Tuesday, May 31, 2005

Rave of the Day for May 31, 2005: 

I have another website to recommend. This one was created by a lady from the Netherlands named Ingeborg. She has severe M.E., and, according to an entry by her mom on the guest book, is at present completely bedridden. A detailed account of her life with chronic illness was written and translated into English earlier this year and is quite worth reading. I also enjoyed her stories about some of her healthier times. She has a beautiful website about her cats...I couldn't read it because it's in Dutch, but went through and marvelled at the artwork. It just astounds me sometimes how such intelligent and creative people must become so ill that they can no longer use their talents.

Borg of Space

Ingeborg also includes some useful tips and links for further information about M.E.

How Chip tried to do me in and other unpleasant adventures..... 

Didn't sleep well Sunday night, so I stayed in bed awhile yesterday to see if I could catch some more productive zzzzzs. Don't know if this was a good idea or not as when I woke up, my arms were numb from the elbow down. I get this from time to time, but usually it's either just one arm or it passes quickly. Not this time. I really felt odd. I had to ask Dan to help me out of bed.

Much to my surprise, when I tried to stand, my legs were also numb from the knee down. Not 100 percent numb....it was more like when you sit on your foot wrong and it goes to sleep. I could tell where my feet were, but they had the "just waking up" sensation throughout, which is pretty uncomfortable. I began to shuffle carefully toward the bathroom, and Dan went into the hall.

Chip saw me up and about and ran toward me. I think his new anti-inflammatory must be helping him feel better, because he came at me like a freight train. Usually, he stops in front of me and sits so I'll pet him, but this time, he head butted me! Bounced his thick skull right off my pubic bone! OMG! I started to fall backward and caught the chest of drawers and hung onto it for dear life. I was overcome with weakness and dizziness and was certain I was going to faint. I waited for the feeling to pass and when it didn't completely, I staggered over to the bed and collapsed there for I don't know how long.

Eventually, Dan noticed I hadn't taken a shower and came over and helped me up again. He volunteered to drive me to the cemetery, which was a good thing because I didn't trust my arms or legs very much. They stayed sort of tingly the whole time I was getting ready to go.

I promised Dan I wouldn't take very long at the cemetery. It turned out to be really easy to keep that promise because the weather was poopy. With the rain and wind, the temperature was probably only 40 degrees. I had a very hard time negotiating the uneven grass on unreliable legs to get to my mom's plot. By this time, the tingling areas were coming and going at random alternating with brief intense pain. Reminded me of a light bulb shorting out. Plus I felt weak.

Then we went to a nearby book store. I like these because they have chairs. I was able to pick up something that interested me, have a seat and then wait for Dan to finish looking at the magazines.

On the way home, we got some chili from Wendy's. It's one of the few gluten-free, non-fried items available at a fast food restaurant. And it tastes great.

Dan had to work the holiday, and since my arms and legs were still acting weird, I decided to stay off the computer and just watch movies on the couch. I saw "The English Patient" (long but good once it finally gets going), "Monster" (fascinating), and "Mean Girls" (I LOVE this one!). While the movies were playing, I sorted through some scrapbooks.

Had my alarm set for 11am today, but I could not get out of bed until noon. The arms and legs were normal again, but Dan offered to drive me to get my mammogram today, and I accepted because I'm still feeling weak. The test was uneventful except for my chest being sore afterward. Had a nice chat with the technician about Sjogren's.

Needed to go to the post office to get some extra postage for an oversized package and a roll of stamps. When we got there, though, the line was HUGE! I was going to have to stand around for at least an hour. I asked Dan to take me to another one. This one also had a long line, but it moved quickly, and I only had to stand about 15 minutes. One the way back to the car, I inadvertantly stepped in some gum. Ewwwwww! Got it on both shoes, the car and my pant leg. WHY do people have to spit their gum on the street?? I'm sooooo grossed out by that.

Left a message with the rheumatologist's office asking for a prescription for a new anti-inflammatory. I suggested Mobic but will of course go with whatever the doc recommends. I probably won't hear anything back until at least Thursday.

I've developed burning pain from my elbows down while typing this, and my feet are getting a bit tingly again. I'm not gonna bother to tell a doc unless it gets very bad or lasts more than 24 hours without change. I've gone through all the tests for this, and the only thing the docs were able to figure out to do for it last year was high dose prednisone, which works, but is too risky to use for anything except emergencies. Such is my life.

Monday, May 30, 2005

Quiet rainy Sunday..... 

Woke up with my neck spasms gone, thank goodness. They did start up again a few hours ago, but not as bad as yesterday, so I just took a muscle relaxant and figure I'll be rid of the spasms completely tomorrow.

Did take it really easy today. Was gonna do some yard work, but it started to rain and has been doing so off and on all day. Dan and I were thinking about going to a movie, but Dan kept changing his mind and finally decided against it. So I read all the way through the Sunday paper with the TV on.

The season finale of "Desperate Housewives" was rerun last night, so I watched it because I missed it last week. Then the pilot aired tonight, and I watched that. Now I see why it's so popular....a lot of things make a lot more sense if you catch the show at the beginning. On Wednesday, they're gonna rerun the first episode of "Lost", and I'll see what that's all about since I heard it was good.

I also did something I haven't done in many years: I checked the TV guide for the week to plan what I want to see. There's a new show starting on Thursday called "Hit Me Baby One More Time", where old '80's bands see if they can make a comeback. Looks like it has the potential to either suck or be mildly entertaining, so I'll give it a shot. And at some point there's supposed to be a show about smart kids competing for a full ride scholarship at the college of their choice. I'm always in favor of people being rewarded for having brains, so I may take a look. Don't know when it airs, though.

Don't have any big plans tomorrow since Dan has to work. I'll go to the cemetery for awhile, and then maybe I'll work on some scrapbooking since I've had a pile of albums and pix sitting in the living room for a year and a half now. Bought some really cool vintage Hawaii stickers at the craft store the other day, so maybe that will motivate me. I've been really pushing myself to get the Social Security stuff done, but I figure even I deserve a break.

Saturday, May 28, 2005

Why I don't need to watch gory horror movies.... 

Had a really gross dream last night. In it, I was in a hospital someplace waiting to either have a test or surgery. I think all the beds were taken....I was sitting in a wheelchair instead.

The doctor arrived and said she would have to do a very extensive injection. She put this enormous needle into the side of my left index finger, which was excruciating. The needle traveled up the hand, up the arm, down my side and into my hip, where it filled the entire hip cavity. The pain was huge, beyond description.

Suddenly, I realized I needed to go to the bathroom. I started to get up, and the doc yelled to stay seated. Too late! I began hemmorhaging, spouting blood everywhere. I nearly slid out of the wheelchair, slipping in all the blood. I noticed pieces of internal organs on the floor and thought they were kind of interesting until I realized they had come out of me.

I awoke in horrific pain, all along my left side just like in my dream. Turns out I'd been sleeping in one spot too long....I am unable to roll over in my sleep. And what woke me up was that I really did need to pee. It took me quite some time to make it to the bathroom because my left side was stiff and screaming in agony.

I'm pretty sure my brain thought up the hospital setting because I'd spent so much time before bed trying to remember dates and details of all the significant procedures I've had done since I got sick. Need to get all this in writing in case I apply for Social Security. What's scary is my imagination dreams up stuff far more horrible than would ever happen to me in real life.

Icky poo yuck.

Rave of the Day for May 28, 2005: 

Remember my discovery of the Not Done Living website? On it, I found a link to another site to living with severe Myalgic Encephalomyelitus (M.E.), known in the US as CFIDS. Please, if you care anything about chronic illness, take the time to read this woman's description of a typical day. It will move you to tears, and even though I am nowhere near as ill as she, trust me, she does not exaggerate.

She also has a GREAT page on daily living tips, especially for those who are bedridden. And she has gathered an amazing amount of very reputable documentation on M.E. from diverse sources. Most sites I've visited on CFIDS repeat the same vague stuff dispensed by the US government that make this illness sound benign and temporary. I thought I was well-educated, but I learned quite a lot about my own fibromyalgia just reading descriptions of many of the symptoms my doctors have ignored. Did you know there are scientific names for various types of cognitive dysfunction? That some people actually DIE of M.E.? That there are recorded OUTBREAKS of this?

A Hummingbird's Guide to M.E.

If nothing else, if you are healthy, this website will help you better appreciate your mobility and freedom from exhaustion.

Close call... 

Dan was taking me to pick up a prescription. We were going through a busy intersection with a green light. A car coming from the other direction pulled into the left turn lane and slowed down as if waiting for us to go through (he didn't have a turn arrow or anything).

But then this car DIDN'T stop, instead speeding up and heading right for our driver's side door! Dan had to slam on the brakes, and I'm amazed we weren't hit. The ignoramus in the other car had the audacity to looked ticked at US.

Aside from being rather startling, stopping short like that caused me to involuntarily jerk my neck at a funny angle. Nothing really awful, but I felt a twinge right away. While we were in the pharmacy, I started getting spasms in the left side of my neck, in the front.

When we got home, I put ice on my neck. While I was doing this, the back of the neck started twitching too. Now, an hour and a half later, my left arm and rib cage are joining in.

Good ol' fibro....one tiny neck spasm turns into a circus. I think I'll take a Skelaxin and see if I can't get things to calm down. And more ice in another half hour or so.

If I behave myself tonight and take it easy, I'll probably feel fine tomorrow. But it's very aggravating to be so fragile. Imagine if we'd actually been hit?

On the positive side of things, I got a GREAT deal while doing a little shopping today before the near-miss. I found a pair of jeans and a pair of shorts both on sale, and I had a $10 off coupon, so the final cost including tax was less than the regular price of either item. I like this store because the women's department is right by the exit door, so very little walking involved.

And the weather today was GORGEOUS! Lots of irises in bloom, and our lilacs still have a few blossoms left. Spring is rare here....we usually go right from snow to summer.

Have made some real progress on gathering info in case I have to apply for Social Security. I won't know until at least July whether I'll be returning to work, but if I don't end up going back, I want to have everything ready to apply right away. I've already been off work since February, so I'd be eligible for benefits starting in August.

I got an adorable birth announcement today featuring a photo of my latest niece. When I get the chance, maybe I'll scan it and some pix of my year-old niece as well.

Thursday, May 26, 2005

What healthy people need to know.... 

Sometimes you never know where the internet will take you. I was perusing my copy of "The Fibromyalgia Advocate" a few days ago and decided it would be cool to send the other people in my chronic illness support group a copy of something I found in the book: a letter explaining to the healthy world what they need to know about how it is to be disabled by illness. There was a website listed after the letter, and, after a Google search or two, I found not only the author of that letter, but a great website as well.

Not Done Living was created by Ricky Buchanan. She lives in Australia and has a severe case of what we here in the US call chronic fatigue immune deficiency syndrome (CFIDS). She continues to journal and add to her site despite being bedridden much of the time. She does a great job educating as well as entertaining. I've been reading her impressive collection of quotes and have visited the sites of a few of her friends who also have CFIDS. If ever you wonder just how extensively this ailment can debilitate you, just read their descriptions of a typical day for them. I feel relatively unaffected by fibromyalgia in comparison.

Here is a link to the letter:

An Open Letter to Those Without Invisible Disability or Chronic Illness

Please also take a little time to check out some of the other pages on the site. I love reading personal websites and wish I could dedicate more time to it. There are some very talented people whom we would never otherwise know had they not created a site.

I am listing Ricky's site in my permanent links column (upper right of this page). Enjoy.

Wednesday, May 25, 2005

Rave of the Day for May 25, 2005: 

As promised....

Subject: Mammogram story

I actually kept my mammogram appointment. I was met with, "Hi, I'm Belinda!" This perky clipboard carrier smiled from ear to ear, tilted her head to one side and crooned, "All I need you to do is step into this room here, strip to the waist, then slip on this gown. Everything clear?"

I'm thinking, "Belinda ... try decaf. This ain't rocket science." Belinda skipped away to prepare the chamber of horrors. 

Call me crazy, but I suspect a man invented this machine. It takes a  perfectly healthy cup size of 36-B to a size 38-LONG in less than 60  seconds. Also, girls aren't made of sugar and spice and everything nice...it's  Spandex. We can be stretched, pulled and twisted over a cold 4-inch piece of  square glass and still pop back into shape.

With the right side finished, Belinda flipped me (literally) to the left and said, "Hmm mm. Can you stand on your tippy toes and lean in a tad so we can get everything?

Fine, I answered. I was freezing, bruised and out of air, so why not use the remaining circulation in my legs and neck and finish me off? My body was in a holding pattern that defied gravity (with my other boob wedged between those two 4" pieces of square glass) when we heard, then felt, a zap!

Complete darkness and the power went off!

"What?" I yelled.

"Oh, maintenance is working. Bet they hit a snag." Belinda headed for the  door.

"Excuse me! You're not leaving me in this vise alone, are you?" I shouted.

Belinda kept going and said, "Oh, you fussy puppy...the door's wide open so you'll have the emergency hall lights. I'll be right back." 

Before I could shout, NOOOO!" she disappeared. And that's exactly how  Bubba and Earl, maintenance men extraordinaire, found me, half-naked and part of me dangling from the Jaws of Life and the other part smashed between glass! After exchanging  polite  "Hi, how's it going" type greetings, Bubba (or possibly Earl) asked, to my utter disbelief, if I knew the power was off.

Trying to disguise my hysteria I replied with as much calmness as possible.

"Uh, yes...yes I did, thanks." 

"You bet, take care," Bubba replied and waved good-bye as though I'd been standing in the line at the grocery store.

Two hours later, Belinda breezes in wearing a sheepish grin and making no attempt to suppress her amusement, she said, "Oh I am soooo sorry! The power came back on and I totally forgot about you! And silly me, I went to lunch. Are we upset?"

"And that, Your Honor, is exactly how her head ended up between the clamps."

Chip hip update..... 

Chip, the world's most spoiled English springer spaniel, is having a tough time right now. He has severe hip dysplasia, bone spurs and arthritis. He was having trouble getting up recently, so we tried a new anti-inflammatory to see if it would help more than the old one. Not only did he get better, the past few days, he's been WORSE. So we called the vet yesterday. The vet wants us to try one more anti-inflammatory. If this one doesn't help, the next step would be injections, which are a bit pricey but probably more effective. I'm guessing they're similar to cortisone shots for people with arthritis?? I just hope he's not in a lot of pain.....he hasn't been crying or anything, but the only time he has done that was when his hip seized up and he couldn't move at all. Part of me wonders if he's just slowing down because of his age? But he's only seven. I really hate the thought of him suffering for any reason.

Speaking of anti-inflammatories, I should call my rheumatologist's office tomorrow and ask if I can try a new med. I am using up the last few Lodine in the bottle, and I honestly can say there's very little pain reduction going on. I'm going to suggest switching to Mobic or Celebrex....they're the only two I haven't tried that I think might help.

Got my half hour of yard work in this afternoon. It was nice and comfortable outside, about 60 degrees, so I was able to work in the sunny areas of the yard. I wish I could stay out there longer and actually get something significant accomplished instead of having to go out there repeatedly and only pull a few weeds each time. There were lots of robins and sparrows visiting today....maybe they were looking for worms because it rained last night? Or maybe they'd heard how funny Chip looks when he's rolling in the grass on his back and decided to see for themselves. My tiny lilac bushes smell sooooooo good....wish the blossoms would last forever.

Have some copies of my new alarm documents to send to my homeowner's insurance company, and then I'll be all caught up with that. I like being able to set and disarm the alarm from any part of the house as well as having a "panic button" in case of emergency.

Called my podiatrist's billing department....they were the ones who sent my account to a collection agency. They claim that they sent me a bill in January 2004 that was never paid, and that they sent me susequent notices that were ignored. I know better....I would NEVER ignore a bill, and I know I NEVER got notices about an unpaid debt! But if I don't pay the collection agency, it will be reflected in my credit rating, and that's the last thing I need to have happen. So I'll pay the damned thing even though I think that billing office screwed up. Chaps my hide, it does.

Did the responsible middle-aged woman thing and made an appointment to get my mammies grammed on Tuesday. Reminds me of a hilarious e-mail I got on that topic that I should dig up and post. And that reminds me: I've sort of gotten out of the habit of doing Raves of the Day. I've just been too out of it to post more than one blog entry per day. I think I'll maybe try for Raves a couple of days a week?

Been slowly compiling my info for Social Security. Have been debating with myself just how far back in my medical history I should go and how many doctors and tests to list. The further back I go, the more irrelevant stuff will be available to Social Security along with the relevant stuff. But if I only go back to when I was diagnosed with the Sjogren's, I might not provide enough evidence of the fibromyalgia since that was diagnosed three years prior to the Sjogren's. Now I understand where a lawyer would come in handy, but most won't let you hire them until AFTER you've applied and been rejected. Nerve wracking.

Saw the big $2 million tournament on "Jeopardy" today. Ken Jennings got beaten! Ack! My hero has been overthrown! He was a very good sport about it, though, and still won half a milion for coming in second. Oooh, what I could do with $500,000.....

Tuesday, May 24, 2005

Upside, downside..... 

Well, the good news is that my increased pain level last night was mostly from sitting too long at the movie after working in the yard. I have increased aching in my hands and feet today, but not a great deal more pain than usual. This is even after an aquacise class and 30 minutes of puling weeds today. The bad news is that probably means the Lodine wasn't doing squat for me as this is my second day without an anti-inflammatory. I'm gonna give it a few more days to make sure and then call the rheumatologist's office and ask if I can try someting else, like Celebrex or maybe Mobic. I definitely need better control over this arthritis if possible.

It was actually really pleasant being in the back yard today. Our lilac bushes are in bloom, and they smell great! There are still a few monarch butterflies coming to visit. And Chip loves rolling around in the grass when I'm out there.....he looks silly and happy on his back with all four feet in the air. I'm making slow progress getting the weeds out of the gravel areas....after I clear out a section, I spray it with vinegar to discourage the weeds from coming back. I won't use chemical sprays in the back yard because Chip spends so much time out there. I think it's time to get the captain's chairs out of the garage and read a few chapters on the patio.

I only got one of my phone calls made today, but I'm pretty sure I've gotten the medical insurance to cover the diabetes classes. I just have to make sure I call the hospital tomorrow to tell them that the claims are being resubmitted.

Fell asleep on the couch for over an hour again tonight. I had my feet propped up, so it kept the edema down. Unfortunately, a short amount of time on the computer undid that just now. We've had about a week of unseasonably hot weather, and my feet are really swelling up. Right now the toes on the left foot are numb, and the top of the foot hurts from the skin getting stretched.

Need to take care of some paperwork regarding the security system. Need to inform the old service provider that I'm cancelling, let the permit office know I switched providers, fill out the warranty info, and tell my insurance agent that I upgraded my security system.

The longer I am gone from work, the harder it is for me to imagine how I'm going to manage going back. How is it that I got anything done while working 36 hours a week?

I'll ponder this while I go feed Chip.

Monday, May 23, 2005

The good, the bad, and the ouchie.... 

Went to my make-up aquacise class Friday morning. Didn't think a third class in the same week would be noticeably more tiring, but it was. Did help with those muscle spasms I'd been getting in my mid-back, though.

Tried to do the edging in the front yard Friday afternoon but was having a hard time. Dan saw me struggling and offered to do it himself on the weekend. I agreed to let him and instead sprayed weed killer on the cracks in the driveway.

Watched the Muppets' version of "Wizard of Oz" Friday night. It was pretty hilarious. Ashanti played Dorothy, Queen Latifah was Aunt Em, David Alan Grier was Uncle Henry, Kermit was Scarecrow, Gonzo was the Tin Thing, Fozzi Bear was the Cowardly Lion, and Miss Piggy was all four witches. My favorite part was where they cut away from the action so Quentin Tarantino can pitch a fight scene to Kermit.

Yesterday, I skipped the yard work because I didn't want to overdo it. Actually went shopping with Dan for a little bit; I decided to make it a priority to buy bras since I was still wearing the same ones from when I was 40 pounds heavier, and they were so stretched out that I'd gotten a rash from the straps sliding around. Dan was nice enough to drop me off near the front door of the two stores we went to so I could save a bit of energy for being in the store. It took forever to find a style that fit, and there were only three left in my size at the first store, which is why I had to go to a second store for three more. I also saw some nice dresses on sale near the entrance; I tried on a few looking for something to wear to my sister's wedding, but none of them fit. I guess I don't have the figure for a cute summer dress, but I don't want to wear anything that looks like it belongs on the mother of the bride either.

Well, that little expedition knocked the wind out of me, so we stopped at Qdoba (California style Mexican food) for supper before heading home. We got our security system at the house upgraded, which took a lot longer than I was anticipating, but I think I'll like the new version a lot better. It has remote operation so I won't have to go to the panel to arm or disarm it, and if I have an emergency, I won't have to get to the phone as the monitoring company will be able to hear me directly from the panel no matter where I am in the house. It can't be disabled by someone cutting the phone line outside, either. The main reasons I did the upgrade are that it adds to the value of the house should we have to sell it, and it will give us a bigger discount on our homeowner's insurance.

By the time the installation was done, I was pretty much toast mentally, so I zoned on the couch and watched SNL. Lindsey Lohan was ok, I guess. Mostly I was interested in seeing Coldplay. They did two songs off their upcoming album, and both were pretty good. Unfortunately, the current cast is really hit or miss with the skits.....it's almost guaranteed that anything featuring Horatio Sanz is going to suck. But Tina Fey and Amy Poehler on Weekend Update are really good, so all is not lost.

Today I tried a little more yardwork after my 20 minutes on the Gazelle machine. It was hotter than an oven outside, so I tried to just pull weeds in the back yard in the shade. When I did venture into the sunny area, I got sweat in my eyes and started feeling light headed, so I had to come in.

I was almost out of my thyroid medication, so I went and picked up a refill this afternoon. Dan and a friend and I had decided we wanted to see "Star Wars" later tonight, so while we were out in the afternoon, we went ahead and bought the tickets. Turned out we needn't have worried....there were lots of people in the theatre, but it was by no means sold out, I think because we were there while the season finales of "Extreme Makeover: Home Edition" and "Desperate Housewives" were airing.

Ok, about Episode III: it erased the bad taste I had in my mouth from parts 1 and 2. Did it measure up to the original (Part 4)? Of course not. The 1977 release had humor that none of the other "Star Wars" movies ever matched. And of course none of them contained great acting.....I knew better to expect that from Episode III. But I must say I enjoyed most of the visuals, particularly the fully CG Yoda. I liked the quad light sabers wielded by Grievous and the gyroscope-type vehicle he tried to escape in. I liked the lightning effects in the battles with the chancellor. And Anakin actually does enough villainous deeds to fully deserve what happens to him. I was satisfied.

One bummer about tonight: I'm off my anti-inflammatory per doc's orders, and I HURT. The joint stiffness is not worse, which surprised me, but pain with movement is up a bit, and pain at rest is WAY up. Now, it could be because I did yard work and then sat at a long movie, but I suspect the elevated pain level may continue as long as I'm off the Lodine. Hope not. I'm going to aquacise tomorrow, so I'll probably get a better idea then whether the med was helping very much.

Next week is probably one of the quietest weeks I've had since I went on leave from work.....I only have one medical appointment. I need to catch up on some business on the phone (scheduling some routine checkups, resolving some insurance boo boos, disputing something that has gone to collection when I never received a single bill on it), so I should finally have time for these things. And get some Social Security research done.

I ache soooo much in my joints right now, so much that I'm afraid it will interfere with sleep. Only one way to tell for sure, I guess. Goodnight.

Thursday, May 19, 2005

Reviews and chit chat.... 

Yay! My May book review has been posted on But You Don't Look Sick. Here's the link:
Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know

Today after I had a blood draw to check my thyroid levels, I went to the book store and picked up Montel Williams' autobiography detailing his life with MS. I will probably review it next month if I get it read in time.

Had another setback within minutes after typing my last blog entry. Apparently sometimes even half an hour of yardwork is too much. I think I'd been reaching too far forward to avoid having to move the mat repeatedly (I was sitting). While I was still in my computer chair, I started getting wicked spasms in my back where some muscles attach to the ribs. By bedtime, my lower back joined the chorus. I got very little sleep that night, which didn't help matters. I'm not much better right now physically. But my mood is still better because I got the review done and have returned to gathering info for Social Security. I still don't know for sure if I'll be filing, but I want to be prepared in case I do.

Watched the finale of "Revelations" last night. What a letdown. The scientist gets his son back, so he's going back to his normal life, while the nun will keep looking for the Christ child and the Antichrist child. And the Satanic murderer may or may not be dead. This is the way the world ends: not with a bang, but a whimper.

Got a phone call from the rheumatologist's assistant today. They want me to stop my anti-inflammatory for a few days to see if my stomach feels better. I'm gonna wait until the weekend to do it because I'm going to an aquacise class tomorrow to make up for one that was cancelled a few weeks ago. I guess this will be one way to find out if the Lodine is even helping me.

Believe it or not, the weather is actually warm enough today to require the use of ceiling fans....83 degrees! Tomorrow, it is supposed to be a record 92! I have set the air conditioning to kick in if it reaches 84 in the house. I may tweak that if I find it too uncomfortably warm. Chip has already taken to laying on the hardwood floor to keep cool.

Speaking of Chip, his arthritis is getting worse. His activity level has gone way down, and he doesn't want to come when called because it hurts him to get up sometimes. We started him on a new anti-inflammatory today. If this doesn't help, the only options left are narcotic pain relievers and/or surgery to fix his hip dysplasia. Poor pup.

Awesome news to report about my eyes....this afternoon, they suddenly had NO feelings of dryness at all! I don't have to blink several times in order to see clearly, first time in several years. I believe the Restasis eye drops are starting to work. I will be starting to taper off the steroid drops in another week or so, and I hope I won't ever need them again. My eyes actually feel NORMAL right now! Yayyyyyyy!

I don't have anything in particular planned for the weekend, so I will probably try SMALL amounts of yardwork. I am trying to clear out the dead grass and leaves that have accumulated around the edges of the font yard. I probably should have acquired an edger while I had the money. I did get some weed killer I'm going to spray in the cracks of the driveway to keep that tidy. I want to maintain some "curb appeal" on the house in case we end up needing to sell. Once I get caught up on the Social Security stuff I will start decluttering closets, cabinets, shelves, etc. to make it easier to keep the inside tidy too.

That's all the news that's fit to print tonight.

Wednesday, May 18, 2005

The day I've been waiting for..... 

FINALLY, after a solid month of maximum pain and/or fatigue, I got a break today. I didn't do anything differently than usual, slept the same amount of hours, etc., but I woke up feeling slightly more rested. And after I got a massage this afternoon, my TMJ, neck and hamstring pain all decreased some. And the fibrofog even lifted a bit. Whew!!

Took advantage of the improvement tonight and wrote a book review for But You Don't Look Sick. This is the latest in the month I've ever submitted anything, so it may not show up on the website until the end of the month. I'm relieved I could finally put one thought in front of another and come up with a coherent review.

I also did a little yard work, being careful to sit on my mat while pulling weeds and coming inside after half an hour even though I had a lot more work left to do. I injured my hamstrings last Saturday by trying to pull weeds from a standing position. I did that because I can't kneel or squat down without severe pain, and I was in too much of a hurry to sit that day. I'm trying to get the yard looking presentable in case Dan finds a job in another town and we suddenly need to put the house on the market. I'm going to work on some interior spring cleaning as well if I can find the energy.

One good thing that I did on Saturday was go see "Kingdom of Heaven". Aside from the obvious benefit of watching Orlando Bloom for two and a half hours, I found the plot intriguing. Bloom plays a widowed European blacksmith who travels to Jerusalem during the Crusades of 1095 to follow in his father's footsteps. His father was a reknowned knight. What he finds there causes more spiritual questions than answers. He is willing to honor the wishes of the king, but he cannot endorse the righteousness of Christian domination. He will defend his people when they are under attack, but he can't morally justify slaughtering Muslims for religious reasons alone. This is one of the few movies I've seen to address the quagmire of holy war, a stiuation virtually unchanged for the past 1000 years. The best moment of the film was when one of the king's advisors says, "I thought we were fighting for God, but we were fighting for wealth and land". The more things change, the more they stay the same. My only complaint was that some of the battle scenes had portions that were artificially sped-up, which made me dizzy.

I've got a confession to make: I'm turning into a tv junkie. It sort of snuck up on me during the three months I've been off work. I've always watched "Jeopardy" and "Millionaire" in the afternoons, but it has progressed to leaving the television on during Oprah, then sometimes the news (I admit I tend to fall asleep during this), then "Wheel of Fortune", and THEN sometimes even something after that. At first, the only prime time show I watched was "Extreme Makeover Home Edition" Then I caught the beginning episode of "The Bachelor" one night when I was too tired to leave the couch. I wasn't interested until they showed this down-to-earth delivery nurse as one of the contestants. I predicted she wouldn't make it past the first show and vowed to stop watching when she was thrown off. Well, wouldn't you know she was the contestant who won? Oh, and I've been watching "Revelations" on Wednesday nights because I've been able to catch that from the beginning. And don't forget "Desperate Housewives"! It took several weeks for me to decide to watch it all the way through, but I think I'm hooked now. I haven't watched this much tv on a regular basis since I was in high school. Yikes.

I'll probably try to see "Star Wars III: Revenge of the Sith" in a few weeks when the crowds have died down unless I can entice Dan to go see it with me sooner. I must admit I've gotten caught up in wanting to find out how this saga wraps up. I'm having trouble imagining a credible transition from Anakin Skywalker to Darth Vader.

Past my bedtime.

Tuesday, May 17, 2005

Disappointed in myself.... 

My health seems to be sliding downhill no matter what I do. I'd hoped that by going on short term leave from work, I'd gain some energy if I got consistent and adequate rest. I've been off three and a half months and in fact am more exhausted now than I was in February.

Not only that, my mobility is declining. I'd hoped once the warmer temperatures of spring took over that I'd have an easier time getting around. That has turned out not to be the case, especially now that I can no longer take Bextra for my arthritis and the med I replaced it with is ineffective.

Today, my husband dropped me off at the massage therapist's and told me he was going to a mall a few blocks away. I got inside and found out that I had been booked on the wrong day and would have to re-schedule. Dan was already gone, but I could see the mall from where I was and figured I'd just walk over and find him instead of waiting an hour for him to return.

I got about a block from the massage therapist's when I realized that my stiff knees, hips and ankles simply wouldn't carry me the rest of the way. I was so weary that I felt as though I might collapse on the spot, so I turned around and limped back to the massage therapist's office while I still could. I was dizzy and out of breath when I got back.

I was soooo embarrassed to admit I couldn't walk just a few blocks. I mean, I still have decent flexibility in my limbs, but ONLY when I'm not putting weight on them. My rheumy is absolutely perplexed at how I continue to weaken when I show no measurable signs of inflammation.

I thought that pushing myself to work full time was the main culprit, but now I see that I can decline even when I'm treating myself well. My diet is good, and believe it or not, I do non-impact exercise even though it exhausts me because if I don't, I'll lose my flexibility too. I'm so overwhelmed that I feel as though I'm drowning in illness.

Dan's gonna be home any minute, and I'm embarrassed that I didn't have the energy tonight to tidy up my own supper dishes. I did nothing except sit in front of the TV and clip some coupons. This is not what I call quality of life.

What do you do when taking care of yourself becomes more than a full time job? I thought I'd have all kinds of time to offer online support and other useful things when I wasn't working. Instead, I still feel like I'm doing too much, even when I'm doing nothing.

I do have some positive stuff to report, but I've worn myself out now with this long-winded whine, so it will have to wait.


Wednesday, May 11, 2005


As I mentioned yesterday, I had a root canal and prep for a crown done. I don't know if I swallowed some blood during the procedure, but I've been unable to keep any food down since then. A few weeks ago, I had to go off Bextra, and the med I was given to replace it can cause gastric troubles, so that may be the culprit.

All I know is if I'm not better by tomorrow, I'm seeing a doctor. My husband is concerned about me and came home from work early so he can keep an eye on me.

I am going downstairs to try eating some cream of rice. I hope to God I don't hurl again.

Insert swear word here..... 

Ok, I thought I was just going in for a crown today. Well, that root canal needed more work. A lot more. And then prep for the crown. I don't even get the real crown for another three weeks. Grrrrrrrr.

Since this is my first tooth to need this type of work, it's all pretty new to me, so I'll try to explain the significance of major dental work in someone with multiple chronic ailments affecting her muscles, joints and mouth. I experience pain if I yawn too widely, if I sleep with my head at an improper angle (such as falling asleep on the couch), if laugh too long at the comedy club. Sometimes this pain will persist for days on end. This is PRIOR to anyone messing with my teeth. Sjogren's syndrome causes lesions in my mouth on practically a daily basis. If a corn chip grazes the inside of my cheek, it will become raw and develop sores before the day is out. And heaven forbid I should burn my tongue. Sometimes if I'm very sick, these sores last for multiple days or even weeks and require steroid paste to make them heal. Again, this is normal for me PRIOR to dental work. So when I have someone's hands in my mouth in an uncomfortable dental chair for hours on end, all hell breaks loose.

The first offense is the novacaine, not so much the pain of the injection, although it DOES hurt like a son of a bitch. It's the chemical reaction my body has immediately afterward. I shake violently from head to toe, my heart rate goes up a bit, and I feel as though I will faint. That, I believe, is my body reacting to whacked out norepinephrine levels. Fortunately, my current dentist is smart enough to know that I am NOT having an anxiety attack (my previous dentist refused to work on me because he thought that's what was happening), that this is a physical reaction that occurs EVERY time I receive novacaine. She knows that if I sit and read for a bit, I will go back to normal in a few minutes. That's fine, but the exhaustion I feel afterward is overwhelming and I can't think my way out of a paper bag, so I have learned not to have any procedures done without someone to drive me home afterward.

Then there is the pain from just sitting in the chair. I think it's having pressure on my neck from being tilted at an odd angle that is the real culprit, but I get extreme headaches even from short checkups. The longer procedures are worse because I stiffen up from immobility. The current dentist is careful to allow me breaks to rest my jaw and get up and stretch when practical. I try to focus on relaxation as much as possible during the procedure as muscle tension heightens the problem.

Believe it or not, as much as I like to talk, I actually have a small mouth. Not a lot of room for two sets of adult hands holding various implements. And the tooth that needed the root canal is naturally in the back, so they ain't kidding when they say "open wide". And I found out today that I have unusually deep roots, so they were drilling practically all the way to China.

So right now, the inside of my mouth feels like raw hamburger, every muscle from the shoulders up is twitchy, and my jaw is so stiff that I can't open my mouth much more than half an inch. Can you have arthritis in your jaw?? I'm on my emergency pain medication, but I'm still hurting somewhat. Too bad I can't tolerate most narcotics.

I have a massage appointment on Monday for the inevitable neck and facial muscle problems. That will probably help more than anything else. I'd go more often if money weren't an issue.

The really aggravating thing is that I might need to have a similar procedure on the tooth next to the one we worked on today. I have been getting referral pain there, so it is actually hard to tell where the problem lies. If it's still hurting when I go back for the crown in three weeks, I'll have to schedule more work. Sigh.

I'm getting too exhausted to type anymore. Think I'll ice my jaw for awhile and try reading quietly for awhile.

Pain level: 5
Fatigue level: 9

Tuesday, May 10, 2005

browser life since Starfest.... 

Hard to believe over a week has passed since the convention ended. And my zombie-like post-convention state continues. Rats.

The day after Starfest was over (Monday the 2nd), it was all I could do to drag my butt out of bed long enough to return the rental wheelchair. I dozed off in the car both on the way there and back. Good thing Dan was driving. I can't remember for sure, but I think I went back to bed while Dan and Greg and Angie did some shopping, or something along those lines. I think that was also the day I got some health insurance issues straightened out. For some reason, the company was declining coverage on all the diabetes classes I took, even though I had pre-registered for the classes and they won't let you take them if you aren't covered. For awhile there, it looked like I was gonna have to cough up $1000 or more. Whew. That evening, I actually cooked supper.....herbed rotisserie chickie, gluten free mac and cheese and green beans. And while Dan, Greg and Angie played poker, I edited my Starfest pix so I could get them on a disc for Greg and Angie to take home. Afterward, I watched the rest of the "Invasion Iowa" tape. I must say I thoroughly enjoyed it.

On Tuesday the 3rd, Greg and Angie headed back to South Dakota. Not sure of the time....I tried to get up to say goodbye, but I was so wiped out as to be incoherent, so it's probably just as well. Had a massage/chiropractic appointment at 11am, but the message therapist called in sick, so I just did the chiropractor and re-scheduled the massage for Friday. Did moist heat and ultrasound before getting adjusted, which helped. Then I had a rheumatologist appointment at 1pm. There wasn't a lot new to discuss, but I did tell him how much the wheelchair helped me at the convention, which he found very interesting. And I told him about the neurologist appointment I've got July 20 to get a second opinion on treatment for the periodic limb movement disorder. He agreed that whether or not I return to work will probably hinge on the outcome of that. Got home and was going to take a shower, but I suddenly was overwhelmed with weakness and exhaustion, almost to the point of collapse. I made it to the bed and the next thing I know, three hours had passed. Don't remember what else I did that day.

On Wednesday the 4th, aquacise class was cancelled, so I did 20 minutes on the Gazelle machine instead. Then I decided since the weather was nice for the first time in a week that I would pull weeds in the backyard. Got out there with my gloves, a dandilion digger, a cushioned mat to sit on (I can't kneel or crouch because of the arthritis) and my ancient boombox with an Adam Ant cassette in it and was all set to completely spiff up the yard. But after just half an hour, my joints were screaming in my hands and elsewhere and I felt like I would faint, so I had to come in and take a break. After camping on the couch for another half an hour, it became apparent that I wouldn't be able to do anymore, and I dragged myself upstairs and collapsed on the bed again. Woke up about three hours later not feeling much better and didn't improve the rest of the day.

Thursday the 5th, I had an appointment with the opthalmologist because I'd lost a plug in one of the lower lids and was having a lot more trouble with my eyes in general. He said my eyes looked infected due to allergies and drier than on my last visit but nothing too gruesome yet. He replaced the lost plug (I realllly dislike that procedure) and put me on some steroid drops to clear up the infection. He also had me start on Restasis, a prescription dry eye treatment that Janine Turner does ads for. It takes about a month of use before it starts to work. I made another attempt at yardwork that afternoon with essentially the same results as the previous day. I guess I should just plan to work on the yard daily in 30 minute increments since I don't have the stamina for more.

On Friday, I got a full hour massage on my neck and jaw muscles in the hopes of relieving the TMJ agony. The muscles were locked up tighter than a vise and didn't loosen a great deal in that hour, but I experienced a decrease in pain for the first time in two and a half weeks, a major accomplishment. And for the first time since the root canal, I could eat without experiencing a domino effect of pain throughout my face and head, only local pain in two teeth (yep, I think I need a second root canal). I'm having a crown done tomorrow that will require another hour and a half of work, so I've scheduled a follow-up massage on the 16th.

Saturday, I tried to run some errands even though I was feeling quite awful. I'd done a Gazelle workout, and it seemed to have sucked all the life out of me. I managed to pick up heartworm medication for the dog, my two eyedrop prescriptions from the pharmacy and a silk rose at the craft store to take to the cemetery on Mother's Day. Then I tried to catch up on e-mails and some other stuff on the computer. That evening, I went to the grocery store with Dan, and I was feeling a bit better until I'd been shopping for about 20 minutes. Then suddenly, my body decided to crank the fatigue AND pain
volume to 11, and finishing the shopping became a feat akin to climbing Mt. Everest. I fear I'm going to have to cave in and start using motorized carts in the store because I can no longer guarantee I'm not going to collapse otherwise.

Yesterday was Mother's Day. Even though I've gotten used to being without my mom and I think I cope with all the other holidays pretty well, Mother's Day still gets to me. The weather was gorgeous, so at least going to the cemetery wasn't too much of an ordeal. I hadn't been there in a year....it seems every time I'd planned to go I had a doctor's appointment or some other conflict. The lilac bushes at the cemetery were blooming....I took some blossoms with me. I decided I didn't want to go home and wallow in the misery of missing Mom, so I headed to a theatre on that end of town to watch "Fever Pitch". Problem was, when I got there, that theatre was playing "XXX" in Spanish in its place. There were other theatres showing the movie, but not for a few hours or so. I went back home and asked Dan if he wanted to go with me to a later showing, and he agreed. I found the movie a delight and exactly the diversion I'd been craving. I highly recommend it, especially if you're a big baseball fan.

Today was another typical weekday for me with an aquacise class, a few feeble attempts at errands and yardwork (I did manage to fertilize the front yard) and phone calls. And the typical collapse on the couch with intermittant breaks for making meals. Is my whole summer going to be like this?

I've been typing too long.....my left arm is going numb. Need to try for some sleep before my dental procedure tomorrow anyway. Sigh.

Pain level: 6
Fatigue level: 9

Saturday, May 07, 2005

Starfest 2005, Day 3 

On Sunday (May 1), we decided to make a full day of it and arrived a bit after 9am in the hopes of securing a parking space reasonably near the convention. We found one behind the building and came in the side entrance. Matt Helms was there early too, wearing a black t-shirt that said, "Coroner". We soon noticed several people wearing identical shirts; most of them hovered around the horror venues.

After checking the freebie room to see if there was anything new (nope), we went to the horror trivia contest so Dan and Greg could participate. The elimination round consisted of 25 questions, some of which were very obscure (although I did know the answer to the one about "The Rocky Horror Picture Show"). Dan got 15 points and was eliminated, but Greg got 17, enough to make it to the finals. The main part of the contest was set up like "Jeopardy" except that there were four players instead of three because there had been a tie during the elimination round. The "buzzers" were plastic rats that squeaked when you squeezed them. There were some pretty cool categories and questions that weren't much easier than the ones from the elimination round. There were also several questions that went unanswered because no one wanted to lose points for an incorrect guess. Greg did very well, and even Angie seemed amazed at some of the stuff he knew. He took second place, winning admission to next year's convention. Awesome. Oh, and Matt Helms peeked in for a bit during the "Jeopardy" portion.

Greg was on a roll. After the contest, he popped into the gift shop for a caffeine break and ran into none other than Jeffrey Combs. He even got to have a short conversation. Probably the best thing about this convention was the accessibility of some of the guests and the fact that they seemed to be enjoying themselves as much as the fans did.

Since this was the last day of the convention, I knew that if I wanted to acquire anything from the dealer's room, I'd better make my move. I asked Dan to steer me right over to the Iconograph table. I flipped back through the LOTR autographs, mulled it over and then decided that I'd still get one but would make it one of the less expensive ones. Problem is, I couldn't decide between two really cool autographs: an Elijah Wood and a Sean Astin. The proprietor heard me discussing it with Dan and offfered me a $20 discount if I bought them both. I took him up on it. So I spent about $30 less than if I'd bought an Orlando Bloom or Viggo Mortenson, but I got two good autographs instead of just one. Turns out while I was doing that, Angie bought an Orlando Bloom at another table. Must say she has excellent taste.

When we left the dealer room, we decide we'd better join the line for Shatner photos even though Shatner wasn't going to be there for two more hours. We had plenty of company. I amused myself chatting with the lady in line behind me who had the same kind of camera I did. She had been to lots of Starfests and had met an impressive array of "Star Trek" cast members. We also talked with one of the staff members who was keeping the line organized. She said that Gillian Anderson had been booked one year but had to cancel, and she talked about Kevin Sorbo and the time he auctioned off his undies! Needless to say, I'm extremely sorry I missed Kevin Sorbo!

Dan and Greg left the line for awhile because they had tix for a Jeffrey Combs photo session to take place an hour before Shatner's. Ironically, while they were gone, Mr. Combs strolled by the Shatner line and remarked, "Oh, so THIS is where everyone is!" Apparently, Claudia Christian noticed everyone was waiting for Shatner too because there was no one in line to see her. She started singing "All By Myself".

After Greg and Dan got back, Greg and Angie decide to make a quick trip to the art room. I was pretty sure Angie would buy a copy of that awesome Legolas painting I'd spotted Friday night, and I was right, she bought that very one. Great minds think alike.

By the time the line for Shatner photos started moving, it had gotten absolutely massive, and I thought there was no way everyone would be able to get a photo. I seriously underestimated the efficiency of the Starfest staff! The whole thing was practically a blur, they had us moving so fast. Hand someone your ticket, walk up to Mr. Shatner and say hi, sit and smile at the camera, get the thumbs up from the photographer that it turned out, get up and get out of the way for the next person. I would have liked a little more time, but I think they did get everyone through that line, which was pretty awesome.

We decided not to wait for the photos to print out but to get in line for the autographs right away so we wouldn't miss out. We were close to the front of the line. Had Dan and Greg check for the pix a few times while Angie and I held their places. They were finally done about an hour and a half after they'd been taken, so I'm really glad we didn't stand over there and wait for them. They turned out very nicely I must say. While we were waiting, Dean Haglund came by on crutches. I think I read somewhere he has a knee problem? We also talked with other people in line since I'm so good at that. The lady next to me in line was a seasoned convention goer as were a few others. She spoke of how Scott Bakula was intimidated by his fans when "Quantum Leap" first became popular. She had some very nice memorabilia for William Shatner to sign. The line got long and very noisy in the hour and 45 minutes we were there. Dan took photos of someone dressed as Michael Myers, and there were people on the balcony above us taking pix of the enormous line.

Amazingly, William Shatner appeared right on time, and the no-nonsense staff got us moving pronto. I saw him raise his eyebrows a bit when the lady ahead of me gave him three items to sign, but I think he decided it would cost too much time to say anything, and he just went ahead and signed them. Dan and Greg tried to take pix of Angie and I getting our autographs, but security cleared them out of the area. Dan did manage to get a good shot of Shatner signing something for a guy ahead of me though.

Since most of the convention goers were behind us in line for autographs, we decided to grab an empty table in the atrium and pause for some refreshment. Shatner was scheduled for a Q and A at 5:30, and I thought if we went over to the main events room at 5:00 we could go snag our reserved seats. I didn't realize the movie previews were going to run so long prior to 5:30. We ended up waiting just outside the entrance for a considerable amount of time for the house lights to come up. This was the one time I was really beginning to resent being "invisible" in my wheelchair because even though we were up against the wall, people continually ran into me and tripped over my feet. I swear, if I ever get my own wheelchair, I'm gonna put flashing lights or something on it so people will see me!

We finally did get to head for our seats. It was crowded to be sure but not quite the nightmare I'd been envisioning....kudos again to the organized staff. And before I knew it, after a very brief intro, William Shatner appeared on stage. He talked about a charity event he'd done the night before, and he told stories of previous trips to Colorado, including the time when on the way to a performance he had an allergic reaction to a Chinese dinner someone had cooked for him. He also mentioned getting stuck in the snow on the slopes while skiing. After someone sang a song they'd written for him, he talked about more current things, like "Invasion Iowa", a short reality series in which he and several actors pretend to film a grade Z movie in a small Iowa town but in fact are doing a show about the townspeople. There were some of those townspeople in the audience. He also talked about how the "Has Been" album came about. There wasn't time for more than a couple of questions, but the highlight of the night was when someone asked him to tell a horse story and he went into an account of when a horse fell on him and when he went to the hospital for his injuries, no one would help him out of the ambulance because they thought he was filming "Rescue 911"! I had trouble getting any good photos of Shatner on stage because were so many people in front of me (the curse of being short), but Dan took over and got some excellent shots.

When Shatner's time was up, we left right way to avoid the crowds. We got out surprisingly fast and went to get some supper. We had originally planned to eat at Carrabba's but reconsidered and went to the Outback nearest the house. Good call. After we had eaten, one of the wait staff came to our table and announced that a gentleman at the bar wanted to pay for our dinner! The staff seemed as puzzled as we were. I don't know if the guy had come into money or was feeling generous or just lonely, but he bought dinner for pretty much everyone in the restaurant. We found him and thanked him and left shaking our heads but smiling.

There was one more treat in store for me that day....Greg and Angie had brought a copy of "Invasion Iowa" for us to watch! I enjoyed it immensely, not just the joke that Shatner and company were playing on an unsuspecting town, but also the fact that the people in that town were such good sports about it. And Shatner grew to really like these people in spite of himself, so he didn't let things get too far out of hand. I got to keep the tape, which is good because I'll probably watch it again.

So is it any wonder that I'm still exhausted a week later? It was worth it, though. I'm already looking forward to next year.

Friday, May 06, 2005

Starfest 2005, Day 2 

On Saturday (April 30), Greg and Angie went to the convention right after it opened, but I had made a committment to participate in a Sjogren's fundraiser that morning, and Dan took me. No way was I in any shape for a two mile walk, so we brought the wheelchair along. My aunt met us there and walked about half a mile with Dan pushing me in the wheelchair. The charity event was a rousing success; it raised over $21,000.

When we got home, even though Dan had done all the hard work, I was still too exhausted to make it to the convention, so we took an hour and a half nap. I hated missing anything, but such is my life. Then I had a quick chili lunch and tried to make it out the door in enough time to see Jeffrey Combs in a Q and A session. Dan knew him from the "Re-Animator" movies.

Even though the parking situation hadn't been great on Friday, on Saturday afternoon, it was a total nightmare. Only nine handicapped spaces in the whole lot, and of course they were taken because there were way more than nine attendees in wheelchairs. We ended up going across the street to someone else's parking lot and managed to swipe a space as someone was leaving. So Dan had to figure out how to get me in a wheelchair aross two lanes of traffic and a raised median. Needless to say, we were late for Jeffrey Combs. Rather than disturb anyone, we snuck over to the side of the arena in the dark and watched from there.

Even though I didn't know Jeffrey Combs before the convention, I enjoyed what I did get to see of his Q and A. He has done character work on "Deep Space Nine" and "Enterprise" in addition to film, and seems just as bummed about the cancellation of "Enterprise" as his fans are. I didn't realize he'd been in "The Frighteners". He really likes working with Peter Jackson. He will be directing a stage production of "Richard III", which of course intrigued me.

When the house lights came on, we found Greg and Angie, and Angie showed us to our reserved seats while Greg went to a photo session. By a stroke of terrific luck, our seats were on an aisle, so there was room to fold up the wheelchair in front of us. I really appreciated the perks of VIP passes at that point.

The next feature was a Q and A with Tony Amendola. He's currently in "Stargate SG-1", but he grabbed my interest right away when he started talking about performing with a local Shakespeare troupe during the '70's. No offense, but I thought he looked a bit like George Carlin. He was funny and very much at ease on the stage, and time really flew while he was up there because I didn't even realize he'd gone past his allotted time.

Because Tony Amendola ran long, the organizers tried to start the next feature as soon as possible, so I stayed put even though the assigned chair was already getting uncomfortable. Apparently the movie previews are a major attraction at Starfest. I figured at the very least, I'd get a better idea of what I wanted to see this summer.

First was "Batman Begins". It looked more promising than the last two Batman movies, but I'm not sure it interested me enough to pay $8.50 at the theatre. Maybe if I go to the bargain show.

"The Island" is something I'll probably skip unless Dan's interested in going.

"The Hitchhiker's Guide to the Galaxy" had a hilarious trailer, I must say. Turned out to be misleading, though.

There was an anime trailer, which drew no reaction from the audience or me.

The trailer for "Madagascar" was amusing. It's an animated feature. Will reserve judgement on whether I want to see it after it has been out for awhile.

Disney is coming out with "Chicken Little". Cute trailer, but I probably won't check it out unless the reviews are unusually good.

"Stealth" is an action movie that looks like a futuristic "Top Gun". Don't think even Tom Cruise would have made me want to see this.

Not gonna see "Bewitched" either. No way, no how. Same for "House of Wax" featuring Paris Hilton's film debut (except for the porn of course). "Unleashed" with Jet Li looks unbelievably awful. And "Deuce Bigalo 2"? Puh-leeez!

Don't know what to think of "Dark Water", but I suspect it could be a real dog. Will wait and see. Same for "Knightwatch", a Russian thriller that may or may not be my cup of tea.

"Zathura" I think recalls "Jumanji". The trailer was interesting, but I'm not so sure the film will be.

One of the real standouts was something called "Scanner Darkly". Remember the "Take On Me" video where the lead singer becomes an animated character? The cast of this movie becomes animated, and it looks pretty cool.

Will probably go see "Charlie and the Chocolate Factory" just out of morbid curiosity. Figure I'll either love it or loathe it. Johnny Depp (or at least his voice) also appears in a Tim Burton vehicle called "Corpse Bride", which I'll likely skip.

Gotta admit I liked the trailer for "Kingdom of Heaven" quite a bit. Not just because it stars Orlando Bloom (which is an attraction in itself) but because it shows a whole different side of the film than the trailers they've been showing on TV. There are hints of a plot that would interest me. I may see if I can talk a female friend into seeing it with me as Dan's not particularly into period pieces.

"Mr. and Mrs. Smith". Hmmmm. Maybe. If it has adequate humor to it I might like it, but the trailer showed mostly violence and very little dialog, so hard to tell.

"Sound of Thunder " is taken from a Ray Bradbury story. While I like Bradbury a lot, I probably won't waste my time if it's not a good adaptation.

"Fantastic Four". Something for Dan, not for me.

"War of the Worlds" had a feature as well as the trailer. I want to like this one, I really do, as the story has fascinated me most of my life. But what I saw went in a completely different direction than I was expecting, and I wonder if I'm going to be let down. I'll probably give it a shot anyway, but I'll have my fingers crossed.

The house lights finally came up after an hour and a half of previews. There was another speaker scheduled, but I had to get my ass out of that chair. So Dan and I snuck out for a potty and snack break. While I was waiting in line for the restroom, I took a peek outside and saw two Klingons having a smoke in the snow. Later, after Dan got some goodies at Starbucks, I got out the camera and entertained myself for about half an hour. I got pix of R2D2, a rather amazing Predator, various banners and cardboard cutouts on the balconies above the atrium, and of course my beloved Klingons.

We snuck back into the main event room toward the end of Grace Park's Q and A. I had never seen her before...I guess she's in the newer version of "Battlestar Galactica". At the end of her session they showed more "War of the Worlds" previews, essentially the same as what we'd already seen except the trailer was for the Japanese release and the feature had an intro with Spielberg and Cruise saying howdy to the StarFest convention.

I would have liked to have stayed for the costume contest. Next year I definitely will. But this time, we had to get out of those godawful stadium chairs and get a real meal someplace. We hit Boston Market because you can get a filling meal there without a long wait.

Afterward, we decided to go to a regular movie in the theatre. We were all set to see "Fever Pitch", but when we got to the theatre, it was no longer running. We decided to see "The Hitchhiker's Guide to the Galaxy" because the trailer had been so funny. Ack. Ok, I found the movie funny in spots, kind of like Monty Python, but there was absolutely no momentum, and it dragged terribly in between the funny parts. I was pretty amused by the dolphin song, but I think I was the only one. I'm not sure Dan will ever forgive me for talking him into seeing this movie. He may never set foot in a theatre again. My bad.

When the movie was finished, so was I. I don't even remember what I did after I got home. Probably fell asleep on the couch again.

StarFest 2005: Revenge of the Fest, Day 1 

That was the official name of the convention I attended last weekend. I still feel utterly drained, but I will attempt to describe my experience anyway because if I wait much longer I won't be able to remember it anymore. And this was something I don't want to leave unshared.

Ok, got up somewhat early Friday morning (April 29) to go pick up the wheelchair I'd rented. A glamor-mobile it was not, but they were only charging me 15 bucks for three days' use, so I wasn't gonna complain. It was a tad awkward getting it into the trunk, but it did fit.

After everyone waited around for me to tidy up and come more fully to life, Dan and our friends Greg and Angie and I killed some time before the convention registration at 5pm. We went to Media Play, where I finally obtained my own copy of the '70's edition of "Willie Wonka and the Chocolate Factory" with Gene Wilder in it. We also went to an autograph shop and a Disney store in one of the malls. I wasn't using the wheelchair at this point because I didn't think I'd need it.....I was shocked at how difficult it was for me to get just halfway across the mall. By the time we did this and a brief stop at Best Buy, I was nearly done for.

We decided to have late lunch/early supper at the Outback....nothing like a 7 oz. tenderloin to recharge my batteries. We got to the convention shortly after registration began and already had to park somewhat far away, so Dan got to learn how to steer the wheelchair in the parking lot. He did amazingly well. The registration lines for VIP were pretty short. Much to my surprise, one of the convention guests, Matthew Helms, was standing right next to the line. He's a young local actor who has a 4th degree Black Belt.

We took a look at the schedule to try and figure out a game plan. We opted to skip an SNL-style sci-fi parody show (maybe next time) and wander a bit. We went in to a room containing all kinds of free movie posters for upcoming releases. I grabbed a few for souvenirs.

Our next stop was the dealer's room, where there are all kinds of memorabilia for sale. It was somewhat crowded, but not too bad. Here is where I found out that when I'm in a wheelchair and Dan is pushing it in a noisy room, he can't hear me, so it was difficult to get where I wanted to go. I also discovered here that I'm suddenly invisible in a wheelchair except for other people in wheelchairs or scooters and little kids in strollers. Whenever I would try to take a picture of something, people would move right in front of me and not notice me at all. And if I asked them to move, like Dan, they didn't hear me. To be fair, when people finally did notice me, they were very helpful. And the convention overall was extremely accessible, which proved to be a good thing because there were more wheelchairs, canes, etc. than I've ever seen in a single gathering of people. So even though I could have gotten much better convention photos had I been up and walking around, I did get to see most of what I wanted. And it was incredible how much more energy I had when I wasn't dragging my arthritic body from one room to the next!

Where was I? Ah, yes, the dealer room. Surprising lack of memorablilia featuring the convention guests. But there was sufficient material to keep me entertained. And if you were into autographs, this was the place to be as Iconographs was there. I'd seen their wares in Vegas, so I knew they had good stuff, but I was not prepared for such tempting fare as the original "Star Wars" casts' autographs, original "Star Trek" signatures and a signed Val Kilmer from "Tombstone" that made Dan drool. All were safely out of my price range, but then I stumbled upon a binder of "Lord of the Rings" autographs. No fair! Uncle! The ones I wanted most, Orlando Bloom, Viggo Mortenson, Ian McKellan and Christopher Lee, were a bit more than I could spend with a clear conscience, so I decided to pass for the moment and give it some thought. Turns out I gave it a lot of thought, even dreamed about Orlando Bloom that night, heh heh.

Next we went into one of the small viewing rooms for something called "Bad American Dubbing". They should have called it "Bad Narration and Editing". I couldn't leave, though, because Dan had wandered to the restroom, so I hung around for awhile and managed an occasional chuckle until we were ready to move elsewhere.

Found the art room and got a good long look. Very impressive stuff there. "Lord of the Rings" characters drawn so life-like that at first I thought they were photos. Someone really liked Eowyn because I saw several drawings of her. But the best was Legolas. Also lots of mythological themed art that I enjoyed.

Before committing to any of the scheduled shows, we decided to peruse the dealer room again with the intent of making some purchases (at least that was my intent). I had noticed that the Shatner photos and autograph signings on Sunday were going to be really close together, and I was concerned that the photo wouldn't be ready in time for the autograph, so I bought a photo of Captain Kirk with his trademark smirk for Shatner to sign instead. Also went to one of the author's tables and spoke to Christie Golden, a local lady who has written 25 books. Asked her if she enjoyed these conventions, which she did, and she told me about some of the other places she has gone and about how she was thrilled to meet Sean Astin when he dropped by the dealer room last year. I purchased one of her new novels, part one of a sci-fi/fantasy series, and she happily signed it for me. She said sales were going much better than expected already. I thanked her for her time and left impressed at how friendly she'd been.

By now we were starting to see attendees in costume, which was pretty entertaining. I noticed Gollum, a stormtrooper who unsuccessfully evaded my photo-taking attempts, Starfleet Academy uniforms, lots of goth, pirates, Darth Maul, and costumes too strange to describe. A table in front of one of the restaurants was taken up with Klingons who would have looked perfectly natural riding in on Harleys. Their costumes were mostly leather, wonderfully elaborate and many appeared handmade. They were smoking and drinking heavily, exactly what you might expect from Klingons hanging out on Earth in 2005. We popped into the restaurant for a bit.....the others got Cokes, and I drank my bottled water and ate some dried pineapple and peanuts I'd purchased at one of the tables.

After this, we attended our first formal star presentation: Dean Haglund of "The X Files" fame doing improv. While waiting to get in, I saw a very striking woman who looked familiar, but I couldn't figure out where I'd seen her before. Turns out it was Claudia Christian from "Babylon 5". The room where the presentation was to be had stairs in it, so I ditched the wheelchair outside the room and made my way slowly to my seat.

I didn't know this at the time, but Dean Haglund used to do improv with Ryan Stiles and Colin Mocherie of "Whose Line Is It Anyway", one of my favorite shows. So when he used the same comedy techniques to improvise an episode of "The X Files", I was delighted. First he grabbed an audience member to do sound effects for him while he acted out a scene. He also had members of the audience provide his hands for him (he wore a jacket to cover up his own arms) and play Mulder to his Lone Gunman incorporating material written by the crowd. And Claudia Christian stepped forward to improvise some film styles with him. They asked the audience to name a country, and some wit yelled out, "New Jersey!" So they went with it, and added dialog from Ireland, Japan and France. By the time it was over, my face hurt from laughing.

We decided to call it a night after Dean Haglund. There was going to be a showing of "The Rocky Horror Picture Show" at midnight, but I think no one would have enjoyed it but me, and I needed some sleep.

Thursday, May 05, 2005

What's that dragging, a long behind??? 

Still not up to posting about my Starfest experience. Sometimes it seems the more fun I have, the more exhaustion squashes me flat. Will perhaps try tomorrow?

In the meantime, though, our friends Greg and Angie have returned home and have a full report on the weekend's events. Here's a link:

Captain's Blog

Even feeling as shitty as I have the past few days, I still prefer earned fatigue to unearned anytime.

Pain level: 8
Fatigue level: 9

Wednesday, May 04, 2005

Back from my mini vacation..... 

Enjoyed the StarFest convention last weekend. Will come back and tell all about it when I'm less brain dead. For now, here's a page of pix I took:

StarFest 2005

Must get some sleep.

Pain level: 7
Fatigue level: 9

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