even gave me new weird symptoms (like feeling as though I have walked through cobwebs or have gotten a splinter even though nothing is there to cause the sensation).

Then last week, Dan told me he thought my long term disability insurance company might be doing surveillance on me. There was someone sitting in a car within view of our house taking notes as Dan headed off to work at 7:30am, which is funny in a way because I'm seldom able to get out of bed before 10am. But not so funny to know to what lengths this company might be going to dig up dirt on me.

Anyway, Dan began to pressure me to go through with the Mayo Clinic thing, volunteering to drive me even though it would mean he'd have to miss work without pay. I started to think about why those three Sioux Falls rheumatologists gave me so much crap. I decided what they probably had in common was an unwillingness to accept the diagnoses of docs they didn't know in Denver, no matter how good those docs were, and that the only way to have a specialist take me seriously out on the prairie would be to have someone run the same damned tests over again, but this time at Mayo, a hospital whose credentials no one in their right mind would question.

So I took a deep breath and went to the primary care doc today, and she agreed to do the referral to the Mayo Clinic. She's going to try to get me in to both rheumatology and neurology. She did a brief neuro exam today and found some reduced sensation on my calves (different spots on different legs) that I didn't even know about as well as carpal tunnel type pain that I did know about.

I also found out this afternoon that my long term disability insurance company had called my primary care doc a few days ago and tried to bully her into stating that I could work and that I was suffering from nothing more than depression. The doctor told them that I could barely walk down a hallway, much less hold down a job and that I had primarily physical ailments. If nothing else, any documentation I get from the Mayo Clinic is going to put a dent in the LTD company's contention that I'm not really sick.

I have no idea how long the wait to get in to the clinic will be. My primary care doc says normally you can get in faster if a specialist refers you, but I'm sort of in a Catch-22 with that one, so if it takes me six months to get an appointment, so be it. Surely the long term disability insurance company can't punish me for having a pending appointment?

Paying for this visit is gonna be problematic as my medical insurance won't cover it. I could end up wiping out all my savings that was supposed to tide me over while my long term disability benefits were suspended. But it may be the only thing that will convince the LTD company to reinstate them, which is a very scary gamble.

It is possible that I wil have to re-do the lip biopsy, and it may come back negative this time because I've been in immuno-modulators for four years. And since my antibodies are always negative, I may be told I don't have Sjogren's after all. But I would think that even if that happens, I will still be found to have some sort of autoimmune disease going on because of the damage to my digestive system, lymph nodes, joints, eyes, mouth, etc.

I will probably be re-doing the EMG I had in 2004. It would be the only way to tell if my neuropathy is getting worse. I may even have to have a nerve biopsy to see what kind of neuropathy it is.

And then after I get done with the Mayo Clinic, I will still have to find a rheumatologist who will continue to treat me. I am hoping that the Mayo doc will give me a name and will maybe even chat with the doc I'll be going to so that there won't be anymore questioning going on. It would be so much easier on me if I didn't have keep proving how credible I am and be all defensive every time I go to a new doc.

So even though I am relieved that my primary care doc agreed to help me out, I am still scared. I keep having nightmares that either I am forced to go back to work and get horribly sick as a result, or that I lose the house and am kicked out on the street. It is a truly awful thing that doctors and insurance companies have such power over me, but am pretty much stuck with this scenario for life.

The next time someone says to my how nice it must be to not have to work, I'm probably gonna deck 'em.

I've got a real dilemma. My English springer spaniel, Chip, has severe hip dysplasia. Despite medication (we've tried many over the past five years), he has started limping again, and today, we took him to the vet for an x-ray to see if things were deteriorating.

Poor thing. His right hip is now bone on bone, and his left is nearly there. He's nine years old.

The vet said he needs surgery, although she is deferring it to the doc who actually does the surgeries to see what he thinks. Problem is, I'm on disability and am about to be cut off from my LTD benefits. We can't afford this.

Is it cruel to refuse surgery if it would be a severe financial hardship?

I don't know what to think. Chip is sleeping next to me right now, trusting me to do the right thing.

I might have posted this before, but if I did, it was probably years ago. Appropriately, it was sent to me by Dr. Karen....


Stress Management Techniques


In case you are having a rough day, here is a technique recommended in all the latest psychological journals. Just follow the 7 steps below. The funny thing is that it really does work.

1. Picture yourself lying on your belly on a warm rock that hangs out over a crystal clear stream.

2. Picture yourself with both your hands dangling in the cool running water.

3. Birds are sweetly singing in the cool mountain air.

4. No one knows your secret place.

5. You are in total seclusion from that hectic place called the world.

6. The soothing sound of a gentle waterfall fills the air with a cascade of serenity.

7. The water is so crystal clear that you can easily make out the face of the person you are holding underwater.

I've had this game on my desktop for months. I think Joan sent it originally.

Here are the instructions: When all the numbered red squares are visible, try to get rid of them as fast as you can, in numerical order. (You don't have to click them...just touch them with the cursor)

catchThirtyThree

So far the least amount of time it has taken me to solve the puzzle is 76 seconds, which I know is pretty slow. I tend to forget what number I'm on.....

One thing I've been able to do during these nasty brain fog episodes is work on my iTunes collection. When I can't think straight enough to write a coherent sentence or follow a movie plot, I can listen to music. I got high speed internet this year, so I was FINALLY able to use my various iTunes gift cards to download songs.

As most of you know, I will listen to just about anything. Thought it would be amusing to list all the artists I've downloaded this year. Some of these represent more than one song:

Snow Patrol
Lostprophets
Arctic Monkeys
Keane
The Raconteurs
Three Days Grace
Disturbed
Ok Go
30 Seconds to Mars
Blue October
Nelly Furtado
Fergie
The All-American Rejects
Evanescence
The Killers
Gnarls Barkley
Nickelback
My Chemical Romance
Fort Minor
+44
Sean Paul
Rob Thomas
Army of Anyone
Revery
AFI
Incubus
Angels & Airwaves
Stone Sour
Marty Casey & Lovehammers
Jack Johnson
Christina Aguilera
Breaking Benjamin
Crossfade
Nine Inch Nails
Papa Roach
Rise Against
John Mayer
Jerry Lee Lewis
Neil Young
Godsmack
Korn
Flyleaf
KT Tunstall
P!nk
Gwen Stefani
Scissor Sisters
Sting
Saliva
Hellogoodbye
Black Stone Cherry
Ludacris
Weezer
Seether
System of a Down
Angels & Airwaves
Hinder
10 Years
P.O.D.
Drowning Pool
The Suicide Machines
The Hives
Chevelle
Rage Against the Machine
Social Distortion
MXPX
Avenged Sevenfold
Dixie Chicks
Fall Out Boy
Sixpence None The Richer
Sugar Ray
Barenaked Ladies
Ace of Base
Bowling for Soup
Goldfinger
The Presidents of the United States of America
Reel Big Fish
Bow Wow Wow
Frickin' A
CASCADA
B*Witched
The Wallflowers
Save Ferris
Ziggy Marley
UB40
Jason Mraz
Brooks & Dunn
Dwight Yoakam
Asleep At the Wheel
Alabama
Rick Springfield
The Donnas
Brad Paisley
Wheatus
Mark McGrath
Limp Bizkit
Kill Hannah
Kevin Dubrow (Quiet Riot), Tracii Guns (L.A. Guns) & Gilby Clark (ex-G N' R)
They Might Be Giants
Living Colour
Dope
Authority Zero
Nerf Herder
Lit
Love/Hate
Ben Folds
Gary Hoey
Angel
Gorillaz
Shinedown
Plain White T's
Foo Fighters
Death Cab for Cutie
Less Than Jake
Rogue Traders
Rock Kills Kid
Bullet for My Valentine
The Bouncing Souls
Lily Allen
The Fratellis
Daughtry
Smile Empty Soul
Carrie Underwood
Smashing Pumpkins
Linkin Park
Kelly Clarkson
The White Stripes
Finger Eleven
Velvet Revolver
Ozzy Osbourne
Maroon 5
Nonpoint
The Red Jumpsuit Apparatus
Pearl Jam
Dishwalla
Bush
Green Day
12 Stones
Kaiser Chiefs
Fair to Midland
Colbie Caillat
Collective Soul
Live
The Prodigy
Avril Lavigne
Goldfrapp
Yellowcard
A Perfect Circle
Audioslave
Switchfoot
Marvelous 3
Fuel
Oasis

There are probably 150 more songs I'd like to download. Some are new, but most would be to fill out playlists for pop from the '50's, '60's and '70's. Since my budget is tight, I've put this on hold, but should I get anymore gift cards, you know I'll be back on the virtual music store, heh heh.

Speaking of playlists, I've made CDs of them and am now dubbing the CDs onto audio cassettes so I can play them in the car. The songs from this decade are pretty much sorted by year, but the older stuff gets some more specialized categories, like cover songs, alt/rock, even one Gen-X type playlist I call "shredder tunes". Unfortunately, since my computer crashed last year, it does not recognize the CDs I made prior, so while it is awesome I can import them over again, I have to hand-type the song and artist and don't have any other data unless I want to look it all up again, which would take more brain power than I possess at the moment.

Before the Crash of 2006, I had over a week's worth of music on iTunes. I had to start over and am now up to three days' worth or about 1200 songs with probably 1000 of those being stuff from my regular music CDs. Once I have finished with the audio cassettes, I will put anything in my music library that isn't currently in a playlist into one.

My next big project is to re-import the rest of my regular music CDs, which will take some time. Then if I am smart, I should inventory those CDs as I really have no idea anymore just how many I have. I imagine the number is at least 300 invidiual discs.

I'm off to make some lunch now, humming "Rock Star" by Nickelback....

Well, this should come as no surprise to anyone, least of all me. Who woulda thunk that Unum would be accused AGAIN of fradulently terminating valid long term disability claims?

Federal Judge Allows Class Action Against Disability Insurer Unum

I'd be more than happy to testify how they forced me to undergo a sham neuropsych exam so that they could fraudulently label me with somatoform disorder, which would entitle them to cut off benefits after 24 months. They lost a case somewhat recently in which they were forced to re-open some 200,000 fradulently terminated fibromyalgia/chronic fatigue syndrome cases.

As of this month, my 2 year limited benefit has expired. They have "generously" switched me back to Reservation of Rights, meaning a month to month temporary extension of payment, while they "evaluate" extending my claim. Essentially, they got freaked out that I have a lawyer involved and are stalling so that they can try to dig up enough dirt on me to legally justify termination of benefits. It is only a matter of time, though, before the other shoe drops and I am forced to figure out how we're gonna pay the bills until they either resume full benefits or settle with me. Ideally, they just offer me a lump sum so I'll go away and shut up, but that rarely happens until you've been without benefits a few years.

I hope they get their asses kicked in the class action suit.

In addition to the stuff I'm viewing via Netflix, Dan and I have also borrowed some stuff from friends, and Dan found some goodies in the cheap bin at Wal-mart, so I should really put in some reviews for those too. But for right now, I'll stick with the Netflix because I've got a nice tidy list in front of me to remind me of what I watched. First things first.

Missed lots of movies that came out during the years I was too ill to be both working and going to the theatre. One of those was "Pieces of April". It's a small film from 2002 starring Katie Holmes, who, prior to becoming Mrs. Tom Cruise, actually could act. Holmes plays April, a girl who wants to make Thanksgiving dinner for her family and introduce them to her new boyfriend. Sounds simple enough, but what family is ever really simple? April herself has had a long history of unreliability, whether with jobs, boyfriends and disappointing her family to the point where they've pretty much given up on her. Only her dad perseveres in trying to get his wife, mother and two children to drive into New York city to give April one last shot. And it may very well be the last, because April's mother isn't well. April, to her credit, is really trying this time, but she doesn't know how to cook, and what's worse, she discovers too late that her oven doesn't work! So she is forced to knock on the doors of neighbors she doesn't know, carrying a giant turkey and begging them to let her borrow the use of their oven. There is one person in her apartment building, played by Sean Hayes, who actually has a new oven, but he becomes angry with April at one point and takes the turkey hostage! The movie is by turns funny and sad and frustrating, very much like a real Thanksgiving with real family and friends. An underrated gem.

I then did a complete 180, genre-wise, and watched "Charlotte's Web" with Dan. This is a live action version of the classic children's book. It was filmed in Australia, I think, and took about three years to make. Dozens of pigs were used in the role of Wilbur, and surprisingly little CG here. Dakota Fanning plays Fern. The spider, of course, had to be completely CG, and Julia was the voice of Charlotte. Most of the other critters were real ones voiced by celebrities. Oprah was a goose. The story was pretty faithful to the book: a runt piglet (Wilbur) hand-raised by a girl (Fern) gets a temporary repreive from slaughter when he moves onto Fern's uncle's farm. Wilbur becomes a celebrity when his friend, a spider named Charlotte, weaves words about the pig into her webs. I saw the animated version at the theatre when I was in the third grade and loved it. This version is even better and is suitable for all ages.

Next was the 2006 movie "Marie Antoinette". I honestly didn't know quite what to make of this. Imagine the young queen as a modern day party girl but still in the original setting and then add '80's music. Some of the tunes suprisingly worked, like Adam Ant during a seduction scene, and then others just annoyed me, like during a formal dance. I guess anybody could relate to the delight of endless new shoes and chocolates. But in the attempt to keep the tone kinda light, the storyline ends prior to Marie's beheading. Overall, I liked it, but I thought it tried too hard to cater to a youthful audience.

Dan chose "The Prestige". I didn't know much about it, but decided to sit down and watch it with him. I was glad I did. It's the story of two highly competitive magicians, played by Christian Bale and Hugh Jackman, around the turn of the 20th century. Each wants to become more famous by pulling off a stunt that the other can't do, and they'll risk injury or even death to do it. One even seeks the aid of Nikola Tesla, played by David Bowie. I figured out the secret to the ending fairly early on, but I enjoyed the path to its conclusion.

Then Dan surprised me by watching "Match Point" with me. I think it was his first Woody Allen movie, not a bad choice because Allen doesn't appear in it, heh heh. It's actually set in England. A former tennis star is hired by a wealthy man to give his family tennis lessons. The pro falls for his employer's daughter. Problem is, he also falls for the fiancee of his employer's son. He does the "proper" thing and marries the woman he is betrothed to and accepts an executive in training position with her father's firm. Instant wealth and social standing, so he should be happy, right? Nothing is ever that simple in a Woody Allen movie. There's an affair, an unintended pregnancy, and a rather gruesome decision that makes the film compelling throughout.

The next movie visited England again, but in a completely different context. "Bend It Like Beckham", which came out in 2002, is about a girl from an Indian family who causes a scandal because she wants to step off the path set for her and become a soccer star. She is pressured to be like her sister and marry a proper Indian boy in a traditional ceremony and become skilled at traditional cooking. She tries to explain to her parents how important soccer is to her, but they can't even accept the shock of her wearing a pair of shorts in public, let alone grant her permission to play on the local girls' team. So she sneaks out and leads a double life, setting off a chain of events both funny and bittersweet. Excellent movie about culture clashes and the complexity of trying to honor oneself and one's family simultaneously.

The same theme continued with my next pick, "Monsoon Wedding". It is set in India, but it is also about modern day values clashing with traditional. A young woman in a middle class family agrees to an arranged marriage even though she is already having an affair with a married man. Her betrothed, while Indian in heritage, has been living in America and expects her bride to move there with him. While bride and groom try to get to know each other during the elaborate five days of ceremonies surrounded by innumerable family members, there are secondary love stories, money worries, secrets revealed, and a monsoon. I found it immensely enjoyable and would watch it again in a heartbeat.

Dan and I ventured into new release territory with "Zodiac". This movie is based upon the real events surrounding the Zodiac Killer in California over a span of many years. The murders he (they?) committed are shown, but most of the film concerns those who tried to solve the crimes. The various law enforcement agencies involved had bureaucracy and jurisdiction issues that kept them from cooperating with one another, which probably led to the killer not being caught. Another complication was the letters sent to the media boasting of the murders, sometimes including details about them that no one but the perpetrator would know as well as puzzles in code. Robert Downey, Jr. plays a newspaper reporter who gets a little too close to the killer. Jake Gyllenhaal portrays a cartoonist obsessed with solving the puzzles who becomes even more obsessed the Zodiac Killer with each passing year and who eventually writes a book. Dan had a very valid complaint: why, when the story was supposed to emcompass nearly 20 years, did the main characters not appear to age or even change hairstyles? Other than that, though, it was a fascinating and well-done film.

Next, I returned to the world of documentaries. I watched "49 Up". It's the seventh in a series of films chronicling the lives of a select group of people from England. The original documentary, "7 Up", was done in 1964 and interviewed several seven year olds from various social classes. The kids were asked what they thought they would be like as adults, what jobs they might pursue, whether they had boyfriends or girlfriends, whether they thought they'd marry and/or have children of their own, etc. Then every seven years, these same people were sought out and interviewed again so you could see how much they and their views did or didn't change. This has been a challenging project, both for director Michael Apted and for his subjects, not all of whom enjoy having their private lives exposed to the world over and over. But curiously, only one person completely stopped participating in the documentaries. At least four had moved to other countries, but they all agreed to continue, with some being filmed in Australia or Spain or Scotland or America and some coming back to their old neighborhoods in England to visit while the cameras rolled. It was amusing to see old footage of a 14 year old swearing they would never marry or have children and then see them at 49 with their spouses, kids and possibly even grandkids. There were some who had already at age 7 mapped out their education and profession and ended up doing exactly that. Others had unexpected detours in career, mental or physical health. I had seen "35 Up" when it came out, and it was like catching up with old friends, finding out what had happened in the intervening 14 years. This series is so much more satisfying than reality TV ever could be because you can't possibly script it. Check it out. Oh, and don't miss the bonus material on the DVD: a half hour interview of Michael Apted by Roger Ebert.

Finally, I caught "Spellbound", which came out in 2002. It's a documentary about kids in the National Spelling Bee. Yeah, sounds like a real yawner, but it's not. Of course, I may be biased because I was in the Colorado/Wyoming State Spelling Bee, and the kid that won went on to win the national bee and is now the pronouncer for it. Anyway, like "49 Up", the kids were in a similar age group (generally junior high: I think the cutoff age is 8th grade, and the youngest ever participant was nine years old) from various socio-economic backgrounds. One girl from Texas had parents who spoke no English, and she was pretty much self-taught without the aid of any electronics. One boy in a wealthy community in California, originally from India, studied via computer every single word that had ever been given at a national bee, had tutors in various languages so he could learn foreign roots of words used in English, and was constantly drilled by his father. The other kids were somewhere in between these extremes. Some were obsessed with spelling, but others preferred math or other subjects and just happened to be good at memorizing words. They also had varying reactions to the stress of the bee and their placement in it. Small spoiler: one of the interviewees does win the whole thing. I enjoyed it a great deal, and I recommend it to any word geek.

Ok, I'm caught up, at least until "Best in Show" arrives on Saturday. Would you believe I started this post on August 17?? That's how brain fogged I am, sometimes taking up to three days to get through a single paragraph.

Will post a bit more about my actual life at some point, at least I plan to.

Aha! My fibrofog lifted for a moment, and I remembered who wrote the original version. Here it is on Ricky Buchanan's Not Done Living....

The Open Letter To Those Without CFS/Fibro

Just wanted to make sure I gave proper credit. I hate when something seems familiar, and I can't remember if I actually saw it before or if it only reminds me of something else.

But on the plus side, I can re-watch a movie or re-read a book just like it was brand new to me, heh heh.

Ran across this on NeuroTalk Communities (which I intend to put on my Links list at some point). This is a variation on "letters" I have read elsewhere, but the sentiment is worth expressing from time to time.

A Letter to Normals From One in Chronic Pain

Please note that I personally prefer not to use the term "normals", but that IS the word most commonly used on message boards to refer to someone free of chronic illness. I prefer to just say "healthy people" as there's less ambiguity involved.

Am once again beginning to inch my way out of Flare-ville, but I'm afraid to jinx it by overdoing on the blog just now. Will post something original of more substance when I am more confident that it won't add more holes to the Swiss cheese that is my brain, heh heh.