Monday, January 30, 2006

Rave of the Day for January 30, 2006: 

Thought I'd pop in for a moment and post this gem from Joan......

Butt Dust & Fleas
MELANIE (age 5) asked her Granny how old she was. Granny replied she was so old she didn't remember any more. Melanie said, "If you don't remember you have to look in the back of your panties. Mine say five to six."

STEVEN (age 3) hugged and kissed his Mom goodnight. "I love you so much, that when you die I'm going to bury you outside my bedroom window."

BRITTANY (age 4) had an earache and wanted a painkiller. She tried in vain to take the lid off the bottle. Seeing her frustration, her Mom explained it was a childproof cap and she'd have to open it for her. Eyes wide with wonder, the little girl asked: "How does it know it's me?"

SUSAN (age 4) was drinking juice when she got the hiccups. "Please don't give me this juice again," she said, "It makes my teeth cough."

Drew (age 4) stepped onto the bathroom scale and asked: "How much do I cost?"

MARC (age 4) was engrossed in a young couple that were hugging and kissing in a restaurant. Without taking his eyes off them, he asked his dad: "Why is he whispering in her mouth?"

CLINTON (age 5) was in his bedroom looking worried. When his Mom asked what was troubling him, he replied, "I don't know what'll happen with this bed when I get married. How will my wife fit in?"

JAMES (age 4) was listening to a Bible story. His dad read: "The man named Lot was warned to take his wife and flee out of the city but his wife looked back and was turned to salt." Concerned, James asked: "What happened to the flea?"

TAMMY (age 4) was with her mother when they met an elderly, rather wrinkled woman her Mom knew. Tammy looked at her for awhile and then asked, "Why doesn't your skin fit your face?"

The Sermon I think this Mom will never forget.... this particular Sunday sermon..."Dear Lord," the minister began, with arms extended toward heaven and a rapturous look on his upturned face. "Without you, we are but dust." He would have continued but at that moment my very obedient daughter (who was listening!) leaned over to me and asked quite audibly in her shrill little girl voice, "Mommy, what is butt dust?"

One wild ride of a week..... 

Well, I knew this week would be busy since I have three appointments, but the car accident really threw a monkey wrench into things. And recently, it got even more complicated, but in a good way.

The car insurance rep and Dan have been playing phone tag since Friday. I have no idea when they'll be able to agree on a time to turn in the title to Ssassy so we can get our check for the car's value. Every day this week has at least one thing scheduled.

Today, as I was getting ready to go to aquacise, Dan got a call from a company in South Dakota he had applied to for a graphic design job a few weeks ago. The company provides internet and cable tv services to hotels nationwide. Dan arranged a formal phone interview (with three managers simultaneously) for Wednesday afternoon.

After aquacise, the class went to lunch. Dan went too since he had driven me. I had grilled chicken, fruit, and a bit of salad with balsamic vinegar and oil and Pellegrino. Funny thing.....the waiter thought I said I wanted Pinot Grigio and asked to see my ID! I guess I should be flattered since I've been old enough to legally drink alcohol for 20 years. After lunch, we made a really quick trip to Penney's because they had jeans on sale and I had a Visa debit gift card burning a hole in my billfold. The really amazing thing was that they had jeans IN MY SIZE, and they completely covered my ass. I bought $95 worth of jeans (three pair) for only $59 including tax. And since the debit card was for $50, I only had to write a check for $9.

Tomorrow is the big bad dreaded FUNCTIONAL CAPACITY EXAM. This is definitely one of those grin and bear it situations, because if I don't jump through the long-term disability insurance company's hoops like a trained poodle, they won't pay me. I am bringing a snack with me because it could last as long as four hours. I am also bringing a typed summary of my daily activities for them to include with my paperwork because I don't trust them to write down accurately what I say. I basically summed up what I wrote on my Social Security function form. I got my sports watch fixed so I can keep an eye on how long I do something because I want to see if there are discrepancies between what I do and what they say I did. My rheumatologist is supposed to get a copy of the exam report, and I will ask him what's in it because the long-term disability insurance company sure won't do it. And of course, Dan will drive me to and from the exam because there's a good chance there will be surveillance on me that day.

On Wednesday morning, I will see my primary care physician so she can assess how the functional capacity exam affected me. I want any pain or fatigue exacerbation documented because I think that's important. I want as much ammunition as I can muster in case the long-term disability insurance company denies my claim.

On Thursday, Dan takes our new Saturn into the shop for a complete checkover. I know they checked it where I bought it, but I don't know if the previous owner kept up on maintenance or not, so I want an assessment of anything that needs replacement or might soon. I also want them to check for a short in the stereo system. The audio cuts out at random times, both on the radio and with a cassette playing. Yeah, I know, a minor thing, but I gotta have my tunes.

Friday, I go back to see the "second opinion' rheumatologist. Basically, I'm hoping he'll be willing to put something in writing stating he agrees with my primary rheumatologist that I can no longer work. My lawyer, who knows this doc, will be sending him a copy of my favorable consultative exam report and will ask him to comment on that too. The reason I'm going to all this trouble is that this rheumatologist is the foremost authority in my state on Sjogren's syndrome. If he believes that this ailment has caused me to become disabled, a judge is likely to believe it too.

Saturday I think is actually free of appointments, but Sunday is the monthly union meeting. I don't think there's any big news to discuss, but Dan and I need to make an appearance because we're both on the executive committee. It's kinda weird going to these things when I haven't even worked in a year.

Will check back in when I can.

Saturday, January 28, 2006

Rave of the Day for January 28, 2006: 

Here's a British article on Kathleen Turner, who has returned to acting despite her rheumatoid arthritis. Thanks to Dr. Karen for sending me the link.....

Kathleen plays on through the pain barrier

I remember being very angry with people talking about how she had "let herself go", not realizing that the steroids she had to take for her illness were to blame for the change in her appearance. I'm glad to see an article like this, because each one brings the public one step closer to understanding autoimmune illness.

Friday, January 27, 2006

Bonus Rave of the Day for January 27, 2006: 

Thought it was time for something sweet. This tale was e-mailed to me by Dr. Karen.....

For animal lovers

Being a veterinarian, I had been called to examine a ten-year- old Irish Wolfhound named Belker. The dog's owners, Ron, his wife, Lisa, and their little boy, Shane, were all very attached to Belker and they were hoping for a miracle.

I examined Belker and found he was dying of cancer. I told the family there were no miracles left for Belker, and offered to perform the euthanasia procedure for the old dog in their home.

As we made arrangements, Ron and Lisa told me they thought it would be good for the four-year-old Shane to observe the procedure. They felt as though Shane might learn something from the experience.

The next day, I felt the familiar catch in my throat as Belker's family surrounded him. Shane seemed so calm, petting the old dog for the last time, that I wondered if he understood what was going on. Within a few minutes, Belker slipped peacefully away. The little boy seemed to accept Belker's transition without any difficulty or confusion.

We sat together for a while after Belker's death, wondering aloud about the sad fact that animal lives are shorter than human lives. Shane, who had been listening quietly, piped up, "I know why."

Startled, we all turned to him. What came out of his mouth next stunned me. I'd never heard a more comforting explanation.

He said, "People are born so that they can learn how to live a good life -- like loving everybody all the time and being nice, right?" The four-year-old continued, "Well, dogs already know how to do that, so they don't have to stay as long."

Live simply.
Love generously.
Care deeply.
Speak kindly.
Leave the rest to God.

Livin' it up, oh yeah, Friday night..... 

I guess doing one's homework really does pay off. I found a total of four cars online that I thought were worth investigating. One was a sports model, which Dan's a bit tall for, one was $1000 more than I wanted to spend but also two years newer than my previous car, and the other two were the exact year, make and model as our former vehicle. Unfortunately, both of the 1999 Saturn SL2s for sale were red, my least favorite color of car to own since I had a very bad experience with a certain red 1984 Dodge Daytona that kept getting pulled over for no apparent reason other than it looked like a flashy sportcar. But the SL2 doesn't look sporty at all, so I told myself not to be a car bigot and give them a shot.

I decided to start with the ones that were the same make and model since they were the cheapest. The first one was 20 miles to the north of us (sometimes the cars cost less once you leave the confines of the big city). It drove fine and looked great, but it was kinda high mileage and for that reason I thought it was a bit overpriced. One of my goals was to find something I could still put a lot of miles on.

The next car was forty miles to the west of us. It was exactly the same as our previous car with anti-lock brakes, air bags and traction control. Had the same power windows and locks, cruise control, even the same cassette player with Bose speakers. Best of all, it only had 68,000 miles on it....not bad for a seven year old car. And technically, this one was not officially red, it was burgundy.....different, right? Ok, maybe not so much.

Dan and I both test drove it to make sure we both liked how it handled. I had run a Carfax on it to verify it was a one-owner car with no accidents or anything obvious amiss. And we went over what all had been inspected on it. In our state, cars are required to pass emissions tests, so they had to guarantee it had passed. The only defects I found were a small scrape on the front fender and a missing plastic panel inside the car (that same panel had fallen off our car as well). It drove quieter than the first car we'd tried and was of course less worn looking because of the lower miles. I had been looking at cars online all week and knew I wasn't likely to find a better deal in our low price range, so we decided to get it.

We managed to get it for about $1000 less than the Blue Book price....part of the discount was because we found it on the internet and called a certain salesperson at a certain number. And they allowed us to write a personal check for the whole amount (I'm sure they did a credit check first). Of course, our check was for about $20,000 less than what most of their customers were paying for new (they mainly sell humongous trucks). Boy, there sure is a lot of paperwork to fill out, even when you're not financing!

I got to drive our "new" Saturn home while Dan followed in our rental. I felt pretty comfortable driving it, good thing since we had to deal with rush hour traffic. I did discover that the radio station reception was kinda fuzzy, so I guess I need to tweak the antenna or something, but no big deal. And I need to remember to adjust the head rest next time I drive because it was a bit tall for me. I was so excited to be driving the car that I totally spaced out adjusting the head rest.

I am soooo relieved to have the car shopping over and done with already. Unless you prefer browsing through lots in person, I highly recommend online shopping. By picking out a specific vehicle and calling ahead, I was able to arrange to have the car out front ready for a test drive by the time I got there. No hiking out to the back of the lot where they usually hide the low-price used cars. No distractions of cars that are nice but not quite what you want. And a HUGE time saver.

So we can turn the rental in tomorrow, and we can get a little bit more normal in our lives. Now Dan can put in more quality neck healing time. I believe he's got the moist heat pack on it right now. It's really rough trying to car shop with a whiplash injury; I know because I've done it before.

I have to do a functional capacity exam next week which will be a whole other kind of exhausting. It will be a huge help to have the crisis of the accident for the most part behind me, so I can focus on making sure I don't injure myself on Tuesday. And I'll have the rest of week to recuperate except for doctor's appointments.

For now, it's time for party tunes!

"That's the way, uh huh, I like it."
-- KC and the Sunshine Band

Rave of the Day for January 27, 2006: 

I'm in the mood for something tried and true....how 'bout blonde jokes? If these offend you, please substitute the hair color of your choice, because they ARE funny. Thanks to Joan for sending this latest crop......

Some old, some new

Blonde  LOGIC
Two blondes living in Oklahoma were sitting on a bench talking........ and one blonde says to the other, "Which do you think is farther away..........Florida or the moon?"
The other blonde turns and says "Helloooooooooo, can you see Florida?????"
A blonde pushes her BMW into a gas station. She tells the mechanic it died. After he works on it for a few minutes, it is idling smoothly. She says, "What's the story?" He replies, "Just crap in the carburetor" She asks, "How often do I have to do that?"
A police officer stops a blonde for speeding and asks her very nicely if he could see her license. She replied in a huff, "I wish you guys would get your act together. Just yesterday you take away my license and then today you expect me to show it to you!"
There's this blonde out for a walk. She comes to a river and sees another blonde on the opposite bank. "Yoo-hoo!" she shouts, "How can I get to the other side?" 
The second blonde looks up the river then down the river and shouts back, "You ARE on the other side."
A gorgeous young redhead goes into the doctor's office and said that her body hurt wherever she touched it. "Impossible!" says the doctor. "Show me." The redhead took her finger, pushed on her left breast and screamed, then she pushed her elbow and screamed in even more. She pushed her knee and screamed; likewise she pushed her ankle and screamed. Everywhere she touched made her scream. 
The doctor said, "You're not really a redhead, are you? "Well, no" she said, "I'm actually a blonde." "I thought so," the doctor said. "Your finger is broken."
A highway patrolman pulled alongside a speeding car on the freeway. Glancing at the car, he was astounded to see that the blonde behind the wheel was knitting!  Realizing that she was oblivious to his flashing lights and siren, the trooper cranked down his window, turned on his bullhorn and yelled, "PULL OVER!"
"NO!" the blonde yelled back, "IT'S A SCARF!"
A Russian, an American, and a Blonde were talking one day. The Russian said, "We were the first in space!" The American said, "We were the first on the moon!"
The Blonde said, "So what? We're going to be the first on the sun!" The Russian and the American looked at each other and shook their heads. "You can't land on the sun, you idiot! You'll burn up!" said the Russian. 
To which the Blonde replied, "We're not stupid, you know. We're going at night!"
A blonde was playing Trivial Pursuit one night. It was her turn. She rolled the dice and she landed on Science & Nature. Her question was, "If you are in a vacuum and someone calls your name, can you hear it?"
She thought for a time and then asked, "Is it on or off?"

R.I.P., Ssassy..... 

The insurance agent called this morning. Our only car is totaled. The damage was $500 more than the vehicle was worth.

Is it crazy to mourn a car?? We took such good care of it, hoping it would get us through until I was granted disability benefits. It was extremely reliable.

We looked at two Saturns today. One was too old (no air bags) and the other needed some work. I'm trying to find the safest car I can afford.

I went online and found two cars that almost fit what I want. I ran Carfax checks on them and they passed 100 percent. So tomorrow I will make some phone calls and maybe Dan and I will test drive them.

I'm really hoping to cut down on the leg work of car shopping by at least finding likely candidates online. I'm simply not able to go from car lot to car lot, walking for miles in search of a bargain. I had to do that seven years ago when my previous car was totaled, and I remember how exhausting it was dealing with pushy salespeople and questionable private sellers.

Dan's neck is hurting him quite a bit now. Sometimes whiplash gets worse after you start to really relax. Thank goodness the moist heat packs and Flexeril do help.

Whatever we come up with, it will need to be something we can still get some serious use out of. Thank goodness we are expecting a refund on our taxes. It will be seven years before our financial situation will allow a monthly car payment, so as long as nobody else hits us.....

But I miss my little white Saturn.

Thursday, January 26, 2006

Rave of the Day for January 26, 2006: 

Now to pause a moment for some much needed hilarity. This is courtesy of Joan. As the popular t-shirt says, "One tequila, two tequila, three tequila, floor"!

New Medication

Do you have feelings of inadequacy? Do you suffer from shyness? Do you sometimes wish you were more assertive? If you answered yes to any of these questions, ask your doctor or pharmacist about Tequila®.

Tequila® is the safe, natural way to feel better and more confident about yourself and your actions. Tequila® can help ease you out of your shyness and let you tell the world that you're ready and willing to do just about anything. You will notice the benefits of Tequila® almost immediately, and with a regimen of regular doses you can overcome any obstacles that prevent you from living the life you want to live. Shyness and awkwardness will be a thing of the past, and you will discover many talents you never knew you had. Stop hiding and start living, with Tequila®.

Tequila® may not be right for everyone. Women who are pregnant or nursing should not use Tequila®. However, women who wouldn't mind nursing or becoming pregnant are encouraged to try it. Side effects may include dizziness, nausea, vomiting, incarceration, erotic lustfulness, loss of motor control, loss of clothing, loss of money, loss of virginity, delusions of grandeur, table dancing, headache, dehydration, dry mouth, and a desire to sing Karaoke and play all-night rounds of Strip Poker, Truth Or Dare, and Naked Twister. 

Straight from the Journal of Solemn Dragon..... 

This actually came out a few days ago, but, hey, I've been distracted. The questions are hers, but the answers are mine. And now I'll post them here because I need distraction from the things that have been distracting me. Feel free to answer the questions however you like in your own blog.....

True or False?

1. French fries taste better off someone else's plate.
True. Especially since I'm not supposed to eat fried food anymore; the only way I get French fries is if I steal them.

2. Bad tasting medicine works better.
False. If it tastes so bad it makes you hurl, what good is that going to do you?

3. Food tastes better before you know the nutritional value (or lack thereof.)
True. This used to be false for me until I was diagnosed with diabetes and suddenly had to know the amount of carbs, fat and protein in everything I ate.

4. Games are more fun before you know their educational value (or lack thereof.)
False. I don't mind learning new things, even if it happens by accident.

5. Games are more fun if you are supposed to be doing something else.
False. I'd rather focus on the game than what I'm putting off.

6. Water tastes better with cut up lemons in it than with cut up limes in it.
False. I like lemon in tea and lemonade, though.

7. Water tastes better with cut up limes in it than with cut up lemons in it.
True. It also is true for Pelligrino.

8. Water is not a beverage.
True. Whether I like it or not, the surest way to keep Sjogren's from dehydrating me is to drink water.

Dan the Man and Ssassy the Car update..... 

Haven't been hiding. I've been researching used cars in case we need to get one. There is precious little to be had that isn't more than I can afford.

The car is at the autobody shop. Their damage estimate is $4000. The Blue Book value of the car is probably only $3000.

The claims adjuster hasn't gotten to evaluate things yet. He'll probably show up at the body shop tomorrow. I hope a decision is made one way or the other soon as to whether the car is a total loss.

Dan tried to go back to work on Tuesday but within two hours, his neck began to hurt again and he had a headache (different from his usual migraines) and was dizzy. He went to his primary care doc today. She has him on a prescription strength anti-inflammatory and Flexeril (a muscle relaxant) and wants him off work until next week.

And a flare has snuck up on me almost without me knowing it. Ninety-nine percent of my flares are the result of overdoing something physical and thus are very dramatic onset. The stress type flare is subtle.....I didn't realize how bad the fatigue was until I overslept three days in a row, and I wasn't aware my pain level had climbed until I tried to do aquacise today. I am, however, acutely aware of the wretched headache that developed within the past few hours.

Dan keeps apologizing for wrecking the car, and I keep apologizing for not being able to work so we could afford to buy a new car. There is no fault, really. Stuff happens.

But it would be great to get out of crisis mode for a few months.

Sunday, January 22, 2006

Dan the Man and Ssassy the Car...... 

Dan's still feeling sore, but just in his neck now. He's been taking ibuprofen and Skelaxin, and he says it helps some. He's also icing it regularly.

Got a pleasant surprise this morning when the car rental place drove all the way out to our house to pick us up since we're completely car-less. We are renting a Nissan Sentra, and like it very much. Luckily, we have rental coverage on our car insurance, so we won't have too much out of pocket expense there.

Got a number for the city impoundment place and went out there. The auto body place we'll be using isn't open on the weekends, so we won't be able to get the car towed there until Monday. But the folks at the impoundment place were nice enough to let us get our personal belongings out of our car, like my handicapped placard, the garage door opener, the parking badge Dan needs for work, etc.

I got a good look at the damage. It's way worse than I was expecting. Two thirds of the driver side door was caved in, the left front wheel appears to be under the engine, and the windshield was broken.

I have to give the folks that design Saturns a lot of credit. There was a cross-section steel frame on the side of that car, and I can guarantee that's what kept Dan from only sustaining a minor injury. A friend of mine was in an almost identical accident with a different make of car, and she suffered multiple broken bones and required many stitches.

I figure the chances of the car being fixable are 50/50. I mean, it's probably repairable, but it might cost more to fix than the vehicle is worth. The car is seven years old and has 160,000 miles on it.

I'm trying to make sure Dan rests this weekend. He has requested Monday off work, which should help. We watched a couple of movies ("Crash", ironically enough, and the original version of "Sabrina") on the couch together tonight.

I'm much better than I used to be at not getting too physically tense in stressful situations, but I must admit to having a massive headache. I guess even a healthy person probably would, though. I'm mainly just grateful Dan's not in the hospital with multiple injuries.

Must sleep. But wanted to update first.

Friday, January 20, 2006


For a bit of distraction, here's a list of the songs I downloaded with the gift card Dan gave me for our anniversary:

Do You Want To - Franz Ferdinand

Wrecking Hotel Rooms - MXPX

DOA - Foo Fighters

Dirty Little Secret - The All-American Rejects

You're Beautiful - James Blunt

Doesn't Remind Me - Audioslave

Don't Tread On Me - 311

Under Pressure - The Used/My Chemical Romance

Goodbye My Lover - James Blunt

Good People - Jack Johnson

Soul Meets Body - Death Cab For Cutie

Swing, Swing - The All-American Rejects

Jesus Walks - Kanye West

100 Years - Five for Fighting

Now I get to start using the card my friend gave me! Wooo hoooo!

New Year starts out with a bang....or should I say a crash?? 

Dan was hit while on the way to work today. Not serious, but certainly no one's idea of a good time. He did get to visit the brand new ER nearest our home.

He was at an intersection waiting to make a left turn. A car coming toward him had its turn signal on, so Dan thought the other guy was gonna turn right at the intersection. Instead, the other car didn't turn and continued into the intersection after Dan had started to turn.

So a 4x4 hit our little Saturn on the driver's side front panel. I'm amazed the airbag didn't go off. The other guy's did.

Dan was taken out of the car and put on a stretcher with a neck brace on. The x-rays are fine. His neck is pretty sore, though.

The car is not driveable and was impounded. It's our only vehicle, so I had to call my dad who lives two counties away to come pick me up to get Dan at the ER. Dan was given an address of where the car was taken, but no phone number.

Dan got the ticket and will have to go to court. The other guy wasn't charged, even though he had his signal on and then didn't turn. And the cop didn't give Dan ANY info about the other guy, which I thought was weird.

Right now, Dan's icing his neck, and I just gave him some ibuprofen. I'm going to try to get him to see his primary care doc on Monday because I bet he'll still be sore then.

I guess tomorrow we try to get a rental car and see if the impoundment place is open on Saturday. I need to get my handicapped placard out of the glove box. I'm not sure if the car will be totalled or not: the guy that hit him was probably going at least 45mph.

I'm grateful it wasn't worse, but this is a very bad time for us financially if we end up needing to replace the car. With me having no steady income for almost a year due to disability, we've had to live on our savings to get all the bills paid. Our current vehicle has very little value, certainly not enough to buy a used car with if it is totalled out.

I will of course keep an eye on Dan this weekend and will urge him to seek proper medical treatment if he needs it. Right now he says he's more angry than hurt. I feel really bad for him.

So far, I'm not seeing an improvement of 2006 over 2005. Sigh.

Thursday, January 19, 2006

Actually, I'm NOT paranoid..... 

My long-term disability insurance company may, in fact, be out to get me. Here is an article I came across last night while perusing "The Hummingbird's Guide" website (see the post below this one). It has five pages to it, so be sure to click the link at the bottom of each page:

Debra Potter Story

Am about two-thirds of the way done with all the phone calls I need to make. I lucked out with the second opinion rheumatologist....he had a cancellation, and I got an appointment for February 3rd. Also re-sheduled the gastroenterologist appointment.....the neuropsyche exam for the LTD company was set up for the same day, and I'm not allowed to change that one. So I will see the gastro doc in March. I think I"m finally done messing with refills for my meds....the pharmacy finally got more Lyrica, and they got the sleep specialist's ok to refill the Klonopin, as much as I loathe the stuff. One really embarrassing thing happened with my mail order drug refill....I charged $160 worth of refills to my flexible spending account card right after the new year started, not knowing that the company had issued new cards with new numbers and had cancelled the ones from last year even though the expiration date on the card was 2009. I got the new card yesterday, and a call today from the mail-order place saying the card number I gave them was no longer valid. Luckily, they let me just give them the new card number and didn't make a big deal about it.

Got my hair cut today. I decided on a new style since all of my cuts except one in the past year and a half turned out really crappy. I told the lady to just cut it so that I would have bangs and sides that would lie flat against my face since that seems to be what my hair wants to do anyway. I just can't seem to achieve that flipped-ends look even with mousse and wax, and I'm tired of trying. I hope to soon resolve the crappy shampoo phase I'm going through. I used to use Pantene until they changed the formula, and it made my hair fall out even more than usual, so I've been looking for a replacement. Basically, I just tried whatever I had a coupon for. Dove, Suave, Herbal Essence and Vive were all ok, but I was hoping for something that would make my hair soft and shiny. Then I made a big mistake: I bought Garnier Fructis. It weighed down my hair and made it look dirty. And then I made things worse. Dan had inadvertantly bought Head and Shoulders with aloe in it (normally he gets the regular Head and Shoulders). He used it, and it clogged his pores and made his scalp break out. He had bought two bottles and was going to throw them out. I, being the cheapskate that I am, said I'd use them up. Holy cow. That stuff was like pouring glue on my head. And it doesn't wash out easily. I had my hair washed at the salon today, and my hair is STILL practically glued to my head! How do you get a bad shampoo out of your hair?? Anyway, I'm gonna use up the last of the crappy shampoos and obviously never buy them again. The salon was having a 75 percent off sale on hair products, so I bought a small three pack of Paul Mitchell containing shampoo and two styling products since I'm all out of hair spray/wax/whatever you call it. I figure it can't be any worse than the cheap shampoos I'd been buying, and maybe I'll actually achieve the soft and shiny I was after in the first place. Sheesh.

In other news, I got some stuff from my lawyer in the mail today: copies of my appeal letter to Social Security, the letter to my LTD company asking for a copy of my entire file, and letters to my primary care doc and my ENT asking them to review the CE report and sign a statement that they were in agreement with it. I left a message on his voice mail today asking him to call me back. I need to tell him about the appointment with the second opinion rheumatologist and the FCE and neuropsyche exams I've been assigned to.

I did finally get to Target last weekend to spend some gift cards. I did the usual once a year undie purchase. I tried on jeans and as usual, the only ones that fit covered just half my ass (don't care for the "air conditioning" in winter whenever I sit down, heh heh). So I bought three pair of sweats instead. I also bought thermal underwear, two tops and two bottoms; since it was packaged, I couldn't try it on first. I went by the "size guide" on the packages, which was pretty far off. The bottoms are baggy, but I don't mind as they might shrink a little when washed. The top I put on tonight, though, is so tight it feels as though it has shrunk already. It was obviously designed for a woman with no chest. I don't think I can take it back, but I will return the one I haven't opened yet and see if I can exchange it for the next size up. The effort of trying on jeans and sweats wore me out horribly, to the point I felt like I was gonna pass out before I left the store that evening, so I didn't spend all my gift cards yet. I plan to use the remaining balance on music CDs. What a shock, eh?

Believe it or not, I have other gift cards I have not spent yet. How I would love to take a Saturday and just go on a spree, but I don't have that sort of energy, so I have to ration out my trips. I have one of those new kinds of cards where you can basically spend it anywhere that accepts Visa. Way cool! I will continue my quest to find a pair of jeans that both fit AND come within shouting distance of my waist. I'll try J.C. Penney first. And I still have a card for a scrapbooking place. Oh, and just yesterday, I got ANOTHER iTunes gift card! Yayyyyyyyy! I've got just one more download left on the one Dan gave me in December. When I get done downloading current tunes, I may return to my unfinished projects: perusing the Billboard charts by decade to make my own pop playlists. I finished the one for the '90's, and am very nearly done with the '80's. So I might get to start on one for the '70's. Don't worry, I won't make anyone else listen to it. I may be a bit loony at times, but I'm not evil.

Dan and I got to eat at P.F. Chang's again last weekend because Dan has a gift card, and we still have a balance left over, so we can go again sometime and get about half that meal for free. I've been trying a different gluten-free menu item each time we go. This time, it was shrimp with lobster sauce. Next time, I'm thinking about trying spicy mango chicken. Dan also has a card good for a few different chain restaurants: the ones I recognized on the list were Chili's and the Macaroni Grill. I have no idea if I can find anything I can eat at either place. I need to do some research.

Oh, and I did get out to see the "Narnia" movie. I enjoyed it quite a bit. I know a lot of people are comparing it to "Lord of the Rings" since Tolkien was a contemporary. They are not supposed to be similar. Lewis was writing a children's tale about real kids evacuated from a real war stumbling upon some magic and some inspiration. Tolkien, however, had created a completely self-contained fictional world, and while "The Hobbit" was for kids, "The Lord of the Rings" was not. Anyway, while it was funny to see beavers wearing armor in the "Narnia" movie, I was dazzled enough by the rest of it to not mind terribly. I would not have imagined Liam Neeson as Jesus, but I will admit he does make an impressive lion's voice. I still want to see "King Kong" while it is in the theatres, but I don't know if it will happen or not.

I still owe an article for But You Don't Look Sick this month. I have been too distracted with all this disability stuff to dedicate myself to reading anything appropriate for review and for awhile, I didn't have the funds to buy any books. I did just finish "Servant of the Bones" by Ann Rice, which had been sitting on a shelf for years. Since I am running out of time and don't have a new book ready to start yet, I think I will go back through "The Trigger Point Therapy Workbook" and write something on that. I am thinking of acquiring a copy of the new translation of "Night" by Elie Weisel. Yeah, I know it's the Oprah Book of the Month, but there's a special reason for me wanting to review it. I first read it in high school, and I met the author, and it changed my life.

Have been keeping up on "Lost", but too many other things have been going on for me comment extensively on it. I'll just say that the show about Mr. Eko was the finest of the second season, right up there with the best of season one. Completely fresh back story, awesome acting by the man who plays Eko (I'm sorry I can't remember his name), and finally Claire gets some clarity on Charlie, heh heh. And now we know that it takes a man of faith to stare down the monster. Last night's episode wasn't as good, but it did move the story line along nicely. Sun and Jin are probably going to have a marriage as equals, Hurley's all set to hit on Libby (yayyyyyy for Hurley!), Jack thinks he's gonna start an army even though he is probably outnumbered by the "others", and Michael will be AWOL at least one episode longer. So who's gonna take care of Vincent now? Ana Lucifer? Oops, I mean Ana Lucia. I hope there is a confrontation between Locke and Jack, because Jack's God complex has gone on long enough. Next week, Charlie is confronted about the heroin, and someone maybe tries to steal the baby again??

Ow, ow, ow, hand cramps. Must stop here.

Rave of the Day for January 19, 2006: 

Feeling a bit more human today. Still having to force myself to do simple things like make phone calls or eat on time, but at least I (barely) got myself out of bed today.

One thing I should keep reminding myself is that at least I can most days get up. Some cannot. Here is a transcript from an interview with a lady in Australia who has severe M.E. She conducted this interview via phone as she has been bedridden for years. After reading this article, you may want to peruse the rest of Ms. Bassett's site as it is excellent:

Bassett Interview

"A Hummingbird's Guide" has done quite a lot to challenge the common misconceptions surrounding what we in the U.S. call Chronic Fatigue Syndrome. It's an excellent reminder that even someone very sick can accomplish great things.

Wednesday, January 18, 2006

Uh oh. 

Ok. Confession time. I've caved.

The FedEx truck showed up in front of my house about 4pm yesterday. Had me sign for two letters from my beloved long-term disability insurance company (beloved being a facetious term of course). Each letter assigned me to a test with an "Independent Medical Examiner". The company claims they can do this contractually.

The tests in question are a functional capacity exam (FCE) and a neuropsyche exam. For each, I tried to get the company to allow me to go to a local practitioner who would be impartial. On the neuropsyche, the response was not just "no", but "hell no". (ok, it actually was, "we never allow that sort of thing", but you get the idea). For the FCE, I actually had my rheumatologist prescribe the exam with a certain physical therapist, hoping that would help. Hell no. I was assigned to a facility that has a reputation for exams biased in favor of the insurance company.

The FCE is in two weeks. It's expected to last FOUR HOURS. Most days I'm lucky to stay awake four consecutive hours; I don't know what the hell they think I can do for that amount of time. FCEs were originally a vocational rehab tool. Say you were injured, causing you to be off work for awhile and have completed physical therapy. Then you do supervised activities that simulate your job to see if you're ready to return. But an FCE in the hands of an insurance company can be horribly misused. For instance, I experience rapid muscle fatigue. This could be interpreted by an inexperienced or unethical physical therapist as lack of motivation or malingering. Another serious problem with FCEs is that they only see you the day you exercise, not the following day when the flare sets in. Most people with fibromyalgia can do a certain amount of exertion but experience a delay before the effects of that exertion are felt. I've made an appointment the day after my FCE with my primary care doctor so she can document my condition.

The neuropsyche exam is in six weeks. It is scheduled to last EIGHT HOURS. Good Lord. My previous neuropsyche only took four hours, and my brain just about collapsed after that one. This exam might not be used against me right away, but if there is any evidence in it that I have a mental disorder, the insurance company can claim my entire disability is mental and cut my claim off after 24 months.

And today I went back to see the doc that did the injections that didn't work. Since I experienced a recurrence of pain when I went back to my normal exercise, what they would like me to do is go to a physiatrist (a physical therapy MD) for treatment and then repeat the injections. This is a perfectly reasonable request, but for some reason, it was the last straw.

I just can't handle anymore procedures, tests, appointments, pills, whatever. I crawled into bed when I got home, not because I needed a nap, but because I couldn't face the world and wanted to hide. I have prescriptions to fill, appointments to make, forms to fill out or have someone fill out, and meals to eat on schedule. But I just didn't give a shit anymore. I know I'm depressed not when I'm sad, but when I don't care. That horrible inertia hits like an anvil and pins me to wherever I am. I know I still have a life to lead, but it doesn't seem important enough to bother about. I had to ask Dan to literally drag me out of that bed, or I would have stayed there all afternoon and night and would still be there when he came home from work. I forced myself to make a few calls. Everything I did seemed to be like walking through mud, because I didn't much care whether it got done or not. I put off eating until I started feeling hypoglycemic, and then once I started eating, my food compulsion kicked in (I'm a former binge eater) and I couldn't seem to stop eating. Then that would make me nauseous, and I'd lose interest in food again. And if I sat on the couch, I became glued to the spot.

I get very defensive about people telling me I'm depressed when actually the problem is that I am sick. That is because I was institutionalized as a teenager, so I know what serious depression feels like. I very seldom feel the way I did back then, but the past few days have been the real deal. It frightens me. If I just give up on getting out of bed each day and let the inertia suck me into nothingness, then the illness has won. Social Security has won. That good for nothing long-term disability insurance company has won. I let myself down, and worse than that, I let Dan down. I owe it to him to make sure that if I can't work, then I somehow obtain the disability benefits I have earned.

I guess it's a good thing I was angry last week. Generally, I avoid excessive or misplaced anger, meaning I don't come home and kick the dog because someone cut me off on the highway. But righteous indignation does have its place. That Social Security denial ticked me off enough to take immediate action, and I've got the appeal in place. But for me, anger also has its downside, justified or not, because it's extremely exhausting. And I think I'm experiencing the aftermath of last week's productive tantrum. Emotional exhaustion can be damned near as damaging as physical exhaustion.

I'm not sure I want to post this. What I really want to do is delete it and go hide in bed. But I'll be even more miserable if I do that. Maybe it wouldn't be such a horrible thing to let people see the uglier side of me. To see what I fight against every single day. And to maybe understand why I'm so damned tired.

"Yesterday is a wrinkle on your forehead
Yesterday is a promise that you’ve broken
Don’t close your eyes, don’t close your eyes
This is your life and today is all you’ve got now
Yeah, and today is all you’ll ever have
Don’t close your eyes
Don’t close your eyes"

-- from "This Is Your Life" by Switchfoot

Tuesday, January 17, 2006

Perusing the Globes.... 

Watched the Golden Globe Awards tonight for the first time ever. The awards are for television and film picked by the Hollywood foreign press. I find it odd that they put musicals in the same category as comedy, but otherwise, I'm cool with it. Classier than the various music award shows, but not as formal as the Academy Awards. Nevertheless, plenty of stargazing to be had.

I will come right out and admit that most of the film awards were beyond me as I had not seen any of the nominated movies. I don't know if that means I have bad taste or what. Actually, if Dan and I agree to go to a movie at the theatre, it's usually a comedy because that's what we can agree on. And since they lump the musicals in with the comedies, naturally the one year I watch, a musical wins all the awards. But I'll probably get around to watching "Walk the Line" eventually.

George Clooney got Best Supporting Actor for "Syriana", a film I don't doubt is good but one I probably won't seek out unless Dan wants to watch it. Same for "The Constant Gardener", for which Rachel Weisz got Best Supporting Actress.

I'm also at a serious disadvantage no longer having a satellite dish. I haven't watched "HBO" in two years, so some of those shows are Greek to me. So I cheered like crazy when Geena Davis won Best Actress TV Drama for ABC's "Commander in Chief". She added some humor to the evening when she told a touching story of how a young girl told her she was inspired to grow up to be president, then admitted she made up the story.

Most surprised recipient of the night was Sandra Oh for "Grey's Anatomy". She was extra jittery in a dress that had no sides to it, and when she got up on the stage declared that she felt like she'd been set on fire. Good actress, good show.

I think Steve Correll was a bit shocked with his big win over the "Earl" actor. He gave the funniest speech of the evening, reading from a piece of paper he said his wife handed him in which it thanked her about a half dozen times. I like the "The Office" and am considering viewing the new NBC "Must See" Thursday night lineup.

Surprise shut out for the women of "Desperate Housewives"! The only nominee for TV comedy that wasn't on that show won. That's all right; all the ladies got to go on stage when "Housewives" won best Comedy Series. And Felicity Huffman got an amazing Best Actress Film Drama for "Transamerica", which I have to admit I hadn't heard of but maybe will watch sometime.

Did anyone besides me find it amusing that the guy who won Best Actor MIniseries or TV Movie was an Irish dude who played Elvis?? Ok, I didn't see it, so maybe I shouldn't judge.

"Brokeback Mountain" won many of the Film Drama awards, including Best Screenplay, Best Original Song, Best Director, and Best Film. I have to admit I'm intrigued by most of Ang Lee's films, so maybe I'll catch this one. Glad to see Mr. Lee win; I've been a fan of his since "Eat Drink Man Woman". He's versatile and unpredictable.

Worst dress of the evening was worn by Gwyneth Paltrow. Pregnant or not, what's with the weird capped sleeves and collar? Anyway, she presented Anthony Hopkins with the Cecil B. DeMille Award. I greatly enjoyed the film retrospective (it helps I'm a big fan) and his speech afterward. A lot of shows drag during the lifetime achievement awards, but this one was good.

Must give Mariah Carey props because tonight nearly half of her boobs were covered. And Pamela Anderson's were totally covered, which pleased me and probably disappointed millions of men around the world. Queen Latifah had a beautiful blue dress on, and Geena Davis had on a very classy bright red number, a color I would not expect a redhead to wear. My fave men's attire was worn by Jamie Foxx, who had a dark purple shirt on with his suit.

John Williams is still winning awards for his film scores. Tonight it was for "Memoirs of a Geisha". I seem to recall him winning awards in the 1970's. He's holding up well.

And the least surprising TV victory of the night was for Best Drama. "Lost" won, of course. Yayyyyyyyyy!

I was impressed enough that I will probably watch again next year.

Saturday, January 14, 2006

Rave of the Day for January 14, 2005: 

For those of you who are spiritually minded, here is a webpage that contains a lengthy index of other sites with spiritual content. I've visited a few of these pages, and they are beautiful. Thanks to Joan for alerting me to it.....

Spirit Index

Nice way to relax, be inspired, or just admire some artwork. Enjoy!

Whirlwind visit with lawyer.... 

Yesterday, Dan and I went to see my lawyer. We already knew each other slightly since he had given a speech to my fibromyalgia support group last year and I'd talked to him afterward and had gotten his card. He has 20 years of experience helping fibromyalgia patients with their SSDI claims. It was a good sign went I walked into his office and saw a "Fibromyalgia Aware" magazine on the coffee table. He also brought in an old copy of "The Sjogren's Handbook". I told him there had been a new edition printed last year, and he said he'd have to get one.

I showed him the denial letter from Social Security, and he was amazed they denied me despite 10 different specialists saying I couldn't work. He was even more amazed when he saw the favorable CE report. He knows the doctor that did the exam and said she hardly ever issues favorable reports. So we started talking about what we could do next.

My heart sank when I found out it is now a year long wait to see a judge. The lawyer had an idea about a way to try to speed the process up, though. He could ask for an on the record decision. That is when someone with a very strong case has it reviewed on the basis on what's already in the file without a hearing (and usually several months sooner than the hearing would be). I was told there was about a 20 to 30 percent chance of being approved this way, but I figured there was no harm in giving it a shot. If they won't approve it early, I just end up waiting my turn for a hearing anyway.

We went over some things the denial letter overlooked. They did not list my peripheral neuropathy, carpal tunnel or hearing loss among my impairments and didn't cite the neurologist who did the EMG as a source in making their decision. The records for all of that are already in my file. They also didn't list my edema, but I haven't really had anyone specific treat it other than to tell me to wear granny hose, so it would be hard to prove that needing to elevate my feet is one of the things preventing me from working. We also looked in the Blue Book (Social Security's list of disabling impairments) to see if gastroparesis was in there; it isn't.

The lawyer thought it would be beneficial to see if we could show several of my doctors the favorable CE report and see if they would write letters to Social Security agreeing with it. He also recommended that I make an appointment with my "second opinion" rheumatologist since I hadn't seen him in a year and maybe a more current evaluation would be more compelling. He also suggested I have one or two of my docs besides my primary rheumatologist (he already did one) fill out residual capacity reports (reports listing my limitations). And he intends to write to my long-term disability insurance company informing them that I am appealing my Social Security denial and that I have representation. Well, that's the official reason for the letter; the unofficial reason is that by them knowing I have a lawyer involved, they might back off a bit with their delaying and bullying tactics.

We went ahead and filled out all the appeal and other offical paperwork right there in the conference room. The quicker Social Security receives my appeal notice, the quicker my name gets on the waiting list for a hearing. And the less hassle for me trying to figure out what to write where.

I was praised for having all the info he needed handy and legible. I told him how it took me a month to assemble all the stuff for the Social Security application. And how it was getting harder and harder to do this all by myself.

So it is a great relief that someone is going to bat for me, even if he does get 25 percent of my Social Security backpay. Because I still have to deal with the long-term disability insurance company and the tests they're gonna make me take. There is still a chance, a large chance in fact, that the LTD company could deny me AND I could not get the on the record decision with Social Security. If that happens, I will have NO benefits while I wait for a year for a hearing and while I sue the LTD company.

But for now, things are about as ok as they're gonna get.

Friday, January 13, 2006

A-Z Meme 

Well, I got all caught up in what I needed to gather to take to the lawyer tomorrow, and I forgot to eat until after 10:30. Because of my digestive problems, I am not supposed to lie down until at least three hours after a meal, so when I finished the lawyer-ly stuff, I had a bit more time to kill. I found a meme on sol's journal (see Journal of Solemn Dragon on my links list), originally started by ellem, I believe, and decided to provide my own answers. I am such a sucker for memes. You may either read on or scroll down to something else, your choice:

A - Accent:
I'm like a sponge; I begin speaking like those around me. I lived in the South as a baby, so my first words had a Southern accent. Nowadays I suppose someone would describe my accent as Western?? After all, I address everyone as "dude".

B - Breakfast Item:
High Protein Boost.

C - Chore you hate:
Toilet cleaning, even with a long-handled brush.

D - Dad's Name:

E - Essential everyday item:
Mac equipped with iTunes.

F - Flavour ice cream:
Vanilla, because there's less likely to be gluten containing ingredients in it (as long as they use pure vanilla).

G - Gold or Silver?:

H - Hometown:
I was born in Hampton, Virginia.

I - Insomnia:
Hell, yeah.

J - Job Title:
At the moment, I am title-less.

K - Kids:
No human ones. I am the guardian of the world's most spoiled English springer spaniel, though.

L - Living arrangements:
Single family home. This may change if I don't get approved for disability benefits.

M - Mom's birthplace:
Little Rock, Arkansas.

N - Number of significant others you've ever had:
I must plead the fifth on this one. Seriously. When Dan and I were first dating, he asked me this, I answered honestly, and it almost ended our relationship. Ok, we know it's more than one since I was married before. And it's fewer than the number Andie McDowall described in "Four Weddings and a Funeral".

O - Overnight hospital stays:

P - Phobia:
Needles. The ultimate irony because I've been poked by more needles in the past nine years than most people experience in their entire lives.

Q - Queer?:
Um, can you be a bit queer and not be gay? Hmmm....I'll just settle for unusual.

R - Religious Affiliation:
United Church of Christ. Yes, there is actually a denomination liberal enough to accept me.

S - Siblings:
One younger sister.

T - Time you wake up:
I try for 10am. Doesn't always happen. 1pm is much more common.

U - Unnatural hair colours you've worn:
Blonde stripes, cherry red stripes, nearly black, burgundy, violet, carrot-top red.

V - Vegetable you refuse to eat:
Lima beans. I'm not too keen on black-eye peas either.

W - Worst habit:
Chewing on fingernails after they have broken.

X - X-rays you've had:
Neck, entire spine, hands, feet, knees, hips, ankles, lungs.

Y - Yummy:
The pizza I made tonight! Soft Italian gluten free crust, organic sauce, mushrooms, mozzarella, chedddar.

Z - Zodiac sign:
Aries. What else would you expect?

Thursday, January 12, 2006

Insult added to injury, er, illness..... 

When I was told I would have a consultative exam for Social Security, I requested that a copy of the report be sent to my rheumatologist since I knew they wouldn't send one directly to me. Then I asked the rheumatologist to pass along a copy to me. That copy arrived in the mail today.

One thing that was amusing was the reference in the report, not once, but three times, to what a pleasant person I am. And since the doc spent an hour mainly chit-chatting with me during the exam, she said she found me extremely articulate and educated.

The important things that were noted were my slowness of movement, the appearance of severe pain, no color in my hands, feet or face, weakness in hands, arms and legs and speech problems. Based upon these, she issued this statement: " This claimant has a very complex multisystem illness. .... A lot of her problems point towards central nervous system illness. .... in this condition, the claimant is not able to perform in any type of regular work."

This should be great news, right? I should be overjoyed that a doc paid by Social Security found me to be disabled.


Why the HELL, then, did Social Security deny my claim? They review reports from 11 of my regular doctors plus one I'd never met before, and they all say I can't work. And Social Security ignors them. Bastards.

Now, I know this sounds incredibly arrogant, but, based upon my denial letter, I am concluding that I am being punished for being intelligent and relatively young. The only two sentences in the whole denial letter that refer to why they think I can work both mention age and education.

This is such bullshit. I don't play dumb. If I had, I would never have been diagnosed with Sjogren's syndrome in the first place. I would still suffering under the medical world's assumption that I "only" had fibromyalgia and would be fine if I would just take some anti-depressants and get off my fat ass and exercise. Instead, I educated myself, even when I didn't completely understand the technical stuff. I learned enough to realize that I had an autoimmune disease (turns out more than one), and I was articulate enough to convince my ENT to do the lip biopsy to confirm this. I HAD to educate some of my doctors just to ensure I got proper treatments.

Yet it is the people with high school educations who are the most likely to be granted disability. Because no one wants to waste their time training them, I guess. Yes, I can remember with great detail things that happened toward the beginning of my illness or further back when I was healthy. But as of the past year, I can't remember new software training for much more than 24 hours after receiving the information. So what difference does my college education make in the long run? Who is gonna hire someone with an IQ of "high average" when they can't find their car in the parking lot, or who gets lost driving to places she has been many times before? Or who doesn't recognize their own doctor? That happened to me just last week, when I went to get the injections in my back. I didn't recognize the doc, even though I had had an exam with him and had talked with him at length about the procedure just two weeks prior. And I didn't recognize the endocrinologist at my last appointment, even though I'd been to see her probably five times.

Contradiction in terms? Hell, yeah. Even I don't understand it. I know I'm a smart person. But this damned illness interferes with that intelligence, to the point that I don't think I could be a trustworthy employee. Anywhere.

I really need to stop ranting here. I see the lawyer in the morning, and I need to get things ready. I want to write up a list of questions for him (because I know I'll forget to ask them otherwise), to track down key medical records I think Social Security overlooked, and to show him stuff I forgot to give Social Security. I have 60 days to appeal, but I have to figure out what new evidence I'm gonna give them and have it ready to go within that 60 days.

I promise that after I get these pressing matters taken care of, I'll get back to what I'd rather be blogging about: last night's "Lost", a new meme, some inspirational links, what I've been reading, the "Narnia" movie, and what I've been downloading on iTunes. You know, the REAL news in my life.

Social Security can bite me.

Wednesday, January 11, 2006


Sorry I couldn't think of a more dignified word to sum up my reaction to the news I got today. But it's my blog and I'll swear if I need to. Well, not TOO much as I would turn away some of my readers.

Got a letter in the mail with yesterday's date stamped on it entitled "Notice of Disapproved Claim". The Social Security Administration has determined that I am not disabled under their "rules". Ironic that I get this just 11 days after the consultative exam. I think they probably gave that doc's report the most weight. Talked to my rheumatologist today, and he doesn't have the CE report yet, so he didn't know I'd been denied either.

Odd, though, that they used reports from 11 of the 15 docs I gave them medical records to make their decision. They do acknowledge that I do have Sjogren's syndrome, fibromyalgia, hypothyroidism, gastroparesis, periodic limb movement disorder, diabetes and cognitive and memory problems, yet the sum total of all this is not disabling? Do they think I'm collecting ailments as a hobby??

They actually come out and say that I cannot do any of my previous jobs. In addition, they have determined that I should not lift more than 20 pounds (I can barely lift 10) and should not do work requiring me to stand, balance, crawl, crouch, bend climb or kneel for extended periods, or do anything complex or which requires attention or concentration. Um, what the hell else is left? Yet they insist I can still work.

I think they are discriminating against my age and education level. The letter actually states, "at your age, 41 years old, and with your colllege education, you can do other work". Well, pardon me for getting sick at such an inconvenient age and for getting an education while I was healthy! Tards!

And just what are these "other" jobs? What employer in their right mind would hire someone who must rest 12 hours a day, who falls asleep at inappropriate times, who must use the restroom at inconvenient times, who can barely walk across a room, who runs into things due to vertigo, who misunderstands simple instructions, who can't sit for more than two hours without aggravating her edema, who can't do math in her head, who sometimes has trouble speaking and writing, who can't do repetitive activity, who can't hear very well, who forgets things like how to spell her own name, and who can't even drive because she's impaired by her meds?? I couldn't even qualify for a job where I ask people if they want fries with that.

It's not that I want to be disabled. I really don't. It has broken my heart, some of the job opportunities I've had to let go by. Were I healthy, I could do graphic art/copy writing/web design for a prominent company, and I'd be good at it, too! But then I remember how I couldn't handle my light sedentary, low stress, no-brainer 36-hour a week job at the newspapers after I got sick, and my dream job gets to go to someone else. How I wish I could assure Dan that we'd have no problem paying our bills. Now I can't honestly assure him that we won't lose the house.

So how have I handled the worst news of the year so far? First, I read all the material Social Security sent me on what to do if I don't agree with their denial. Then, I called a lawyer and made an appointment to meet with him on Friday morning. Dan will take me and will haul the behemoth file folder I have accumulated with medical records and other necessities. I also want him to help me talk with the lawyer in case I forget any stuff.

Next, I whined on a bunch of message boards and railed against the unfairness of the Social Security system. Then, I broke into Dan's stash of candy. He had peppermints covered in dark chocolate, and it was an emergency!! Then I polished off all the cheese spread in the house. Kinda hard to eat yourself into a coma without any meat, alcohol or desserts in the house. And I can't even order a pizza.

So I've been alternating between depressed, pissed and scared ever since I opened that envelope. If the long-term disability insurance company denies my claim with them as well, I'm screwed. Is it too much to ask to be treated like a human being who simply had the misfortune of getting sick?? I shouldn't have to be at death's door for it to be agreed upon that I shouldn't be working.

What happens next? Well, I have 60 days to appeal Social Security's denial. When I appeal, I ask for a hearing with an Administrative Law Judge (ALJ). And then I wait. And wait. And wait. I believe the wait time for a hearing is at least six months. So it might be summer before I see the judge. At the hearing, it will be me, my lawyer, the judge, probably a vocation expert who states what other jobs I can do, Dan if they will allow him in, and any other witnesses the judge allows. The hearing is informal, but it is recorded. The judge reads all the stuff in my file and listens to all that is said in court. He/she then can take about a month to decide. And then it will take about another month for me to find out what the decision is.

I think my case is strong, I really do. Social Security already agrees I can't do any of my past jobs. Now I just have to convince a judge that I can't be a greeter at Wally World, a button sorter or a ticket taker or whatever exciting occupations that supposedly exist in the US economy. And having the lawyer helps, even though I'm not thrilled about giving up 25 percent of my back pay as a fee. In my state, you have a 50 percent chance of winning a judge hearing, but if you have a lawyer, the chance of approval goes up to 75 percent.

But the denial still hurts. A lot. And I won't say I'm not bitter, because I am.

"I thought I was mistaken
I thought I heard your words
Tell me how do I feel
Tell me now how do I feel

"Those who came before me
Lived through their vocations
From the past until completion
They will turn away no more

"And I still find it so hard
To say what I need to say
But I’m quite sure that you’ll tell me
Just how I should feel today"
--from "Blue Monday" by New Order

Tuesday, January 10, 2006

Rave of the Day for January 10, 2005: 

I think this one has been around for awhile, but I don't remember posting it on my blog. Thanks to Joan for e-mailing it....


Just up the road from my home is a field, with two horses in it. From a distance, each looks like every other horse. But if one stops the car, or is walking by, one will notice something quite amazing.

Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him. This alone is amazing.

Listening, one will hear the sound of a bell. Looking around for the source of the sound, one will see that it comes from the smaller horse in the field. Attached to her bridle is a small bell. It lets her blind friend know where she is, so he can follow her.

As one stands and watches these two friends, one sees how she is always checking on him, and that he will listen for her bell and then slowly walk to where she is, trusting that she will not lead him astray.

Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges.

He watches over us and even brings others into our lives to help us when we are in need. 

Sometimes we are the blind horse being guided by God and those whom he places in our lives. Other times we are the guide horse, helping others see God.

Good friends are like stars.  You don't always see them, but you know they are always there.

Monday, January 09, 2006

Monday, Monday..... 

Dan took the car to the shop this morning. Turned out it wasn't a simple hose or anything like that. Dan told me what they had to do, but I was still wiped out from my meds and don't remember what he said. I do, however, remember the cost of repair: $250! So much for carefully budgeting my first insurance check.

Called Medic-Alert. It will cost me $20 to replace my lost bracelet. I ordered the same exact one as last time, with the purple emblem. I should get it in a week or two.

I don't think I mentioned earlier that one of the CDs I got for Christmas was "The Road Less Traveled" by Melissa Etheridge. It's a greatest hits collection, but five of the songs aren't available anywhere else, so that alone makes it worthy of purchase. One of those songs is an unbelievable rendition of "Piece of My Heart". She throws everything she has into that song, much the way Janis Joplin did. Two new songs are about her experience with breast cancer. I think the lyrics of "This Is Not Goodbye" are amazing; they remind the listener of all the women who didn't survive. "I Run for Life" is about recovery, strength and activism and will undoubtedly become an anthem if it isn't already. This CD is a singer/songwriter essential.

Another awesome gift I received for Christmas was "Sisterhood of the Traveling Pants" on DVD. This one is worth the purchase, or renting at the very least. Repeat viewings haven't diminished my appreciation for it at all. Yes, it is about 16-year-old girls, and the trailers made it look like a very shallow teen chick flick, but it's actually well-written and acted and appropriate for probably anyone over the age of 13. The girls are convincing as friends and as individuals struggling with serious issues. And of course, everytime I see Greece, I wanna go there! This is based upon one of three books, so I wonder if there will be sequels??

Tomorrow I go to the rheumatologist. I had trouble summing up everything that happened since I last saw him and putting it all on one piece of paper. He's probably not gonna be happy about the OxyContin and the Methadone I tried, even though they didn't work out, and even less happy about me being all dopey on Lyrica and Klonopin. But these are things that must be discussed. I also need to find out if he got a report of my consultative exam for Social Security yet and whether he'll be getting a report on the functional capacity exam and whether I can get copies of these. Oh, and I'll need to give up more blood even though I still have four bruises from the CE blood draw and Wednesday's IV. And then after that, I have an appointment with the opthalmologist. That should be a breeze in comparison as my eyes aren't too bad; they only occasionally feel like they have sand in them.

Still lots of things I want to do, like stock up at the grocery store, get a hair cut (maybe even one I like for once), spend some gift cards, get some prints made of photos, and work on my much-neglected websites. But for now, I think I'll start on editing some pix, some of which have been on my computer since September. I have shots of my wheelchair trip to the zoo, my weekend with friends in October, and of course the Christmas Eve pix of my niece.

Not a great Monday, but not terrible.

"I must go away
Wait for me here
Silently stay
And don't ask me why
Only believe
This is not good bye"
--Melissa Etheridge

Rave of the Day for January 9, 2006: 

Dug into my archive of gems from Ducky to find this one. I find it inspires me....to giggle, I mean. Enjoy.....

Obtainable Affirmations

• As I let go of my feelings of guilt, I am in touch with my inner sociopath.

• I have the power to channel my imagination into ever-soaring levels of suspicion and paranoia.

• I assume full responsibility for my actions, except the ones that are someone else's fault.

• I no longer need to punish, deceive, or compromise myself, unless I want to stay employed.

• In some cultures what I do would be considered normal.

• Having control over myself is almost as good as having control over others.

• My intuition nearly makes up for my lack of self-judgment.

• I honour my personality flaws for without them I would have no personality at all.

• I am grateful that I am not as judgmental as all those censorious, self-righteous people around me.

• I am willing to make the mistakes if someone else is willing to learn from them.

Sunday, January 08, 2006

Meeeeee, Part 2...... 

Picking up where I left off yesterday, I was recounting all the wondrous adventures of my life this past month, and left off with New Year's Day. Ok, so the New Year's Day part was true. The wondrous adventures, not so much.

Ever since I first got sick, I've always crashed big time on January 1st. This time was no exception: I mean, why mess with tradition? So I crawled out of bed after twelve hours, looked at the mirror and marveled that not only had the dark circles under my eyes progressed all the way around to more resemble a raccoon's face, I was also sporting a prize-winning example of bed head. That, and the weak and wobblies, and a slight fever, and a rather magnificent headache. At least I could console myself that healthy people all over the world probably felt the same way, the only difference being that they have hangovers.

Luckily, I'm quite experienced with days like this, and I just gently ease into activities like meals, taking a shower, getting dressed, etc., even if it takes all day. My first "meal" was a High Protein Boost and some green tea with ginseng and ginger. If you ever wake up nauseous, dehydrated and/or hypoglycemic, that particular combo can work wonders.

Dan was my biggest saving grace, though. My tradition of taking down the Christmas tree on January 1st is a much older one than the one of having a flare, but I wouldn't be able to accomplish shit without his help. He had to: get the boxes for the tree, lights and ornaments out of the book room and garage, wait patiently while I try to remove every shred of tinsel, help remove tinsel when it hurt too much for me to hold my arms up anymore, take about half of the ornaments down and set them carefully on the ottoman because he had no idea what boxes they go in, take all the lights off by himself because I was gettting neck, shoulder and back spasms, disassemble the tree, put all the boxes away when I finally finish packing up the ornaments, and take the Gazelle out of the book room and put it back where the tree was.

I decided that since I had money coming very soon (my LTD insurance company had put my first check in the mail on Thursday), we should celebrate by going to dinner. We went to the Outback. I know a steakhouse would be the last place you'd think I could eat with my dietary restrictions, but I know how to make it work if I only do it occasionally. First, I make sure the meal is early enough in the day for me to have time to digest it. Second, I order the smallest, leanest cut of steak. Third, I have mashed potatoes because those are easy on the tummy. And fourth, I eat only a couple of bites of salad, mainly some tomato and cucumber and maybe a couple pieces of lettuce. And finally, I keep the overall meal small. Voila! A celebratory dinner.

Here's one problem with being mostly home-bound, or at least no longer in the workforce: I fail to recognize non-traditional, let's-give-them-some-more-time-off holidays. Apparently Monday, January 2nd was one of those. I had Dan take me to aquacise only to discover that the pool was closed for the bonus "holiday". Dan had already left, so I had an hour to kill. Fortunately, the lobby to the hospital where the pool is was open, so I could sit and read cover to cover "Spin" magazine's best picks for 2005 (they picked The White Stripes album as #16 where I would have put it in first place. At least they like The Killers as much as I do). I also checked the mail, forgetting there was no service that day. At least I didn't try to waste time making any business phone calls. Instead, I worked on some scrapbook pages. I'm all the way up to my 20 year high school reunion in summer 2002.

Tuesday was more productive. I went to massage therapy and the chiropractor. Then I went to Barnes and Noble and exchanged a duplicate Harry Potter book for a one volume "Chronicles of Narnia". After that, an allergy shot. I only have one more to go and then I'm DONE! Four years of shots. And on the way home, we went by the mailbox, and my check was there! Yayyyyyyyy! Unfortunately, I was too tired to go back out and cash it. I took a three hour nap instead.

Wednesday was my big injection day, which I have recounted in a prior post. Dan cashed my check while a semi-stranger injected lidocaine and cortisone into an area just above my right butt cheek. Everything went much quicker than expected, so I was home only three and a half hours after we had left. I pampered myself with some ice cream and then started feeling groggy, so I took a three and a half hour nap. After I got up, I watched "The Butterfly Effect" and worked on the scrapbook some more.

I did very little on Thursday. I didn't leave the house at all because I was feeling more dizzy and sedated than usual. I did manage to sort through my 2005 receipts and put the regular stuff in one box and the tax deductibles in another. I had enough medical receipts to fill two shoeboxes (but I just used a bigger box, heh heh). I don't remember what else I did.

Friday, I talked Dan into taking me to the health food store. I hadn't gone in months because of lack of funds, and had run out of most of my supplements. So this was a BIG bill. In addition to all the supplements, I stocked up on frozen rice mac and cheese, frozen rice lasagna and frozen palak paneer. I also did something I've never done before: I bought gluten free rice bread. Guess what? One bite, and I decided I would never buy it again. I can probably get through the loaf at least because peanut butter and fruit spread disguise the taste some. Also bought some gluten free crackers recommended to me by someone else with celiac disease. I didn't like them much either, so I'll just drown them in cheese or hummus or dip or something and go back to the rice cheddar crackers I already like. I was hoping to find some gluten free pitas and pizza crusts, but the gluten free bakery the store had been using is no longer in business. Bummer! I think there is another store where I can find these things, but I hate making a special trip just for that. Such is the life of a celiac.

I've been stranded at home all weekend. Friday night, Dan found the car leaking some sort of fluid (I forget what kind), and the earliest he could get an appointment at the mechanic's is tomorrow morning, so he didn't dare drive anyplace after he got home from work. So there went my plans on Saturday to use those Target gift cards burning a hole in my pocket, and I didn't get to go to church tonight either. And I'll have to skip aquacise tomorrow while the car's in the shop. But the bonus I suppose is that I got to get caught up on my blog, heh heh. Oh, and I watched "Under the Tuscan Sun" on DVD, which is a GREAT movie.

I'm not sure if the injections I got on Wednesday have worked or not. I was careful to wait a few days and keep my activity level low so the cortisone could take effect. But today, I decided it was time to try out some stretches. Nothing strenuous, just regular stretches for the hips, back and legs. I hurt like a sonofabitch afterward, and it hasn't gotten any better all day. So either those shots were all for naught, or the cortisone just hasn't kicked in yet.

Yesterday, with a tear in my eye, I cancelled my Netflix subscription. It was originally a free two-week trial, but I let an extra month elapse as a Christmas present to myself. I must say I thoroughly enjoyed the experience. The movies came right on time, most had cool bonus features, and I never had to travel beyond my mailbox. If my monetary circumstances change so that I can budget an extra $10 per month for entertainment, I will sign right back up in a heartbeat. Oh, and I enjoyed every single movie I selected. Let's see if I can remember all of them: "Finding Neverland", "Chocolat", "Tortilla Soup", "Soul Food", "How Stella Got Her Groove Back", "Love Actually", "My Best Friend's Wedding", "Lost in Translation", "The Butterfly Effect", and "Real Women Have Curves". I do at least have lots of DVDs at home to watch, so all is not lost.

Another pleasant surprise were the CDs my friends burned and sent to me as gifts. Ducky sent me a hip hop collection featuring several songs that I liked but didn't know the artist. I wonder how many 40 year old white women listen to hip hop? Besides Ducky and me, I mean. And Robert sent two discs. One is appropriately titled "Gotta Be Better Next Year Compilation" which begins with "Rotten World Blues" by the eels and ends with "When It All Goes Wrong Again" by Everclear and has various goodies in between. The other is "Charge!" by the Aquabats (which kicks ass, by the way) and some assorted faves. I like the Phranc songs particularly.

So, yes, in many ways, the past month has been quite shitty, but I got through it thanks to some enjoyable holidays, awesome friends, a fantastic husband, and the timely distractions of tunes and movies. Speaking of which, I still haven't spent all of my iTunes gift card, but I'm working on it. Right now, I'm listening to "Do You Want To" by Franz Ferdinand, which I downloaded in December and can't get out of my head. Lucky, lucky, you're so lucky......

Guess I'll end this one on that note. Lucky, lucky, I'm so lucky......

Me, me, me, meeeeeee...... 

FINALLY, I feel I can take the time to post all I've been up to for the past month or so. I've been giving bits and pieces here and in e-mails, so please forgive any repeat info because I don't know what I've said to whom. And I'll probably leave stuff out too, because I've been doing a lot of that lately too.

ANYHOO, I think where I left off was about December 8th or so when I found out that my beloved (ha!) long-term disability insurance company was going to blow me off for yet another month, leaving me with no funds for Christmas gifts. I racked my frazzled brain for something that could be done quickly, and came up with two things: homemade fudge, and recipe books. I'd seen on the "Oprah" show Rachael Ray's recipe for fudge made with chocolate chips made into a wreath shape and decorated with "holly" made from candied cherries. I tested it out and found it quite good, so I made two batches in round Christmas tins. For recipe books, I borrowed an idea from Ducky: I got 4x6 photo albums with clear sleeves where the photos go, and instead of photos, I put 4x6 pages containing recipes I'd used from various sources. I made four of these albums full of recipes. Basically, I created a template recipe page on the computer and duplicated it as many times as necessary, and whenever I found a recipe online, I only had to cut and paste it. Only problem with doing this stuff last minute was the pain and fatigue factor. I had problems with my hands cutting out so many recipe pages and stirring the fudge, so I had to drag the projects out so that I was only working on one gift per day. That cut it really close to Christmas, and then I still needed to wrap things. So Dan had to cut out one batch of recipe pages and help me wrap everything at the end. Oh, and then the Thursday before Christmas, my meds made me so fuzzy headed that I thought I might burn the house down if I cooked, so I had to call my friend and have her come over and help me with the fudge. So there's one of the reasons I didn't post much before the holidays.

While I was caught up in my projects and such, I was also trying out new meds. Woo hoo. Since it was determined once and for all that I could not tolerate narcotics because of my gastroparesis, my primary care doc had me try something new: Lyrica, which is for nerve pain. The good news is that yes, it did rid me of most of my nerve pain AND it didn't mess with my stomach. The downside, though, is that it made me dizzy, clumsy and even more fibro-fogged than usual. I was told these side effects would be temporary. WRONG! I've been on it for a month now, and it still does this to me. And if this wasn't tough enough to adjust to, I discovered that Lyrica doesn't interact well with Lunesta, the medication I was on to help me sleep. So I ended up starting Klonopin at bedtime, which was supposed to help my periodic limb movement disorder. Good news: no more twitching! First time ever with a med. Awful news: the sedating effects of this med do NOT wear off! I'm serious. If I take it at midnight, I'll still feel sedated and sound like I'm drunk until about 5pm! I tried a lower dose, and the twitching returned. So now I get to decide which is better: less pain and twitching but more vertigo and cognitive dysfunction OR being more in control of my cognition and balance but in unbearable pain. I hate not feeling in control of my brain! It affects my talking, my writing, my ability to follow a movie plot. And I certainly can't drive this way! And that would make me 100 percent dependent on Dan taking me places. As if he didn't have enough on his plate already.

On the 20th, I went to the pain management specialist about my lower back problems. After an exam, it was determined that the main problem area was the right SI joint, and we agreed to try injections to see if a reduction in inflammation would make the area stop spasming. This was to be done in an out-patient setting, so I set up an appointment with the surgery center for January 4th. I believe I did post the results of that.

I got a suprising piece of mail on December 21st: a letter from the Disability Determination Services office telling me they'd made an appointment to see one of their doctors on the 29th, while Dan would be visiting family in South Dakota. These are referred to as a CE, or consultative examination. These are usually the kiss of death for a Social Security claim. I called a friend in a panic to see if she could somehow take me to this exam since Dan wouldn't be around. Bless her heart, she had to re-arrange her whole work schedule to manage this. I did post the details of the exam a few days back, so I won't repeat it here, but I will say that I think it was a complete waste of time and probably did nothing to help my Social Security claim.

Also on the 21st, I got a call from my aunt asking me to come to her house on Christmas day to meet with the extended family. But I declined because I didn't think I'd be able to drive myself across town and back. Turns out everyone went this time, so I really missed out. It's probably for the best that I didn't go and wear myself even more, though.

Since Dan was flying to South Dakota on Christmas Eve, we went to my dad's late that morning to exchange gifts and have an early dinner. My stepbrother, his wife and their baby were there, as were my sister and my brother-in-law. I took lots of pix of my niece opening and examining her gifts. I did indulge in a store-bought gift for her: I saw this absolutely huge, ultra soft black and white stuffed puppy at the store and couldn't leave without it! It was large enough for my niece to take a nap on. I received some DVDs, some Harry Potter books and some gift cards, all of which were greatly appreciated. We had a nice meal of both turkey and ham. I brought the crustless pumpkin pie, but we had to leave before anyone had room to eat any. We did manage to squeeze in one quick board game before I drove Dan to the airport (I'd skipped the Klonopin the night before so I'd be safe at the wheel). I'd been asked if I wanted to go back to Dad's house after, but I was already fading, so I just went home and took a nap. After three hours of sleep, I then went to my church, which is just a short drive from the house. It was packed, but I enjoyed all the festivities. Made the whole holiday much more meaningful.

On Christmas Day, I went back to my church, this time with my friend, for some informal singing of Christmas carols and drinking of hot chocolate/coffee. Then we went back to my house, where I had a quarter bone-in spiral honey ham waiting to be heated. It was only five pounds, so it took less than an hour to prepare. In keeping with my dietary limits, the only other things we had to eat were mashed potatoes and cranberry sauce. I thought it was nice, though: no worries about overeating when there are fewer foods on the table. And then while my friend went home for a bit to check up on her critters, I fell asleep on the couch for my usual two hours. No way I could have done that at my aunt's house with some 20 people running around. After my friend returned, I felt perky enough to play 1980's Trivial Pursuit, and to my complete surprise, I won.

Now, I had planned that the last week of the year was going to be one of rest for me since Dan was gone. I'd purposely scheduled no appointments, and didn't have have aquacise classes (they always do maintenance on the pool that week). But the CE put a monkey wrench in things, and then it got even more complicated. On the 27th, I checked the status of my claim with the long-term disability insurance company. I still wasn't even listed on the website as having an account, and the automated system on the phone only said there was no information available on my claim. So I got a hold of an operator, who told me that since they got new medical records on the 19th, they wanted to extend their analysis of my claim for ANOTHER month. I told them in no uncertain terms that taking five months to analyze a claim was ridiculous. The reply was that my claim was complicated. I was fed up, so I called a lawyer recommended to me by the Social Security attorney I had talked to awhile back. I found out that my particular LTD insurance company had lost a lawsuit and had to re-open some 200,000 claims! So some people with new claims were getting letters stating they might not get processed for up to two YEARS! So really, all I could do was wait for the company to make the next move and hope I wouldn't run out of savings before then.

So I was quite surprised when, the very next day, my benefits co-ordinator called and announced that they wanted me to undergo a functional capacity exam! Their doctor had also analyzed my neuropsyche exam from October 2004 and said the findings were insignificant, but because my rheumatologist stated that I had declined since that exam, they wanted me to do a new one! The only good news in all this was that while I was being tested, they had to begin paying me benefits under "Reservation of Rights". That means a temporary award which they can demand back if they decide you've been malingering. I asked who would be conducting the functional capacity test and was told it would be supervised by a physical therapist. Now, I've had some awful experiences with PTs, so I was less than thrilled with that news. I was also informed that since the insurance company was paying for the exams, they would decide who performed them. Well, that just smacks of impartiality, doesn't it?? (this is me being facetious) So, as soon as I was off the phone with the benefits lady, I called the lawyer again and asked if I had any recourse in this situation. I was informed that while I do have to take the tests, I can attempt to get the company to agree to an impartial person to administer the exams. He gave me the names of both a physical therapist for the functional capacity test and a psychologist for the neuropsyche exam. I called both parties and found them to be quite friendly and understanding of my situation. The psychologist had extensive experience in testing fibromyalgia patients. I then called my rheumatologist's office and asked if he would send a script to the insurance company for the functional capacity exam with the name of the physical therapist I had selected on it.

The next day was the CE for Social Security, and of course the benefits coordinator called while I was out. So did the surgery center needing to go over my meds and other pre-procedure stuff. I ended up spending most of Friday afternoon on the phone. One place I had to call was my new medical insurance company because a few weeks back, we received Dan's new card in the mail but not mine. When I inquired about it, I found out I wasn't even listed as being eligible! Turns out his employer "forgot" to send the information to them. So I was told to call HR for Dan's employer. Naturally, as it was the last business day of the year, HR had taken the day off. That finally got resolved the morning before I had the injections done. Nothing like a little extra drama to start out the new year. When I got a hold of the benefits coordinator on the 30th, she said she'd gotten the script from the rheumatologist and would send the physical therapist "suggestion" along to the proper department. I asked if I could also suggest a practitioner for the neuropsyche exam, but she said that absolutely was not allowed. She added that I would be notified of my appointments by Federal Express (I guess so I'll have to sign for it).

The next day was of course New Year's Eve, and I was more than ready to party, or at least get distracted from the week from hell. I picked Dan up at the airport about 4:30, and our friend came by about 6pm. We had tuna casserole (weird, I know, but there was very little left in the pantry to choose from) and then played Rumikub to the accompaniament of '80's and '90's music. Later, we snacked on fancy lowfat cheeses and crackers (mine were gluten free of course), and Dan had beer and I had wine. Yes, wine. Red wine that made me feel totally silly after one glass, but I hadn't had any in probably five years, so why not? We toasted the new year and played the TV edition of Trivial Pursuit. I think Dan won.

I gots lots more to say, but my hands simply won't allow me to type anymore tonight, even though I've taken lots of breaks and stuff. So I'll chatter more later......

Saturday, January 07, 2006

Rave of the Day for January 6, 2005: 

I don't normally engage in political humor, but I just could NOT quit laughing at this one! Thanks to Dr. Karen for sending me this gem.....

The Robot

A man enters a bar and orders a drink. The bar has a robot bartender that serves him a perfectly prepared cocktail, and then asks him, "What's your IQ?"
The man replies, "150."
The robot proceeds to make conversation about global warming factors, quantum physics and spirituality, biomimicry, environmental interconnectedness, string theory, and nano-technology. The customer is very impressed and
thinks, "This is really cool." He decides to test the robot.

He walks out of the bar, turns around, and comes back in for another drink. Again, the robot serves him the perfectly prepared drink and asks him, "What's your IQ?"
The man responds, "about 100."
Immediately the robot starts talking, but this time, about football, NASCAR, baseball, favorite fast foods, and guns.

Really impressed, the man leaves the bar and decides to give the robot one more test. He heads out and returns, the robot serves him and asks, "What's your IQ?"
The man replies, "Er, 50, I think."
And the robot says... real slowly..."So.......... you gonna vote for Bush again?"

Thursday, January 05, 2006

Ah, shoot! 

Got confirmation of the insurance yesterday morning. Still, I will rest easier when I get an actual insurance card with my name on it. I have three appointments next week, so I'm hoping I'll get the card before then.

The injections weren't too bad. It was the IV that was the biggest pain. They had to do it twice, and I have HUGE bruises on my left arm and hand from then.

They used guided x-rays to help them inject lidocaine and cortisone in my right SI joint. The lidocaine has since worn off, and the cortisone won't kick in for a few more days, so I'm kinda sore right now. But I should feel much better by the weekend.

My hope is that if I can decrease the inflammation in the SI joint for a few weeks, it will be easier to do my aquacise and stretches for the hips, hamstrings and low back. If I can strengthen those areas, maybe the SI joint area will quit going into constant spasm. I figure it's worth a shot, so to speak.

One thing that was kind of a bummer is that they had me remove my Medic Alert bracelet prior to the procedure and put it in a bag with my clothes. I never remove the bracelet for fear of losing it. Well, naturally, when I got dressed, I was somewhat sedated and forgot the bracelet entirely; I called the facility later to see if they still had it, but it's gone.

There's a lot of other stuff going on with me, but I'm too tired to go into it right now.

I will check back in when I can.

Wednesday, January 04, 2006

To inject or not to inject? 

I was originally scheduled to have injections in my right SI joint on Wednesday afternoon. I've never done this before, but a pain management specialist thought I'd probably benefit from it. I injured this area when I was a teenager and now have constant lower back and hip pain because of it.

Only one thing might cause me to have to re-schedule: my insurance, or rather lack of proof of it. My hubby's employer switched us to a new policy, but they only switched his info and completely forgot about mine. I called the insurance company two weeks ago when only my hubby's card arrived in the mail, and it got switched from department to department and delayed over the holidays.

Turns out it's completely up to my hubby's employer to fix the problem. They called me this morning and said they'd send the info and that I'd be good to go for the surgery. Well, at the close of business Tuesday, the insurance company still had me listed as "terminated".

Yeah, I'd say my New Year is off to a dandy start.

Will post more if/when my life calms down.

Tuesday, January 03, 2006

Details, details of my CE..... 

I just finished typing up a play by play of the consultative exam (CE) I had to do last week for Social Security. I tried to remember absolutely as much as I could in case the details of the exam are called into question. It's very common to be told one thing in the exam and then the doctor tells Social Security something different. So this is bascially a CYA move on my part. I'm re-printing it here in its entirety (except for the doctor's name) for those of you who might be interested......

Notes on Consultative Exam for Social Security
December 29, 2005

I was driven to the exam by a friend so that I wouldn’t get lost or be too fatigued afterward to drive myself home. We arrived 15 minutes early as requested in the paperwork I had gotten.

The first thing that happened was the assistant got my height, weight, blood pressure and tested my vision. Then she did a blood draw. She had to do it twice because one of my veins shut down before she was able to collect enough blood. After the second attempt, which was quite painful at the end, I became dizzy and nearly fainted. I had to sit quietly for awhile before getting up, and I had trouble thinking clearly for quite some time after.

Following the blood work, I was returned to the front office where I waited an hour. While waiting, I ate a rice bar to see if I would feel less fuzzy-headed. It didn’t help. I also had to make a trip to the rest room as sitting in the chair was becoming painful. Later, I did some stretching in the chair because I was stiffening up. I was told the doctor was reviewing my records this entire time.

The doctor directed me into her office herself. I asked if my friend could come with me as I had memory trouble and might forget to tell her things she needed to know. She said there was no need, that this would be a quick exam.

She mainly wanted to talk about my Sjogren's syndrome since her husband has it too. I explained how the illness was causing neurological, cognitive, joint, and digestive problems in addition to the usual dry eyes and dry mouth. I did sum up the course of my illness because over the past eight years I'd had many mis-diagnoses. I told her how I have episodes that appear like MS exacerbations with neuropathy, speech problems and motor skill problems and that the only thing that has helped them has been prednisone. She wanted to know how I was diagnosed with Sjogren’s when I was sero-negative. I said my ENT could see the extreme dryness in my mouth and nose and the damage typical of the disease, so he did the conclusive lip biopsy.

The "routine physical exam" mentioned in the letter was brief. The doctor noted the extensive medical records given to her by Social Security and said she really didn't need much more from me. She looked at my hands, feet and knees where I have arthritis. I had compression hose on my lower legs, but she didn’t have me remove them; she just checked my toes and rolled one of the hose down on my calf briefly. I told her about my lymphedema and how I may have the beginnings of vasculitis with the petechia and the redness in my legs and face upon exertion or a warm shower. She also had me lie on the table so she could examine my stomach. I had trouble climbing up there even with the step and even more trouble lying back due to pain and stiffness. The exam of the knees was also painful. She checked my hearing, eyes and balance. I told her how I was deaf in the right ear and was suffering hearing loss in the left ear due to tinnitus. I told her that the tinnitus was so loud that I could hear it over my own voice and that nothing completely drowned it out. I also talked about my vertigo.

I had brought with me all my medications as instructed in the letter. The doctor didn't even look through them and was actually more interested in my typewritten list of medications and supplements. She was particularly interested in the Evoxac as it is prescribed for Sjogren’s syndrome.

When I spoke of my cognitive dysfunction, she dismissed it as just stress, even when I gave clear examples of how my abilities had permanently declined. I told her how I would be doing the same repetitive task for an entire shift, and suddenly I would forget the proper keystrokes, even though I’d been doing them every 15 minutes or so throughout the night. I also mentioned that I was transposing numbers, causing me to accidentally delete advertisements from the newspaper page right before it was due to print. I said how my proofreading was affected because I could not remember how to spell words and didn’t recognize misspelled ones on the page. And I told her that I could not remember my software training for more than a day or so. For comparison’s sake, I told her that when I’d been healthy and was working for a radio station, I was able to screen calls, cue a talk show host, cue a remote site, play commercials, back time closing music, switch to a network newscast and operate a tape player all at the same time. Now I can’t do a simple repetitive set of keystrokes and not mess up.

I had intended to mention how my fatigue, pain, hearing loss, neuropathy and digestive problems also made me unable to work, but they sort of got glossed over. She indicated she knew about them from my records. I did mention that I had been falling asleep at my desk at work pretty much every night, but she was not interested in more details about that.

I was in the doctor's office for approximately one hour. Most of this time was spent in conversation. By the time it was finished, I was in pain from sitting in the chair, my stiffness was worse, and I was quite exhausted.

This page is powered by Blogger. Isn't yours?