Friday, June 29, 2007

Rave of the Day for June 29, 2007: 

Was tidying up my desktop and discovered this long-neglected link. It's about the mental benefits of blogging, of all things....

Eide Neurolearning Blog: Brain of the Blogger

Hoping to get going this weekend on the final phase of unpacking. I've got lots of things I've been putting off.

Like blogging about blogging, heh heh.

Thursday, June 28, 2007

Rave of the Day for June 28, 2007: 

Have had a link to this on my desktop for months. Ever heard that a television program has "jumped the shark"? This site explains where the term originated and lets you vote on which shows have passed their peak and why....

Jump the Shark

To me, the most obvious jump the shark move by a show is when the powers that be realize that their child stars have become geeky pre-teens and introduce new characters to try to preserve the cuteness factor, ala "The Brady Bunch" with Cousin Oliver and "The Cosby Show" with Olivia.

I just hope no one decides to replace me with a five-year-old, heh heh.

Tuesday, June 26, 2007

Late spring/early summer Netflix mini movie reviews.... 

Whoops! I just realized I haven't reviewed a movie since April. Had to look up on Netflix what I've watched because I've forgotten already.

First up is "Mrs. Henderson Presents". Dan totally shocked me by watching it with me (eccentric British characters not being his preference). This movie came out in 2005 and stars Judi Dench and Bob Hoskins. Dench plays a newly bereaved woman in 1930's England who is appalled to discover that she is now expected to make idle chitchat at boring society functions for the rest of her life. Fortunately, she is wealthy, so her quirky nature is tolerated, but she causes quite a stir when she acquires a theatre and decides to feature a nude revue. She does have to make some concessions to appease the powers that be, the main stipulation being that the women in the revue must stand absolutely still when nude on stage as though they were art sculptures in a museum. The story is hilarious and touching and for the most part surprisingly tasteful (although I'm sure Dan was a bit taken aback by a brief full frontal of Hoskins). And if you doubt Mrs. Henderson's sanity during the course of the film, after she makes a speech justifying the importance of the theatre, you'll agree that her heart was in the right place all along. I recommend this one, especially for anyone burned out by all the summer sequels who wishes to turn the other cheek, heh heh.

Dan finally picked out some movies he wanted to see, or, rather, ones he was interested in that I might also like. First one to meet this criteria was "Hollywoodland". Part crime story, part biography, it chronicles the life and death of George Reeves, the man who portrayed Superman on television. This role was both blessing and curse for Reeves. He was a dramatic film actor who needed work at a time when television was for the most part still a novelty. He was embarrassed at being associated with what was considered a substandard medium even though this brought him great fame, and he was pretty much typecast for the rest of his abbreviated life. But even though the main story line is about Reeves, it is filtered through the eyes of a sleazy detective who tries to figure out if Reeves committed suicide or was murdered (he did NOT die trying to fly off a building; that is the stuff of urban legend). Several people associated with Reeves are suspected, including a wealthy married woman played by Diane Lane who uses Reeves as a boy toy. Ben Affleck is Reeves, and he effectively portrays a man who never wanted to be a superhero.

Next up was "Stranger Than Fiction". I passed this one up in the theatre because I was not fond of Will Ferrell in film, but I kept hearing that he was actually good in this one, so I put it in the Netflix queue. Excellent choice. Ferrell plays Harold Crick, a routine man in a routine world. Or at least all is routine until he hears a female voice in his head narrating his life. That voice is Emma Thompson, playing an author with writer's block who is trying to figure out how to kill Crick, who is coincidentally a character in the book she's composing. Crick is bewildered to discover that no one else can hear the voice in his head and that his death is imminent. He consults a literature professor played by Dustin Hoffman. The professor initially dismisses Crick as an overstressed man plagued by OCD, but he does eventually believe. There is a hilarious scene where Hoffman quizzes Ferrell as to what sort of literary character he is in the hope of ascertaining the author, and he manages to rule out Tolkien, C.S. Lewis and Shakespeare. Ferrell does find Thompson and tries to convince her not to kill him. I don't know which was more surprising, that there was a serious side to the film or that Ferrell was able to pull it off. This is my favorite movie to have come out in 2006. Rent it; you won't be sorry.

After that, I was in the mood for something light-hearted, so I chose "Wallace & Gromit: Curse of the Were-Rabbit". I must say that claymation has gotten much more sophisticated than it was when Rudolph the Red Nosed Reindeer debuted on TV in the 1960's. Wallace is an odd man with a love of gadgets and cheese; Gromit is his adorable dog. The two make a living ridding their town's vegetable gardens of rabbits. Their methods are effective and humane, but unfortunately too successful in that their home is now overrun with the bunnies they've captured. Chaos ensues when a scientific experiment goes awry and an evil were-rabbit begins terrorizing the town. This movie is cute and clever and funny.

Next, Dan and I watched "Batman Begins", which came out in 2005. I had put off seeing it, thinking it was part of the franchise that began in the 1980's (although I did like the first few all right). But this is a whole different bat, free of all the Saturday cartoon attitude and the mugging for the camera by the nemesis du jour. This is the story of a man who must overcome his fears and chains of the past who just happens to dress as a bat to fight crime. I really wasn't sure where it was going during all the ninja training, but despite the slow build-up, it actually did get interesting. I enjoyed learning where all the gadgets came from and the evolution of a superhero. You don't have to have ever read a comic book to appreciate this movie.

After that, I was ready for a foray into the world of documentaries. It was only matter of time before I got around to "Super Size Me". Morgan Spurlock of "30 Days" fame conducts a grisly experiment on himself. This completely healthy man decides to eat nothing but McDonald's three times a day for a solid month, upgrading each meal to super-size if asked (luckily, this only happened nine times). He'll eat each item on the menu at least once. Prior to his first McMeal, he is given a complete medical workup by a team of doctors, including cholesterol, cardiac stress test, liver enzymes and other bloodwork. The result of each test plus his weight and other meaurements are recorded, and each doctor gives their prediction as to what effect they think the fast food will have on Spurlock. The general consensus is that his cholesterol and weight may rise a bit, but because he is so fit and healthy, he won't have any serious ill effects. And so he embarks upon his McAdventure. At first, even though he admits the food tastes good, it makes him physically ill. He adjusts to it surprisingly quickly and actually begins to crave it like an addict would. But even more surprising are the drastic changes to his body. The weight gain and rise in cholesterol are far higher than predicted, and the unexpected damage to his liver is quite alarming. The doctors plead with him to stop the experiment, but he sees it through. While I personally haven't set foot in a McDonald's in four years, if I had been a regular patron, I would have sworn off the stuff completely after viewing the movie. For the millions who gotta have their Big Macs, moderation at the very least would be beneficial, like, say, one a month. I was impressed enough by the movie to put season 1 of "30 Days" in my queue.

And then last week, it was off to Metropolis for "Superman Returns". Dan had seen it last year and had recommended it. I had enjoyed the Christopher Reeve version of Superman (was that actually way back in the '80's?) and was reluctant about viewing a re-make with excessive computer graphics. This wasn't a re-make at all: it was a separate story of Superman returning to Earth after a five-year absence, set in modern day. It appears that the world, and most particularly, Lois Lane, is managing just fine without Mr. Faster Than a Speeding Bullet. At least they are until Lex Luther swipes some kryptonite and some neato power crystals that can grow land and sink most of the U.S. into the ocean. I still had a mental image of Gene Hackman as Luther, so it took me a bit to adjust to Kevin Spacey, but he does do a credible evil nemesis. Superman gets re-hired at the Daily Planet as Clark Kent, where he discovers his beloved Lois is married and has a child. But, hmmm, the kid seems a little old to be the product of a relationship that has gone on less than five years. Superman is of course too much of a gentleman to broach the subject, although he does steal a smooch from his favorite female reporter. The story of Superman has always required a massive suspension of disbelief, i.e., that a man can put on a pair of glasses and no one will recognize him, so if you can get past that and Lois escaping unscathed after being thrown around a runaway space shuttle with no oxygen, this is a pretty decent movie. It is less cheesy than previous incarnations, and, to my relief, there is just enough CG to make it exciting but not so much that your head explodes trying to comprehend it. My only major complaint was having Kate Bosworth play Lois Lane. Her performance was flat and her character lacked spunk or humor. I do hope she doesn't appear in any sequels.

Now I'm caught up, at least until I view "Pieces of April" tomorrow. And I've got enough stuff in my queue to last me at least six months (still doing just one at a time), so there will be many reviews to come.

It's a wrap.

Rave of the Day for June 26, 2007: 

Was on But You Don't Look Sick last night and found some useful/interesting articles. The first is an essay about the difficulty of being cheerful when one has a chronic illness....

It's ok not to smile

And here is a list of various medical abbreviations useful for both patients and their caregivers....

Helpful Medical Abbreviations
I swear I'm going to start contributing articles of my own again as soon as I finish unpacking. There is only one space left to tackle, the scrapbook/project area. I hope to get to sorting out the boxes back there sometime this week.

Monday, June 25, 2007

Airline hell and high water.... 

Seems my adventures didn't end on Wednesday night when I got home from my trip. On Thursday, we got the heaviest downpour of rain I've experienced so far in Sioux Falls. So much was coming down that you couldn't even see through it to the street.

Fortunately, the rain finished up within an hour, and because Denver gets similar type storms from time to time, I didn't really think much of it. Until Thursday evening when Dan went to use the downstairs bathroom and saw that the floor was all wet. And when he investigated further and found most of the storage room floor completely soaked.

The sump pump didn't kick in once during the storm, so I figured it must be on the fritz, but it was too late in the evening to call anybody about it, so I put it on my agenda for Friday. The bathroom has a linoleum floor, so we were able to just mop it dry, but the storage room had carpet and pad that were all squishy. I had Dan get a couple of cheap box fans to try to dry things out some while I moved what I could out of the room.

Got up early Friday and called the guys who did our radon remediation because they had sealed up the sump pump. The combination of the trip to Denver, the moving things out of the storage room and the getting up early knocked me on my tuckus, so I lay comatose on the couch for about four hours until I got a call back. Someone came out about 5pm, unsealed the sump pump and determined that it was working fine, which was pretty embarrassing, but the guy did figure out that the flooding was the result of clogged gutters (we have 12 trees on our property shedding leaves all over the place), so it wasn't a complete waste of time, but a real bummer for Dan because he got to clean out the gutters on Saturday.

By Friday evening, the carpet in the storage room was dry, but the pad beneath was still soggy and beginning to smell, so I yanked up a corner of the carpet to investigate. Moldy and really putrid, ewwwww! Plus I spied cracks in the floor where the water had probably come in.

Decided the best course of action would be to pull up the entire carpet and pad in that room and toss it. The bare concrete dried much faster that way. When it was completely dry, Dan sealed up the cracks the best he could.

Dan had a really good idea: instead of replacing the carpet, why not put down cheap linoleum that would be easy to mop up in the event of another flood? He got some self-adhesive stuff and was able to put it all in yesterday. It looks surprisingly nice I must admit.

One thing I neglected to mention in my last post was that the airline that managed to lose my wheelchair did give me a $150 travel certificate with an expiration date of one year. At first I thought, why in the HELL would I consent to fly with them again, and where could I possibly afford to travel before June 2008? But then I remembered that Dan is going to Florida in October for his grandfather's 90th birthday with several family members, using the same airline!

So I checked with Dan's parents to see if it would screw up their plans too much should I tag along (I am quite a handful these days what with my limited mobility and dietary restrictions). They said it would be all right as long as I could still find a flight (Saturday to Saturday travel sells out fast). I went online and discovered that while their exact itinerary was no longer available, I could take flights with takeoff and arrival times that were nearly identical so that no one would be too inconvenienced.

Only problem was, how to redeem the certificate? Couldn't find any way to do it with the online travel companies, so I went to the airline's website. After digging and digging, I found no references to travel certificates, but it did say that ticket vouchers could only be redeemed over the phone, so I figured that would probably work for me too.

I called the airline's 800 number and got stuck in voice automated system hell. I got the itinerary set up, but there was no option for redeeming anything, and when I got to the part where you're supposed to state your credit card information, I kept yelling "help" like the system said to do at the beginning, but it didn't work, so I started saying "customer service" every time I hit a prompt, and after at least a dozen tries, I was connected to an operator. Unfortunately, the operator's English was quite poor, and I have particular problems understanding foreign accents on the phone, so it was barely more useful than the voice system.

The operator also was unfamiliar with travel certificates, so I was placed on hold several times. I was just about to give up when she informed me that my itinerary would be reserved for 24 hours. Within that time frame, I would need to appear at the Sioux Falls airport IN PERSON at the check-in counter to redeem the certificate and then pay the rest of the ticket at that time.

Fortunately, Dan was not opposed to taking me back out to the airport on Saturday afternoon. Thank goodness the wheelchair was still in the trunk, because there was a HUGE line at the airline's one and only check-in counter, so I was at least able to wait sitting down. Turns out there were two cancelled flights and that pretty much everyone ahead of me needed to figure out how they were gonna get to Chicago.

After at least an hour, I was finally at the front of the line and discovered to my dismay that the person running the counter was the woman who had picked a fight with me the previous weekend! When she said she remembered me, I just smirked. But the transaction proceeded smoothly, and I got my tickets without any further incident.

So it's a new week, I have a new floor in the storage room, and I'm going on an unexpected trip to Florida in three and a half months. I'll take it.

Meme, meme, meme, meme.... 

Came across this in a blog back before I went on vacation, but didn't have time to fill in my own answers until this weekend. Questions I may have answered before, but feel free to pass it along....

1. Can you cook?
Yes, but not well.

2. What was your dream growing up?
Um, there were several. I wanted to be a writer AND an actor AND an artist AND a photographer AND a DJ.

3. What talent do you wish you had?
Artistic, as in painting, sketching, sculpture, etc.

4. Favorite place?
Kona, Hawaii.

5. Favorite vegetable?
Before the dietary restrictions, broccoli. Now it's tomatoes, mostly in the form of sauce.

6. What was the last book you read?
The last one I finished was "Living Well with Fibromyalgia: What Your Doctor Doesn't Tell You...That You Need to Know". I am, however, very nearly finished re-reading "Harry Potter and the Order of the Phoenix".

7. What zodiac sign are you?
Aries, which should not come as any surprise.

8. Any tattoos and/or piercings?
As much as I like tatts, I can't bear the pain of needles on skin, so I don't personally have any. Similar story with piercings. The only ones are one hole each in the ears.

9. Worst habit?

10. What is your favorite sport?
To watch, baseball. To play, the only one I was ever any good at was volleyball.

11. Do you have a negative or optimistic attitude?
Tough call. I acknowledge the negative but try to focus on the optimistic.

12. Worst thing to ever happen to you?
Having a spinal tap performed on me without anaesthesia.

13. Tell me one weird fact about you.
I have a double-jointed tongue.

14. Do you have any pets?
Yes. Chip D. Dog, the world's most spoiled English springer spaniel.

15. Do you know how to do the Macarena?
Yes. A hair stylist taught me when he found out I was getting married.

16. What time is it where you are now?
At the time of answering this, 12:25am.

17. Do you think clowns are cute or scary?
I don't know about cute, exactly, but definitely not scary, especially since I was in a parade dressed as one and I didn't frighten a soul. I prefer to think they are funny.

18. If you could change one thing about how you look, what would it be?
Perkier boobs. Is that TMI??

19. Would you be my partner in crime or my conscience?
It would have to be in conscience. I'd make a lousy criminal because I'm a lousy liar.

20. What color eyes do you have?
Dark chocolate.

21. Ever been arrested?
Nope. See the answer to question number 19.

22. Bottle or draft?
If this refers to beer, I can't have either. But certain types of root beer are gluten free, so I'd like a bottle of that, please.

23. If you won £10,000 today [$20,000 for the Americans], what would you do with it?
Unfortunately, I'd have to pay off credit cards, do some home improvement, and set the rest aside to put toward a new car when one of the current ones dies. If I had no financial obligations, I'd travel with it.

24. What kind of bubble gum do you prefer to chew?
I seldom chew gum because of the TMJ. But when I'm flying on a plane and need gum to keep my ears from popping, I chew Biotene gum for dry mouth.

25. What's your favorite bar to hang at?
Alas, Sioux Falls allows smoking in all bars, and I am allergic to cigarette smoke. I guess the closest thing to hanging in a bar for me would be eating at the Outback, which serves alcohol.

26. Do you believe in ghosts?
Yes. And they seem to believe in me too.

27. Favorite thing to do in your spare time?
Photography, although opportunities for that are hard to come by due to my limited mobility.

28. Do you swear a lot?
Hell, yeah!

29. Biggest pet peeve?
At the moment, any press coverage of Paris Hilton.

30. In one word, how would you describe yourself?

Friday, June 22, 2007

How I spent my (late spring) vacation.... 

Leaving Sioux Falls on Sunday was pretty uneventful, except for a rude check-in person who decided to pick a fight with me as to whether my wheelchair was baggage. Dan was issued a pass to accompany me to the gate so an airline employee wouldn't have to push my chair. I just managed to purchase a bottle of water (can't bring my own through security anymore) at the gift shop before it closed.

The flight left on time. The guy who sat next to me was nice enough. It was a very bumpy ride, though, and the kid across from me who screamed during the entire flight gave me one hell of a headache.

Things rapidly deteriorated once I reached Denver. I waited until all the other passengers got off the plane, knowing that it can take some time for them to retrieve a wheelchair. But it still had not arrived by the time the other wheelchair passenger got her ride (she was just using one provided by the airline), and I was asked to leave the plane so that the passengers for the next flight could board.

I got to the gate and told one of the people at the desk that I was waiting for my wheelchair to be unloaded from the plane. I was told it would probably take awhile, so I replied that I would find a seat at the gate while I waited. In the meantime, the airplane I had just been on boarded passengers for a flight to Knoxville, and I kept an eye out for any family members but saw no one.

After the flight was boarded, I asked again if there was any word on my wheelchair. I was told someone should be along soon. I was pretty much ignored until I'd been waiting about an hour.

Finally, an airline employee strolled up pushing one of their wheelchairs. I asked where mine was. The employee said he didn't know, that he'd just been instructed to bring one of theirs, so I asked a different desk worker, and she had no idea either but said she'd look into it.

By this time, I had to pee really badly, and I begged the guy who'd brought the airline chair to wheel me over to the restroom. There was a line, and I asked him to wait outside the entrance to the bathroom with the chair. But when I finally got out of the restroom, the employee and the chair were gone, leaving me to hobble back to the gate by myself!

I was worried about where my relatives might be as I had expected someone to meet me. I asked the woman who was supposed to be tracking down my wheelchair where family members might be waiting if they hadn't met me at the gate. She didn't know and suggested that I use a paging telephone, a decent idea except that the nearest one was further away than I could walk!

The journey back from the restroom had left me feeling weak, so I polished off what little food I had in my bag (my choices are pretty limited since I couldn't carry liquids or anything requiring refrigeration). Meanwhile, two more flights boarded and took off from that gate. I had now been waiting TWO hours without my wheelchair or any way to find out where my family members were.

I was exhausted and in agony and was on the verge of tears when my sister, who is seven months pregnant, marched up. She said that because of increased security, no one had been allowed to meet me at the gate, but that after waiting two hours, she had talked someone into it. It would have been nice if an airline employee had informed me of that.

My sister had brought an airline supervisor with her who promised to get the situation taken care of. After waiting some more, we were told that the wheelchair was in baggage claim and that an employee would take me there in one of the airline's chairs. By the time we got to that part of the airport, three hours had passed since I'd landed.

The wheelchair was nowhere to be seen, but my dad and brother-in-law were there with my luggage. We got in line at baggage claim. The line did not move at all.

Another airline employee happened to overhear us talking about my wheelchair and came over and told us that we were probably in the wrong place to find it. He pushed me to another section where the supervisor of baggage claim was. We must have made quite a sight, an exhausted woman in a wheelchair with three family member streaming along behind.

I explained the situation to that supervisor. She told me that a wheelchair wouldn't be in baggage claim. She got on the phone and started making calls.

By this point, we were at the three and a half hour mark, and I was so wiped out that I couldn't think. Guess where the damned wheelchair was? Back at the GATE!

It would have taken another hour to get my wheelchair out to where I was, so we agreed to use the airline's chair to get me to my dad's vehicle and have the airline deliver mine out at my dad's house the next morning. By this time, it was 10pm, and I hadn't had any supper yet. My dad ended up taking me to the grocery store where they have electric carts so I could buy some eggs and cream of rice and some other things.

Hence, it was around midnight that I was stumbling around the kitchen at my dad's house trying to find bowls and utensils and such to cook my supper. Luckily, I can pretty much cook eggs in my sleep because that's essentially what I was doing. I'm supposed to stay upright three hours after my last meal of the day, but I had to cave in at 2am (3am in the time zone I'd just come from) and go to bed.

I did not sleep well at all. I was quite nauseous from my disrupted meal schedule and was barely able to keep the eggs down. I was also in severe pain from head to toe and got nasty foot cramps all night long.

My wheelchair was supposed to be delivered to my dad's house by 10am, so I dragged my pathetic butt out of bed and up the stairs and waited...and waited...and waited. I called the airline and after being on hold for half an hour was told it would be delivered by 3:30. So I read my book, played a video game, watched tv with my niece who was being babysat by my dad and stepmother, and waited some more.

About 2:30, we got a message from the delivery guy saying that he'd been to the house and no one was home, which was a lie as the dogs would have barked up a storm had anyone come by. My dad called the guy back and was told that because he'd already headed to Greeley, he wouldn't be able to come back by until 8pm! Then we got another call about 7:30 saying it would be about two more hours.

So it was about 9:30pm when the dogs sounded the alarm, startling the delivery guy so badly that he almost fell backwards down the stairs! But he had my wheelchair at last, all in one piece. What sucked was that I'd wasted one-third of my trip waiting for it.

Tuesday was my appointment with my rheumatologist. He was quite surprised to see me, and even more surprised by the trouble I was having with the doctors in Sioux Falls. He said there was absolutely no reason to doubt his diagnosis of Sjogren's as lip biopsies don't produce false positives.

He said he was extremely burned out on filing out the same disability paperwork over and over for long-term disability insurance companies and Social Security as he had already told them multiple times that I was permanently disabled. He said that even if there was a cure for either the Sjogren's or the fibromyalgia, I would have to be cured of both in order to improve enough to be able to work again, which is not likely. But he agreed to provide the documentation and prescriptions I needed.

Unfortunately, since he is from back east, he doesn't know of any rheumatologists in Minneapolis, Omaha, or the Mayo Clinic that he could personally recommend. He strongly urged me to find someone, though, as he was uncomfortable with the idea of me not being monitored by a rheumatologist at least every six months (I was going once every three months when I lived in Denver), and he knows I can't afford to fly to Denver more than once a year. But now that I have some recent documentation to give the long-term disability insurance company, I can take a few months to find a rheumatologist closer to Sioux Falls.

After some bloodwork, my appointment was complete. Since my sister and her husband were coming over to my dad's later and they were gonna have pizza (which I can't have on my gluten free diet), I asked my dad to swing by Wendy's so I could grab some chili. Finally, some family time that didn't involve hanging around an airport.

Once we'd finished our respective suppers, I got to look at ultrasound pix of my sister's baby. I was astounded at how clear they were and how much they can zoom up these days. One had an outline of a foot that was so close you could see every single toe; another showed the baby with the arms curled under the head in a sleeping position.

After my sister and brother-in-law left, I watched the news with my dad and stepmother. On it, there was a story that the space shuttle Atlantis would be flying over Colorado in about an hour and would be visible to the naked eye. I was skeptical I'd be able to see anything with all the airline traffic lights in the sky, but I stood on the deck at the appointed time, and sure enough, there were two very faint but solid white dots traveling in a straight line from the northwest to the southeast, disappearing over the horizon after about two minutes.

The next day was the last one already. The airline had had a nationwide computer meltdown that morning that either stranded or delayed 200,000 passengers, but my flight was still listed as on-time because it wasn't scheduled to leave until 3:45. Still, we made sure I headed over to the airport with plenty time to spare in case things were chaotic.

Good thing we did. Every single parking space at the airport was full, and you're not supposed to park in the drop-off location for any more time than to unload (more security restrictions), so there was no way for my stepmother to get me in my wheelchair to the check-in desk. We flagged down a cop and told him our situation, and he radioed into the airport to get someone to escort me inside right away.

Luckily, Denver International Airport has reinstated curbside check-in, so for a $2 fee, I was able to take care of my baggage while waiting for an airline escort. A bonus that I didn't know about was that if an airline employee escorts you in, they get to butt you up to the head of the line for security screening. Awesome because otherwise, it would have been about an hour wait.

Another good reason for arriving early was that my plane was leaving from gate #86! The airport extended the concourse a few months ago to a total of 95 gates. There were dozens of wheelchair passengers besides me because the concourse looks to be over a mile long.

The downside of being brought to the gate by an airline employee is that they have no obligation to hang around once you're there, which means if you need to pee or to get some water, you're on your own! Luckily, the restroom was somewhat close, and there was a restaurant selling bottled water about three gates away, so while maneuvering the chair to each of these was quite painful and exhausting, it was not impossible. I don't steer very well due to incoordination and go slower than most people walk, but I didn't whack into anyone, so I consider my ventures to be a success.

Unfortunately, while I was in the bathroom, the airline decided to move my flight to gate #95! I didn't even know about it because there were literally hundreds of stranded passengers lining the concourse and it was so noisy that I couldn't make out anything that was said on the PA system. I wheeled out of the restroom to find gate #86 empty, which was bewildering as there was no way I had the strength to propel myself to the end of the concourse.

Luckily, the woman who had originally checked me in at the gate hadn't left yet, and she volunteered to get me to the new location. So I still got there on time and didn't hold anyone up. But I was relieved to take off without any further chaos.

Home again, home again, jiggity jog.

Saturday, June 16, 2007

Finished it! 

Keep in mind while reading this that it is eventually going to appear as a separate web page on my fibromyalgia site, so some of the incomplete sentences will actually be titles and subheads and such. I'm just happy to have it done before leaving town....


A detailed description of what it feels like to have fibromyalgia

I do have other concurrent ailments such as Sjogren's syndrome, diabetes, hypothyroidism, gastroparesis, celiac disease, chronic myofascial pain and periodic limb movement disorder. While some of the following symptoms are attributable to the above disorders, they are also experienced by fibromyalgia patients who do not have concurrent ailments and are therefore valid on a fibromyalgia page. Even though fibromyalgia is a systemic disorder, I have endeavored to focus more heavily on the neurocognitive aspects as they in my opinion appear to be the most underestimated and misunderstood. Please keep in mind that as a fibromyalgia patient myself, some descriptions may be inadequate due to my own cognitive limitations.

An important note to readers with fibromyalgia: there is a great deal of variation from patient to patient as to number of and intensity of symptoms. You may never experience certain symptoms described below, and I am blessedly free from certain problems that plague other people with fibromyalgia. I am NOT any sort of doctor, and I encourage anyone who develops new or sudden worsening of a particular symptom to have it properly assessed by a medical professional.

The motivation for this page came from an excellent website on myalgic encephalomyelitis by Jodi Bassett. While it is not my intent to simply copy the author's work, we do share many of the same symptoms, and some of my descriptions as a result have a lot in common with hers. I highly recommend viewing both the master symptom list and the personalized description page:

A Hummingbirds Guide: The M.E. Symptom List

A Hummingbirds Guide: What M.E. Feels Like

To more fully round out a fibromyalgia specific list, I also found an article on Fibrohugs to be useful:

Fibrohugs Symptom List

Please keep in mind that this is not intended to cover every single possible fibromyalgia symptom, just the ones I personally experience. Some of more universal symptoms that define fibromyalgia, such as widespread pain, are not covered here in as much depth as the lesser known symptoms in an effort to keep the content from becoming too redundant. Chronic pain is pretty much a given, but I feel it is important to not gloss over fibromyalgia's effects on the brain, the gastrointestinal system, the central nervous system, the endocrine system and various other vital bodily systems.

Here is what I have experienced as of June 2007, in a somewhat but not necessarily chronological daily order:

1. I require a substantial uninterrupted amount of rest on a daily basis, up to 12 hours at a time. Without this, I function at a level that is even more impaired than usual for me. I need not be actually asleep during the entire time I am resting, just not actively interacting with anything. I usually fall into a state each morning that is somewhere between fully awake and fully asleep containing elements of both. I'll be able to hear what's going on around me but cannot rouse myself enough to respond to it, or I'll be dreaming that I have gotten up without realizing that I am actually still in bed. This transitional state can last anywhere from 20 minutes to 6 hours, although during the longer periods I may lapse back into a slightly deeper sleep phase. On the average, I'm in "limbo land" for about 2 hours each day. It can actually be dangerous for me for me to force myself to go about my daily activities before I am fully awake. I'll have heightened episodes of vertigo in which I run into walls, doors, corners, etc. I may experience light-headedness, probably due to neurally mediated hypotension, during which I faint or nearly faint. And I may have a serious lack of bodily coordination, during which I should avoid any complex activity that could cause me to injure myself such as dressing, going up or down stairs, taking a shower, etc. The best way for me to be sure I am ready to arise for the day is to try to mentally count to 45; I usually visualize counting on my fingers until I reach that number. If I doze back off, lose track while counting or am so out of it that I can't even tell where my fingers are, I am not alert enough to function safely out of bed. I will then start counting over again, as many times as necessary, until I can easily reach 45 and feel reasonably conscious.

2. I can, upon occasion if absolutely necessary, conjure up enough adrenaline to force myself into early wakefulness in order to answer the phone, respond to my husband waking me for some reason, or to go to an early appointment or get up due to an emergency. It takes a tremendous effort to fight the vertigo, light-headedness and incoordination, and it is actually painful to be awake in this condition. In addition, I will experience nausea, sometimes to the point of vomiting, I might find it difficult to express myself verbally, and I will likely feel "off" for the rest of the day. Once I have completed whatever task I got up early for, I will be prone to dozing off at random times the rest of the day or possibly on subsequent days as well. I can "get away" with activity on less than ten hours of rest only occasionally, no more than once a week or so, without experiencing an exacerbation of illness that persists into subsequent days. If I must get up too early on two or more consecutive days, I risk "crashing"; i.e., an exacerbation of the above-described symptoms so severe that I may be bed-bound for the majority of time for anywhere from one to three subsequent days. If I push myself even further to maintain a shortened sleep schedule like I did when I was working, I risk a permanent deterioration of my overall condition.

3. Conversely, I try my best to avoid resting in bed for more than 12 consecutive hours, although during an exacerbation, this may be impossible. Past the 12 hour mark, I will experience hypoglycemia from lack of food, exacerbated muscle spasms and cramping in all muscles below the knees, and severe headache not responsive to any treatment lasting the rest of the day. I will feel mentally and physically slow and weak like I have the flu. It may take as long as four hours and two meals before the low blood sugar symptoms subside if I've been in bed too long. The muscle cramps may require soaking in the hottest water I can stand with a generous amount of epsom salt in the water. After the cramping has stopped, the muscles may continue to twitch uncontrollably, sometimes as long as the rest of the day. In any event, the muscles in my feet and lower legs will be extremely sore to the touch and will be quite difficult to stretch or massage.

4. Once I do awaken after the proper amount of rest, I am still not symptom free, only symptom reduced. I am never ever fully comfortable as I have a constant level of "background" body wide pain going on. I am always nauseous in the morning. I'll have rather pronounced joint and muscle stiffness, to the point that I must do slow and careful stretches before I even attempt to get out of bed. When I first start to move around while still in bed, my joints make popping sounds like gunshots which cause varying degrees of pain. I may have severe lower back pain and/or spasms even though I am careful to sleep with my knees drawn up and a pillow between them. There will be varying amounts of foot pain when I first walk on them, ranging from a bruised feeling to uncomfortable cracking in the bones and tendons to burning from peripheral neuropathy. I am sensitive to both indoor and outdoor light and must acclimate by using the restroom lit only with a night light and then switching on an overhead light a few minutes later after my eyes have adjusted. I can tolerate light coming through a window perhaps ten minutes after that, although it is still painful to a certain extent. Fluorescent light causes headaches, particularly early in the day. My movements are slow and clumsy at first as my spatial orientation is off; it's like I have to re-educate my body as to how it's supposed to function. If I am well-rested, this re-orientation may only take 10 or 15 minutes. My power of communication requires a similar acclimation; I can perhaps answer a simple yes or no question, but more complicated speech is difficult to form mentally, and the end result is usually too garbled to be understood. It's like a taped recording being played back on a machine with worn out batteries, very slow and exhausted. Once up for the day after proper rest, my mental batteries should be recharged enough for me to communicate after about 20 minutes.

5. My daily transition to the "land of the living" is usually aided by a set routine that requires no complicated procedures or decisions. I take my medication, perhaps rest on the couch for a few minutes, then go about giving the dog his medication, food and water. Then I pick up that day's newspaper and look at the front page. I may not yet be able to comprehend the headlines, and I may mis-read them. It can be like looking at something printed in a foreign language. Sometimes the phrasing is familiar, and I can get the gist of the messages, and other times it all seems to be gibberish. I usually flip through the sections and may or may not remember anything I'm reading. There are times I'm really interested in an article, but my reading comprehension is way off. Sometimes if I go back over a story after a few minutes have passed, it may start to make sense. I rely a lot on photos, captions and sidebars if the main story is too complicated for me to absorb at that time. For some reason, fiction is easier to comprehend than non-fiction. Often, after reading for awhile, when I look across the room at something, like the clock, I cannot focus on it and must wait for my eyes to adjust. I cannot eat any breakfast because of the nausea, but an hour after I've taken my thyroid medication, I drink a High Protein Boost to settle my stomach and to raise my glucose levels. On a good day, I can safely consider myself to be in the "land of the living" approximately one to two hours after I've gotten out of bed. This is when my energy levels are the highest, so if I need to leave the house that day (usually to attend my aquacise for arthritis class), that's generally when I'll do it.

6. Some of my daily activities must be done in a fairly ritualized fashion to minimize my tendency to forget necessities such as taking pills, eating, showering, etc. Any small distraction such as a phone call, tripping over the dog, or getting absorbed in a newspaper article can cause me to leave out an important activity or lose track of time so that I am late on the days I need to leave the house. It is not uncommon for me to forget what day of the week it is and miss an appointment, even if I have written it on the calendar and have reminded myself of it the previous day. I even book two appointments for the same date and time while looking at the first appointment on my calendar! Distractions become even more of a problem when I am interacting with someone else. Sometimes if my husband is talking to me while I am cooking, I completely forget I am preparing a meal until the smoke alarm goes off!

7. I still drive myself, but only on short trips of less than 45 minutes continuously. Much longer than that, and I cannot stay alert behind the wheel. As even brief errands are fatiguing, I try not to leave the house more than once per day, I try to limit myself to one destination whenever possible, and I generally stay home each day that I don't have anything specific scheduled. I take the simplest route to my destination. Despite this, I make wrong turns even when driving someplace I've been to regularly for months or years. I have even gotten lost going to someplace I know. On the weekends, I let my husband drive if I leave the house at all. I don't drive much at night because the light from oncoming headlights is extremely painful, like my eyes are being stabbed. I have completely given up grocery shopping as it is just too exhausting even with the use of an electric cart. I also avoid stores with running ceiling fans or escalators because looking at these exacerbates my vertigo. I would like to join a church, but can attend only rarely. I socialize outside the home only when specifically invited for a special occasion. I keep those visits short as even positive social interaction is exhausting.

8. Exercise is a very tricky proposition as any form of it exhausts me. I force myself to go to the aquacise classes anytime I'm physically able to get out of bed because I want to retain as much of my range of motion as possible. The class is 40 minutes, 3 non-consecutive days per week and consists primarily of stretching in chest-high water. Even though the average age of my classmates is 70, I find it difficult to keep up with them. Walking in the water exacerbates my vertigo; I run into steps or walls like a human pinball. I stretch slowly and carefully as my trigger points protest painfully. We do mostly the same stretching sequences in each class, but I will get confused and have to stop everything and visualize what my body needs to do before I can proceed with the stretch because I have forgotten how to do it. Movement shouldn't take so much conscious thought to accomplish, but there are times that part of my brain just seems to short right out. Certain activities, like moving my arms in front of me in a swimming motion, end up being done in an awkward, choppy fashion because there seems to be some brain/body connection lost altogether. I find the progressive relaxation portion of the class to be only mildly achievable. Whenever I try to make a conscious effort to meditate, I become distracted within seconds because my brain can't shut out intrusive thoughts. I find this ironic as while my mental processing is too slow in its external responses such as movement and speech, the thoughts in my head still "chatter" too quickly for me to relax. Right now, this class is the maximum amount of exercise I can endure. If I endeavor to do more, I will suffer an exacerbation to the extent that I will be unable to attend my next class. I have also noticed that when I over-exert myself, both my face and my legs from the knees down will turn bright red. I do not get any sort of endorphine benefit from exercise that I can perceive. In fact, at about the 30 minute mark of stretching, my fatigue level becomes greatly heightened, and I cannot stop yawning, as though someone removed all the oxygen from the air around me. And there is only a negligible reduction in my pain level, primarily from my muscles being loosened a bit. Only rarely am I able to do anything after the class other than to drive straight home; I cannot even take a shower because it would wipe me out so much that I would be incapable of driving. I must reserve enough energy for the walk from the locker room to my car. The exacerbation in my fatigue level usually persists throughout the rest of the day. At times, it continues into the next day along with muscle soreness and twitching.

9. I find it difficult to follow conversations when more than one person within earshot is speaking. It's like I've suddenly been transported to the tower of Babel and only one word in ten is English. It doesn't help that I have severe tinnitus and measurable hearing loss, but a lot of the difficulty is mental as well. I usually try to focus on the words of the person nearest me, but even when I can hear them and am trying my best to be a good listener, concentration is a challenge. There are times when I hear the words properly, but I understand them incorrectly, or can make no sense of them at all. I am often frustrated with my short attention span as I did not have this problem when I was healthy and in fact worked in radio for six years, so conversation and quick witticisms were my livelihood. Now if I am trying to converse with someone, whatever reply I might have for them is so fleeting in my mind that it will disappear by the time they have finished speaking, so I find myself blurting my thoughts as they come, which is rude as it interrupts the person talking even though I don't usually do it intentionally. I'm also inadvertently rude in that I am so distracted with trying to form sentences and comprehend the other speaker that I cannot focus properly on their non-verbal expression, whether they have moved on to another subject, or even whether I may have said something inappropriate. When I become conscious of the distraction and try to go back to being a good listener, I will forget whatever it is I might have wanted to ask them, and if they ask me a question, I will have difficulty forming a proper response. I may stutter, substitute a word that begins with the same letter for the word I mean, transpose words, or forget my train of thought halfway through a sentence. There are times my mind goes completely blank as suddenly as if someone slapped me. Conversations on the phone are even more difficult as I generally can't tell at all if I am interrupting someone. It's as if my brain is a malfunctioning tape recorder: it alternates between moving painfully slow, speeding up to an incomprehensible blur, or freezing altogether. And while I still really enjoy conversation and socializing with others, I find it just as exhausting as physical exercise.

10. Another embarrassing problem is not recognizing faces of people I've seen before. This happens more frequently when the person is out of their usual setting, like if someone from my aquacise class ran into me at the health food store, but it also happens at places I go to regularly, like when I failed to recognize a doctor in her own office on my sixth visit to her. And I frequently can't tell people with similar features apart, like the various thin young blonde celebrities in the news, movie characters that are all military and have the same haircuts, or even the elderly ladies in my aquacise class even though they introduced themselves on the very first day. Assigning names to them does not help because I can't remember the names either. If I am at a restaurant, the only thing I will remember about my server after they tell me their name and leave the table is whether they are male or female. I had a photographic memory before I got sick, so this feels a like a whole chunk of my brain is suddenly AWOL.

11. I am physically incapable of wandering around for long periods of time. I can walk the equivalent of only one or two city blocks without rest. When I need to go further than that, like when visiting someone in the hospital, I require a wheelchair, which must be pushed by someone as propelling it myself is far too painful. I can get around in a small store, but the pain and fatigue increase with every step. My gait is slow and uncoordinated; I had to undergo months of physical therapy to re-learn how to walk without limping as I was causing injury to my feet, knees, hips and low back. It takes a conscious effort to use proper range of motion because it no longer comes naturally to me. The pain is bad enough, but it is the physical exhaustion that stops me cold. If I persist when the fatigue gets really bad, I start to feel weak like I'm going to faint, I might become short of breath, and my chest feels like an elephant is sitting on it. If I have over-exerted myself more than a couple of minutes, I will suffer an exacerbation of symptoms that can last multiple days on end. My overall pain level will spike, my incoordination in general will increase, my cognitive function declines noticeably, and the fatigue will increase to the point that I am mostly bed and/or couch bound. If I must stand in line for more than a few minutes, the pain in my feet increases and my feet may swell.

12. I usually eat my first solid food of the day about two hours after I have a Boost. Portion size, content and timing of meals are all crucial in order to facilitate digestion, keep glucose levels steady and to avoid gluten. Too large a meal and I won't be able to digest it in a timely fashion; also, my glucose levels will go too high and stay that way since the food isn't leaving my stomach. Certain foods cannot be digested at all and will cause vomiting. Other foods must be eaten only rarely in very small quantities (like, say, five bites of broccoli in a gluten free frozen dinner) early in the day to allow gravity to aid in digestion and to keep reflux to a minimum. For optimal energy levels, I try to start my next meal approximately two hours after I've finished the previous one. Once I am up for the day, if I go five hours without food, I will become too weak to walk, talk or think effectively. Five or six small meals per day are ideal, but because I must spend so much time resting, I am generally only able to accomplish four if you count the Boost. I try to get at least 7 grams of lean protein per meal; otherwise, my cognitive function seems to be even more off than usual. The range of carbs my body seems to like best is 30-45 grams per meal. Should I accidentally ingest wheat, rye or barley-containing food, I will develop severe diarrhea, weakness to the point that I cannot get out of bed, and a flu-like feeling that may persist for multiple days. Even though I have trouble digesting vegetables, I cannot totally banish them from my diet because I will develop severe constipation requiring medication. So I try to eat pureed or canned or very small amounts of fresher veggies every other day. Going without caffeine causes headaches, but I limit myself to one Splenda-sweetened diet Coke, one glass of iced green tea, and one bite of dark chocolate (one-fourth of a serving) per day. I cannot tolerate aspartame or MSG. I drink approximately a quart and a half of water per day to stay hydrated. Sometimes this is pretty easy as I have bouts of extreme thirst. I have a water bottle by my side everywhere I go, but I must be especially careful to have something to drink with every meal in case I have trouble swallowing. Because I drink so much liquid, I need to have handy access to a restroom as often as once an hour. My last meal of the day has to be particularly easy to digest, like eggs with cream of rice or reduced fat cheese with gluten free waffles, and has to be three to four hours before I go to bed. If I eat something hard to digest late in the day or lie down too soon after my last meal, I will start vomiting. Most of my meals are microwavable or can be eaten with no prep as I don't have the energy to spend hours in the kitchen and don't possess the cognitive function to keep track of preparing several foods at once.

13. My tolerance to alcohol is now so impaired that one drink affects me like several; I'll get tipsy and sleepy for a number of hours. More than one drink will give me severe dehydration, headache, and a hung-over feeling that could last multiple days. So I only have one drink on my birthday and one on New Year's Eve and none the rest of the year. I also have reactions and intolerance to several medications. For instance, narcotics of all kinds cause vomiting. Many medications that cross the blood/brain barrier, such as anti-depressants, cause tics, tremors and continuous violent muscle twitching. Some medications have a side effect that is the opposite of what is intended; i.e., Benadryl makes me hyper and Sudafed is sedating. Other medications are effective initially and then suddenly stop working even when the dose is adjusted, like my body suddenly became immune to it. Still others, like anaesthesia, must be used at a much smaller than usual dose in order for me to tolerate it. Adhesives dissolve my skin.

14. My optimum cognitive function occurs after my first solid meal of the day, so that's when I make appointments by phone, handle finances, and use the computer. But just as getting enough sleep only reduces the severity of symptoms, doing mental tasks during my "ideal" window of approximately two hours only decreases the number and frequency of error; it can't eliminate the cognitive dysfunction. For instance, when I balance the checkbook, I have to use software and a calculator, and I still make mistakes! I cannot do multiple-digit math in my head at all if it requires carrying a number. I also transpose numbers, substitute a wrong number for a right one (like writing 0 when I mean to write 8), and mis-read what I have previously written, adding where I should subtract and similar errors. Writing unfortunately is not a great deal easier. As a former editor, proofreader and spelling bee competitor, I used to have an encyclopedic knowledge of grammar, vocabulary and effective writing. But now, I cannot see words in my head like I used to. I have forgotten basic rules of word use and cannot always tell when a word is mispelled, not the proper tense, etc. When composing original text, I leave out letters and words, transpose them and use incorrect words in place of the term I mean. I re-read what I have typed several times over before I publish it, but I still won't always catch the errors because my mind substitutes the right words for the missing or mis-used ones. In other words, they look right to me even when they're wrong. I have a great deal of difficulty at times getting what is in my head out and onto a screen before I either lose the thought or end up expressing it far differently than I mean. Writing by hand is more difficult for me than typing because it is so much slower and thus it is far more likely I will forget what I was trying to express. Also, when writing by hand, one cannot hit a delete button to correct errors as one goes along. Furthermore, my hand writing has become fairly illegible since I got sick, partly from hand pain and cramping, partly from mistakes, and partly because my hand simply refuses to do what my brain tells it to do. I suspect I may have lost at least 20 IQ points since I got sick. I can no longer write poetry. I will think of a metaphor, start to come up with suitable phrases to express it, and before I come up with more than one or two, I have forgotten the central point I was heading to. That "perfect word" that sums up what I mean, which used to come effortlessly, now either comes after I've finished what I wanted to say, or, more often, not at all. That is why it has taken me weeks to compose what you are reading now.

15. I cannot use the computer more than two hours without the development of or exacerbation of several physical symptoms. Sitting in any sort of chair with my feet on the floor will in time cause/aggravate edema below the knees, particularly in the left foot in the toes. If I don't elevate my feet after the swelling begins, they will lose all color and go numb. Shorter sessions at the computer can still aggravate my peripheral neuropathy, the most common scenario being sharp sudden pains, like someone trying to remove the top of my big toe with a can opener. Sitting in a computer chair too long contributes to lower back and hip pain. Excessive mouse use will activate a large trigger point at the right teres major/teres minor area. And I must be particularly careful how much I type. Bouts of continuous rapid typing exceeding two or three minutes cause serious carpal tunnel pain and hand cramping that once activated can persist for days, weeks or even months. If the overhead light is not approximately the same brightness as the monitor in front of me, I will get a migraine. And excessive staring at print on a monitor will cause pain in the eyes like needles being stabbed into them.

16. Lists have become an absolute necessity in life because I can only remember about three things in any one category. Any more than three, and I'm going to either forget some or all of them. It's like my brain is a grocery store checkout aisle with a three-item limit. I generally have to write things down as soon as I think of them if they are part of a list that going to be checked off on a future date because my attention span is quite short. As for remembering activities around the house, I have to put things where I will easily see them so I won't forget to deal with them. For instance, most of my medication is in large pill minders strategically placed, papers that need to go downstairs are put in one large pile on the countertop nearest the staircase, and items that have to leave the house with me are either in or with my purse. My purse itself is organized so that every important item has a designated spot, enabling me to see right away if I am missing anything. Bills must be paid immediately so that they won't become lost or forgotten. "Out of sight, out of mind" isn't just a saying with me, it's reality. If I don't use a label on the dishwasher that says "clean" or "dirty", I'll put the dirty dishes in with the clean and vice versa. Despite my ritualistic organization, I still do odd things, like putting silverware in the trash instead of the dishwasher, pointing my car remote at the unlocked mailbox, and putting the phone book in with the food. Or I'll have a semi-correct train of thought with the wrong outcome, like when I reach for a dead bolt lock on the kitchen door where there is none, forgetting that the living room door is the one with the dead bolt. I often walk into a room and discover I've forgotten why I went there. Or I'll go into a room and realize I intended to go somewhere else. Another result of my short attention span is procedural difficulty. I'll begin doing something that isn't too complicated, like taping a television show, and forget how to do it part way through. I often find myself speaking aloud, blurting out suggestions until I come up with one that sounds right and then talking my way through the rest of the procedure until I have completed it successfully. I am more likely to get something right if I sort it out verbally than if I just try to visualize how it's done. I feel as though I am a train that is traveling on defective or missing tracks, easily and frequently derailed. I am usually an excellent decision maker, but when I get derailed, my brain just seems to freeze up, and solutions to problems evaporate.

17. A lot of day to day activities that most people do automatically are either difficult, impossible, or too fatiguing for me to bother with. A simple shower can throw off my whole day, either exhausting me to the point I have to collapse on the couch or even making me feel faint, the effects of which will likely last until bedtime. If I have to leave the house, I usually skip the shower as a precaution and wait until I have no more commitments for the day. Sometimes if I am particularly unwell I don't take one at all. Getting dressed won't happen on a bad day. I generally don't have the energy anymore for fixing my hair, putting on makeup, shaving my legs, putting on complicated outfits (like dresses with pantyhose) or putting on lotion; these things are done only rarely now.

18. There are very few household maintenance activities that I can do unassisted. I am pretty much limited to daily dishes, sorting the mail/light clutter, and putting away my own clean laundry once it is brought upstairs. I must rest after about 15 or 20 minutes of activity; if I push too hard, I will become too fatigued to accomplish anything else that day and may have an exacerbation affecting subsequent days. I have very little grip strength in my hands and experience inco-ordination when I fling or drop items. I must avoid any sort of scrubbing or excessive reaching as these cause repetitive motion injuries such as carpal tunnel, hand cramps and back spasms. I generally limit how many times I use the stairs as I can get weak, dizzy or even faint. Squatting causes my feet to go numb. I cannot do any yard work. I cannot tolerate the smell of certain household products; prolonged exposure to them will cause migraine, burning sensation going all the way down my throat, cough, sensation of heaviness in chest. The smell of smoke will produce similar reactions.

19. I try to exercise my brain daily by watching quiz shows and attempting to answer the questions before the contestants do. My response time is much slower than it used to be. Often I will know the correct answer but will not be able to access the information in my head. Or I will say one thing when I mean another. And then there are times that I will just blurt out the correct answer and have no idea where it came from or that I even knew that particular fact. I fare far worse when learning new information, especially if I don't use it immediately and frequently. For instance, I bought a digital camera that had manual settings so I would have more photography options. I read the instructions over carefully and felt fairly confident about using it. However, a few days passed before I was actually able to try it out, and I discovered I had forgotten everything in the instructions, so I had to get them back out and read them again right before using the camera. I never was able to learn how to use the manual settings, and three years later, I still have to teach myself how to use the automatic settings every time I try to take pictures. Some information that I was able to remember easily before I got sick is now impossible for me to recall, like phone numbers of loved ones, their birth/death dates, etc.

20. Even activities that most people would normally find relaxing, like watching a movie, cause me mental and physical fatigue. When I am too mentally slow to even follow a simple plot, I will switch on the tv to something I have either seen before or that requires no real thinking, turn the volume down and only half watch it. Or I will flip through a magazine that is mostly pictures and doesn't require any reading comprehension. But even sitting on my couch has to be limited to no more than a two hour session as stiffness and soreness in my muscles and joints will worsen when confined to the same position. I will periodically get up and get something to eat, put a few dishes away, alternate reclining my feet and regular sitting or stretch while on the couch. But I cannot lie down flat before bedtime as it will impede my digestion and aggravate my reflux and cause nausea perhaps to the point of vomiting. Other causes of mental exhaustion include strong emotions, either positive or negative, or thinking really hard about something. I think I get mental overload, perhaps from adrenaline? I am willing to risk a certain amount of mental fatigue for laughter and excitement as they are essential to quality of life, but I do limit how much emotional investment I give to negative stress. I acknowledge the negative, perhaps express how I feel about it, and then either try to figure out if there is something I can or should do about it or go on to something else. I unfortunately have had to give up a lot of social interaction with friends and relatives because I no longer possess enough mental energy to focus on having good quality relationships with them. This doesn't mean I don't care, it's just that I have to keep my relationships low maintenance along with everything else.

21. There are times when I have no indication that I have over-exerted myself in any way until hours or even a day or two has passed since the over-exertion occurred. It is very difficult to pace my life when I don't know how much is too much. In addition to the exacerbation in exhaustion, I will experience a huge surge in pain and a marked increase in cognitive dysfunction that may persist into subsequent days. And then there is what I call "the sledgehammer of fatigue", in which I go from a fairly steady energy level to zero, with no discernible cause at all, as suddenly as if someone conked me out with a sledgehammer. I'll feel as if I were a working electrical appliance that was suddenly unplugged. When the sledgehammer hits, I have to stop whatever I'm doing immediately, go straight home if I am not already home, and collapse on the couch until my situation either improves or it is time for bed.

22. My body's thermostat appears to be broken. When I feel too warm, my edema will worsen, I seem to have more trouble thinking clearly, and I can easily develop symptoms of heat exhaustion. I develop small fevers for no apparent reason. I have Raynaud's in my hands, feet, nose and ears, so even the slightest sensation of being cold will make these areas become icy to the touch. Prolonged exposure to cold will cause these areas to turn white and burn painfully. My fingers will also turn blue. When I warm up again, these areas will turn bright red. My right hand seems most adversely affected by Raynaud's. My perception of being too hot or cold doesn't always coincide with reality. I can catch a chill when it's 80 degrees or feel feverish when it's 65 degrees. The worst culprits are excessive indoor heating or air conditioning. If I'm outdoors when it's 90 degrees and I go into a room that has been artificially cooled to 70 degrees, my Raynaud's will kick in. If I'm outdoors when it's 40 degrees and I go into a room that has been artificially heated to 75 degrees, I will sweat, become irritable and feel as though I've been poisoned. Excessive heating and air conditioning also cause congestion, burning and itching in the throat which can turn into something resembling a cold/flu and last multiple days. There are times I am both too warm and too cold at the same time, sweating and shivering with no way to get comfortable, a feeling I can only equate to having a fever during the flu. My base body temperature is low, averaging only 97 degrees.

23. I have had episodes that resembled a stroke. In these episodes, I got a sudden, dagger-like pain on the right side of my head, starting at the top of my skull and going straight down through my head. I would develop all the usual migraine symptoms including sensitivity to light and sound, vomiting, etc. These were accompanied by slurred speech or inability to speak altogether and great difficulty with cognitive function, as though I were trying to think through mud. I also developed persistent weakness in the legs and/or dramatic increase in peripheral neuropathy with stocking and glove numbness. Sometimes these would only be on one side of the body. These episodes have lasted from a few weeks to months on end with the symptoms fading away gradually. I have noticed that these are more likely to occur during late spring or early summer and that the symptoms increase with exposure to heat, but I cannot honestly say whether hot weather causes them.

24. I have two kinds of insomnia. The first is delayed sleep onset, where it will take me an hour or more to fall asleep after climbing into bed. I am usually too fatigued to do anything even if I am not actually asleep, so I simply relax the best I can and wait for sleep to come as I know it will eventually. I can always tell when I'm about to fall completely asleep as I will develop a body wide chill. Usually the last thing I can remember before dozing off is pulling the covers all the way up to my chin. There are times that right before I go into actual sleep that my entire body will suddenly jerk violently like I've been startled. Sometimes this will be significant enough to put me fully back into wakefulness, and I'll have to wait again to doze off. Other times, either with or without the body jumping, I'l yell out something incomprehensible. The other type of insomnia is when I'll wake up after a few hours, usually because of nocturia and/or night sweats, and then I won't be able to go back to sleep. I find that doing as little as possible to rouse myself for the potty breaks, such as leaving the overhead light off and only using night lights (trying to move in complete darkness unfortunately exacerbates my vertigo), using not even one more step or gesture than necessary and thinking about what I was just dreaming to help somewhat. For the night sweats, I shove the comforter aside but keep it within easy reach for when I become chilled again. I also have periodic limb movement disorder, uncontrollable spasms of the arms and legs during sleep, and this causes me to awaken or become nearly awake frequently. I wear an eye pillow when in bed so that when I do wake up, I can't look at the clock, and because all light is blocked out, it fools my brain into thinking it's the middle of the night (even when it's not), making it easier to go back to sleep. I have frequent, unusually vivid dreams and nightmares with recurrent themes such as trying unsuccessfully to go back to work. If I am in a significant amount of pain while trying to sleep, I will often dream about the pain, like the other night when I had a lot of hand pain and dreamt that my fingers were being sliced with a box cutter. Because I must spend so much time in bed, I must use the most comfortable mattress and pillows possible, the memory foam kind. The skin on my face is so sensitive that pillowcases seem scratchy, so I must put a velour towel over my ergonomic neck pillow. If I have to sleep on anything other than my foam mattress, I will awaken the next day feeling deeply bruised on every body part that touched the mattress. Sometimes this bruised feeling will last most or all of the rest of the day.

25. Other random symptoms:
• low blood pressure readings, as low as 80/60, when my average is usually about 120/80
• slow pulse, as low as 50 beats per minute when my usual resting heart rate is 70
• itching, spasms deep in ear canal
• attacks of body wide skin itching
• frequent sore throats, feeling like I'm coming down with something
• swollen, painful lymph nodes in neck
• hair loss
• sudden attacks of feeling weak and wobbly for no apparent reason
• chronic fungal infections of the sinuses with a yellow furry stripe down the center of my tongue
• if I catch someone's cold or virus, I'll be much more symptomatic for a much longer period of time than the person who had it before me
• severe spasms of the left side of my neck that cause me to be unable to turn my head
• extreme tooth sensitivity; will experience this even a year after a root canal
• chronic mouth lesions
• incontinence from sneezing, coughing
• frequent rashes, especially on arms and face
• splitting and peeling of skin, especially on fingers and lips
• weight loss and/or gain seemingly unrelated to diet/activity level
• adenomyosis
• TMJ type pain
• pain reaction in all 18 fibromyalgia tender points

Rave of the Day for June 16, 2007: 

Popping in for a quick funny. Thanks to Dr. Karen for this one....

Periodic Table of Criminal Elements

Am leaving for Denver tomorrow. Am also almost done with my documentation project, although I sorta gave up at the end and lumped together a bunch of symptoms with no description.

Will be awesome to see the mountains again. Oh, and my family too, heh heh.

Wednesday, June 13, 2007

Rave of the Day for June 13, 2007: 

I can't remember if I've posted this joke before, so if I have, please enjoy the re-run courtesy of Pete. I figure it was time for a few giggles....

What Religion is Your Bra?

A man walked into the ladies department of a Macy's and shyly walked up to the woman behind the counter and said, "I'd like to buy a bra for my wife."

"What type of bra?" asked the clerk.

"Type?" inquires the man, "There's more than one type? "

"Look around," said the saleslady, as she showed a sea of bras in every shape, size, color and material imaginable. "Actually, even with all of this variety, there are really only four types of bras to choose from."

Relieved, the man asked about the types. The saleslady replied: "There are the Catholic, the Salvation Army, the Presbyterian, and the Baptist types. Which one would you prefer?"

Now totally befuddled, the man asked about the differences between them.

The Saleslady responded, "It is all really quite simple...The Catholic type supports the masses. The Salvation Army type lifts the fallen, The Presbyterian type keeps them staunch and upright, and The Baptist makes mountains out of mole hills."

Have you ever wondered why A, B, C, D, DD, E, F, G, and H are the letters used to define bra sizes? If you have wondered why, but couldn't figure out what the letters stood for, it is about time you became informed!

(A} Almost Boobs...
{B} Barely there.
{C} Can't Complain!
{D} Dang!
{DD} Double dang!
{E} Enormous!
{F} Fake.
{G} Get a Reduction.
{H} Help me, I've fallen and I can't get up!

They forgot the German bra.

Monday, June 11, 2007

Rave of the Day for June 11, 2007: 

Just got this in the monthly newsletter for A Hummingbird's Guide (in my Links list). Jodi Bassett has now ventured into the world of YouTube....

How does Myalgic Encephalomyelitis affect my life?

It brought tears to my eyes, finally having a face and voice to go with the words I've been reading for years. It also made me appreciate what quality of life I still possess.

Still working on the fibromyalgia documentation. I am perhaps a little over a third of the way done; I was hoping to finish it before I go to Denver, but seeing as how that's only a week away, I don't think it's likely.

At least I'll be leaving the house.

Saturday, June 09, 2007

Rave of the Day for June 9, 2007: 

Found this on Ricky Buchanan's LiveJournal site. Watch carefully!

The Amazing Color-Changing Card Trick

In others news, I am STILL working on my fibromyalgia documentation! It is taking FOREVER! I would say I am perhaps a third of the way through.

Tuesday, June 05, 2007

De-tour, de-tour boss...... 

The "detour" from regular blogging I mentioned several days ago, the detailed documentation of what it feels like to have fibromyalgia, is underway. I of course put it off for awhile, partly because I managed to catch whatever virus Dan got from a co-worker and so was feeling pretty much like death warmed over. But then I got word from my primary care doc that my long-term disability insurance company has contacted her to fill out paperwork regarding my health status, and that pretty much lit a fire under my butt.

I started with what I thought would be a straightforward symptomology, first just the ones off the top of my head, and then comparing it to symptom lists I found on Fibrohugs and A Hummingbird's Guide (both on my Links list) and adding the ones I had in common. Before I knew it, though, my "simple" notations included over 95 symptoms! Obviously, I will do some consolidating so my documentation doesn't take me a year to complete.

Then, last night, I started trying to go into detail about what it actually felt like to be unable to get out of bed. It was surprisingly much more difficult than I expected, and I'm afraid I no longer possess the creative writing skill to communicate it effectively. But I will forge on anyway, figuring it will either get easier, that my descriptions will get better, or that I will at least get basic points across to make my time invested worthwhile.

I'm shocked that I got so rusty so fast. But then, I really shouldn't be. I had to give up poetry writing a few years ago when I lost the ability to maintain a consistent metaphor long enough to construct a proper framework around it; I mean, I could think of a metaphor, but I couldn't find more than one or two things to say about it, and usually, the result was rather less than eloquent.

Of all the things I've lost, I miss my mind the most.

Rave of the Day for June 5, 2007: 

This is probably not PC at all, which might explain why I like it, heh heh. It's a game which can be played without any special equipment. Thanks to Robert for sending me the link from our controversial buds over at Adult Swim....

Bible Fight

I must say I particularly enjoyed kicking Satan's butt.

Sunday, June 03, 2007

"Nobody move. I've dropped me brain!" 

Last Saturday, I decided to have popcorn for breakfast and set foot in an actual movie theatre for the first time in a year to view "Pirates of the Caribbean: At World's End". Avast! Thar be spoilers ahead, mateys!

Last we saw the charismatic, incomprehensible Captain Jack Sparrow in part 2 of the "Pirates" trilogy, he'd been eaten by a Kraken and was presumed dead. But if we learned anything in the previous films, it was to not presume anything. Multiply this sentiment times 100 for "At World's End".

Jack is in fact dead, but is still a captain of a ship in the underworld. Unfortunately, and to my great amusement, the entire crew is populated with various versions of him. And he seems to have run aground, or has he?

Meanwhile, Elizabeth Swan and her fiance, William Turner, have gone to Asia to attempt to forge an alliance and secure a ship with which to sail to the end of the world to retrieve Jack. There is a hilarious scene in which Miss Swan is ordered to surrender any weapons she may have. Turns out she is armed to the teeth, which reminded me of "Miss Congeniality" when Sandra Bullock had practically an entire armory hidden in her evening gown.

And those pesky British, under the guise of the East India Trading Company, have decided to completely wipe out piracy. Not gonna happen if the pirates keep returning from the dead. But they give it the ol' college try.

After the voyage to world's end, the movie becomes quite confusing. Pretty much every cast member has some sort of agenda to fulfill. Plus, there's a map containing hidden messages to contend with.

I did enjoy the international pirate leaders' meeting featuring a female captain and a brief glimpse of Keith Richards looking very naturally pirate-y. In a surprise move, Miss Swan is elected the leader, which is consistent with her not being a helpless damsel, a concept I appreciate. There was some business about nine (?) pieces of eight and how they needed to band together to beat the Brits.

While I found "At World's End" to be interesting and entertaining, I would have preferred more swordplay, more comedy and less time spent on needless subplots. I thought it was inferior to the first two movies. But one could do worse than spending a few hours gazing upon Johnny Depp and Orlando Bloom, heh heh.

Perhaps it would improve accompanied by a bottle of rum.

Saturday, June 02, 2007

Rave of the Day for June 2, 2007: 

Newsweek has done a piece on novel ways to treat pain. It mainly focuses on chronic pain caused by injuries sustained by veterans, but fibromyalgia is mentioned....

New Research into Pain Treatment

The new narcotics sound promising, but I bet I still wouldn't be able to tolerate them due to my gastroparesis unless they come up with something that doesn't affect the digestive system, unlikely with an oral med. The nerve blocks are probably awesome for those with pain in specific areas (Dan is interested in their use in stopping chronic migraine), but I don't think they would be practical for bodywide pain conditions.

Still, the progress is encouraging.

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