Saturday, July 31, 2004

Rave of the Day for July 31: 

The documentary film "Some Kind of Monster", which is in limited release in the US. You do not have to know a thing about Metallica to get something out of this. You also don't have to be the type of person who normally watches documentaries to find this interesting.

I have to admit to being skeptical when the film started out. I mean, the biggest metal band in history in group psychotherapy? I thought this would devolve into a very cheesy 12-step sort of thing with cheap mugging for the camera. But that didn't exactly happen, at least, not the way I expected.

I was enormously relieved to discover this was not a rip-off of reality TV. No secret interviews with bandmates backstabbing one another. They did do individual segments with each of the band members, but they focused on what their lives were like away from the band, which is really what we want to see anyway.

This was actually a pretty honest look at the band, enormously difficult to maintain with cameras rolling during moments of conflict. They do actually have to address the issue of whether being filmed affects their behavior and creativity. I was impressed that they did resist the tempation to ham it up. Most rockers wouldn't be able to resist.

I was surprised how suspenseful this was. Even though I knew it would turn out all right in the end, I was fascinated with how they were going to pull it off following Hetfield's unexpected year-long departure for rehab. And just how they would handle the search for a replacement bass player.

And of course, being the music fan that I am, I wanted to get inside the studio to see how "St. Anger" got made. I was not disappointed. Interesting that while they mix their tracks on a computer, all the lyrics are still scrawled by hand on lined notebook paper. Hearing how their ideas and sounds evolved into the finished product was gratifying.

Were there temper tantrums? Sure. Juvenile moments? Yep. But also surprising moments of genius, honesty, collective energy. And of course the wicked sense of humor we have come to love.

This was not a promo piece or a music video. This was three grown men trying to decide if a 20-year-old band was still viable, what it still held for them individually and as a group. Whether relinquishing control must also mean missing out on the creative process, and how much change is too much.

I will be watching for the DVD release on this one.

For more on the film, and cities where it is showing, go here:

Some Kind of Monster

Rock chick on the loose.... 

Decided to take advantage of the bit of energy I've gained from my prednisone treatment while it lasts. Nothing earth-shattering as I still have to be able to go to work on Monday, but I at least wanted to do a few things I was too fatigued to do before.

So on Thursday, I went to the new hair place near my house. My hair had grown out surprisingly fast in just a month, and the temporary color I'd done was already gone. I had the style changed a bit....a few short pieces in front now, the sides only as long as my chin, and the back was trimmed with a razor so I could fluff it out and make it look fuller. For the color, I chose violet. The sylist was a bit surprised I wanted to go that dark (it's a brown/black base), but when we were done, she thought it looked great! This sort of color fades really fast, but I think it will still look all right even when it changes hue.

Thursday night, I surprised Dan when he came home for work by volunteering to go to the grocery store by myself at 2am. Normally, it's all I can do to walk through the aisles while he pushes the cart. I got a full week's worth of food. The check-out lady knows me well enough to fill the grocery bags pretty light, so I was even able to put them in the car by myself for once.

Then yesterday, a friend of mine took me to see a movie about Metallica! It's a documentary called "Some Kind of Monster". It was only playing in two theatres in town...we had to drive some 40 miles. I hadn't been to the theatre since April because it was too painful to sit still that long, but I did ok yesterday. GREAT movie, by the way, for anyone who likes documentaries or rock music or both.

I'm going to try to finish up a few computer projects this weekend and may do a bit of de-cluttering of the command post (computer desk ).

Pain level: 4
Fatigue level: 5

Friday, July 30, 2004

Rave of the Day for July 30: 

I think I've posted some of these before, but think some are new. If not, hope you enjoy the rerun. Thanks to Ducky, the Daily Grinner....

New Word Power
1) Arachnoleptic fit (n.) The frantic dance performed just after you've accidentally walked through a spider web.
2) Beelzebug (n.) Satan in the form of a mosquito that gets into your bedroom at 3 in the morning and cannot be cast out.
3) Bozone (n.) The substance surrounding stupid people that stops bright ideas from penetrating. The bozone layer, unfortunately, shows little sign of breaking down in the near future.
4) Cashtration (n.) The act of buying a house, which renders the subject financially impotent for an indefinite period.
5) Caterpallor (n.) The color you turn after finding half a grub in the fruit you're eating.
6) Decaflon (n.) The grueling event of getting through the day consuming only things that are good for you.
7) Dopelar effect (n.) The tendency of stupid ideas to seem smarter when you come at them rapidly.
8) Extraterrestaurant (n.) An eating place where you feel you've been abducted and experimented upon. Also known as an E-T-ry.
9) Faunacated (adj.) How wildlife ends up when its environment is destroyed. Hence faunacatering (v.), which has made a meal of many species.
10) Foreploy (n.) Any misrepresentation or outright lie about yourself that leads to sex.
11) Grantartica (n.) The cold, isolated place where art companies dwell without funding.
12) Hemaglobe (n.) The bloody state of the world.
13) Intaxication (n.) Euphoria at getting a tax refund, which lasts until you realize it was your money to start with.
14) Kinstirpation (n.) A painful inability to move relatives who come to visit.
15) Lullabuoy (n.) An idea that keeps floating in your head.

Day 2 of the Great Prednisone Adventure..... 

I have started to get some of the grip strength back in my hands. I was able to grate two kinds of cheese last night for my gluten-free pizza. I'm feeling a little less clumsy as a result.

Also, tonight, I started feeling a bit more energetic. This is important as the number one thing keeping me from working is the fatigue. I know it won't last, but I'm trying to appreciate it while I have it.

One real downside to the prednisone is that while it's doing a great job on the inflammation from Sjogren's, it does absolutely nothing for fibromyalgia. In fact, I know a few people that actually hurt worse when they're on it. So I do have limits to my activity because of that.

Got my rheumy's authorization to return to work on Monday. Just in time, too...we're experiencing pesonnel and shift changes that day, and I want to be able to keep my workstation as I had to have special modifications made to it. I don't think my co-workers will recognize me, all short-haired and walking normally and looking alert.

Pain level: 5
Fatigue level: 5

Wednesday, July 28, 2004

Rave of the Day for July 28: 

I know we shouldn't laugh at another's misfortune, but ..... Ok, what are the odds anyone could duplicate this incident intentionally? A security cam caught the actions of a would-be criminal with unfortunate aim and absolutely no knowledge of bullet-proof glass.....

Stoned Criminals

Moving like a 40-year-old.... 

Usually I move like an 80-year-old, so this is a remarkable improvement. Day 1 of my two-week course of prednisone...60mg per day for 5 days, then decreasing doses the rest of the course.

Everyone in my aquacise class was amazed at the difference. I had not realized just how much trouble I was having not only walking but reaching overhead, bending to put on a shoe, etc. until suddenly I could do all these things without effort. Oh, THAT'S what it's supposed to be like.

I'm still way off balance, very clumsy with my hands and having trouble thinking straight, but I bet these will improve in a few days too. The fatigue will probably lessen and even go completely away at least for a little while. Yay!

The only thing I'll have to guard against is possibly injuring myself because my body is not longer used to easy movement, so I don't want to overdo it. It's difficult to resist the temptation to make up for lost time when you suddenly feel better.

Pain level: 5
Fatigue level: 7

Tuesday, July 27, 2004

Rave of the Day for July 27: 

This one is priceless! Joan sent it to me in an e-mail yesterday, and I could NOT quit laughing! It's obviously aimed at women, but even a man might get a chuckle out of this. Enjoy.....

Shopping For A Bathing Suit

In days gone by, the bathing suit for the over 40 crowd was boned, trussed and reinforced, not so much sewn, as engineered to fit.They were built to hold back in the right places and give some uplift - and they did a good job.

Today's stretch fabrics are designed for the prepubescent girl with a figure carved from a potato chip.

The mature woman has a choice -- -she can either go up front to the maternity department and try on a floral suit with a skirt, coming away looking like a hippopotamus who escaped from Disney's Fantasia -- or she can wander around every run of the mill department store trying to make a sensible choice from assorted designer's florescent rubber bands being sold as bathing suits.

What choice did I have?

I wandered around, and in desperation, picked out one and entered the fitting room (which is known to most of us "older girls" as a chamber of horrors).

The first thing I noticed was the extraordinary tensile strength of the stretch material. The Lycra in that bathing costume must have been developed by NASA to launch small rockets from a slingshot. I fought my way into it, but as I "twanged" the shoulder strap in place, I gasped in horror --- my boobs had disappeared!

Eventually, I found one boob cowering under my left armpit. It took a while to find the other. At last I located it flattened beside my seventh rib.

The problem is that modern bathing suits have no bra cups. The mature woman is meant to wear her boobs spread across her chest like a speed bump.

I realigned my speed bump and lurched toward the mirror to take a full view assessment. The bathing suit fit all right, -- but it only fit those bits of me willing to stay inside it, unfortunately. The rest of me rebelliously oozed out from top, bottom, and sides. I looked like a lump of play dough wearing undersized cling wrap.

As I tried to work out where all those extra bits had come from, the prepubescent sales girl popped her head through the curtain, "Oh, there you are!", she said, "that is a lovely suit." I curtly asked what other suits she had to show me.

I tried on a cream-crinkled one that made me look like a lump of masking tape.

I tried on a floral two-piece which gave the appearance of an oversized napkin in a serving ring.

I struggled into a 2-piece leopard skin that covered my stomach with ragged frills and I looked like Tarzan's Jane, pregnant with triplets and having a rough day.

I tried on a black number with a midriff and looked like a jellyfish in mourning.

I tried on a bright pink one-piece with such a high cut leg I thought I would have to wax my eyebrows to wear it.

Finally, I found a suit that fit . . . a two-piece affair with a shorts style bottom and a loose blouse-type top. It was cheap, comfortable, and bulge-friendly, so I bought it. I figured at least I had something I could wear and that the hours of search had been productive.

Life is not fair -- when I got home, I found a label, which read -- "Material might become transparent in water."

So, if you happen to be on the beach or near any other body of water this year and I happen to be there too .. I'll be the person in cut off jeans and a t-shirt ............ 

Making friends with prednisone... 

Well, she confirmed that the MRIs are completely normal. This at least means we know I don't have any lesions or tumors. She did say that my neurological symptoms could be Sjogren's syndrome causing inflammation further along the spinal cord or may be too subtle to show up on a scan.

We discussed migraine prevention since the latest symptoms (trouble with speech, cognition, weakness) are worse in the presence of migraines. Ufortunately, over the past six years, I've used EVERY med commonly prescribed for that purpose. Every med either did nothing or the side effects were prohibitive (like vomiting).

So we discussed all that I'm currently doing for inflammation. I'm taking Vioxx, Plaquenil and high dose pharmaceutical grade fish oil....a pretty powerful combo. There's really only one med stronger that she feels would be feasible, and that's prednisone.

I've had two other courses of prednisone in the past year....one was a short course of high dose when my edema got bad. The other was a long course of low dose for disabling fatigue associated with the Sjogren's. Both times did help with the neuropathy, so it would be reasonable to expect these latest symptoms would respond in kind.

So I'm doing a two week high dose course in the hope that the neurological symptoms will go away and stay away. At the very least, it will give me enough energy to return to work next week. I just found out that if I don't return on Monday I could lose my workstation and my shift (but not my job).

Fair warning.....I get reallllllly happy on prednisone. So if I suddenly make 600 blog entries in the next five days, that's why. I do look forward to returning to work and being able to honestly say I feel better.

I am developing quite a bit of respect for just how strong an illness Sjogren's can be (although I'm sure the fibromyalgia contributes too). I never thought I'd require steroids three times in a year. Even the lady at the pharmacy who filled the prescription looked at the dosage and said, "Wow, you must be really sick."

I can also see that this is likely to be an ongoing pattern over the coming years, short course prednisone when Sjogren's renders me unable to function. I know the side effects are horrible, but I either take it or remain at home disabled. I hope that research on rheumatic disease will generate a safer med someday that is as effective.

Pain level: 7
Fatigue level: 8

Monday, July 26, 2004

Rave of the Day for July 26: 

I rarely pass along the more serious e-mails I receive, but this one was so thought-provoking I couldn't ignore it. I got it quite some time ago from SilverWing, but it got lost in a sea of messages until I cleaned out my inbox last week.....

The little things that drive us crazy....

Next time your morning seems to be going wrong, the children are slow getting dressed, you can't seem to find the car keys, you hit every traffic light, don't get mad or frustrated; think about this:

After Sept. 11th, one company invited the remaining members of other companies who had been decimated by the attack on the Twin Towers to share their available office space.

At a morning meeting, the head of security told stories of why these people were alive...... and all the stories were just 'little' things.

As you might know, the head of the company got in late that day because his son started kindergarten.

Another fellow was alive because it was his turn to bring donuts.

One woman was late because her alarm clock didn't go off in time.

One was late because of being stuck on the NJ Turnpike because of an auto accident.

One missed his bus.

One spilled food on her clothes and had to take time to change.

One's car wouldn't start.

One went back to answer the telephone.

One had a child that dawdled and didn't get ready as soon as he should have.

One couldn't get a taxi.

The one that struck me was the man who put on a new pair of shoes that morning, took the various means to get to work but before he got there, he developed a blister on his foot. He stopped at a drugstore to buy a Band-Aid. That is why he is alive today.

Now when I am stuck in traffic, miss an elevator, turn back to answer a ringing telephone ... all the little things that annoy me .. I think to myself, this is exactly where God wants me to be at this very moment.

May God continue to bless you with all those annoying little things and may you remember their possible purpose.

Saw my primary care doc today.... 

She was alarmed to see how slowly I walk these days. She could also tell that I was exhausted. She was pleased at my weight loss, though.

I gave her a general update of what has been going on lately. She knows the neurologist I'm seeing tomorrow and approved of my choice. I told her the MRIs were normal, and she said that might just mean no obvious tumors or lesions....the neurologist may see something more subtle than that.

Had one of my fevers while I was in the office....I was sweating so bad that I soaked the paper on the exam table and had it all stuck to me and couldn't get up. The doc helped me get up and peel all the paper off the backs of my legs (I was wearing shorts). How embarrassing.

We decided that since I was there, I should have the blood sugar and cholesterol checked as well as the thyroid. My last blood sugar check was a year ago and borderline for diabetes. When the cholesterol was checked two years ago, the good cholesterol was a bit too low, but at least the bad was back down to normal.

She said she wished she could do more for me. I'm hearing that a lot lately. Sigh.

Pain level: 7
Fatigue level: 9

Sunday, July 25, 2004

What a dream.... 

Last night, I dreamed that there was a worldwide plague. Some sort of flu that was 99.99 percent communicable was killing people by the millions. If you had it, all you had to do was touch someone, and usually they would get it too. Everyone that got it died.

As with every illness, there will always be someone that is immune. Dan and I hadn't gotten sick yet. We lived in some coastal city, and one day we were walking on a pier that had a bar and a restaurant on it. We were making jokes to sort of diffuse the gravity of the situation around us. I saw some posters on the wall of the bar of a local football team and a local cheerleading squad. I told Dan that if I died, he could have the cheerleading squad to himself, and that if he died, I could have the football team to myself. We chuckled a bit and kept walking.

Time passed (in the dream), and a second strain of the flu broke out. This time Dan got it, so we knew he would die soon. We went back to the pier we had visited before, which was now deserted. Dan was riding a bicycle slowly, and I was walking, being careful not to touch Dan because I knew it would be fatal. The poster of the football team was still on the wall. I thought of what I'd said before, that I could have the team to myself, and realized I didn't WANT any of them, I wanted Dan.

Dan had stopped riding and was waiting to see where I would go next. I walked toward him, and he began to back up for fear I would touch him. I reached out and grabbed his shoulder, and I could see the panic in his eyes as he knew I had just written my own death sentence. Then I kissed him and he looked at me wondering if I knew what I was doing. Then he realized I knew exactly what I was doing, and kissed me back.

We stood there for a long time, kissing each other into eternity. Wherever we were going, we would go together.

Then I woke up.

Friday, July 23, 2004

Rave of the Day for July 23: 

Honoring a state where it does rain a lot, sent to me by someone who lives in the Slurpee capitol of the world (Ducky)....

Instructions for living in Texas
1. Just because you can drive on snow and ice does not mean we can. Stay home the two days of the year it snows.
2. If you do run your car into a ditch, don't panic. Four men in the cab of a four-wheel drive with a 12-pack of beer and a tow chain will be along shortly. Don't try to help them. Just stay out of their way. This is what they live for.
3. Don't be surprised to find movie rentals & bait in the same store.
4. Remember: "Ya'll" is singular. "All y'all" is plural. "All y'all's" is plural possessive.
5. If you are yelling at the person driving 15 mph in a 55 mph zone, directly in the middle of the road, remember, a lot of folks learned to drive on a vehicle known as John Deere, and this is the proper speed and lane position for that vehicle.
6. Get used to the phrase "It's not the heat, it's the humidity". And the collateral phrase "You call this hot? Wait'll August."
7. Don't tell us how you did it up there. Nobody from Texas really cares.
8. If you think it's too hot, don't worry. It'll cool down - in December.
9. We do TOO have 4 Seasons: December, January, February, and Summer!
10. A Mercedes-Benz is not a status symbol. A Ford F-150 is.
11. If someone tells you "Don't worry, those peppers aren't hot" you can be certain they are.
12. If you fail to heed my warning in #11 above, be sure to have a bowl of guacamole handy. Water won't do it.
13. If someone says they're "fixin" to do something, that doesn't mean anything's broken.
14. If you don't understand our passion for college and high school football just keep your mouth shut.
15. The value of a parking space is not determined by the distance to the door, but the availability of shade.
16. BBQ is a food group. It does NOT mean grilling burgers and hot dogs outdoors.
17. No matter what you've seen on TV, line dancing is not a popular weekend pastime.
18. "Tea" = Sweet Iced Tea. There is no other kind.

Flash flood, day 2.... 

Ok, the hail and flooding at my house yesterday finally subsided (and melted) last night. Today was a new day..

Had to go downtown (20 miles away) to pick up my MRIs so I can give them to my neurologist next week. When I got on the highway, I noticed a suspicious-looking black cloud to the northwest and vaguely wondered if I was gonna experience a repeat of yesterday. I decided it was unlikely to have that happen two days in a row.

The rain began as I pulled up to the imaging place. I had to be careful to keep the scans dry as I took them back to my car. As I pulled out of the lot, the drops got bigger, and I had the feeling I was really gonna be in for it.

Sure enough, when I got onto the highway, I was slammed with torrents of rain and a huge crosswind. Even with the wipers on high, I could not see a thing. I stayed in the middle lane because I knew the outer lanes were prone to flooding.

Within minutes, the shoulders of the highway were crammed with vehicles that had pulled over.....every single one of them was an SUV. I stayed in my little car, following slowly behind the little car ahead of me. Sometimes we would have to come to a complete stop because there simply was no visibilty.

I have anti-lock brakes and traction control....both were put to the test as even the center lanes of the highway flooded. I plodded slowly along, thinking that surely the rain would let up any minute. We simply don't get much rain in my area.

An HOUR later, I floated up to my house to the safety of my garage. My hands and right foot ached from my efforts to control the car when it was hydroplaning. But I'm safe and dry, and that's all that matters.

So for the second day in a row, my back yard is under water. What a weird sight considering my city is on water rationing for a drought. The dog doesn't quite know what to make of it either.

Pain level: 8
Fatigue level: 9

Thursday, July 22, 2004

Rave of the Day for July 22: 

Have been inundated with political ads lately. To tell the truth, I don't much like ANY of my choices right now....I don't feel any of them can accurately represent me. Such is the woe of the independent person. Luckily, I am not alone in feeling this way. Here's a very nice blog entry by Doug Thompson:

I'm an American

Hail of a day.... 

Looked outside this afternoon to see if I should wear shorts or pants to my vestibular rehab appointment. Saw a huge, swirling black cloud to the west. Turned on the TV...one of the stations said there was a storm brewing but that it was not severe.

Put on jeans and a t-shirt as the rain began outside. It was pelting the house so hard I kept peeking through the blinds to make sure it wasn't really hailing. So much for not severe.

When I got downstairs, I opened the front door in time to see the first hailstones, pea-sized (I have a heavy storm door I can peer through). Checked the TV again...this time they said there was a flash flood watch. No kidding....there was already a river flowing through my front yard.

The hail got bigger than marble but luckily not golf-ball size. By then, the wind was blowing so hard that the hail was crossing the porch and piling up against the front door. I told Dan I was getting the camera.

I waited for the wind to shift directions and the hail to stop before I stepped onto the porch. The first two pix I took from the safety of the porch while it was still raining. The rest I took as the rain tapered off.

Wouldn't you know, the tornado sirens went off AFTER the sun had come out? And the tornado warning was issued after the sirens had stopped. By then, all the excitement was over at my house.

As soon as the tornado warning was over, I downloaded my pix and sent three of them to the TV station that had been so slow issuing the weather warnings. I don't know if they'll use them or not, but I thought it was fun.

I also put the pix on a web page. It looks a bit like Christmas in July:

Hail 2004

Pain level: 7
Fatigue level: 8

Wednesday, July 21, 2004

Rave of the Day for July 21: 

Since I'm feeling so dysfunctional lately, I thought I'd throw in this funny. It's greeting cards for dysfunctional people....

1. I always wanted to have someone to hold, someone to love.  And now that you've come into my life.......  (Inside card) - I've changed my mind.

2. I must admit, you brought religion into my life........
(Inside card) -  I never believed in Hell until I met you.

3. As the days go by, I think how lucky I am....
(Inside card) -  That you're not here to ruin it for me.

4. Congratulations on your promotion. Before you go....
(Inside card) - Will you take the knife from my back?  You'll probably need it again.

5. Someday I hope to marry...
(Inside card) - Someone other than you.

6. Happy Birthday!  You look great for your age....
(Inside card) - Almost lifelike!

7. When we were together, you said you'd die for me...
(Inside card! ) - Now we've broken up, I think it's time to keep your promise.

8. We've been friends for a very long time...
(Inside card) - What do you say we stop?

9. I'm so miserable without you...
(Inside card) - It's almost like you're still here.

10. Congratulations on your new bundle of joy....
(Inside card) - Did you ever find out who the father was?

11. You are such a good friend. If we were on a sinking ship and there was only one life jacket...
(Inside card) - I'd miss you terribly and think of you often.

12. Your friends and I wanted to do something special for your birthday....
(Inside card) - So we're having you put to sleep.

13. Happy Birthday, Uncle Dad!
(Available only in certain southern states)

14. Looking back over the years we've been together, I can't help but wonder...
(Inside card) - What the hell was I thinking?

15. Congratulations on your wedding day...
(Inside card) - Too bad no one likes your wife!

I have an idea.... 

...this is gonna sound weird, but I'm desperate. For the rest of my leave of absence, I've decided not to fight the exhaustion anymore, no matter how inconvenient it gets. Whenever the sledgehammer of fatigue hits me, I'll just go lie down as soon as possible. If I go to sleep right away, fine. If I don't fall asleep within ten minutes, I'll get up and try again in a few hours if I am still tired. I know this will mess up my nighttime sleep routine, but I'm not gonna worry about it since I'm not working anyway.

I was trying to figure out how exactly I got better six years ago when I had these same neurological symptoms. Then I remembered that I slept an inordinate amount of time because I simply could not function with a constant migraine. After awhile, the symptoms seemed to burn themselves out, or maybe I was able to sleep them off. So I'm going to try to do that again. I have to do SOMETHING to get better by August 2nd.

So I may be sleeping a few hours at a time several times a day if that's what my body tells me to do. I'll just make sure I keep all doc appointments and do my usual amount of exercise. I don't see how I would end up feeling any worse.

I've made an appointment with my primary care doc on Monday to get my thyroid checked, just in case it's contributing to the fatigue (which I doubt). The neurologist appointment is on Tuesday, and I'm not looking forward to hearing again how normal I am. Yeah, this is some normal life I lead.

I suppose if letting the fatigue dictate my life doesn't help, I will have to go back on the damned prednisone. There is no other way I'll be able to work otherwise. I've got to figure out a way to keep working if I don't have sufficient evidence of disability.

I wonder how many people my age wrestle with issues like these? I should be more concerned with saving money for retirement than with saving my energy just to get through a shift. I feel like I'm just fading away from the real world, like a puff of smoke.

Pain level: 6
Fatigue level: 8

Tuesday, July 20, 2004

I've finally flipped out... 

Cried myself to sleep. Didn't help. Woke up three hours later with foot and leg cramps, so I had to get back up.

I know I seriously need to see a shrink because all I can think about is pulling the covers over my head and never coming out again. But my Long Term Disability policy does not cover mental illness, and that would be the last thing I need, for them to interpret a visit for counseling as me having a mental illness rather than a physical one.

I just can't handle the idea of 40 more years of my life riddled with symptoms that are not provable or measurable. It is beyond embarrassing. I don't invent stuttering for my own amusement.

I so want to cancel the neurologist appointment next week. I can't bear the notion of going in there and listening to her tell me that there is no reason for the motor skill, cognitive or speech problems. I feel like the world's biggest hypochondriac.

And what shall I tell the rest of the world? I seriously regret telling anyone about the MRIs since now I have to admit I didn't need them. My co-workers already doubt that I am sick....this will just reinforce it for them.

So I shall return to work August 2nd, shamed yet still sick. I would like to pretend none of this ever happened. But, dammit, I AM actually sick, even if I can't prove it.

How the hell can I file for disabilty when I finally collapse a year from now, or maybe six months from now? I wouldn't even believe me. Saying you're tired and in pain just doesn't cut it with Social Security.

Where is the proof? The stufff that is measurable isn't really disabling. Gastroparesis does keep me running to the restroom at inconvenient times, and for sometimes up to half an hour, but it could easily be argued that I can still work.

Is a positive lip biopsy and an elevated C-reactive protein level enough? I do have measurable neuropathy, but it is mild....I'm not sure if the EMG would be sufficient evidence. Maybe.

The edema is a visible thing, but no one even knows why I have it. Sjogren's is so freakin' frustrating, causing such diverse symptoms that even the experts just shake their heads. I wonder if a biopsy for vasculitis would reveal anything.

And then there's the hearing loss, a symptom so rare in Sjogren's it might as well not be happening. The tinnitus is so loud that the only time I can't hear it is when I'm at a live rock concert. But how do you prove ringing in your ear?

Lack of rest I guess could be demonstrated with the sleep study I had four years ago. But the sleep apnea it showed has since been remedied....I don't know if the lack of Stage 4 would be sufficient to prove I can't get restorative rest. Does Social Security even consider this a disabling problem?

And then the pain. A completely subjective symptom. I tune it out fairly well, but if people only knew how many times I've awakened in tears because of it.....

And there's the host of things too insignificant or embarrassing to bore the doctors with. Like the fevers I'm getting practically daily now (I have sweat rolling down me as I type this, and goose bumps at the same time), the bodywide itching, the hair loss. Or the fact that I can't have a physical relationship with my husband because of severe internal dryness.

I know this crap is real...what's frustrating is that it's only real to me, my husband and a few loyal friends. Many docs have admitted I look exhausted, but how do you measure that to anyone's satisfaction? So many strangers saw me limping around yesterday and would look at my perfectly normal-looking legs and shake their heads.

I really must be mentally disturbed if I'm actually finding myself envious of people with measurable problems. Do I really want bulging discs, bone spurs, or brain lesions? Well, no....but I envy the fact that they have many fewer doubters in their lives.

I know, I'm not supposed to give a rat's patootie what others think....but if I can't actually prove I'm too sick to work, it's my livlihood that's screwed more than my self-esteem. Although my self-esteem IS taking a horrible beating right now. I in fact feel a great deal less than worthless.

So now I'm back to those same basic issues I battled six years ago: am I just a wimp, not trying hard enough? How can I be a useful human being when I can't even get through a shift at my incredibly easy job? What purpose does this illness serve if I can't help myself, much less anyone else?

I don't feel like I can burden anyone else with this. I've done enough moping and explaining. I want something to change, either getting healthy enough to work or finding irrefutable proof of just how sick I am.

I'm trying not to be mad at my creator because I know that's a tremendous waste of energy. There must be a very good reason for all of this. I know life isn't fair, but how do you avoid being pissed about it?

I'm not going to fall for the convenient trap that I don't react well to stress. Everyone with fibromyalgia gets that as a blanket explanation for why they got sick, and it's crap. I'm upset about being sick, not the other way around.

Well, now typing all of this has completely worn me out again, and my muscles are still twitching from the last nap. I guess I'll plop my useless butt back on the couch. Hell hath no fury like a woman with an invisible chronic illness.

MRIs normal.... 

You'd think I'd be happy about this. But now I have no explanation at all for the speech disturbance, hand and leg weakness and loss of motor control. I'm back at the "are you sure you're not imagining it?" phase.

This is exactly what happened six years ago. Never found evidence of what could be causing the symtpoms, so they sent me to a shrink. I'll just do what I did then....ignore it and hope it goes away eventually.

I've wasted a whole month off work for nothing. I don't feel a bit better for the time off, so why did I bother? I might as well be earning money if I'm going to feel like shit for no reason.

I'm going back to bed, and I'm going to stay there.

Rave of the Day for July 19: 

Can I ever relate to this joke! Thanks to SilverWing for sending it to me....

An older couple is lying in bed one morning, having just awakened from a good night's sleep. He takes her hand and she responds, "Don't touch me."

"Why not?" he asks.

She answers back, "Because I'm dead."

The husband says, "What are you talking about? We're both lying here in bed together and talking to one another."

She says, "No, I'm definitely dead."

He insists, "You're not dead. What in the world makes you think you're dead?"

"Because I woke up this morning and nothing hurts."

Lonnnnng day.... 

Didn't get much sleep last night due to pain in my hands, shoulders and back. Wouldn't you know I finally drifted off just as the alarm went off.

The MRIs were tolerable, I guess. Had trouble getting on the table and lined up...my motor skills are so weird sometimes. This was a closed unit where they put that catcher's mitt-type thing over your face...I'm just grateful that I'm about 50 pounds smaller than the last time I had one done, so I fit in the tube better.

I remembered to take a Skelaxin and a Valium about two hours before the procedure. This helped immensely. I still hurt quite a bit, but it was easier to lie still, even with a slight facial tic going on.

I actually didn't get a break between scans...they wanted me to keep my head in the exact same place for the entire series. They just pulled me out of the tube for a moment to give me the contrast injection. It was soooo hard to stay still then....I had tears going down my face.

The whole thing from beginning to end lasted about an hour and a half. Afterward I could not lift my knees so they could remove the pillow they'd placed there. I thought I was never gonna get off that table....I looked like the Tin Man from the Wizard of Oz.

We went to lunch after that. Was disappointed to find out that the new restaurant wasn't open yet, so Dan took me to Whole Foods because they list all the ingredients in each deli item. I had honey pepper salmon, fresh pineapple, and a gingseng ginger soda and ate them at the tables they have in the front of the store.

We drove up to the mountains right on time but didn't know there was construction going on. We got caught in a huge traffic jam (no alternative exits on mountain roads) and then a flash flood. We got to the hot springs a half hour late.

We'd originally reserved an outdoor tub, but there was still lightning going on outside, so we asked to switch to an indoor one. Luckily there was one left. We reserved it for an hour.

The water was plenty warm....105 degrees. It felt pretty good to me, but I think it was too warm for Dan because he got dizzy. If we had been outdoors where it was cooler it might have been better.

It was very relaxing though. So nice to have my hands quit aching, and I was able to bend my knees much better afterward. Something about the mineral content of the water really seems to agree with me.

Decided to stop about halfway home at Dairy Queen. I had a small plain cup of soft serve....it's gluten free! First time I'd had Dairy Queen in a few years.

Felt really good after that....good thing Dan was driving, because I fell asleep in the car! Was able to stay up only about a half hour after we got home. Fell into bed and slept for three hours.

I've been up for an hour and a half, and the headache and fatigue are returning, but at least I felt decent for a little while. Had some gluten-free waffles with peanut butter on them. I'll probably return to bed at my usual time and see if I can sleep some more.

Pain level: 6
Fatigue level: 7

Monday, July 19, 2004

Bonus Rave of the Day for July 18: 

It's back! The next in a series of movie re-enactments with bunnies! This time, "Alien" gets the nod. Thanks to Robert for the link....

Alien in 30 seconds with bunnies

MRIs Monday morning.... 

At least one of them is with contrast....that's my least favorite part of the procedure as I have a phobia of needles. Hope I won't have any twitches tomorrow.

Afterward, my hubby and I will go to a nearby restaurant for lunch. This is the place that caters to customers with food allergies. They have gluten-free bread there, so I might get to have my first sandwich in nine months.

Dan volunteered to take tomorrow night off work so we can drive to the mountains and rent a hot springs jacuzzi for the rest of the afternoon and then watch movies at home. Do I have the world's most awesome hubby or what?

Feeling weak and head-achey tonight. Hope they find a brain tomorrow!

Sunday, July 18, 2004

Rave of the Day for July 18: 

Speaking of clubs, got this from Ducky and found it hilarious! Enjoy....

Let's Go Clubbing

Are you ready for the Following Clubs?

The Yoko Club? Oh no
The German philosophy club?  I. Kant.

The Ford-Nixon club?  Pardon me?

The Alzheimer's club?  Forget it.

The Ebert movie club?  Roger.

The Groucho Marx club?  You bet your life.

The Peter Pan club?  Never. Never.

The Japanese theater club?  Noh.

The quarterback club?  I'll pass.

The Rhett Butler club?  Frankly, I don't give a...

The compulsive rhymers club? Okey-dokey.

The Spanish optometrists club? Si.

The pregnancy club? Conceivably.

The Procrastinator's Club? Maybe, next week...

The Self Esteem Builders? They wouldn't accept me, anyway.

The Agoraphobics Society? Only if they meet at my house.

The Co-Dependence Club? Can I bring a friend?

The Prayer Group? Lord willing!

Got my giggles in..... 

Went downtown to the comedy club last night. Headache started during the drive there, and I was walking soooo slowly that there was some concern about me getting across the intersection while the light was still green. But I made it.

This was the first time in several years I had gone to the last show of the night (the previous two were sold out). We were in a line that went all the way to the corner. By the time we were seated an HOUR later, my feet were little stuffed sausages in my shoes.

Even the late show had sold out, so I felt like I was on the inside of a sardine can. We were in the fourth row, luckily, so at least I was close enough to hear the comedians. But the seats were so close together that I could not straighten out my legs in front of me.

The opening act was the same guy that emcees every Saturday night. He had new material, which was hilarious. Most of it was stuff only a local would appreciate.

The second guy up was Keith Robinson. I hadn't heard of him before, but I have a feeling that he'll be on TV someday. He was very good.

The headliner was Wanda Sykes. It was her first visit to my city, and I think she enjoyed it as much as we did. She kept ad-libbing on the audience even though it wasn't part of her act.

I think this one of the best shows I have seen at this club. Wanda was adding things on to her routine as she went along because she was on a roll. There were times she was laughing almost as hard as we were.

She ran about 30 minutes over her scheduled time because she was having so much fun. I actually laughed until I had tears in my eyes. My sides are a little sore today, but that's ok.

I will probably go back to the comedy club at least one more time this year if I can afford it. There are so few social activities left open to me (like eating out at most places, concerts, etc.) that I'm very reluctant to give it up. Besides, one good evening of laughter does more to lift my spirits than a whole month of meds.

Pain level: 7
Fatigue level: 8

Friday, July 16, 2004

Rave of the Day for July 16: 

At least my friends can always make me smile. Here's a funny from my evil genius twin, I mean Ducky...

A farmer lived on a quiet rural highway. But, as time went by, the traffic slowly built up at an alarming rate. The traffic was so heavy and so fast that his chickens were being run over at a rate of three to six a day. So one day he called the sheriff's office and said, "You've got to do something about all of these people driving so fast and killing all of my chickens."

"What do you want me to do?" asked the sheriff.

"I don't care, just do something about those drivers." So the next day he had the county go out and put up a sign that said:


Three days later the farmer called the sheriff and said, "You've got to do something about these drivers. The 'school crossing' sign seems to make them go faster." So, again, the sheriff sends out the county and they put up a new sign:


And that really sped them up. So the farmer called and called and called everyday for three weeks. Finally, he asked the sheriff, "Your signs are doing no good. Is it all right for me to put up my own damned sign?"

The sheriff told him, "Hell, yes, put up your own sign." He was going to let the farmer do just about anything in order to have him stop calling. Well, the sheriff got no more calls from the farmer.

Three weeks after the farmers last call, the sheriff decided to call him. "How's the problem with those drivers. Did you put up your sign?"

"Oh, hell yes. And not one chicken has been killed since then. I've got to go. I'm very busy." And he hung up the phone. The sheriff thought to himself, "I'd better go to that farmer's house and look at that sign... There might be something there that WE could use to slow down drivers..."

So the sheriff drove out to the farmer's house, and he saw the sign. It was a whole sheet of plywood. And written in large yellow letters were the words:


Feeling icky.... 

Guess I had too much excitement yesterday. Had gone to a Sjogren's support group meeting about disability. It went really well, and I learned a lot.

But in order to have the car to go to the meeting, I had to drop off and pick up my hubby from work. All the driving woke up the neuropathy. And sitting for an hour and a half for a meeting is always difficult. By bedtime last night, I was wiped out beyond description.

Could not get out of bed today until 1:30pm, but I don't feel any more rested now than I did before I went to bed. Have a migraine and a rotten case of the achies. The worst part, though, is that I'm very discouraged.

I'm already halfway through my leave of absence. I do feel some better at home, but ONLY if I don't exert myself in any way. That's not very practical. I'm finding even simple things like stretches to be tiring. I suspect it will be a monumental task to return to work on August 2nd. Sigh.

I hate being so fragile that even a simple meeting knocks me on my tuckus. I have tickets for a comedy club tomorrow night (I bought them quite some time ago, before the latest neurological symptoms kicked in), and I AM going no matter what. I NEED to laugh and get my mind off feeling awful, even if for a few moments.

I think I'm done whining now. I feel a bit like a deflated balloon.

Pain level: 9
Fatigue level: 10

Interesting Sjogren's/disability meeting.... 

Went to my local Sjogren's support group meeting tonight. The topic was filing for disability, and the speaker was a local disability lawyer. Learned a few things.

One is that my state no longer requires the reconsideration phase! This is awesome because if you are turned down on your initial application, you go straight to requesting a hearing if you want to continue. This cuts MONTHS out of the process!

Also, it appears the average processing time for the initial application and the hearing in my state has shortened since I helped my mom apply seven years ago. This is a huge relief. Applications are being processed in as little as 90 days, the wait time for a hearing is about six months, and the time from hearing to award notice (when approved) averages four months. That's a little over a year all told, about half as long as it used to take.

Bad news: my age would likely work against me. I'm only 40. The lawyer said that someone over 55 with the same illness would be more likely to approved than someone who should be at the peak of their career age-wise. I was the youngest person at the meeting tonight....most were closer to retirement age. Sjogren's mostly hits women over 50. I guess I can see that Social Security would be more likely to accept someone that they would have to pay fewer years.

The lawyer said that while something like fibro, Sjogren's or celiac disease may not in and of itself be considered disabling, having all three at once (or some other combo of ailments) might be sufficient to fit the definition of disability, depending on the severity of symptoms.

The lawyer also said that people with invisible chronic illness are less likely to be approved at the application phase because at that point they are looking for concrete test results such as bloodwork, MRIs, biopsies, etc. Pain and fatigue cannot be measured that way and so aren't considered. At the hearing level, though, the judge will be placing more weight on doctor's written testimony, so if your doc says your pain and fatigue are disabling, the judge must consider it.

I'm glad I went.

Gotta go pick up my hubby from work.

Pain level: 7
Fatigue level: 7

Wednesday, July 14, 2004

Rave of the Day for July 14: 

While this is all in good fun, it's not for the faint of heart. A very pointed personality assessment, and, in my case, eerily accurate. My assessment is listed after the link. During the early '90's, when I worked in radio, the overnight talk show host at the station said I was the only hippie he ever met who was BORN during the '60's. And while I'd rather not 'fess up to the bad temper, 'tis true.

Thanks to Robert for a very intriguing quiz....

Jenny Turpish Slapped Me: Quizzes - Better Personality

Wackiness: 50/100
Rationality: 44/100
Constructiveness: 58/100
Leadership: 50/100

You are an SECF--Sober Emotional Constructive Follower. This makes you a hippie. You are passionate about your causes and steadfast in your commitments. Once you've made up your mind, no one can convince you otherwise. Your politics are left-leaning, and your lifestyle choices decidedly temperate and chaste.

You do tremendous work when focused, but usually you operate somewhat distracted. You blow hot and cold, and while you normally endeavor on the side of goodness and truth, you have a massive mean streak which is not to be taken lightly. You don't get mad, you get even.

Please don't get even with this web site.

Tuesday, July 13, 2004

Rave of the Day for July 13: 

These are clever. Ducky gets the nod.....

A few suggestions for corporate mergers:

- PolyGram Records, Warner Bros., and Keebler, to be called Poly-Warner-Cracker
- Yahoo and Netscape-to be called Net'nYahoo
- 3M and Good year, to be called MMM-Good
- Knotts Berry Farm and National Organization for Women-to be called Knott NOW
- Federal Express and UPS, to be called FED UP
- Xerox and Wurlitzer: They're going to make reproductive organs.
- Fairchild Electronics and Honeywell Computers: New company will be called Fairwell Honeychild.
- John Deere & Abitibi-Price: Deere Abi
- Honeywell, Imasco, and Home Oil: Honey, I'm Home
- Denison Mines, Alliance, and Metal Mining: Mine, All Mine
- 3M, J.C. Penney, Metropolitan Opera Company: 3 Penney Opera
- Grey Poupon & Dockers Pants: Poupon Pants
- Zippo Manufacturing, Audi, Dofasco, Dakota Mining: Zip Audi Do-Da
- Hale Business Systems, Mary Kay Cosmetics, Fuller Brush, and W.R. Grace Company merge to become Hale Mary Fuller Grace.

MRIs on Monday... 

Finally was able to get the derned things scheduled for Monday the 19th at 11am...insurance approval was submitted July 1st. Seems like progress on medical stuff always slows to a crawl in the summer...maybe it's because so many people go on vacation.

Anyway, I am to have two scans: one of the brain, and one of the neck. They are looking for a cause for my speech impairment, cognitive dysfunction and motor skills problems. The thinking is that my problems are being caused by Sjogren's. Sometimes an MRI will reveal UBOs (unidentified bright objects) in Sjogren's patients. If the scans are normal, the neurologist will decide if any further tests are warranted. The total time allotted for these scans is two hours (I was promised a break between scans to stretch).

Right now I'm making copies of my leave of absence paperwork. My employer has nearly as much red tape as the federal government. Seven pages to return to HR tomorrow, plus copies of two pay stubs.

Feeling pretty crummy today. I stayed in bed this morning, trying to sleep off a post-migraine "hangover", and instead was rewarded with another derned headache! Rats.

Pain level: 8
Fatigue level: 9

Monday, July 12, 2004

Bonus Rave of the Day for July 12: 

What are your fave movies? The New York Times has a list of the 1000 best. I think I'd like to get the book from which they derived the list. I was pleasantly surprised how many of these I had either seen or at least heard of, especially the foreign ones. I'd need a spare lifetime to see them all, though. Sigh.

1000 Best Movies of All Time

Oh, and thanks to Robert for e-mailing me the link.

I'm a burgundy babe.... 

The saga of the defunct satellite receiver is now drawing to a close. Stupid thing croaked a week and a half ago. Dan thought he'd be able to get a replacement at Wally World, but no such luck....not there or any of the local electronics stores. Ordering one through the dish company was gonna run us $100 plus shipping and handling, and I hardly ever watch the silly thing. Dan finally decided today to just get a regular antenna and have the dish service switched off tomorrow. This is a big step for him, going from 117 channels to 7. But it will save us over $50 a month.

Have a confession to make. I've been working nights for 9 years, so I have no idea what's on network TV. Since I was elevating my swollen feet on the couch tonight, I took a peek at something called "Designer Showdown" or something like that. I guess it's reality TV?? Not very good, but way better in comparison to that episode of "Survivor" I saw a few years ago on vacation. I just don't get what's supposed to be enjoyable about people whining about one another behind each other's backs.

After the good-looking Italian guy won the prize on the show, I got out the hair color I bought last week. I learned something....it's actually harder in some ways to color short hair than long. When it was long, I'd just pile my hair on top of my head after applying the color and wait 20 minutes. But it's only about two inches long in back and lays right against my neck....nearly impossible to keep the dye from getting on my ears and neck. Dan was very helpful though, both a providing a damp towel to wipe off errant blotches of hair color and with helping me rinse it out for what seemed an eternity.

The verdict: it looks very good. I managed to make it look fairly professional even though it's designed to wash out in a month. And none of my little spills or drips were permanent...everything cleaned up just fine both in the bathroom and off my skin. But Dan has pronounced this to be too much of a pain in the....um....back... to do again. So next month I'll see if I can get a pro to do a shade I like for a reasonable price. For now and for a few weeks, though, I'm a burgundy babe.

My next project is trying to find a forklift to get my dead butt outta this chair.

Pain level: 9
Fatigue level: 9

Rave of the Day for July 12: 

This is one of my all-time faves! E-mailed to me by, who else, a retired English professor! Actually, I was his student in college. Thanks goes to Dean Bevan for this gem....

Are You a Literature Abuser?

Take this test and find out! How many of these apply to you?

- I have read fiction when I was depressed, or to cheer myself up.
- I have gone on reading binges of an entire book or more in a day.
- I read rapidly, often 'gulping' chapters.
- I have sometimes read early in the morning or before work.
- I have hidden books in different places to sneak a chapter without being seen.

- Sometimes I avoid friends or family obligations in order to read novels.
- Sometimes I re-write film or television dialog as the characters speak.
- I am unable to enjoy myself with others unless there is a book nearby.
- At a party, I will often slip off unnoticed to read.
- Reading has made me seek haunts and companions which I would otherwise avoid.
- I have neglected personal hygiene or household chores until I have finished a novel.
- I have spent money meant for necessities on books instead.
- I have attempted to check out more library books than permitted.
- Most of my friends are heavy fiction readers.
- I have sometimes passed out from a night of heavy reading.
- I have suffered 'blackouts' or memory loss from a bout of reading.
- I have wept, become angry or irrational because of something I read.
- I have sometimes wished I did not read so much.
- Sometimes I think my reading is out of control.

If you answered 'yes' to four or more of these questions, you may be a literature abuser. Affirmative responses to seven or more indicates a serious problem.

Once a relatively rare disorder, Literature Abuse, or LA, has risen to new levels due to the accessibility of higher education and increased college enrollment since the end of the Second World War. The number of literature abusers is currently at record levels.

Social Costs Of Literary Abuse

Abusers become withdrawn, uninterested in society or normal relationships. They fantasize, creating alternative worlds to occupy, to the neglect of friends and family. In severe cases they develop bad posture from reading in awkward positions or carrying heavy book bags. In the worst instances, they become cranky reference librarians in small towns.

Excessive reading during pregnancy is perhaps the number one cause of moral deformity among the children of English professors, teachers of English and creative writing. Known as Fetal Fiction Syndrome, this disease also leaves its victims prone to a lifetime of nearsightedness, daydreaming and emotional instability.


Recent Harvard studies have established that heredity plays a considerable role in determining whether a person will become an abuser of literature. Most abusers have at least one parent who abused literature, often beginning at an early age and progressing into adulthood. Many spouses of an abuser become abusers themselves.

Other Predisposing Factors

Fathers or mothers who are English teachers, professors, or heavy fiction readers; parents who do not encourage children to play games, participate in healthy sports, or watch television in the evening.


Pre-marital screening and counseling, referral to adoption agencies in order to break the chain of abuse. English teachers in particular should seek partners active in other fields. Children should be encouraged to seek physical activity and to avoid isolation and morbid introspection.

Decline And Fall: The English Major

Within the sordid world of literature abuse, the lowest circle belongs to those sufferers who have thrown their lives and hopes away to study literature in our colleges. Parents should look for signs that their children are taking the wrong path -- don't expect your teenager to approach you and say, "I can't stop reading Spenser." By the time you visit her dorm room and find the secret stash of the Paris Review, it may already be too late.

What to do if you suspect your child is becoming an English major:

- Talk to your child in a loving way. Show your concern. Let her know you won't abandon her -- but that you aren't spending a hundred grand to put her through Stanford so she can clerk at Waldenbooks, either. But remember that she may not be able to make a decision without help; perhaps she has just finished Madame Bovary and is dying of arsenic poisoning.

- Face the issue: Tell her what you know, and how: "I found this book in your purse. How long has this been going on?" Ask the hard question -- Who is this Count Vronsky?

- Show her another way. Move the television set into her room. Introduce her to frat boys.

- Do what you have to do. Tear up her library card. Make her stop signing her letters as 'Emma.' Force her to take a math class, or minor in Spanish. Transfer her to a Florida college.

You may be dealing with a life-threatening problem if one or more of the following applies:

- She can tell you how and when Thomas Chatterton died.

- She names one or more of her cats after a Romantic poet.

- Next to her bed is a picture of: Lord Byron, Virginia Woolf, Faulkner or any scene from the Lake District.

Most important, remember, you are not alone. To seek help for yourself or someone you love, contact the nearest chapter of the American Literature Abuse Society, or look under ALAS in your telephone directory.

Good party, for awhile.... 

After waking up unusually early due to pain, I did some stretches and drank a Boost and felt somewhat decent. Our friend's retirement party was at 2pm on the other end of town (about 40 miles away). There were lots of people there we knew.

I took it easy, walking around slowly and talking to people, drinking iced tea and snacking on fresh fruit, a few veggies and shrimp. I made sure I sat occasionally so I would last longer. The people I most wanted to talk to were outside, but I tried not to spend too long outdoors as it was 97 degrees.

I did reasonably well until about 4pm, when I got engrossed in conversation and failed to notice I was getting overheated. I suddenly got very weak. The hostess must have noticed a change in my expression, because she asked me if I wanted to go inside and sit down (she has health problems too).

I sat for awhile and mostly listened to people talk while waiting for Dan to reappear (he was touring the house, I believe). While I was waiting, I began to get a migraine. Dan saw me and could tell it was time to go home. Good timing as my right leg was starting to go numb.

I've been spending so much time at home the past week that I thought this morning that I was getting better. It's just that I wasn't exerting myself at all. Going to that party made me realize that being off work is a very good idea right now. I actually thought I was going to faint there for awhile. A bit embarrassing.

Saturday, July 10, 2004

Rave of the Day for July 10: 

Believe it or not, I'm going to recommend some terrible movies to watch. There are four bad films included in the "Worst of Ed Wood" DVD collection: "Plan 9 from Outer Space", "Glen or Glenda", "Jailbait", and "Bride of the Monster". I watched all on four consecutive nights. The phrase "so bad it's good" applies here. "Plan 9" is so awful that it's actually quite funny...fake spaceships with visible strings holding them up, Ed Wood's chiropractor pretending to be Bela Lugosi, Vampira silently lurching around a cemetery, supposed aliens in silk pj's. I have to admit I liked "Glen or Glenda" the best in spite of dreadful nonsensical dream sequences. "Jailbait" is a poorly portrayed episode of "Dragnet", but it has the best plot of the four. "Bride of the Monster" gets the prize for least realistic attack scenes....apparently Mr. Wood couldn't afford a killer octopus that actually moved! The actors just flailed around as though they were being consumed while the octopus did nothing. I could not quit laughing! Bela Lugosi appears in three of the four films....two with speaking roles, and the last just a few silent shots that Wood built "Plan 9" around (Lugosi died before the screenplay was finished). I couldn't help giggling as Lugosi intoned, "Bevare! Bevare!" as an insane puppetmaster in "Glen or Glenda".

Also included is a two-hour documentary on Wood. Contains all sorts of interesting tidbits on his life, which was nearly as strange as his films. Haven't had this much fun watching bad movies since the '70's, which is really saying something.

Bad news about another uncle.... 

Two of Dan's uncles died in a little over a year apart. Tonight I got word that a third uncle, his Uncle Jim, had a heart attack on Monday. Luckily the damage was minor, more of a wakeup call than anything else, but one of Jim's arteries was 95 percent blocked. He had an angioplasty which apparently went well, and he was released from the hospital today.

I think Jim is going to take this seriously and do the necessary lifestyle changes so as to prevent a recurrence. These things are always scary, though. Dan will probably call his parents tomorrow to see if there is anymore news.

I guess even apparently healthy people shouldn't take their health for granted. I am very relieved it wasn't worse.

Pain level: 5
Fatigue level: 8

Thursday, July 08, 2004


Ok, I'm behaving myself. Did a strand test on the hair color I bought. It came out more burgundy than black, but I don't mind because it's really pretty. If my hair comes out looking that way all over I'll be very happy. I'm doing the allergy test too even though I color my hair all the time and have used this brand in the past. So far, so good.

I colored my own hair until 9 years ago when it got so long that one box of color wasn't enough. I had trouble at first when I tried to get it professionally done; I like vibrant color, and the stylists were always trying to tell me that I didn't really want that. Then I went to an expensive salon downtown. Voila! Exactly what I wanted, but it cost twice as much. Fortunately, do-it-yourself has come a long way. I would still never do blonde or light red at home because my hair is too dark, but the blacks, browns and dark wine shades work pretty well, at least they did 10 years ago.

Have been doing my software training online. Unfortunately, I have dialup, so it takes FOREVER to download a lesson, and the training site doesn't always register that I've completed a lesson until I've run it two or three times. I'm still going to do one lesson a day though.

Spent part of today filling out paperwork authorizing my leave of absence. I think the Social Security disability form is shorter. I apologized to the rheumy in advance because there are three forms just for him to fill out. I took it over to his office today, and I will pick it up when he's done. Then I have to get TWO supervisors to sign it. By the time I'm done getting everything filled out, it will be time for me to go back to work.

Called up the dish company because Dan didn't want to deal with them. I'm not sure why he thought I was a better choice to make the call. The tech I talked to wanted me to change some connections around, which would be fine except I cannot move the entertainment center to get behind it. So Dan will have to do it when he gets home from work. I have the feeling I'm going to be paying for a new receiver. I'd still rather take the dish down and play frisbee with it.

Hoping to get a call tomorrow about setting up these MRIs. It has been a week already.

Wednesday, July 07, 2004

Rave of the Day for July 7: 

In the mood for some puns? These are cute. Courtesy of the Duckster....

What Words REALLY Mean
ADULT: A person who has stopped growing at both ends and is now growing in the middle.
BEAUTY PARLOR: A place where women curl up and dye.
CANNIBAL: Someone who is fed up with people.
CHICKENS: The only animals you eat before they are born AND after they are dead.
COMMITTEE: A body that keeps minutes and wastes hours.
DUST: Mud with the juice squeezed out.
EGOTIST: Someone who is usually me-deep in conversation.
INFLATION: Cutting money in half without damaging the paper.
MOSQUITO: An insect that makes you like flies better.
RAISIN: Grape with a sunburn.
SECRET: Something you tell to one person at a time.
TOOTHACHE: The pain that drives you to extraction.
TOMORROW: One of the greatest labor saving devices of today.
YAWN: An honest opinion openly expressed.
WRINKLES: Something other people have. You have character lines.

Unexpected hug.... 

Went to aquacise this morning. One of the other people in the class noticed I'd cut my hair. I mentioned I had donated my hair to Locks of Love, and she smiled, but her eyes had tears in them. She said, "I had breast cancer a few years ago, and I remember what it was like to have no hair." Then she gave me a hug. She asked if I had anyone special in mind when I cut my hair, and I told her a little bit about Donna. Then we both had tears in our eyes. But they were the good kind of tears.

Pain level: 7
Fatigue level: 9

Tuesday, July 06, 2004

Bonus Rave of the Day for July 6: 

I can't remember whether I've posted this one before; even if I have, I think some of these may be new. Of course, none of them apply to me. Yeah, right. Straight from Ducky's Daily Grin....

You know it is time to reassess your relationship with your computer when....
1. You wake up at 4 O'clock in the morning to go to the bathroom and stop to check your email on the way back to bed.
2. You turn off your computer and get an awful empty feeling, as if you just pulled the plug on a loved one.
3. You decide to stay in college for an additional year or two, just for the free internet access.
4. You laugh at people without highspeed internet
5. You start using smileys :-) in your snail mail.
6. You find yourself typing "com" after every period when using a word processor.com
7. You can't correspond with your mother because she doesn't have a computer.
8. When your email box shows "no new messages" and you feel really depressed.
9. You don't know the gender of your three closest friends because they have nondescript screen name and you never bothered to ask.
10. You move into a new house and you decide to "Netscape" before you landscape.
11. Your family always knows where you are.
12. In real life conversations, you don't laugh, you just say "LOL, LOL".
13. After reading this message, you immediately forward it to a friend!

They're dishing it out, and I won't take it! 

Our satellite receiver croaked the day after my leave of absence started. Figures. We tried the usual read the manual, unplug it for awhile, etc. Couldn't get a hold of anyone because of the holiday weekend. Dan finally reached someone today, and they told him that our receiver is outdated and isn't compatible with the dish we upgraded TWO YEARS AGO! When we had the new dish installed, we were told the receiver was fine. Then they tried to tell us that to replace it, they would charge us $100 for a new receiver PLUS $75 for the service call! I don't think so! I've wanted to shut off the service ever since the dish company, formerly a GOOD company, merged with a mega corporation three years ago and became jerks. I rarely watch it anyway. Dan does, though, which is the only reason we have it. Cable here is even worse...crappy signal, rude employees, zero customer service AND fewer choices for the same money. We don't pick up the local stations very well because we're on the outskirts of town, but I suppose we could rig an antenna or something if Dan got really desperate. I think I'm ready to use the dish as a frisbee!

May have found a solution to me missing out on software training while I'm on leave. Some of our courses are online. I had Dan bring my textbook home with me, and I'll try logging on from the home computer. If it works, I'll at least have a third of my training done by the time I return to work, so I shouldn't be too far behind.

One good thing about being on leave is that I'll be able to attend this month's local Sjogren's support group meeting, which is on a weeknight next week. They're going to have a local disability lawyer talk with us, which is perfect timing for me. I plan to bring a long list of questions with me.

Rave of the Day for July 6: 

Slightly crude, but hysterically funny! Thanks to FarmGal for e-mailing me this: 

A nurse walks into a bank. Preparing to endorse a cheque, she  pulls a rectal thermometer out of her pocket and tries to write with it.
She looks up at the teller, pauses for a moment, then realizing her mistake, she says, "Well, that's great...just great...some asshole's got my pen."

Adventures of leadfoot..... 

I have a confession to make. I LOVE to drive fast on the highway (I obey the speed limit everywhere else). We have this new law that says you can't drive in the left lane unless you're passing, which is stupid because you're going to pass someone eventually. Also, most of our highways are down to two lanes due to construction, and some of the highways have left lane exits, so I don't see how they can tell what your intention was.

Anyway, there I am on the highway, driving home from getting an allergy shot. I'm listening to a brand new tape I made of recently downloaded songs (I think I was listening to "Always" by Saliva). And I'm driving in the left lane because the law just took effect this week and I had totally forgotten about it. By the time I saw the cop car, slowed down and changed lanes, it was too late. I knew I was busted. First time I had been pulled over in 13 years.

The cop was really nice though. He knows darned good and well that NO ONE drives the speed limit on that road. He said he clocked me at 74 (in a 55)...ouch. But he pulled my license and my record was clean, and just told me to drive a little closer to 55! Go figure. And he THANKED me for having my license, registration and insurance ready when he walked up to my car. Works for me.

I didn't feel unfairly singled out as I drove home, because I saw three more patrol cars pulling people over! I was careful to keep the speed under 60, even though I was getting passed by frail elderly people in ancient Cadillacs.

In other news, I'm still waiting for my insurance to authorize the MRIs. I think things got all bogged down because of the holiday weekend. I don't anticipate any problem getting approved because I haven't had an MRI in five years, and something might show up now that didn't show up then. Once I'm approved, I'll probably get in pretty fast. We have lots of excellent facilities in my area.

My migraine-type headache returned with a vengeance last night....this thing started up at the same time as the leg weakness and speech trouble a week and a half ago, and it comes and goes. Looking at the computer screen made me nauseous, so I went downstairs. Watching the TV bothered me some too, but not as bad as the computer. I couldn't go to bed as I had eaten recently (I have digestive problems), so I propped up on the couch and watched "Plan 9 From Outer Space" (yes, on purpose). Fell asleep on the couch and got a knot in my neck. Luckily, I was already scheduled for a massage this morning. The headache is still there, but more in the background now.

Bought some hair color today, black burgundy. It's supposed to be temporary (one month), but it does warn you if you go darker than your natural color it might not wash out. I'm willing to gamble. If this doesn't work out, I saw a hair painting kit that looked really cool...fuscia!

I think I've maxed on excitement for the day. In fact, a nap would not be uncalled for.

Pain level: 6
Fatigue level: 9

Monday, July 05, 2004

Rave of the Day for July 5: 

Haven't seen this one before, but it's hilarious! Thanks, Ducky!


Your Name:                                

Name of Spouse:

Address of home I will be assuming:

Square footage of home:

Total Sq. Ft. of human sleeping quarters
(referred hereinafter as "Servant's Quarters")
(Not to exceed 5% of home sq. footage):

My sleeping quarters will be (circle one):
- On a cat bed.
- On your bed. (referred hereinafter as 'my' bed)
- On the floor.
- On the furniture.
- On the stairs.
- In the garage.
- Anywhere I want.

No. of human children in my home:

No. of children who might pull my tail:

Previous cat experience (circle all that apply):
- I have recently owned one or more cats.
- I was recently owned by one or more cats.
- Fed a cat.
- Been slept on by a cat.
- Cleaned a litter box.
- Bathed a cat.
- Been scratched by a cat.
- Picked cat fur off my clothes.
- Picked cat fur out of my eyes.
- Accidentally ran over a cat.
- Allergic to cats.
- Chased cats out of yard.
- Cleaned up cat puke.
- Stepped in a hairball.

Any Canines in residence? (circle one):
- No
- No

Have you ever had a cat run away from this address in the last three years? If yes, please explain yourself:

Your Expected salary (circle one):
- $200 weekly
- $100 weekly
- Nothing, just the satisfaction of knowing you took me in.
- You pay me for living with you.

Location of litter box (circle one):
Laundry Room
Living Room
Dining Room
None (outside)

Cat will have outside privileges? (circle one):
- Yes
- Yes

Cat will be de-clawed? (circle one):
- No
- No

Servant names (List all dwellers of home, including yours):

Breakfast will be served not later than (circle one):

Dinner will be served (circle one -- careful, there is only one right answer):
- 5pm
- 6pm
- 7pm
- Upon demand.
- Eat what's left over from breakfast.

Menu (circle all that apply):
- Friskies
- Whiskas
- 9-Lives
- Meat Loaf
- BBQ Chicken
- Filet Mignon
- Tournados with Bearnaise
- Roti De Porc Poele
- Filet of Fish Poached in Wine Sauce
- Shoulder of Lamb
- Veal Prince Orloff
- Sauteed Scallops
- Salmon Pate

Desserts (circle all that apply):
- Pounce
- Twinkies
- Donuts
- Ice Cream
- Spongecake
- Strawberries in Bavarian Cream
- Caramel Almond Custard
- Chocolate Mousse
- Vanilla Sauce Souffle
- Upside Down Apple Tart
- Crepes with Orange Butter
- Three Butter Cream cake

List three references that I might contact (No dogs, please):

I am lucky.... 

I'm lying low and have hardly left the house since Thursday. Had to turn down a chance to go to a BBQ yesterday and watch fireworks. I don't feel any better for the extra rest yet. Normally that would be upsetting, except....

On Saturday, Dan and a co-worker went to play tennis. I was glad because I know Dan needs to spend time occasionally doing active things. When I go with him someplace he can't always be as active. After they played, they came back to the house, and we talked for awhile. Our co-worker's wife has MS, so he understands if I have trouble expressing myself and am not always the perfect hostess. He also could tell when I was getting too tired to chat.

Yesterday, since I couldn't go anywhere, we invited our friend over who lives next door. She has known me since before I got sick, and she doesn't get her feelings hurt if I can't go out to eat like we used to and sometimes can't even get off the couch. We watched a movie and talked. She also could tell when I was getting foggy and needed to make some supper. Most people aren't this perceptive.

I know many people lose friendships and other relationships when they develop a chronic illness. That's why I think I'm lucky, because most of my friends stuck around. There are always a few people who sort of wander into my life and drift back out again, but I don't really mind because that's normal for everyone.

A few good friends go a long way toward helping you feel like you still have a life no matter how sick you are. I wish everyone had them.

Pain level: 6
Fatigue level: 9

Sunday, July 04, 2004

Rave of the Day for July 4: 

I am very much in need of some humor. Luckily, it's Ducky to the rescue again. This is long but worth the read.....

101 Ways To Annoy People
1. Sing the Batman theme incessantly.
2. In the memo field of all your checks, write 'for sensual massage.'
3. Specify that your drive-through order is 'to go.'
4. Learn Morse code, and have conversations with friends in public consisting entirely of 'Beeeep Bip Bip Beeeep Bip...'
5. If you have a glass eye, tap on it occasionally with your pen while talking to others.
6. Amuse yourself for endless hours by hooking a camcorder to your TV and then pointing it at the screen.
7. Speak only in a 'robot' voice.
8. Push all the flat Lego pieces together tightly.
9. Start each meal by conspicuously licking all your food, and announce that this is so no one will 'swipe your grub.'
10. Leave the copy machine set to reduce 200%, extra dark, 17 inch paper, 99 copies.
11. Stomp on little plastic ketchup packets.
12. Sniffle incessantly.
13. Leave your turn signal on for fifty miles.
14. Name your dog 'Dog.'
15. Insist on keeping your car windshield wipers running in all weather conditions 'to keep them tuned up.'
16. Reply to everything someone says with 'that's what YOU think.'
17. Claim that you must always wear a bicycle helmet as part of your 'astronaut training.'
18. Declare your apartment an independent nation, and sue your neighbors upstairs for 'violating your airspace.'
19. Forget the punchline to a long joke, but assure the listener it was a 'real hoot.'
20. Follow a few paces behind someone, spraying everything they touch with a can of Lysol.
21. Practice making fax and modem noises.
22. Highlight irrelevant information in scientific papers and 'cc:' them to your boss.
23. Make beeping noises when a large person backs up.
24. Invent nonsense computer jargon in conversations, and see if people play along to avoid the appearance of ignorance.
25. Erect an elaborate network of ropes in your backyard, and tell the neighbors you are a 'spider person.'
26. Finish all your sentences with the words 'in accordance with prophesy.'
27. Wear a special hip holster for your remote control.
28. Do not add any inflection to the end of your sentences, producing awkward silences with the impression that you'll be saying more any moment.
29. Signal that a conversation is over by clamping your hands over your ears.
30. Disassemble your pen and 'accidentally' flip the ink cartridge across the room.
31. Give a play-by-play account of a person's every action in a nasal Howard Cosell voice.
32. Holler random numbers while someone is counting.
33. Adjust the tint on your TV so that all the people are green, and insist to others that you 'like it that way.'
34. Drum on every available surface.
35. Staple papers in the middle of the page.
36. Ask 1-800 operators for dates.
37. Produce a rental video consisting entirely of dire FBI copyright warnings.
38. Sew anti-theft detector strips into people's backpacks.
39. Hide dairy products in inaccessible places.
40. Write the surprise ending to a novel on its first page.
41. Set alarms for random times.
42. Order a side of pork rinds with your filet mignon.
43. Instead of Gallo, serve Night Train next Thanksgiving.
44. Publicly investigate just how slowly you can make a 'croaking' noise.
45. Honk and wave to strangers.
46. Dress only in clothes colored Hunter's Orange.
47. Change channels five minutes before the end of every show.
48. Tape pieces of 'Sweating to the Oldies' over climactic parts of rental movies.
49. Wear your pants backwards.
50. Decline to be seated at a restaurant, and simply eat their complimentary mints by the cash register.

51. Begin all your sentences with 'ooh la la!'
53. only type in lowercase.
54. dont use any punctuation either
55. Buy a large quantity of orange traffic cones and reroute whole streets.
56. Pay for your dinner with pennies.
57. Tie jingle bells to all your clothes.
58. Repeat everything someone says, as a question.
59. Write 'X - BURIED TREASURE' in random spots on all of someone's roadmaps.
60. Inform everyone you meet of your personal Kennedy assassination/UFO/ O.J. Simpson conspiracy theories.
61. Repeat the following conversation a dozen times: 'Do you hear that?' 'What?' 'Never mind, it's gone now.'
62. Light road flares on a birthday cake.
63. Wander around a restaurant, asking other diners for their parsley.
64. Leave tips in Bolivian currency.
65. Demand that everyone address you as 'Conquistador.'
66. At the laundromat, use one dryer for each of your socks.
67. When Christmas caroling, sing 'Jingle Bells, Batman smells' until physically restrained.
68. Wear a cape that says 'Magnificent One.'
69. As much as possible, skip rather than walk.
70. Stand over someone's shoulder, mumbling, as they read.
71. Pretend your computer's mouse is a CB radio, and talk to it.
72. Try playing the William Tell Overture by tapping on the bottom of your chin. When nearly done, announce 'no, wait, I messed it up,' and repeat.
73. Drive half a block.
74. Inform others that they exist only in your imagination.
75. Ask people what gender they are.
76. Lick the filling out of all the Oreos, and place the cookie parts back in the tray.
77. Cultivate a Norwegian accent. If Norwegian, affect a Southern drawl.
78. Routinely handcuff yourself to furniture, informing the curious that you don't want to fall off 'in case the big one comes.'
79. Deliberately hum songs that will remain lodged in co-workers' brains, such as 'Feliz Navidad,' the Archies' 'Sugar' or the Mr. Rogers theme song.
80. While making presentations, occasionally bob your head like a parakeet.
81. Lie obviously about trivial things such as the time of day.
82. Leave your Christmas lights up and lit until September.
83. Change your name to 'John Aaaaasmith' for the great glory of being first in the phone book. Claim it's a Hawaiian name, and demand that people pronounce each 'a.'
84. Sit in your front yard pointing a hair dryer at passing cars to see if they slow down.
85. Chew on pens that you've borrowed.
86. Wear a LOT of cologne.
87. Listen to 33rpm records at 45rpm speed, and claim the faster speed is necessary because of your 'superior mental processing.'
88. Sing along at the opera.
89. Mow your lawn with scissors.
90. At a golf tournament, chant 'swing-batabatabata-suhWING-batter!'

91. Ask the waitress for an extra seat for your 'imaginary friend.'
92. Go to a poetry recital and ask why each poem doesn't rhyme.
93. Ask your co-workers mysterious questions, and then scribble their answers in a notebook. Mutter something about 'psychological profiles.'
94. Stare at static on the TV and claim you can see a 'magic picture.'
95. Select the same song on the jukebox fifty times.
96. Never make eye contact.
97. Never break eye contact.
98. Construct elaborate 'crop circles' in your front lawn.
99. Construct your own pretend 'tricorder,' and 'scan' people with it, announcing the results.
100. Make appointments for the 31st of September.
101. Invite lots of people to other people's parties.


A couple of members of Fibrohugs inspired me by cutting their hair and donating it to charity. Today was my turn. I haven't had hair this short since I was 18 years old! Here are before and after pix:


Dan likes it. I'm surprised because neither of us could picture me with short hair. He did make me feel better about the whole thing by promising to help me color what's left.

Pain level: 8
Fatigue level: 9

Thursday, July 01, 2004

Leave of absence... 

Haven't posted (about myself) for awhile. I've become quite ill. Neurological symptoms I had six years ago have returned, including motor skill trouble, worsening of speech and cognition, weakness (especially in legs) and migraine-type headache. Neurologist is on vacation until end of July. Saw rheumatologist today...he ordered MRIs of the brain and spinal column in neck. The neurologist was probably going to do those anyway....we're just speeding up the process while I'm experiencing such strong symptoms.

My theory is that I'm experiencing some low-level inflammation in the brain or spinal column caused by Sjogren's. This illness can attack any part of the body, and while brain involvement is rare, it certainly does happen to some people. The fibro pain level is up, probably in response to all the bodily chaos.

I've tried my best to work, but these recent developments make it practically impossible. The rheumatologist is authorizing a leave of absence from my job at least until my neurologist appointment. If I am better by then, I'll go back to work the beginning of August. The timing is lousy because I'm supposed to be training on some new software, but I actually fell asleep during my first training session because I am soooo exhausted. Sigh.

Need to go back to bed.

Pain level: 8
Fatigue level: 9

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