Tuesday, August 24, 2004

Rave of the Day for August 24: 

I'm in desperate need of a laugh. This should do the trick. Courtesy of Ducky....

An Amish boy and his father were visiting a mall. They were amazed by almost everything they saw, but especially by two shiny, silver walls that could move apart and back together again. The boy asked his father, 'What is this, Father?'
The father (never having seen an elevator) responded 'Son, I have never seen anything like this in my life. I don't know what it is.'
While the boy and his father were watching wide-eyed, an old lady in a wheelchair rolled up to the moving walls and pressed a button. The walls opened and the lady rolled between them into a small room. The walls closed and the boy and his father watched small circles of lights with numbers above the walls light up. They continued to watch the circles light up in the reverse direction. The walls opened up again and a beautiful 24 year old woman stepped out.
The father said to his son, 'Go get your Mother.'

Humiliating dentist visit.... 

I didn't even realize I had an elevated pain level today....I was too distracted with the heaviness, slowness and exhaustion.

I had trouble finding a parking space at the rehab hospital today. I finally got one at the opposite end of the building from the pool. By the time I hobbled in to the aquacise class late, I was out of breath, my legs were shaking, and I was so wiped out that I actually considered skipping the workout.

I decided to go ahead with the class since I was already there, and it made me even more tired. All I could think about driving home was going back to bed, but I had a dentist appointment this afternoon, so I got ready for that instead. While I was doing that, my legs got weak again, like they were before my recent course of steroids.

Got to the dentist office a bit late because it was difficult to walk. Wasn't really nervous or anything, just tired and ready to get the filling over with. Made sort of a snide comment to the dentist (who is new) that I'm a wimp about this stuff.

Then he went to give me the novacaine shot. It hurt so horribly that I was very nearly screaming. I wasn't expecting that level of pain, and I started to cry.

Then the dentist said, "Look, if I can't even give you a shot to numb you, I can't work on you." I started to tell him to just go ahead since I was already there, but it just came out as sobbing. They said I was anxious and hyperventilating, but that wasn't true....I was just exhausted by my own crying.

So I cancelled today's appointment and the one on Wednesday too. I am SO embarrassed....I am not prone to anxiety and never make scenes like that. I am not myself at all and don't understand why.

Dan had to drive me the 15 miles back home, and I sobbed all the way. I tried to eat some lunch with a half-numb mouth and got ready for work. Don't ask me how I got through the shift...I have no idea.

I think I've made a mistake planning this vacation. If it was just a mobility problem, I'd just rent a wheelchair. But when I'm this exhausted, there is no way I can enjoy myself....in fact, I wouldn't even make it through my hometown airport.

I am soooo discouraged. I feel like this illness is robbing me of all normal activity. If only I could have a vacation from being sick.

I haven't even got the energy to be bitter....just sad. And embarrassed that I can't even handle a simple novacaine shot. What a life.

I don't know what else to say.

Pain level: 8
Fatigue level: 9

Sunday, August 22, 2004

Rave of the Day for August 22: 

Ready for some major giggles? I got this in an e-mail from Joan today. Tee hee......

The Washington Post published its yearly contest in which readers are asked to supply alternate meanings for various words. And the winners are...

1.   Coffee (n.), a person who is coughed upon.

2.   Flabbergasted (adj.), appalled over how much weight you have gained.

3.   Abdicate (v.), to give up all hope of ever having a flat stomach.

4.   Esplanade (v.), to attempt an explanation while drunk.

5.   Willy-nilly (adj.), impotent.

6.   Negligent (adj.), describes a condition in which you absent-mindedly answer the door in your nightgown.

7.   Lymph (v.), to walk with a lisp.

8.   Gargoyle (n.), an olive-flavored mouthwash.

9.   Flatulence (n.), the emergency vehicle that picks you up after you are run over by a steamroller.

10.  Balderdash (n.), a rapidly receding hairline.

11.  Testicle (n), a humorous question on an exam.

12.  Rectitude (n), the formal, dignified demeanor assumed by a proctologist immediately before he examines you.

13.  Oyster (n.), a person who sprinkles his conversation with Yiddish expressions.

14.  Pokemon (n.), a Jamaican proctologist.

15.  Frisbeetarianism (n.), the belief that, when you die your soul goes up on the roof and gets stuck there.

16.  Circumvent (n.), the opening in the front of boxer shorts.

Mildly vigorous day... 

Did 20 minutes on the Gazelle and put the finishing touches on making reservations for some activities on my upcoming vacation. One online company I used to book a boat tour was kind enough to call me this afternoon to tell me the tour was unavailable and suggested an alternative. Got to listen to Hawaiian music when I was on hold. Also downloaded driving directions.

Did go out briefly today. Found a cheap underwater point and shoot camera that takes standared 35mm film so I can take lots of pix when I go snorkeling. Also picked up a few things at the grocery store. When we got done, it was hailing outside! Dan knows I can't run, so he bravely put the groceries in the car and picked me up at the front door. He's my hero.

My department will be having a barbecue contest in September. I'm tired of having to watch everyone else eat the stuff (many sauces contain gluten), so I went hunting for recipes tonight. Found a gluten-free recipe made with apples and cinnamon and will combine it with a recipe I found for barbecue turkey in a crockpot. I'll try it at home before unleashing it at the contest.

Tried a recipe I found (on a pharmacy handout, of all places) for asparagus stir-fry. I used gluten-free soy sauce, which is pretty good....you can't tell it from the stuff containing wheat. The stir-fry came out so well that Dan had half of it. When I ate it, I realized how much I miss Asian food....I haven't had anything from a restaurant since last November because most of it contains wheat-based soy sauce and/or MSG. I found a recipe tonight for gluten-free Asian lettuce wraps. I'll give it a try sometime.

Getting one of my teeth filled tomorrow....I am NOT looking forward to this. I have a sore in my mouth that I've been trying to get rid of for five days, which doesn't help. Last week I had a headache for three days just because of a simple cleaning.

Only 41 days until Hawaii....

Pain level: 5
Fatigue level: 7

Saturday, August 21, 2004

Lots o' news.... 

Thursday we finally booked our trip. We'll be leaving on October 2nd and returning on the 14th. We got a pretty good deal: two free nights in the condos, a free rental vehicle upgrade (to a Jeep on the big island), discounted airfare for travel between Kona and Waikiki, and a free luau. We'll be going to Kona first and staying five nights in a Spanish-style villa that looks VERY nice. Then we're going to Waikiki and staying six nights in a high-rise condo that will have a view of downtown Honolulu. And we got travel insurance that includes having to cancel due to health problems. I'll start this weekend booking some activities for the trip.

The only little hitch is that the airline I'll be going to Hawaii on doesn't provide gluten-free meals. I went to their website and saw that they had meals for diabetics, so I'm going to e-mail them and explain the need for accommodating celiacs. I'll use their current policy as a guide for suggesting gluten-free meal options. If worst comes to worst, I'll be brown-bagging it.

Got to do some software training at work on Thursday night and once again dozed off during the tutorials. I'm getting so desperate that I bought a case of "energy" drinks (caffeine, B vitamins and amino acids) and will resort to them when I get the sleepies. It's probably not the best thing for me, but then, after the incident I had Friday night, I'm willing to do just about anything to stay awake. Friday night, I nodded off in the middle of copying a piece of art from one ad to the other, inadvertently hit the "Return" key and erased the ad I was working on!! I had to quickly re-build the ad, which took probably half an hour. If a supervisor had witnessed me doing this, I probably would have been suspended for a day.

My return to work has been good for one thing at least...I'm eligible for the raise our department is getting. We're getting less than half the amount the union was negotiating for, but it's better than not getting anything at all, which was the agency's initial offer. The raise is retroactive to January of this year because that's when we were supposed to get it. I'm going to use some of it to update my operating system and financial software on the home computer this weekend. If I can keep working past January of next year, there will be another modest raise. And the union president is still looking into whether I will be eligible for a disability pension after June 2005. If so, I'll try my best to hang in there for 10 more months.

Went to a picnic today with my local fibromyalgia support group. We held it on the grounds of the hospital where we meet. There were probably about 20 of us there. I brought my famous rice pasta salad. One of the ladies there just got approved for her SSDI from a judge and brought her ruling with her. I was curious to see what one looked like and upon what the judge based his approval. Turns out she had lots of documentation from several docs, including a colleague of my rheumatologist and a doc locally famous for his fibromyalgia research. Most of the people in the group who have been approved for disability have had two or more judge hearings with an average of two years between application and approval.

Well, rats, here I am dozing off during this entry, and it's only 6pm. Sad.

Pain level: 7
Fatigue level: 9

Wednesday, August 18, 2004

Rave of the Day for August 18: 

In the spirit of the Olympic games, a timely joke courtesy of Ducky's Daily Grin......

A German, an Italian, and a goofy American were trying to get into the stadium at the Athens  Olympics, but the seats were all sold out. The enterprising German stripped down to his shorts and undershirt, picked up a cane fishing pole in a nearby alley, and marched right in stating boldly, "Heinrich Schneider, Germany, Pole Vault."
Noting the ease of entry, the Italian took off his outer garments, grabbed a large round stone, then just as boldly strode in the gate, announcing, "Pasquale Galento, Italy, Shot Put."
Not to be outdone, the American guy took off all but his BVD'S, went into a nearby hardware store were he purchased some barb-wire. As he approached the gate the American spoke out confidently, "Hank Jamison, USA, Fencing."

Facing photsensitivity..... 

Went to the dermatologist today. He took one look at the brown blotches on my face and asked if I was on any hormones. I said, well, yes, the birth control pills to ward off my adenomyosis woes. He said that the brown blothes were melasma caused by the combo of hormones and excessive sun exposure. He prescribed a cream that should cause the discoloration to fade.

I also told him about the raised red rash I got on the back of my hand that accompanied a recent sunburn. He noted that it could have been one of any number of rashes since I have a connective tissue disorder. He said most people with Sjogren's, lupus or related diseases are photosensitive. The Plaquenil I'm taking reduces the problem but does not completely eliminate it. I asked him what I should do on my upcoming trip to Hawaii. He said to bump up the SPF 30 to SPF 45 and make sure I re-apply it every two hours (I got burned when my SPF 30 wore off at the game because I was in the sun a total of three hours and didn't re-apply). He gave me a sample of a waterproof SPF 50 to use when I go snorkeling.

Oh, and he took a look at my legs (I'd been to him before about the petechia) and noted they looked better. I told him the recent round of prednisone seemed helpful. He asked whether I was wearing the granny hose (ok, he said support hose) regularly, and I said I mostly wore them at work. He said regular use of the hose would help keep the swelling from returning.

Well, I'll be the palest person in all of Hawaii, but I do not want to be running around with rashes or melasma, so I will be more liberal with the sunblock. Weird, coming from a former sun goddess....I used to slather myself with baby oil and fry on purpose! But wearing sunblock is better than having to stay indoors. Oh, and I've got to remember to bring a hat too.

My, how my life has changed.

Pain level: 7
Fatigue level: 9

Tuesday, August 17, 2004

Rave of the Day for August 17: 

One of the bunny movie re-enactments that I had overlooked. Enjoy....

Titanic in 30 Seconds

Ack! Cavities! 

Went to the dentist for my usual six-month checkup. Had been really proud of myself for managing to avoid the tooth decay that some say is inevitable with Sjogren's patients. But I've recently had horrible mouth sores, sensitive gums and occasional tooth pain, so I should have known my lucky streak was over.

The dentist remarked that while I'm doing an excellent job of keeping my teeth clean, they are beginning to decay around my old fillings. I need to have two teeth filled right away (next week). I was told that eventually, I will need to put crowns on these teeth as well as the others that were filled when I was a teenager, plus one tooth that is cracked....a total of eight teeth.

I'm frustrated....I've been trying everything I know to preserve my teeth: special toothpaste, special mouthwash, anti-cavity gum when I can't brush, dental floss and a water pik. I still can't stave off damage from the Sjogren's and lousy genetics. I'm the only one in my family who has passed the age of 30 without a root canal.

I'm going to try home fluoride treatments in the hope that I won't develop further damage, but I'm not feeling terribly confident right now. My neck aches terribly just from today's cleaning....the fibromyalgia just won't tolerate being tilted back in that awful chair for very long. I'll be back for the fillings next week on Monday and Wednesday....only the second time I've had to have a tooth filled since I was 16 years old.

It would be really cool if I could just have a nice boring week with no new health problems. Sigh.

Pain level: 7
Fatigue level: 7

Sunday, August 15, 2004

Rave of the Day for August 15: 

I live in a city where the following is taken to heart, heh heh. I compiled several of Ducky's Daily Grins about idiot driving. This is long, but fun....

Signal only when you feel like it. 

If you feel you must use your directionals, make sure they blink only once, then turn them off.
Signal only after you change lanes.
When driving straight, make sure that at least one directional is blinking at all times.
Signal as you approach a curve in the road.
If you intend to make a right turn, use the left signal.
If you intend to make a left turn, use the right signal.
When approaching an intersection, signal to turn and slow down. When other drivers or pedestrians cross in front of you, turn off the signal and go straight.
When you intend to make a turn, start signaling approximately 6-8 blocks before your turn. Slow down for each block as you approach them.
Always apply your brakes way before you signal.
When making a left turn at a busy red light, wait for the light to turn green before you turn on your signal.
Wait until after you have started to turn or change lanes to use your signals.
If you must use hand signals instead of your directionals, use your right hand or have your passenger do it out the right side window.

When entering a highway with an acceleration lane, do one of the following:
    1 - Drive slowly to the end of the acceleration lane, come to a complete stop, and wait.
    2 - Don't use the acceleration lane. As soon as the entrance ramp meets the highway, drive 15 MPH and turn directly into fast moving traffic.
If you are approaching your highway exit and there is a car in front of you, get into the adjacent left lane, accelerate to pass him, then quickly make a sharp right turn in front of the other car, and directly into the exit. 
When driving in the left lane and approaching a merging vehicle entering from an acceleration lane, switch to the right-most lane, squeezing him onto the shoulder. 
When exiting a highway with a deceleration lane, don't use it. Stay in the right-most lane of the highway (parallel to the deceleration lane) and slow down. Then just as the exit lane splits away from the highway, cut across the painted lines. 
If you pass your exit on the highway, stop and backup. 
When approaching a toll plaza, cut off as many drivers as possible to get into the shortest line. Then wait until it's your turn to pay before you start to look for your change and toll ticket. 
Never go fast enough to pass a police car; no matter how slow it is going. 
If you notice a car in the next lane, signaling to switch into your lane, ahead of you, speed up so that the two of you are driving parallel. The other driver will then wave his arms and start yelling. When he finally decides to slow down and switch lanes behind you, turn into the lane where the other driver started. 
Always use large bills at toll booths. 
When at a toll booth, always ask for directions, even if you know where you are going. 
When approaching a toll plaza, cut across as many lanes as possible to be in an exact change lane. Then check to see if you even have exact change. If not, backup. 
If switching lanes at a toll plaza can bring you 1 car closer, quickly and abruptly yank the wheel and punch the accelerator to change lanes. Do not look before doing this. 
When approaching a toll plaza from the left lane, cut across all lanes of traffic to pay at the right-most toll lane. After paying, cut across all lanes of traffic to get back into the left lane. 
Stay in the left lane with your cruise control set at 50 mph. Avoid touching the accelerator pedal to force faster moving traffic to have no choice but to pass on the right. 
If you drive a motorcycle, the lines on the road are meant to be driven on. Feel free to whip between lanes of traffic very very fast. 
When driving a motorcycle on the highway, tuck your head down below your shoulders so that you can't see and propel yourself at 600 mph. 
If you are driving a truck on the highway and you stop at a rest area, park horizontally across 5 spots that are labeled "CARS ONLY". 
After paying a highway toll, leave the toll booth very very slowly. 
On a 4-lane highway, always select the lane directly adjacent to a tractor trailer. Then drive right beneath the trucks door so that the truck driver can not see you. 
When a tractor trailer ahead of you in the adjacent lane signals to get into your lane, accelerate so that you are directly next to the truck's payload. Then drive at the same speed so that the truck can not change lanes. Do this even if the truck was going faster than you.
When switching lanes in front of a tractor trailer, always drive close enough to the front of the truck that the driver can not see you over the truck's hood. 
If you are driving an 18-wheeler or a bus and you pass a car where the female passenger is breast feeding her baby, stare intensely at her and lick your lips. 
When approaching an exit or entrance, always get into the right lane, even if you are not getting off. 
When driving by yourself or with one other person, get into the 3-person HOV (carpool) lane and drive 50 mph. 
Make sure you hold traffic up at the toll booth by not having any money to pay. If this causes you to have to fill out forms, fill them out slowly.

Jack up your car by installing tires that are big enough to drive over a three story building. 
When you are well aware that your car might break down, drive on bridges and narrow highways during peak rush hour traffic. 
If your car breaks down while driving, stay in the middle of the road. Do not attempt to move to the shoulder. 
When disabled in the road, leave your car door wide open. 
If it is necessary to change your tire on a road shoulder, lie the flat tire in the middle of the road and make traffic drive around it. 
If your muffler system breaks, keep it broken as long as possible. Drive through residential neighborhoods at night as much as you can and rev the engine. 
Drag your exhaust system on the ground when possible. 
If your car leaks oil, and you visit friends or relatives, park in their driveway. 
Never replace worn tires and drive fast on wet roads and slippery roads.
If you notice smoke coming from your exhaust pipes, allow your car to roll back at the next red light to make sure that you get some of it into the car behind you. 
Tint your windows pitch black so that nobody can see you, where your looking, or what's happening in front of you.
Only have your oil checked and windows washed when you pull into a busy and under-staffed gas station. 
Never replace burned out brake, signal, and head lights. 
When replacing a burned out low-beam headlamp, use a high-beam bulb. Try to aim the lights higher than legal limit. 
Windows which no longer roll down are not to be fixed. This way you can delay other drivers by having to unfasten your seat belt and open the entire car door to pay a highway toll. 
If your car's safety fails the annual state inspection, bring it to a private inspection station and pay the mechanic $20 to pass you. 
If any safety parts on your car need replacing (such as burned out headlights or worn tires) wait months until its inspection time to get them repaired. 
If the plastic tail light cover breaks, fix it with red tape.  If the plastic turn signal cover breaks, fix it with yellow tape. 
If the bumper or exhaust system starts to fall off, use twine to loosely tie it back up. 
If the radio antenna breaks, unbend a wire hanger and shove it into the antenna opening.
Adjust your window washers so that they squirt over the windshield, above the car, and onto the vehicle behind you. 
An old rag is the perfect substitute for a missing gas cap. 
When disabled in the road, leave your car door wide open, then step into oncoming traffic as you walk around the door to re-enter your car. 
Install bright neon lights around your license plates so that no one can read them. 
When you bring your car in for servicing and the mechanic asks what kind of car you have, tell him you have a blue one.

When looking in the rear-view mirror and observing the car behind you changing lanes, quickly jump into the same lane, staying in front of him. 
If the vehicle in front of you signals to change lanes, quickly jump into the lane he wants to be in and punch the accelerator. The object of this is to keep the other driver from being able to change lanes. 

When your traffic lane has a dashed line (permission to pass), drive as fast as possible and just a little over the line. This will prevent anybody from passing you. Then when the line becomes solid, slow down to a speed significantly less then the posted limit. 

If another driver succeeds in passing you, tailgate and flash your high beams the entire time you are behind him/her. 

If you can't find an opportunity to switch lanes, stop in your lane and wait for one. 

On one lane roads, pass other vehicles using the shoulder. 

If you catch another driver in the middle of attempting to pass you, accelerate so that you keep him/her in the oncoming traffic lane as long as possible. When he gives up and gets back behind you, slow down. 

When changing lanes, take approximately 2 miles to completely move your car from one lane to the next. 
If an oncoming vehicle drives briefly in your lane to pass a bicyclist, speed up and drive in the center of the road to scare the heck out of both of them. 

When changing lanes, make sure that you only leave 1-2 inches between you and the car behind you. 
When changing lanes in traffic, drive into the car next to you. 

If there is a slow moving car 2 vehicles ahead of you, make every effort to pass and cut off the vehicle directly in front of you. 

When driving a large vehicle or truck and switching lanes, don't bother to look before you do it. If anyone is in the way, they'll move. 

When passing a bicyclist, make sure that you get all the way to the left side of the road directly into oncoming traffic. 

After slowing down to half the speed limit waiting to change lanes and annoying the driver behind you, drive about 1/4 mile and switch back to your original lane, cutting him off. 

If the ground is slightly damp from a little rain, and traffic is generally moving at 65 MPH, drive at 15 MPH. 

When a major road is covered with a dangerous amount of snow, and traffic is generally moving at 15 MPH, drive at 65 MPH.
The more slippery the road surface is, the more you should change lanes. 

Only use parking lights when driving in rain, sleet, snow, or fog. 

If all snow has been plowed, and plenty of salt and sand has been spread on the road, drive at 10 MPH. Even if traffic is generally moving at 55 MPH. 

If the road is slippery due to ice, rain, or snow, intentionally cause your vehicle to swerve and make "S" type maneuvers. 
When stopped at a red signal in the rain or snow, always spin your tires to make as much of a distraction as possible. 

When approaching a large water puddle in the road, drive through it to cause a tidal wave to hit other cars and pedestrians. 

When driving in any type of nasty weather, disregard all traffic lines painted on the road. 

If the road conditions are anything but dry, always tailgate. 

When driving during a winter snow, don't clean the ice off the top of your car. Then, drive as fast as possible so that everything flies off your roof and hits other cars. 

When your car is covered with snow or ice, only clean off a little tiny section in front of the driver's seat so that you won't have any idea of what's going on around you. 

If your windshield becomes fogged while driving, DO NOT wipe it off. Just turn on the defroster and lean your body between the driver's and passenger seat and duck your head to the dashboard.
Then continue driving by peeking out the windshield where the defroster has just started to clear. 

Slam on your brakes to see how slippery the snow, rain, or ice is. 

Do not use your windshield wipers in the pouring rain, if you don't like the squeaking noise they make. 
Keep your windshield wipers going long after the rain has stopped. 

When brushing the snow off your car, brush it onto the bumper so that it blocks your headlights, turn lights, and brake lights. 

When driving on a sheet of ice, go as fast as possible because you have a 4x4 vehicle and it is equipped with anti-lock brakes. 

If the heat in your car is broken, wear a winter coat that is too large for you and zip it all the way up so that the only part of your head that is uncovered is your eye brows and forehead.

Use high-beams when the car in front of you is lower to the ground then yours. 
Always use high-beams when there is heavy oncoming traffic. 
When approaching a sharp curve at night, accelerate, drive on the line in the center of the road, and keep your high-beams on. 
Never use headlights until it is pitch dark outside. 
Flash your headlights during the day to fool oncoming vehicles into thinking a police radar trap is ahead. 
If one of your headlights burns out, use your highbeams until it is replaced. 
Or... if one of your headlights burns out, do not use your headlights at all. Just those little dim yellow parking lights. 
If you drive a vehicle that is significantly higher off the ground than most other cars, pull up to a stop sign/red light at least a foot to the left of the car in front. That way your headlights reflect off the other car's side view mirror and directly into the driver's face. 
When you see one of those newer cars with the daytime lights on, flash your headlights several times to remind the other driver that his lights are on. 
Attach as many fog, spot, neon, blinking, and flashing lights to the top and bottom of your car/truck as possible. 
When an oncoming driver flashes his highbeams on and off to tell you that your highbeams are on, ignore him. 
Flash your highbeams on and off several times to oncoming cars to tell them that their highbeams are on... when they're not. 
The little interior map light can be used as a substitute for headlights.
When driving at night with a burned out headlight, drive so that the working headlight is in the middle of the lane and to other drivers, you look like a motorcycle.

Of work and leisure.... 

I spent all day yesterday planning the big Hawaii vacation! I should have booked it at least a month ago, but my health situation has been so unstable that I was afraid to commit to anything. I'm still afraid of being too sick to travel....I will probably have to get travel insurance just in case. But the more I thought about it, the more I realized that if I put it off another year (we've already put if off for two years hoping I would get better), I may be unable to go anywhere at all. So I'm determined to go now no matter what. We will likely book with a travel agent some time this week. Since this is THE dream vacation for Dan and me (the big Kahuna, if you will) as well as possibly the last time I'll ever get to travel, I picked out some activities that we normally couldn't afford, such as a helicopter tour of volcanoes and waterfalls and a sunset ride on a catamaran. There are soooo many things to do in Hawaii that I narrowed them down to "must sees"...Pearl Harbor, Volcanoes National Park, one trek to see a waterfall up close, maybe going snorkeling once if I'm up to it, the former royal palace. I'm not going to book any lengthy tours or anything too physically demanding (bummer, 'cuz I'd LOVE to try surfing, parasailing, hang gliding), and I will make sure we get some beach time in. We plan to stay in condos so I can have access to a full kitchen and only eat out occasionally as gluten-free dining is a pain in the butt.

Got sunburned at last Sunday's baseball game. I used Solarcaine aloe vera gel on it, which works pretty well. BUT I burned my scalp, which is now peeling. Ewwww!! I'm bringing a hat to Hawaii. I am concerned, though, that in addition to the mild burn, I got a rash on one hand AND some ugly brown blotches on my face. The rash went away after I put Solarcaine on it, but the blotches appear to be permanent. I'm going to the dermatologist on Tuesday to find out what might be going on, whether it's illness or med-related. I need to know BEFORE I go to Hawaii so I can take pre-cautions if needed.

Started a half-dose of Cytomel (thyroid T3) this week...I'm noticing perhaps a tiny bit of difference in energy, not enough to help much yet. Next week, I'll go to the full dose. I'm doing this gradually as it was traumatic enough messing with the prednisone. I'm hoping it will be enough to keep me alert at work.

Dan and I both passed our assessments on our software training at work. We passed them quicker with the least amount of training of anyone so far. I'm looking forward to the next segment because it involves more creative stuff. Now if I can just stay awake during the tutorials....

I actually got to do some non-automated work this week. Assembled a spec ad Thursday night, something usually done by the design department. And I spent three hours Friday night fixing a problem ad....I was surprised I was allowed to work on it that long. I think it's because it involved software we don't even have in our department yet, and no one knows how to use it (I winged it, heh heh). It helped that the foreman that likes me was there....the other foreman doesn't let me spend more than 15 minutes on something before he decides I'm incompetent and gives it to an "expert". So, brownie points for me.

Pain level: 6
Fatigue level: 7

Friday, August 13, 2004

Rave of the Day for August 13: 

What if AOL made cars? Scary thought, isn't it? Got this nugget from Ducky....

The AOL Car
The AOL car would have a TOP speed of 40 MPH yet have a 200 MPH speedometer.
The AOL car would come equipped with a NEW and fantastic 8-Track tape player.
The car would often refuse to start and owners would just expect this and try again later.
The windshield would have an extra dark tint to protect the driver from seeing better cars.
AOL would sell the same model car year after year and claim it's the NEW model.
Every now and then the brakes on the AOL car would just "lock-up" for no apparent reason.
The AOL car would have a very plain body style but would have lots'a pretty colors and lights.
The AOL car would have only one door but it would have 5 extra seats for family members.
Anyone dissatisfied could return the car but must continue to make payments for 6 months.
If an AOL car owner received 3 parking tickets AOL would take the car off of them.
The AOL car would have an AOL Cell phone that can only place calls to other AOL car cell phones.
AOL would pass a new car law forbidding AOL car owners from driving near other car dealerships.
AOL car mechanics would have no experience in car repair.
Younger AOL car drivers would be able to make other peoples AOL cars stall just for fun.
It would not be possible to upgrade your AOL car stereo.
AOL cars would be forced to use AOL gas that cost 20% more and gave worse mileage.
Anytime an AOL car owner saw another AOL car owner he would wonder, M/F/age?
It would be common for AOL car owners to divorce just to marry another AOL car owner.
AOL car owners would always claim to be older or younger than they really are.
AOL cars would come with a steering wheel and AOL would claim no other cars have them.
Every time you close the door on the AOL car it would say, "Good-Bye."

Pain back down to a dull roar.... 

Whew! Such a relief when I woke up today hurting less. I guess my adrenals have adjusted to being off the prednisone.

I seem to be getting around all right now...slower than I would like, but not quite as bad as before the prednisone. I have started a low dose of Cytomel (thyroid hormone) this week and hope it will help with the fatigue after a a few more days. I was able to stay awake at work tonight but fell asleep during the ride home.

I am concerned, though, about the heaviness in my chest. It has not let up at all. It seems to take more effort than it should to get a deep breath, and I've developed a dry cough. I will ask the rheumatologist at my next appointment whether I should consult a specialist. I'm probably fine, but Sjogren's can cause damage to the lungs, so I might want to make sure.

Pain level: 4
Fatigue level: 8

Wednesday, August 11, 2004

Rave of the Day for August 11: 

It appears that the bunnies who have been bringing us 30-second versions of famous movies have gone on vacation. Here is a postcard from them. Move the mouse over the screen to see what they do, and click on the duck when prompted:

30 Second Bunnies Troupe on Vacation

Owwwwww, Part 2.... 

Ooohhh, man. My body is having an adrenal crisis and has responded by turning up the pain volume to 11.

I was absolutely determined to go to work tonight anyway since I just went back last week after being gone for a month. But I am one head to toe solid chunk of agony, barely able to walk across the room. So I called in sick yet again, and then Dan had to help me out of the chair because I hurt too much to get up.

I hope that sufficient rest tonight will enable me to return to work tomorrow. I think I'll take an epsom salt bath and go to sleep early. I am soooo weary because pain is keeping me awake.

Pain level: 11
Fatigue level: 10


First day off the prednisone. Every square inch of me hurts. I'm operating at about 10 percent capacity. My brain and my body are both moving in slow motion again, so at least they're back in synch.

So was the prednisone treatment a success? Well, sort of. The weakness in my legs has thankfully not returned, and so far the neuropathy, while not gone, is less than it was. The speech is better most of the time, although I've been stuttering late at night when I'm really tired. The return of grip strength in my hands was unfortunately temporary, as was the return of cognitive function. And of course the fatigue, heaviness in my chest and slowness of movement have gone back to being relentless. Sigh.

Went to the chiropractor today. He asked me if I had tried finding a treatment center for Sjogren's or some facility that specializes in ailments like mine. I looked around online a bit tonight and didn't come up with much. Most of the research centers are only focusing on dry eyes or dry mouth....if those were my only problems, I'd be a happy woman indeed. I didn't really see anything that addresses neurological problems. When I see the rheumatologist at the end of the month, I'll ask him if there are any diagnostics available elsewhere that I haven't tried, or any hospitals that might be able to help me. I just need to be sure I really am doing everything I can to get better.

At least I didn't doze off tonight at work, and I suprised myself by passing an assessment for the new software we're learning. I guess I'm retaining more than I thought I was. It's amazing to me that I can think at all through this pain.

I started the Cytomel today. I'm taking a half dose for a week before I move up to the full dose. It usually takes awhile to adjust to new thyroid meds, so I will try to be patient. I'm hoping I will gain enough energy to be able to stay alert at work.

So much I want to do, but I need to go to bed and get some sleep before aquacise.

Pain level: 9
Fatigue level: 8

Tuesday, August 10, 2004

The sledgehammer has landed.... 

It's baaack. I'm at square one again as far as the fatigue goes. Got some good sleep before aquacise this morning, but I still got smacked with crushing exhaustion as soon as I got out of bed.

It took me twice as long to get out the door this morning than it should have. My thinking is all muddy again...couldn't remember what I needed to do to get ready. Kept having to stop and collect myself and visualize what I usually do.

And while my legs still feel strong (thank goodness), they are moving noticeably slower again. I was all out of synch in aquacise. And my chest felt soooo heavy.

Driving home, all I could think about was climbing back into bed. I took an hour and a half nap. Was already tired again by the time I took a shower.

Finally got a turn at training on the new software tonight at work, and what happens? I doze off during the tutorials!! This is sooooo frustrating!

The most upsetting part was after I got home tonight. Was flipping through a catalog and couldn't hang onto it. Turns out the grip strength in my hands is fading....one of the symptoms we hoped would be resolved by the prednisone for good. And I stuttered a few times...another problem not as solved as I'd hoped.

I'm even dozing off while I'm typing this. Ridiculous. Soooo heavy and slow....I can't even think of a good analogy for it.

Tomorrow, I will start taking the Cytomel (thyroid hormone). I'm hoping I can at least get a reduction in fatigue. It's the last hope I've got, really.

Pain level: 6
Fatigue level: 9

Sunday, August 08, 2004

Desperate for spiritual aid.... 

Ok, I know this is going to appear as the ramblings of a madwoman, but I'll take that chance.

As I mentioned yesterday, I'm finishing up my two-week course of prednisone to stop the latest exacerbation of Sjogren's symptoms, particularly the neurological ones. I'm at 10mg now and will take the very last pill tomorrow. This dose is too low to prevent the inflammation or the exhaustion from returning, but it is simply too dangerous to prolong this med at a higher dose unless I need it to save my life.

I experienced a remarkable sessation of symptoms for a precious few days, but now I'm on the other side coming down, meaning each day brings me closer to incapacitation. This is not an exaggeration. The only question is whether I'll be in better shape when I'm done with the prednisone than before I took it.

This morning was the worst so far. I could do nothing but lie in bed feeling as though a demon were attempting to crush me from the inside out. The heaviness in my chest when drawing breath, the slowing of thought and movement, all came flooding back at once.

It's a helpless feeling, having so much illness return so fast and being able to do absolutely nothing about it. To know I'm still an intelligent person but losing the access to ease of thought all over again. Like a cherished friend vanishing without a forwarding address.

So I cried. I'm not ashamed of this, as there was really nothing else I could do. But I also begged for my creator to heal me, something I've never done before in my life.

I realize physical healing may not be the plan for me....what I am desperate for is healing of the spiritual kind. I'm terrified that this illness that is crushing me physically will also crush my spirit. If I cannot stay strong spiritually, I face the prospect of never being able to get out of bed again.

I cried for a long time because I needed to grieve the renewed loss of physical ability. Then I got up to start the day I had planned. It was essential that I do this, to not let Sjogren's and fibromyalgia win.

So I went to the baseball game and picnic as if nothing were different. I was operating at perhaps 25 percent capacity versus the 5 percent functionality pre-prednisone, so I was able to get around to my satisfaction. In a week, I might not be able to do that.

I found my copy of "Flowers for Algernon" by Daniel Keyes. In it, when Charlie realizes his loss of cognitive function, he pleads: "please...please not let me forget how to read and write". That's about where I am right now.

Please don't let disease crush my spirit.

I have never done this before and may never do this again, but anyone who reads this, please pray for me or send out a wish for me to survive this emotionally intact. My soul aches so badly, it really does. I cannot be a useful person if I give up.

Pain level: 7
Fatigue level: 7

Bonus Rave of the Day for August 8: 

Just in case the Rave of the Day made you think I've become a Democrat, here's link to the website with the funniest name I've ever seen. Nice to know I'm not the only independent person displeased with their choices. Warning before you click: this site contains foul language. While that has never bothered me, if the subject matter of the previous two posts hasn't offended you, the profanity here might:

John Kerry Is a Douchebag But I'm Voting for Him Anyway

Rave of the Day for August 8: 

Since I'm already in a reflective mood after watching "Fahrenheit 911", here's more food for thought from another President's son....

The Case Against George W. Bush
By Ron Reagan

It may have been the guy in the hood teetering on the stool, electrodes clamped to his genitals. Or smirking Lynndie England and her leash. Maybe it was the smarmy memos tapped out by soft-fingered lawyers itching to justify such barbarism. The grudging, lunatic retreat of the neocons from their long-standing assertion that Saddam was in cahoots with Osama didn't hurt. Even the Enron audiotapes and their celebration of craven sociopathy likely played a part. As a result of all these displays and countless smaller ones, you could feel, a couple of months back, as summer spread across the country, the ground shifting beneath your feet. Not unlike that scene in The Day After Tomorrow, then in theaters, in which the giant ice shelf splits asunder, this was more a paradigm shift than anything strictly tectonic. No cataclysmic ice age, admittedly, yet something was in the air, and people were inhaling deeply. I began to get calls from friends whose parents had always voted Republican, "but not this time." There was the staid Zbigniew Brzezinski on the staid NewsHour with Jim Lehrer sneering at the "Orwellian language" flowing out of the Pentagon. Word spread through the usual channels that old hands from the days of Bush the Elder were quietly (but not too quietly) appalled by his son's misadventure in Iraq. Suddenly, everywhere you went, a surprising number of folks seemed to have had just about enough of what the Bush administration was dishing out. A fresh age appeared on the horizon, accompanied by the sound of scales falling from people's eyes. It felt something like a demonstration of that
highest of American prerogatives and the most deeply cherished American freedom: dissent.

Oddly, even my father's funeral contributed. Throughout that long, stately, overtelevised week in early June, items would appear in the newspaper discussing the Republicans' eagerness to capitalize (subtly, tastefully) on the outpouring of affection for my father and turn it to Bush's advantage for the fall election. The familiar "Heir to Reagan" puffballs were reinflated and loosed over the proceedings like (subtle, tasteful) Mylar balloons. Predictably, this backfired.

People were treated to a side-by-side comparison-Ronald W. Reagan versus George W. Bush-and it's no surprise who suffered for it. Misty-eyed with nostalgia, people set aside old political gripes for a few days and remembered what friend and foe always conceded to Ronald Reagan: He was damned impressive in the role of leader of the free world. A sign in the crowd, spotted during the slow roll to the Capitol rotunda, seemed to sum up the mood-a portrait of my father and the words NOW THERE WAS A PRESIDENT.

The comparison underscored something important. And the guy on the stool, Lynndie, and her grinning cohorts, they brought the word: The Bush administration can't be trusted. The parade of Bush officials before various commissions and committees-Paul Wolfowitz, who couldn't quite remember how many young Americans had been sacrificed on the altar of his ideology; John Ashcroft, lip quivering as, for a delicious, fleeting moment, it looked as if Senator Joe Biden might just come over the table at him-these were a continuing reminder. The Enron creeps, too-a reminder of how certain environments and particular habits of mind can erode common decency. People noticed. A tipping point had been reached. The issue of credibility was back on the table. The L-word was in circulation. Not the tired old bromide liberal. That's so 1988. No, this time something much more potent: liar.

Politicians will stretch the truth. They'll exaggerate their accomplishments, paper over their gaffes. Spin has long been the lingua franca of the political realm. But George W. Bush and his administration have taken "normal" mendacity to a startling new level far beyond lies of convenience. On top of the usual massaging of public perception, they traffic in big lies, indulge in any number of symptomatic small lies, and, ultimately, have come to embody dishonesty itself. They are a lie. And people, finally, have started catching on.

None of this, needless to say, guarantees Bush a one-term presidency.

The far-right wing of the country-nearly one third of us by some estimates-continues to regard all who refuse to drink the Kool-Aid (liberals, rationalists, Europeans, et cetera) as agents of Satan.

Bush could show up on video canoodling with Paris Hilton and still bank their vote. Right-wing talking heads continue painting anyone who fails to genuflect deeply enough as a "hater," and therefore a nut job, probably a crypto-Islamist car bomber. But these protestations have taken on a hysterical, almost comically desperate tone. It's one thing to get trashed by Michael Moore. But when Nobel laureates, a vast majority of the scientific community, and a host of current and former diplomats, intelligence operatives, and military officials line up against you, it becomes increasingly difficult to characterize the opposition as fringe wackos.

Does anyone really favor an administration that so shamelessly lies?

One that so tenaciously clings to secrecy, not to protect the American people, but to protect itself? That so willfully misrepresents its true aims and so knowingly misleads the people from whom it derives its power? I simply cannot think so. And to come to the same conclusion does not make you guilty of swallowing some liberal critique of the Bush presidency, because that's not what this is. This is the critique of a person who thinks that lying at the top levels of his government is abhorrent. Call it the honest guy's critique of George W. Bush.

THE MOST EGREGIOUS EXAMPLES OF distortion and misdirection-which the administration even now cannot bring itself to repudiate-involve our putative "War on Terror" and our subsequent foray into  Iraq.

During his campaign for the presidency, Mr. Bush pledged a more "humble" foreign policy. "I would take the use of force very seriously," he said. "I would be guarded in my approach." Other countries would resent us "if we're an arrogant nation." He sniffed at the notion of "nation building." "Our military is meant to fight and win wars. . . . And when it gets overextended, morale drops."

International cooperation and consensus building would be the cornerstone of a Bush administration's approach to the larger world.

Given candidate Bush's remarks, it was hard to imagine him, as president, flipping a stiff middle finger at the world and charging off adventuring in the Middle East.

But didn't 9/11 reshuffle the deck, changing everything? Didn't Mr. Bush, on September 12, 2001, awaken to the fresh realization that bad guys in charge of Islamic nations constitute an entirely new and grave threat to us and have to be ruthlessly confronted lest they threaten the American homeland again? Wasn't Saddam Hussein rushed to the front of the line because he was complicit with the hijackers and in some measure responsible for the atrocities in Washington, D. C., and at the tip of Manhattan?

Well, no.

As Bush's former Treasury secretary, Paul O'Neill, and his onetime "terror czar," Richard A. Clarke, have made clear, the president, with the enthusiastic encouragement of Defense Secretary Donald Rumsfeld and Paul Wolfowitz, was contemplating action against Iraq from day one. "From the start, we were building the case against Hussein and looking at how we could take him out," O'Neill said. All they needed was an excuse. Clarke got the same impression from within the White House. Afghanistan had to be dealt with first; that's where the actual perpetrators were, after all. But the Taliban was a mere appetizer; Saddam was the entre. (Or who knows? The soup course?) It was simply a matter of convincing the American public (and our representatives) that war was justified.

The real-but elusive-prime mover behind the 9/11 attacks, Osama bin Laden, was quickly relegated to a back burner (a staff member at Fox News-the cable-TV outlet of the Bush White House-told me a year ago that mere mention of bin Laden's name was forbidden within the company, lest we be reminded that the actual bad guy remained at large) while Saddam's Iraq became International Enemy Number One.

Just like that, a country whose economy had been reduced to shambles by international sanctions, whose military was less than half the size it had been when the U. S. Army rolled over it during the first Gulf war, that had extensive no-flight zones imposed on it in the north and south as well as constant aerial and satellite surveillance, and whose lethal weapons and capacity to produce such weapons had been destroyed or seriously degraded by UN inspection teams became, in Mr. Bush's words, "a threat of unique urgency" to the most powerful nation on earth.

Fanciful but terrifying scenarios were introduced: Unmanned aircraft, drones, had been built for missions targeting the U. S., Bush told the nation. "We don't want the smoking gun to be a mushroom cloud," National Security Advisor Condoleezza Rice deadpanned to CNN. And, Bush maintained, "Iraq could decide on any given day to provide a biological or chemical weapon to a terrorist group or individual terrorists." We "know" Iraq possesses such weapons, Rumsfeld and Vice-President Cheney assured us. We even "know" where they are hidden.

After several months of this mumbo jumbo, 70 percent of Americans had embraced the fantasy that Saddam destroyed the World Trade Center.

ALL THESE ASSERTIONS have proved to be baseless and, we've since discovered, were regarded with skepticism by experts at the time they were made. But contrary opinions were derided, ignored, or covered up in the rush to war. Even as of this writing, Dick Cheney clings to his mad assertion that Saddam was somehow at the nexus of a worldwide terror network.

And then there was Abu Ghraib. Our "war president" may have been justified in his assumption that Americans are a warrior people. He pushed the envelope in thinking we'd be content as an occupying power, but he was sadly mistaken if he thought that ordinary Americans would tolerate an image of themselves as torturers. To be fair, the torture was meant to be secret. So were the memos justifying such treatment that had floated around the White House, Pentagon, and Justice Department for more than a year before the first photos came to light. The neocons no doubt appreciate that few of us have the stones to practice the New Warfare. Could you slip a pair of women's panties over the head of a naked, cowering stranger while forcing him to masturbate? What would you say while sodomizing him with a toilet plunger? Is keeping someone awake till he hallucinates inhumane treatment or merely "sleep management"?

Most of us know the answers to these questions, so it was incumbent upon the administration to pretend that Abu Ghraib was an aberration, not policy. Investigations, we were assured, were already under way; relevant bureaucracies would offer unstinting cooperation; the handful of miscreants would be sternly disciplined. After all, they didn't "represent the best of what America's all about." As anyone who'd watched the proceedings of the 9/11 Commission could have predicted, what followed was the usual administration strategy of stonewalling, obstruction, and obfuscation. The appointment of investigators was stalled; documents were withheld, including the full report by Major General Antonio Taguba, who headed the Army's primary investigation into the abuses at Abu Ghraib. A favorite moment for many featured John McCain growing apoplectic as Donald Rumsfeld and an entire tableful of army brass proved unable to answer the simple question Who was in charge at Abu Ghraib?

The Bush administration no doubt had its real reasons for invading and occupying Iraq. They've simply chosen not to share them with the American public. They sought justification for ignoring the Geneva Convention and other statutes prohibiting torture and inhumane treatment of prisoners but were loath to acknowledge as much. They may have ideas worth discussing, but they don't welcome the rest of us in the conversation. They don't trust us because they don't dare expose their true agendas to the light of day. There is a surreal quality to all this: Occupation is liberation; Iraq is sovereign, but we're in control; Saddam is in Iraqi custody, but we've got him; we'll get out as soon as an elected Iraqi government asks us, but we'll be there for years to come. Which is what we counted on in the first place, only with rose petals and easy coochie.

This Mbius reality finds its domestic analogue in the perversely cynical "Clear Skies" and "Healthy Forests" sloganeering at Bush's EPA and in the administration's irresponsible tax cutting and other fiscal shenanigans. But the Bush administration has always worn strangely tinted shades, and you wonder to what extent Mr. Bush himself lives in a world of his own imagining.

And chances are your America and George W. Bush's America are not the same place. If you are dead center on the earning scale in real-world twenty-first-century America, you make a bit less than  $32,000 a year, and $32,000 is not a sum that Mr. Bush has ever associated with getting by in his world. Bush, who has always managed to fail upwards in his various careers, has never had a job the way you have a job- where not showing up one morning gets you fired, costing you your health benefits. He may find it difficult to relate personally to any of the nearly two million citizens who've lost their jobs under his administration, the first administration since Herbert Hoover's to post a net loss of jobs. Mr. Bush has never had to worry that he couldn't afford the best available health care for his children. For him, forty-three million people without health insurance may be no more than a politically inconvenient abstraction. When Mr. Bush talks about the economy, he is not talking about your  economy. His economy is filled with pals called Kenny-boy who fly around in their own airplanes. In Bush's economy, his world, friends relocate offshore to avoid paying taxes. Taxes are for chumps like you. You are not a friend. You're the help. When the party Mr. Bush is hosting in his world ends, you'll be left picking shrimp toast out of the carpet.

ALL ADMINISTRATIONS WILL DISSEMBLE, distort, or outright lie when their backs are against the wall, when honesty begins to look like political suicide. But this administration seems to lie reflexively, as if it were simply the easiest option for busy folks with a lot on their minds. While the big lies are more damning and of immeasurably greater import to the nation, it is the small, unnecessary prevarications that may be diagnostic. Who lies when they don't have to? When the simple truth, though perhaps embarrassing in the short run, is nevertheless in one's long-term self-interest? Why would a president whose calling card is his alleged rock-solid integrity waste his chief asset for penny-ante stakes? Habit, perhaps. Or an inability to admit even small mistakes.

Mr. Bush's tendency to meander beyond the bounds of truth was evident during the 2000 campaign but was largely ignored by the mainstream media. His untruths simply didn't fit the agreed-upon narrative.

While generally acknowledged to be lacking in experience, depth, and other qualifications typically considered useful in a leader of the free world, Bush was portrayed as a decent fellow nonetheless, one whose straightforwardness was a given. None of that "what the meaning of is is" business for him. And, God knows, no furtive, taxpayer- funded fellatio sessions with the interns. Al Gore, on the other hand, was depicted as a dubious self-reinventor, stained like a certain blue dress by Bill Clinton's prurient transgressions. He would spend valuable weeks explaining away statements-"I invented the Internet"-that he never made in the first place. All this left the coast pretty clear for Bush.

Scenario typical of the 2000 campaign: While debating Al Gore, Bush tells two obvious-if not exactly earth-shattering-lies and is not challenged. First, he claims to have supported a patient's bill of rights while governor of Texas. This is untrue. He, in fact, vigorously resisted such a measure, only reluctantly bowing to
political reality and allowing it to become law without his signature. Second, he announces that Gore has outspent him during the campaign. The opposite is true: Bush has outspent Gore. These misstatements are briefly acknowledged in major press outlets, which then quickly return to the more germane issues of Gore's pancake makeup and whether a certain feminist author has counseled him to be more of an "alpha male."

Having gotten away with such witless falsities, perhaps Mr. Bush and his team felt somehow above day-to-day truth. In any case, once ensconced in the White House, they picked up where they left off.

IN THE IMMEDIATE AFTERMATH and confusion of 9/11, Bush, who on that day was in Sarasota, Florida, conducting an emergency reading of "The Pet Goat," was whisked off to Nebraska aboard Air Force One. While this may have been entirely sensible under the chaotic circumstances- for all anyone knew at the time, Washington might still have been under attack-the appearance was, shall we say, less than gallant. So a story was concocted: There had been a threat to Air Force One that  necessitated the evasive maneuver. Bush's chief political advisor, Karl Rove, cited "specific" and "credible" evidence to that effect.

The story quickly unraveled. In truth, there was no such threat.

Then there was Bush's now infamous photo-op landing aboard the USS Abraham Lincoln and his subsequent speech in front of a large banner emblazoned MISSION ACCOMPLISHED. The banner, which loomed in the background as Bush addressed the crew, became problematic as it grew clear that the mission in Iraq-whatever that may have been-was far from accomplished. "Major combat operations," as Bush put it, may have technically ended, but young Americans were still dying almost daily. So the White House dealt with the questionable banner in a manner befitting a president pledged to "responsibility and accountability": It blamed the sailors. No surprise, a bit of digging by journalists revealed the banner and its premature triumphalism to be the work of the White House  communications office.

More serious by an order of magnitude was the administration's dishonesty concerning pre-9/11 terror warnings. As questions first arose about the country's lack of preparedness in the face of terrorist assault, Condoleezza Rice was dispatched to the pundit arenas to assure the nation that "no one could have imagined
terrorists using aircraft as weapons." In fact, terrorism experts had warned repeatedly of just such a calamity. In June 2001, CIA director George Tenet sent Rice an intelligence report warning that "it is highly likely that a significant Al Qaeda attack is in the near future, within several weeks." Two intelligence briefings given to Bush in the summer of 2001 specifically connected Al Qaeda to the imminent danger of hijacked planes being used as weapons. According to The New York Times, after the second of these briefings, titled "Bin Laden Determined to Attack Inside United States," was delivered to the president at his ranch in Crawford, Texas, in August, Bush "broke off from work early and spent most of the day fishing." This was the briefing Dr. Rice dismissed as "historical" in her testimony before the 9/11 Commission.

What's odd is that none of these lies were worth the breath expended in the telling. If only for self-serving political reasons, honesty was the way to go. The flight of Air Force One could easily have been explained in terms of security precautions taken in the confusion of momentous events. As for the carrier landing, someone should have fallen on his or her sword at the first hint of trouble: We told the president he needed to do it; he likes that stuff and was gung-ho; we figured, What the hell?; it was a mistake. The banner? We thought the sailors would appreciate it. In retrospect, also a mistake. Yup, we sure feel dumb now. Owning up to the 9/11 warnings would have entailed more than simple embarrassment. But done forthrightly and immediately, an honest reckoning would have earned the Bush team some respect once the dust settled. Instead, by needlessly tap-dancing, Bush's White House squandered vital credibility, turning even relatively minor gaffes into telling examples of its tendency to distort and evade the truth.

But image is everything in this White House, and the image of George Bush as a noble and infallible warrior in the service of his nation must be fanatically maintained, because behind the image lies . . .nothing? As Jonathan Alter of Newsweek has pointed out, Bush has "never fully inhabited" the presidency. Bush apologists can smilingly excuse his malopropisms and vagueness as the  plainspokenness of a man of action, but watching Bush flounder when attempting to communicate extemporaneously, one is left with the impression that he is ineloquent not because he can't speak but because he doesn't bother to think.

GEORGE W. BUSH PROMISED to "change the tone in Washington" and ran for office as a moderate, a "compassionate conservative," in the focus-group-tested sloganeering of his campaign. Yet he has governed from the right wing of his already conservative party, assiduously tending a "base" that includes, along with the expected Fortune 500 fat cats, fiscal evangelicals who talk openly of doing away with Social Security and Medicare, of shrinking government to the size where they can, in tax radical Grover Norquist's phrase, "drown it in the bathtub." That base also encompasses a healthy share of anti- choice zealots, homophobic bigots, and assorted purveyors of junk science. Bush has tossed bones to all of them-"partial birth" abortion legislation, the promise of a constitutional amendment banning marriage between homosexuals, federal roadblocks to embryonic- stem-cell research, even comments suggesting presidential doubts about Darwinian evolution. It's not that Mr. Bush necessarily shares their worldview; indeed, it's unclear whether he embraces any coherent philosophy. But this president, who vowed to eschew politics in favor of sound policy, panders nonetheless in the interest of political gain. As John DiIulio, Bush's former head of the Office of Community and Faith-Based Initiatives, once told this magazine, "What you've got is everything-and I mean everything-being run by the political arm."

This was not what the American electorate opted for when, in 2000, by a slim but decisive margin of more than half a million votes, they chose . . . the other guy. Bush has never had a mandate. Surveys indicate broad public dissatisfaction with his domestic priorities.

How many people would have voted for Mr. Bush in the first place had they understood his eagerness to pass on crushing debt to our children or seen his true colors regarding global warming and the environment? Even after 9/11, were people really looking to be dragged into an optional war under false pretenses?

If ever there was a time for uniting and not dividing, this is it.

Instead, Mr. Bush governs as if by divine right, seeming to actually believe that a wise God wants him in the White House and that by constantly evoking the horrible memory of September 11, 2001, he can keep public anxiety stirred up enough to carry him to another term.

UNDERSTANDABLY, SOME SUPPORTERS of Mr. Bush's will believe I harbor a personal vendetta against the man, some seething resentment. One conservative commentator, based on earlier remarks I've made, has already discerned "jealousy" on my part; after all, Bush, the son of a former president, now occupies that office himself, while I, most assuredly, will not. Truth be told, I have no personal feelings for Bush at all. I hardly know him, having met him only twice, briefly and uneventfully-once during my father's presidency and once during my father's funeral. I'll acknowledge occasional annoyance at the pretense that he's somehow a clone of my father, but far from threatening, I see this more as silly and pathetic. My father, acting roles excepted, never pretended to be anyone but himself. His Republican party, furthermore, seems a far cry from the current model, with its cringing obeisance to the religious Right and its kill-anything-that-moves attack instincts. Believe it or not, I don't look in the mirror every morning and see my father looming over my shoulder. I write and speak as nothing more or less than an American citizen, one who is plenty angry about the direction our country is being dragged by the current administration. We have reached a critical juncture in our nation's history, one ripe with both danger and possibility. We need leadership with the wisdom to prudently confront those dangers and the imagination to boldly grasp the possibilities. Beyond issues of fiscal irresponsibility and ill- advised militarism, there is a question of trust. George W. Bush andhis allies don't trust you and me. Why on earth, then, should we trust them?

Fortunately, we still live in a democratic republic. The Bush team cannot expect a cabal of right-wing justices to once again deliver the White House.  Come November 2, we will have a choice: We can embrace a lie, or we can restore a measure of integrity to our government. We can choose, as a bumper sticker I spotted in Seattle put it, SOMEONE ELSE FOR PRESIDENT.

Making the best of it.... 

Awakened too early today by the sounds of the dog crashing around like a rhino in a china shop. Had a really rotten headache. Decided to go back to bed and tried to get rid of the headache with some relaxation technique. Did get a bit more sleep and got the headache to back off somewhat.

While lying there, I started thinking about a short story I once read called "Flowers for Algernon" (later made into a move called "Charly", I believe). It's about a man of below-average intelligence who participates in an experiment to make him smarter. Not only does he get smarter, he actually becomes a genius, a process both wonderful and horrible. Sadly, the effects of the experiment are not permanent, and his mental capacity diminishes until he ends up right back where he started. I feel connected to that story right now, given the opportunity to utilize my real capacity for only a short time and doomed to return to the shadow of cognitive dysfunction. That's why it was so important for me to get out and enjoy myself today, while it was still possible.

I went to see "Fahrenheit 911" today. I've worked in and around the media for the better part of 20 years now....I've heard every conspiracy theory and "what the government doesn't want you to know" story there is. I thought there was nothing left to shock me. I was wrong. I literally sat in my theatre seat with my mouth agape. I was expecting some hype and exaggeration, but found little to point to, as the story practically told itself. There was very little about political parties here but a great deal about individuals, which should be our main concern in the first place. This movie did not change my opinion of the President at all... I never liked the man to start with. But it did make the deaths of 9/11 and in Iraq even more painful than they already were. I am grateful there are people like Michael Moore around who respect the intelligence of the American people enough to give them something to really challenge them.

After the movie, I went to Target. Since it appears I'm going to be doomed to wear grannyhose (support stockings to prevent edema in my feet) every time I'm out of the house for more than a few hours, shorts and skirts on the hottest days of the year are out. I went looking for some sleeveless tops to wear so at least some part of me can be cool. I found a style that fit and bought four of them, each a different color. I also found a microfiber bag a little larger than my fanny pack but smaller than my regular purse that has a long shoulder strap so I could wear it diagonally from one shoulder to the opposite hip, handy for the trip to the ballpark tomorrow.

I made one more stop after Target, to the local Blockbuster. I'd gotten a gift certificate to them for my birthday but hadn't had the energy to go there and use it until today. I got a heck of a deal on used DVDs....three for $25! I bought "School of Rock", "Scary Movie 3", and, believe it or not, the original version of "Night of the Living Dead". Went home feeling like I'd had a very productive day.

Can tell a huge difference between yesterday's 20mg dose of prednisone and today's 10mg. Feels like there's an elephant sitting on my chest....how come I didn't notice this heaviness in my chest until it went away this week? I guess it must have come on very gradually before. The familiar aching fatigue is beginning to weigh me down too, and thinking is becoming an act of exertion again. It has taken me over an hour to type this entry so far.

Sunday's ballgame is looking like the last chance for me to have a normal good time before the sledgehammer of fatigue squashes me flat again. I am grateful at least to have had a glimpse of the unencumbered life....makes the descent into shadow easier to cope with. There's always going to be a hint of sadness, though, knowing my potential but not being able to tap into it.

Pain level: 6
Fatigue level: 6

Saturday, August 07, 2004

One week down, ???? to go.... 

I felt about the same tonight as I did last night. This was a good thing, much better than deteriorating. If only I could stay about the same as I am now, I could get by all right.

But tomorrow, I decrease the dose of prednisone to 10mg. Maybe I won't feel the effect as much because I won't be at work straining to be competant. At any rate, I do not intend to let it deter me from having a good weekend.

I plan on capitalizing on my remaining energy by seeing a movie on Saturday and a baseball game on Sunday. Nothing so strenuous that I burn out early, but I don't want to waste my few remaining potentially good days sitting at home waiting to crash. I wonder if anyone realizes just how important this is me, the semblance of having a life.

I'm going to keep it casual Saturday, getting up whenever I happen to wake up, doing my 20 minute stint on the Gazelle, making something nice for lunch. Then I will go see "Fahrenheit 911". I want to check it out while I have some decent cognitive function left, heh heh.

Sunday is my employer's company picnic and day at the ballpark. Gotta admit, sometimes the perks of working for a large corporation are nice indeed. I'm pleased it happens to coincide with my mobility being at least better than average, so I can stroll about like everyone else and not worry about whether I'll run out of steam before I even find my seat.

I'm actually proud of myself for getting a whole week of work under my belt without dozing off once. First time in five freakin' months. If only I could bottle this and reproduce it for the next 27 years I have until official retirement age....

Pain level: 5
Fatigue level: 5

Friday, August 06, 2004

Rave for the Day for August 6: 

With all the hype concerning terrorism alerts, sometimes you've just gotta see the lighter side of things. Here's a link to an emercency preparedness parody site, courtesy of Robert:

Preparing for Emergencies

Already fading.... 

Taking a shower this afternoon, I was suddenly overcome by tiredness and wanted very much to just sit on the edge of the tub and rest. I felt heavy....more of an effort to take a deep breath, to stand up straight, to remember whether I had washed my hair yet. In other words, the Sjogren's already fighting its way back.

My thinking must be getting cloudy already too, because I made four mistakes at work despite being extremely careful. Luckily I caught them all before anyone else did. I wasn't expecting to start declining so fast.

Then after lunch, I spent about a half hour correcting a liquor ad, and when I stood up, the familiar stiffness in my knees, shoulders and upper back decided to make itself known. I'm still in better shape than when I started the prednisone, but I'm headed back the wrong way. I guess all I can do is cross my fingers that the really bad neurological problems will at least stay away.

I'm trying very hard not to get upset by this.

But I can't help feeling sad, knowing I have all this potential that I can't safely access for more than a few days at a time. There is nothing else medically that can be done for me.

I am not giving up yet. I will just have to figure out a way to endure this burden, both at work and in the rest of my life.

I'm already doing my best, though.... what else is there?

Prayer, maybe.

Pain level: 5
Fatigue level: 5

Thursday, August 05, 2004

Rave of the Day for August 5: 

Some of these I've seen before, but some are new. Enjoy!


Living on Earth is expensive, but it does include a free trip around the sun every year.

How long a minute is depends on what side of the bathroom door you're on.

Birthdays are good for you; the more you have, the longer you live.

Happiness comes through doors you didn't even know you left open.

Ever notice that the people who are late are often much jollier than the people who have to wait for them?

Most of us go to our grave with our music still inside of us.

If Wal-Mart is lowering prices every day, how come nothing is free yet?

You may be only one person in the world, but you may also be the world to one person.

Some mistakes are too much fun to only make once.

Don't cry because it's over; smile because it happened.

We could learn a lot from crayons: some are sharp, some are pretty, some are dull, some have weird names,
and all are different colors....but they all exist very nicely in the same box.

A truly happy person is one who can enjoy the scenery on a detour.

Working for God on earth does not pay much, but His Retirement plan is out of this world.

The Vice-President made me late for work... 

No, really. His motorcade came through town around the same time we were trying to get to work. Every highway entrance was blocked, and traffic was backed up for miles. We tried taking a side road, but there was a train crossing, so no progress there either. I guess some things can't be helped.

I'm feeling pretty decent tonight except for being EXTREMELY hungry (third day straight the prednisone has increased my appetite). I didn't get a lot of sleep last night, but I did take a nap after aquacise. Had a horrible time trying to wake back up, but once I did, I didn't get tired again like usual.

Still amazed how easy it is for me to move and think now. It feels automatic now, like it's supposed to be. Before, it was like my brain and body were filled with some kind of sludge....every thought or action was like moving a mountain. There were times I had an almost measurable delay between idea and implementation. I wonder how long this improvement will last.

I got my thryoid med filled at the pharmacy....I'm going back to Cytomel. This time, I'll be adding it to Armour to balance out the levels of T3 and T4 a little more. I'm not going to start it until the day after I'm done with the prednisone...it will be easier to tell if it's helping that way.

Pain level: 4
Fatigue level: 3

Wednesday, August 04, 2004

Rave of the Day for August 4: 

I thought these were clever. Courtesy of Ducky....

New Terminology
You can't be cool if you're using outdated lingo.
Here's the latest from my friends in the corporate and Silicon Valley jungles:
fast food joints, strip malls, sub-divisions as in "we were so lost in generica that I couldn't remember what city it was"
annoying but you can't stop watching - as in the O.J. trial
percussive maintenance
the fine art of whacking the crap out of a device to get it working
prairie dogging
in companies where everyone has a cubicle something happens and everyone pops up to look
square headed girlfriend
manuals and documentation
sexual relationship "this is Mary, my...um...friend"
world wide wait
yuppie food stamps
twenty dollar bills from an ATM

Popping in for an update.... 

Today was the last day of 40mg of prednisone. I go to 20mg for three days, then 10 for three more, and that's it. Had horrible insomnia Sunday night, then sleep like a zombie last night because I took 10mg of Ambien instead of my usual 5mg (at the doc's suggestion). I'm getting really yucky headaches from all this.

Work is going all right....it's still a struggle in spite of the prednisone. I'm truly amazed how very sick I was before last week. I feel like I have my brains back for the moment....made ZERO mistakes last night and only one tonight. I'm able to walk fairly easily but do occasionally get sharp pains that feel like they're coming straight through my bones. This will sound bizarre... but I actually have a sense of less inflammation, not that I was aware of any real swelling earlier. It's as if I have gotten thinner somehow between my outer skin and my bones. I suspect I really did have mild but widespread inflammation of blood vessels and perhaps other tissue.

Knowing now how bad I had gotten before I went on leave makes me realize how very careful I will have to be to preserve my ability to work. I'm giving up any computer time during lunch break so I can elevate my feet, and I will have to severely limit my home computer use during the week as well. I'm going to miss blogging and e-mailing my friends, but I must get this edema under control. I'm also resorting to daytime naps, even if they screw up my night time sleep, just to make sure I don't doze off at work.

I can feel my feet getting hot, which means they're swelling. Better tear myself away and get to sleep.

Pain level: 5
Fatigue level: 4

Sunday, August 01, 2004

Rave of the Day for August 1: 

Watched the DVD of "Elephant" last night. Wow is the first word that comes to mind. This is the definitive explanation of why violence takes place...the answer is that no one really knows the whole story.

I felt as though I were actually a part of the high school used as the central focus of the movie. The sprawling campus with its endless halls seems somehow impersonal, even when it contains students that know each other. But part of the point of the movie is that we hardly know each other at all.

This is beautifully illustrated in the way that we only see characters in small segments, the way you would see them if you happened to be walking past. You only hear bits of conversation, only see some of them from the side or back. You also see them out of chronological order, as if you were trying to remember something or solve a problem with no solution.

Knowing recent incidents that no doubt inspired the storyline, I was satisfied that no explanations were given. I suspect that the real witnesses of school shootings would see through any attempt to glorify or rationalize what took place. And that made the calm demeanor of the killers all the more chilling.

This made more sense to me than all the psychobabble surrounding the Columbine tragedy. The fact that there ARE no answers is exactly what makes it a tragedy.


Between the arthritis, tremor and lack of grip strength, I have a lot of trouble with my hands. This can affect things that most women take for granted, like shaving their legs. It is particularly difficult to hold the razor steady enough to get much of the hair off my knees, so I usually error on the side of caution and leave a bunch of stubble on them. For some reason, this bugs me.

I was pleasantly surprised tonight to discover that, thanks to the prednisone treatment, the grip strength in my hands has fully returned. So what do I want to do first? Get a nice close shave on my legs with steady hands. I get a brand new razor out, one of those kind with the triple blade surrounded by soap. I've been using this brand since it came out and never cut myself once. So with renewed confidence, I start shaving my left kneecap....and practically sliced it off! Ack! I couldn't believe how much I bled! Ohh, and it STINGS!

I ended up with a smooth but bloody left kneecap and a right kneecap that was sporting a beard, 'cuz I wasn't gonna try that again! I guess I underestimated my own strength, which is a novelty these days.

The moral of the story is: better hairy than bloody! Ewwww!

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