Thursday, June 30, 2005

Hit me baby one last time..... 

Yep, there were only five shows. Bummer. I thought of all kinds of artists it would have been fun to see again.

Gotta say from the outset that no one was outstanding tonight. Made it harder to decide on a clear winner. And again there were surprises.

First up was Juice Newton. She did "Queen of Hearts". She sang it reasonably well, looked relaxed and professional. She is still physically fit, and has cut off her hair and wears it blonde and spiky, which is actually a very good look for her. So I had nothing against her, but she wasn't my favorite.

Animotion was next with their hit "Obsession". The female singer - I can't remember her name - had dyed her hair platinum, black and red, which looked really good, but she teased it into a ridiculous looking '60's-era bouffant. Overall, they still sounded good but not great, but they seemed to really get into camping it up, which made it made it more fun.

Shannon did her only hit that I know of: "Let the Music Play". She still sings fairly well, but after hearing Thelma Houston belt it out last week, it seemed slightly lacking. And she stopped singing at one point to do something that looked like pushups??

PM Dawn did their hit song that I never knew the name of: "Set Adrift on Memory Bliss" (I think). Their performance was adequate, but I always found the sample of Spandau Ballet's "True" oddly annoying.

One of the bands I was looking forward to seeing the most came on last. Missing Persons did "Words". The band itself still sounds great, but Dale Bazzio's voice has faded somewhat. She looks great, though, having grown out her hair and keeping the trademark platinum with pink and blue streaks. I was disappointed that they only got to sing half their song; might have made it easier to judge.

Onto the covers: Juice Newton selected an Ashley Simpson song, "Pieces of Me". I never really cared about the song one way or the other, but Juice's interpretation of it didn't impress me. Seemed rather flat.

Animotion made an interesting choice: "Days Go By" by Dirty Vegas. Good song, good beat. The band carried the singers well, and I liked the singers' work on this one better than on their hit. Plus they seemed to be having fun, which always earns points in my book. Enjoyed it enough to make Animotion my choice for a winner by a slim margin.

Shannon did "Foolish" by Ashanti. She did it better than she did her own hit, which surprised me. But she didn't really seem distinctive in any way compared to some of the other female vocalists who have been on.

PM Dawn picked something rather unexpected: Puddle of Mudd's "Blurry". I was afraid they'd try to turn it into a rap piece, but was relieved that they actually harmonized and sang it very well. I was mega impressed. The audience picked them as the winner, and I have to admit they were a close second to Animotion.

Missing Persons actually picked a good song for them: Kylie Minogue's "Can't Get You Out of My Head". The band was hot, but Dale Bozzio's voice kept cutting out, so it was a bit disappointing. It did redeem their cut-short version of "Words", though.

My pick for the series: I think Howard Jones was the best out of the five shows. He has an excellent voice, timing, emotion and plays the piano well. He still comes across as very talented.

Worst performer of the series: Vanilla Ice, even though the audience picked him as the winner the week he was on. He had no timing, seemed to have trouble remembering his own lyrics, and didn't even try to make what he did palatable. I still like his tatts, though.

Well, now what am I gonna do for music on tv? I miss MTV2 and VH1's "Behind the Music". Guess iTunes will have to suffice.

What are words for, when no one listens anymore......

Rave of the Day for June 30, 2005: 

Spending hours pouring over the enormous list of reasons why I'm too sick to work is damned depressing. I was in desperate need of cheering up, and this website did the trick:


I like this one so much I think I'll add it to my Links list.


Tweaking my documentation..... 

Spend quite a bit of time tonight touching up the info sheet for Social Security, my daily activity report to give to my rheumatologist and the psychological profile I'm giving to my therapist. Added a paragraph about the hazards of looking healthy. Am quite surprised that I didn't think of this last night. Anyway, here's what I added:

One thing that absolutely makes coping more difficult is the fact that I appear very healthy on the outside. I am young looking, articulate, intelligent and only a few pounds over my ideal weight. Therefore, the general population and even a few doctors are surprised that I am ill and are occasionally disinclined to believe it. I am not saying that no one believes me, but I am saying that it is more difficult for me to be taken seriously than someone over 50 with my symptoms or someone who is obviously frail.

Wednesday, June 29, 2005

Mental health report..... 

After I spent part of a third day revising my report on daily activities, I decided I should follow up with an update on how I'm coping mentally. The results of neuropsyche exam I had in October are something I need to provide to Social Security to show evidence of my cognitive dysfunction, but I'm really worried about their psychological evaluation as it provided a distorted view of my mental status. In my opinion, the main problem inherent in "personality" profiles is that these are yes/no questions that do not allow for a physical origin for such behaviors as sleeping more than usual, spending less time with friends, doing fewer things that you enjoy, etc. I had to answer in the affirmative on these questions, so it appeared that I was depressed when the real reason was that I'm too sick to do as much as I'd like. But when I was asked if I was happy, I answered in the affirmative because I feel that it's true. That was interpreted as me being in denial. And when I answered in the affirmative to questions such as whether I considered myself to be less healthy than most people and whether I was concerned about my physical functioning, that was interpreted as somatization disorder! Problem is, if my long-term disability company gets a hold of this report, they will decide that my illness is mental rather than physical and deny coverage. The only way I can think to provide a more realistic view of my mental status is to provide my thoughts on this to my psychologist and see if she can write a letter or something with her professional opinion. I mean, if I do have mental problems, so be it, but I don't want them to be distorted into something they're not because that could jeopardize further treatment and/or benefits. So the following is what I will give to my psychologist on Thursday:

Thoughts on my Psychological Functioning as of June 2005

I have made a conscious effort to maintain a positive outlook and to avoid over-reacting to stressors in my life. This is because I found that staying physically tense when stressed aggravated my already existing pain and fatigue. I can no longer spare the energy for frivolous worry or anger out of proportion to a given situation. This has enabled me to cope with the worsening of my physical health. This may appear to an observer that I am in denial of my shortcomings or perhaps am even inappropriately cheerful. I do realize that I have shortcomings, but I prefer not to dwell on them if they are not something I can improve. My cheerfulness is a coping mechanism as it produces modest pain relief. I also view this as a healthy psychological outlook.

I am frequently told that I must be depressed because I have fibromyalgia. I have experienced depressive episodes, but they were too brief to fit the definition for clinical depression until recently. Since I have gone on medical leave from my job in February, I have experienced periods of sadness and self-esteem issues more consistent with clinical depression. I believe most individuals would experience a coping crisis if faced with no longer being capable of sustaining themselves financially. However, this depression is a direct result of chronic illness, not a cause of my disability. I have in response to this coping crisis sought appropriate psychological counseling.

It has been suggested that I may be preoccupied with my physical health. This may indeed be so as it is impossible to ignore. The sum total of my ailments affect my sleep, my digestion, my mobility, my ability to express myself, my activity level, my pain tolerance, my muscle and joint function, my socialization skills, my ability to follow instructions, my energy levels, my independence, my ability to eat and swallow, my bowel habits, my memory, my tolerance of heat/cold, my hearing, my circulation, my teeth, my strength, my ability to use a computer, my sex life and even my breathing. I do tune out many of my physical symptoms but cannot deny that my physical health significantly hampers my ability to function.

My family relationships are not strong, but neither were they before I became ill, so little has changed. I do have a relative by marriage who has been especially unsupportive since I became ill, but that is probably common in families where someone has a chronic illness. My friendships themselves have changed little, but I cannot spend as much time with them in person as I used to due to physical illness. However, within the past few months, I have attended a local science fiction convention, gone to lunch and have gone to movies with friends as well as attending the baby and bridal showers and birthday parties of relatives, so not everything revolves around my health. I have not lost any close friendships due to illness, and my husband is extremely supportive of me, so overall I am not terribly bothered by the lack of familial support. At this time I do not believe any family members are interested in changing their relationship with me. If any of them expressed an interest in counseling to improve our relationship, I would be willing to do that.

Early on when I first became ill, it was suggested to me that I could be somatizing at least part of my physical illness. I took this into consideration and began to ignore all my physical symptoms in the hope that in time they would either lessen or go away entirely. I even attempted hypnosis to see if my physical symptoms would disappear in the absence of conscious control over my functioning. Hypnosis was unsuccessful as was the ignoring of my symptoms for a period of three months. I do not believe I suffer from somatization disorder as I am already aware of the link between physical reaction to stress and elevation of pain and fatigue and do my best to not dwell on stress.

Tuesday, June 28, 2005

Warning: this may be more than you want to know..... 

Was thinking about what will happen if I begin the process of filing for permanent disability after my appointment with the rheumatologist next week. Social Security typically wants to know just how much you can and cannot do on a daily basis, having you fill out what is known as a functional capacity form. They will also expect my doctors to give their expert opinion as to my abilities. While I believe I've been pretty thorough listing my symptoms and their severity, I don't think anyone fully comprehends the sheer number of limitations I must face every single day. I decided the only way to be certain that my doctors know the full extent of my illness was to outline in excruciating detail a typical day for me with particular attention to what I am no longer able to do. I realize some of this information is probably more personal than I should be relating in a blog, so stop here if you're not prepared to read the gory details. But I do feel it is important to tell the whole thing without holding back because it demonstrates just how pervasive chronic illness can get. Also, it took me two days to write, and now I'm utterly exhausted and don't feel up to editing it to make it palatable. So here goes:

A Typical Day as of June 2005

I usually get up for the day after an average of 10 hours of rest. Not all of this time is spent sleeping due to insomnia, pain and muscle spasms, but I need to lie down for that long to get the swelling in my feet and legs to go down. The rest is also important in reducing the amount of daily fatigue. I won't have a fighting chance at accomplishing anything if I am wiped out before I start. However, I cannot stay in bed more than 12 hours because the muscles in my feet and legs start cramping up and I begin to feel hypoglycemic.

Getting out of the bed is tricky as my limbs might be numb, stiff or clumsy or some combination of the three. Sometimes I can't get out under my own power and must enlist my husband's help. On attempting to stand, I usually experience a great deal of muscle tightness in my legs and feet due to the hours of twitching overnight. So those first footsteps are excruciating unless my feet are numb. Vertigo and nausea upon first arising is pretty much a daily occurrence.

Once out of bed, I shuffle to the bathroom. It is common for me to have a bowel movement at that time, and if it is a strenuous one, I have to return immediately to bed to rest for at least fifteen minutes and sometimes for as long as two hours. I have no choice but to rest at times like that because I am too weak and dizzy to walk around. I have run into walls during these weak/dizzy episodes and injured myself.

My next task is to remove the crust from my eyes that has accumulated overnight and apply prescription eye drops. If I have gotten an eyelash stuck to my eyeball overnight, I must first use an eye wash to rinse it free and then have to wait 15 minutes to put in the drops. I also keep non-prescription drops handy wherever I go; the most frequent need for them during the day is when reading, watching tv, looking at a computer monitor, and anytime I'm near fans, air conditioning or heat vents.

Next I must drain and disassemble my humidifier. If I don't use one while I sleep, I develop nosebleeds from the dry air. I also must carry water with me throughout the day to prevent sudden dry coughs or choking because my throat is too dry.

I then sit on my bed with my water bottle and take medication for my thyroid, diabetes, reflux, and dry mouth. I also take vitamins C and E, co enzyme Q10, MSM and glusosamine/chondroitin for immune support and modest pain relief.

By now, my dog wants me to go downstairs and let him out. I must use extra caution on my first venture down the stairs as I am usually still stiff and/or numb in my limbs. More than once I have tripped and injured myself. On some occasions my husband must help me get downstairs.

At this point, if I'm going to exercise, I must do so relatively soon while I still have some energy. I go to an aquacise class twice a week for people with arthritis. Two other days a week I try to do 20 minutes on a Gazelle machine (a non-impact glider) in my home. Exercise is painful and exhausting, but I force myself to do it four days a week. I must skip the exercise, though, if I have too much numbness in my feet or legs to reliably stand. And I don't have the energy to do both exercise and an appointment on the same day, so on days I see a doctor, no workout. I cannot do activities such as walking the dog, riding a bike or lifting even light weights. If something weighs as much as a gallon of milk, I must use both hands to carry it. My maximum walking distance without pausing to rest is one to two blocks depending on energy and joint stiffness.

I eat a health bar or drink a Boost immediately after exercise because otherwise I will develop hypoglycemia symptoms. I also must rest for at least fifteen minutes or sometimes as long as a few hours. It is not uncommon for me to doze off while resting after exercise.

If I need to make phone calls, I try to do them a little while after exercise but before too much cognitive dysfunction sets in. During my "foggy" times, I transpose the numbers I'm dialing, forget who I've called when they answer, forget basic information like my own address, forget what I wanted to tell someone or press incorrect numbers in voice mail systems. More and more frequently, I find myself doing these things even when I'm feeling pretty clear headed.

If the outdoor temperature is under 90 degrees, I might attempt some light yard work. This usually consists of pulling weeds in a seated position for no longer than half an hour. I cannot mow the lawn, rake leaves, dig or shovel. I cannot squat or kneel for more than a minute or so, and must use caution working from a standing position because it frequently results in back strain or hamstring injury. Even 30 minutes is sometimes too much yard work, though, and I end up with carpal tunnel, back or hand pain in spite of precautions. Sometimes this pain persists for multiple days afterward.

If I do any work in the yard, I must rest immediately upon coming indoors because I am too light-headed and exhausted for anything else. It usually takes between a half hour and two hours to feel up to climbing the stairs to the bathroom to take a shower. Before I shower, I do a sinus rinse to clear away any mucus or dried blood in my nose. I have a grab bar by the tub to make it easier for me to climb in the tub. Sometimes my husband has to help me in or out of the tub. I generally cannot take baths because it is too painful to sit in the tub and too difficult to get out again, so I rely on showers. The warm water feels good on my sore muscles and helps relax them, but the process of showering can also be quite exhausting, sometimes to the point that I must sit on the toilet right after and catch my breath because I'm too wiped out to walk to the bed in the next room. I really should apply lotion to my dry cracked skin after a shower, but I seldom have the energy to do this. I also skip drying my hair or putting on any makeup most of the time because of the effort it takes. I frequently have to rest awhile after a shower before I can find the energy to get dressed.

Here is usually when I eat my "big" meal for the day. If I am going to eat meat and/or fresh veggies on a given day, this is when I do it because it will take the rest of the day to digest them due to my gastroparesis. A lot of days my remaining energy goes into cooking this meal. I must carefully calculate the amount of carbs, protein and fats at every meal due to the diabetes, and I cannot eat any wheat, rye, barley or oats due to gluten intolerance. I usually check my glucose levels before and after this meal.

With this meal, I take medication for dry mouth, thyroid, and inflammation. I also take calcium/magnesium to prevent muscle cramps, milk thistle for liver support, chromium picolinate to help with the diabetes, pharmaceutical grade fish oil as a supplemental anti-inflammatory, grape seed extract for immune support, papaya extract to aid digestion, acetyl-L carnitine, and more MSM and glucosamine/chondroitin.

Unfortunately, the time I am most likely to doze off is within an hour of finishing my big meal. I cannot lie down after eating because I must rely on gravity to aid in digestion. So what usually happens is I fall asleep siting up on the couch. If I did a workout, yard work or anything similarly fatiguing that day, I may be asleep for about an hour and a half.

I am usually able to put my dirty dishes in the dishwasher, but I have trouble washing dishes by hand, particularly items that need scrubbing like broiler pans. I usually end up soaking the difficult to clean items, and my husband does them. I can do simple de-cluttering in the house (sorting papers, etc.) but can only rarely dust, wash clothes, or wipe down countertops, and if I do those things, I usually experience increased pain and fatigue for multiple days afterward, even if I take rest breaks every 15 minutes or so. I cannot vacuum, mop, or scrub bathtubs or toilets as these activities usually result in back strain.

My next meal is usually a gluten free frozen dinner as I generally don't possess the energy to cook two meals in a row. Sometimes I'll add some fruit, but nothing too difficult to digest.

What I do after the meal varies according to how I feel. If my lymphedema isn't bad and I don't have a migraine, I will go upstairs and spend some time on the computer. I use the computer for all correspondence as it hurts my hands less to type rather than write longhand as long as I keep the messages relatively short. I must rely on computer spell checks as I frequently forget how to spell words now even though I was a state spelling finalist as a child. I handle all my finances on the computer since I can no longer do math well enough to reliably fill out a checkbook register. I double and sometimes triple check my figures against a calculator and/or financial software. I usually listen to music while on the computer to distract myself from the tinnitus in my left ear. I have to stretch frequently and avoid using the mouse too much when I'm on the computer. And I have to take breaks if I'm typing more than a couple of paragraphs. Sometimes I inadvertently doze off at the computer.

If my feet become swollen to the point I can't feel my toes, I go downstairs to the couch and elevate my feet. I will then read if I have sufficient comprehension. But if I don't understand what I'm reading, lose my place frequently and have to look at the same paragraph over and over, I will have to save the book for another day. Before I got sick, I used to read about a book a week, would have up to six going at once and could quote back much of what I had read. Now it can take me a few months to get through a single book, and I can't read more than one at a time. More than once recently I have gotten halfway through a book before I realize that I've read it before. I have to be careful of neck, arm and hand strain when reading.

If I have a migraine, I won't be able to read or use the computer, so I'll turn on the tv to an interview or something where I don't have to look at the screen very much. Medication doesn't work on these headaches, so I have to rely on topical remedies and simply wait until bedtime and hope I can sleep it off. My migraines last anywhere from about four hours to multiple days on end. One of my migraines persisted almost continuously for two months.

My last meal of the day consists of either eggs and cream of rice or gluten-free waffles because these are easy to make and to digest. If I eat something high fiber, high fat or highly acidic late in the day, I will wake up vomiting in the middle of the night. I have to stay up three to four hours after my last meal of the day to avoid this problem as well. So if I don't time my meal carefully, I can end up having to stay up much later than intended.

I take a sleep preparation about a half hour before I need to go to sleep. I take Lunesta if I haven't got any early appointments the next day, or a valerian root supplement if I have to be alert early the following day. If I take nothing, I won't fall asleep for at least an hour and may continue to awaken as frequently as every 20 minutes during the night. Lunesta helps me sleep a solid four hours before I have to get up and use the restroom, and then I can usually get back to sleep afterward, but my mental clarity isn't good for about 12 hours after I take it. With valerian root, I wake up as frequently as once an hour, but it's better than no sleep at all. One reason I wake up so frequently some nights is that I have difficulty rolling over in my sleep and pain awakens me when I'm stuck in one position for too long. This is despite a good quality mattress and my efforts to use good sleep posture. I have actually injured my back and my shoulder in my sleep.

I take medications at bedtime for estrogen therapy, dry mouth, allergies, an immuno-modulator and more prescription eye drops. I also take a multi-vitamin and more calcium/magnesium, MSM, glucosamin/chondroitin and papaya extract.

Mouth care at bedtime can be complicated. I use a special toothpaste for dry mouth, floss, a water pik, and a special fluoride treatment to protect my teeth which are decaying from Sjogren's. Then if I have mouth lesions, I must apply a steroid paste to them. If my tongue is cracked, I use a saliva replacement on that. Finally, I apply ointment to my lips so they won't crack and bleed overnight.

My bedtime ritual is not quite complete at this point. I must set up and run a humidifier in the bedroom, and if I have vaginal itching from extreme dryness, I must apply a moisturizer there. I place my water bottle on the headboard so I can sip from it during the night, and put mouthwash on the headboard if I took a Lunesta because it causes an unpleasant taste in my mouth. I adjust the covers so that I can throw them off if I get night sweats or pull a blanket on me if I get chills as I often get both in the same night. Now I'm finally ready to go to sleep.

Monday, June 27, 2005

Beauty soothes the beast..... 

Ricky Buchanan had a journal entry on her website ("Not Done Living" on my Links list) today about beauty that surrounds us every day. She was able to see this beauty even when confined to a single room. Reminded me about the importance of appreciating what I do have rather than pining for what I've lost.

She went on to challenge her readers to describe what is beautiful in their lives, so this is what I told her:

"My husband. I know that may sound strange, but he really is a beautiful person. It would be much harder to cope with chronic illness without his unfailing love and support.

"My sweet pup. He is the most empathetic creature I have ever met, probably because he has arthritis and allergies like I do. He is quick to comfort me when I cry. His fur is unusually baby fine and soft for a springer spaniel.

"My computer is beautiful because it is my link to some of the most amazing people in the world. Also because it provides music and other much needed diversions from illness. And it has the software I need to express myself creatively, which is of prime importance to me.

"My home is beautiful, like your room is, not because it's the fanciest thing in the world, but because it reflects my personality and that of my husband's. When I am too ill to venture outside, I have sufficient books, movies and music to keep my little brain engaged. And my home is filled with photos of places I got to visit when I was healthier and people who are important to me.

"The butterflies who visit my back yard are beautiful. It is tiger swallowtail season where I live.....these are giant yellow butterflies with black tiger stripes. They always remind me of my mom because I saw dozens of them the summer after she died. I also enjoy the monarch butterflies that migrate here in the spring.....they are orange with black stripes.

"The miniature lilac bushes in my back yard are beautiful when they are in bloom. And the smell of the blossoms is one of the best in the world. And purple is my favorite color."

I must be doing better than I thought, to come up with so many things. Beauty may be in the eye of the beholder, but first one must make the effort to behold.

Sunday, June 26, 2005

A pirate's life for me and other daydreams..... 

Promised a friend that tonight we would see a movie. Unfortunately, nothing was playing in the theatre that we hadn't already seen that seemed promising, so we decided to just watch a DVD. We got some Cal/Mex fast food (burritos can be gluten free if you have them put the contents in a bowl and leave off the tortilla) and watched "Pirates of the Caribbean". I forgot just how much I loved that movie! Johnny Depp's Keith Richard imitation was soooo over the top! And Orlando Bloom.....well, I don't understand why the female lead doesn't fall for him the minute she sees him, but that's just my bias. My friend and I had a good ol' time, shouting "Arrrrgh!!" at all the appropriate (and a few inappropriate) moments. I wanna be a pirate, even though I probably couldn't heft a sword too well. Sort of a romantic notion, sailing the world, beholden to nothing except the pursuit of treasure. Not that different from me wishing I had a Harley, really. Today's bikers are yesterday's pirates, if you think about it. Such a sense of freedom, open road or open seas. And I want Orlando Bloom's hat that he wears at the end of the movie, the one with the powder blue feather on it. Good thing Dan finds me amusing; other husbands would probably be very annoyed with a wife that walks up to them brandishing a butter knife as if it were a sword and declaring "Avast!".

Having real trouble writing any poems of my own; it's not that I'm not inspired, but I lose my thoughts somewhere between idea and the act of writing them down. Ironically, I have a half finished poem right in front of me now; believe it or not, it was about the worsening of my cognitive problems! I'm trying to decide if that's funny or sad or both.

I've been spending a lot of time reading the journals of people I admire. I guess I'm trying to distract myself from the fact that I'm not coping well by finding examples of people who are. What has happened is that I have lost my sense of direction as far as life goals are concerned, not that I was ever that ambitious, but I was at least reliable. Now I'm facing no career, no income, no vacations, very little in person interaction. That wouldn't be so bad if I hadn't also lost a great deal of my creativity and intellect. I know this sounds melodramatic, but I feel as though I'm in danger of dwindling into nothing. I guess the only remedy for this is time. And I appreciate the good fortune that I still have, which includes a healthy marriage, friendships with extraordinary people, excellent health care, and the ability to rarely be bored.

I guess there's only one thing to say at this point: Avast!!

Friday, June 24, 2005

Rave of the Day for June 24, 2005: 

A really moving and (for me) relevant poem, courtesy of the Journal of SolemnDragon (her site is on my links list)....

evening song
Friday June 24, @06:53PM
scattered like rain
we fall in other places
than each other's,
and like water, run together
  shameless in the clustering of wings
that is our minds together on the page

but this is not the song i came to tell.
There's more to the meadow now,
and this is where the shadow seems to start,
this is where the evening makes things holy,
this is what i saw
while i was silent, in the pleasant, lonely dark.

i am not as accidental as i was.
I no longer rise unweighted
to meet the landscape,
no longer stretch my arms
like palm leaves, unconcerned,
up toward the sun.

But there are other prizes to be had.
The slow unblinking curve of heavy moon,
the wise fog creeps over the ground
and i start to remember.
The way my grandfather probably remembered,
when he grew too old to chase us,
grew so frail
that the shape of his ancestors started showing through.

I remember my mother's father:
round face, like my uncle.
A cane-
a cane, we used to dance with, i recall-
our skipping feet
circling the prop of his age and loss of power.
We couldn't know:

Age has a way of slowing objections,
but opening eyes.
The way of thinking that ends in growing wise
is not thinking at all,
but finally starting to see.

And as pages brush by,
wings of fast-drawn ink,
i feel myself
finally starting to narrow,
i feel the days creeping in
and making their home
in the joints of my bones where the water
won't easily flow.

My ancestors start to show through,
and my hands get tired,
but the fields i once rushed past
are larger now,
the growing fronds of summer
larger in leaf-
the greener world is more
than i remember,
when i was green.

Maybe this is where the shadow starts:
Maybe this is where the meadow leads.

The "Hit" list, week four.... 

"Hit Me Baby One More Time" was on tonight. Found out to my surprise that the viewing audience picked Howard Jones last week, so not everyone agrees with the studio crowd. Tonight was interesting.

Greg Kihn was on, and I was looking forward to seeing him since I liked his music the best. But he proved to be the biggest disappointment. He did "The Breakup Song", and he was horrible! So far off key that it sounded like he was doing a cover of his own song! Then he did Green Day's "Boulevard of Broken Dreams". I give him points for enthusiasm and taste, but I just couldn't get past the fact that he couldn't sing.

Club Nouveau did their only hit, which was a cover of Bill Withers' "Lean On Me". I always hated their version of this song, especially the "we be jammin'" part. At least they refrained from that shit tonight and did a passable version. They also did Dido's "Thank You", which I actually liked better. So I'll give them good but not great.

Glass Tiger was a pleasant surprise. The band was right on, the singer was in great voice, and they really seemed to be enjoying themselves. Their hit was "Don't Forget Me When I'm Gone", and they did an impressive job on it. For their cover, they chose Vertical Horizon's "Everything You Want". It wasn't bad, but for some reason they seemed to be lacking something on this one and didn't quite sell me on it. Good effort though.

Billy Vera sounds great! He did the best original hit of the night with "At This Moment". Sincere and moving. Now to be fair, I'd never heard of the cover he chose, which was "True" by someone named Ryan Cabrera (?). I gave him points on doing part of it in Spanish, but overall, I just didn't like the song that much. If he'd chosen something else, I probably would have declared him the winner because he was definitely the most talented one tonight.

Thelma Houston's biggest hit was nearly 30 years ago, and a disco song to boot, so she was definitely a blast from the past. And isn't she Whitney Houston's mom? But "Don't Leave Me This Way" is a great song, disco or otherwise, and she still does it well. She picked the perfect cover for her style: Alicia Keys' "Falling". She captured the mood of the lyrics much better than anyone else on the show. I picked her as the winner, and about passed out when the studio audience agreed with me! I guess miracles still do happen.

"I walk a lonely road, the only one that I have ever known"........

Tuesday, June 21, 2005

Funny hubby..... 

This afternoon, I told my husband Dan that I hadn't been able to find the Icy Hot patches for my legs which are in agony from muscle cramps a few days ago. He found several and asked me which size I needed. I said, "Well, to be honest, I wish I could apply them all over because I hurt everywhere." His reply was, "Maybe we can ask the company to make an Icy Hot sleeping bag for you so you'll be completely covered."

I could not quit laughing because then I had this mental image of me wrapped up in a huge Icy Hot patch like a giant burrito!! Now THERE'S a treatment for fibromyalgia!

Think the Icy Hot guys would go for it??

Monday, June 20, 2005

I believe "Jeopardy" would call this category "Potpourri"... 

Getting over this heat exhaustion is taking awhile. My stomach is behaving now and the muscle cramps stopped sometime during the night, but I'm still getting spasms and feeling weak and wobbly. I went to aquacise today, but I had to take it really slow.

I still have yard work to do, but I didn't have any get up and go left after I got home from aquacise, so it will have to wait. Maybe Wednesday when it cools down a little. Bummer because I really used to love the warm weather before I got sick. And right now is tiger swallowtail butterfly season, my favorite. Those butterflies always remind me of my mom since I saw dozens of them the summer after she died.

Saw the ENT on Thursday of last week. He decided I should undergo a complicated regimen designed to eliminate some of my inflammatory responses to various allergens. It takes four months total to do. The first two weeks consist of Diflucan plus three nasal sprays. The next two weeks are antihistamines, more nasal spray and grapefruit seed extract. Then it's one month each of anti-mold and anti-fungal treatments. I'm not expecting to see any big changes from these treatments, but it would be cool if I could slow down the Sjogren's inflammation somehow. I am soooooo burned out on new treatments though.

Went to see "Sisterhood of the Traveling Pants" for the second time on Friday with a friend. Haven't gone to the same movie two weeks in a row since "Lord of the Rings". The movie still made me cry in all the right places even though I knew what was coming. And I still would really like to go to Greece.

Have been watching a TV show called "The Scholar". Yep, it's one of those dreaded reality shows. But I'm a sucker for shows where people get rewarded for having brains. The premise on this one is that 10 high school grads without the funds for college compete for a full-ride scholarship to the school of their choice. The first show was good because this guy who thought he was too good to study lost an important competition on a really easy literature question. Last week I didn't much care for because they had a team segment where basically they had to be cheerleaders. What the heck does that have to do with intelligence? At least that show ended well with the home schooled guy winning a $50,000 scholarship and a shot at the full ride scholarship ($250,000). Tonight's competitions were a bit better: the teams had to do commmunity service where they had to think up effective but inexpensive ways to help disadvantaged kids. And the final was about Africa. The girl who won a shot at the final is of Russian heritage.

I'm still going through my 2002-2005 pix and putting the ones I want prints of on a disc. I think I have enough from 2002 alone to make a whole album. That was a big year with my trip to North Dakota, my 20 year high school reunion, the Fibrohugs conference in Colorado and my trip to Florida. The grandaddy of them all, though, will of course be the Hawaii trip last year with the 900 pix to sort through.

I've been thinking about whether I should prepare some sort of statement to send along to Social Security when I apply as to how this illness is affecting me mentally. I mean, the neuropsyche exam I had in October hinted that I may have somatization problems, which I believe is totally bogus. The last thing I want is my long-term disability insurance company to start blaming my medical problems on psychological causes so they can get out of paying my claim. I think part of the problem is that because I appear cheerful, this is construed as meaning I must not be sick. But humor and positive attitude are part of how I cope. The past few weeks have been rather rough on my emotional state. How do I emphasize, though, that if I am depressed, it's because I am sick and not the other way around?

I need to contact the union president and find out the proper procedure for going on permanent disability as far as my job goes. I don't know how much to tell human resources since my bosses would love to eliminate my position so I no longer qualify for long-term disability insurance. It's still possible that the rheumatologist may say I shouldn't file yet, but I doubt that will happen.

Am almost done compiling my playlist for "Pop Goes the '80's". I've finished 1980-1988, and tonight I started going through the Billboard charts for 1989. This will probably end up being my biggest list. I DJ'd during the '80's, so I know the most songs from that era. The '70's list could be pretty big, though, although I might not have the funds to download any tunes by the time I get to it.

I'm still fighting with my health insurance company over the diabetes classes I took in March and April. I've called them twice already, and both times they said they'd take care of it because I should have been covered, but I just got two more notices from the diabetes center saying my claims were rejected. So I'll call the insurance guys again. I'm pretty sure that they have already paid the claims and the notices just crossed in the mail, but when it comes to stuff like this, it's always best to CYA.

My hands are gonna fall off if I type much more, so I'll stop here.

Heat exhaustion: not just for athletes and the elderly..... 

Went to my sister's bridal shower yesterday afternoon. It was held outdoors under a covered patio. The temperature was 95 degrees, but I figured I'd be fine as long as I stayed out of the sun.

There were perhaps 20 of us there, including someone with rheumatoid arthritis and a lady with cancer on oxygen. They seemed fine. We had a great time looking at photos, playing a few games and of course the opening of the gifts.

The original timeframe for the shower was three hours, but it turned into four. I had been careful to eat lightly and stay hydrated, but when I got up to go, I was a bit wobbly. I figured I was just tired and drove home without any problem.

Spent a couple of hours at home having dinner and resting a bit before going to my dad's house to wish him a happy Father's Day. I had Dan drive because I was too fatigued by then. My father lives out in the country, about 45 minutes away.

When we got there, my dad told us he was horse-sitting and wanted to know if we wanted to visit the horses. I love horses, so I slowly made my way out to the fenced area, a bit of a hike for me. But after I'd hung around for awhile, I was able to get back to the house only a little out of breath.

We visited perhaps an hour, and then I started getting really spacey and decided I'd better get home. It was probably 9:30 when we got back, and I was hurting like crazy from sitting in lawn chairs all day. I suspected I may have overdone it a bit, but nothing really worse than usual.

When I woke up today, I nearly passed out when I got out of bed, trying to get to the bathroom before I threw up. My stomach was really out of sorts on both ends, if you know what I mean. And I was sooo weak and dizzy.

I started getting muscle cramps about 1pm and that mental fuzziness that accompanies hypoglycemia, so I had to get out of bed no matter what. I had Dan help me down the stairs. Had to get some easy to digest nutrition fast.

I was too weak to get off the couch until just a few hours ago. That was when I decided to do a little research to figure out why I'd gotten so sick. I found out to my surprise that people with chronic illness and those who take multiple meds are more prone to heat-related complications than healthy people.

If I got mild heat exhaustion just by being outdoors on a warm day, I thought it would be a good idea to post this article so we can all be a little more careful this summer. Here's the link:


So I guess the moral of the story is stay as cool as you can.

Thursday, June 16, 2005

More "hit" than miss tonight..... 

Watched tonight's "Hit Me Baby One More Time". The show was significant in that nobody sucked. Yayyyyyy!

First up was Wang Chung, who did "Everybody Have Fun Tonight". I thought they did a decent but not great job. I was unprepared for their cover, though....."It's Getting Hot in Here" by Nelly! It was startling at first to hear two older white British guys doing a hip hop song, but it actually worked somehow. They made it fun and refreshing.

Next was Sohpie B. Hawkins, whose big hit was "Damn! I Wanna Be Your Lover". She really hasn't changed....still has the long blonde wavy hair and came onstage with ripped jeans. She wowed the crowd by removing her button down shirt and revealing a tank top with the name of the song on it. Her singing was adequate. Her cover was a Five For Fighting song, which she did as a torch song, wearing a black evening gown with her hair up. Pretty voice, but not my favorite.

I was looking forward to Cameo, who didn't disappoint with "Word Up". The lead singer appeared in a shiny black outfit trimmed in bright red feather cuffs, a red flame hat, and trademark codpiece (which I love, heh heh). I was intrigued by their choice of cover, which was "1985" by Bowling for Soup. I wanted to like it but couldn't quite manage to. They slowed it way down, changed the lyrics and took all the humor out of it. Made it sound sad instead of funny.

Howard Jones was awesome! He no longer has the trademark spiky 'do, but his voice and piano playing are flawless. He did an impressive rendition of "No One Is to Blame" and an equally impressive version of Dido's "White Flag". He had my vote, but of course the audience didn't agree.

Irene Cara still looks good and sounds decent. She performed "Oh What a Feeling". For her cover, she did a song by Anastasia. I didn't think it was fair that she got to use her new group instead of just having them do backup. I liked the cover all right, but I didn't think it was the best. The audience did, though. At least there wasn't anyone truly dreadful for them to vote for.

I don't know who's on next week.....they didn't say. Hope the lineup is this good on future shows.

Wednesday, June 15, 2005

Review is up.... 

My review of Tempur-pedic mattresses has been posted on But You Don't Look Sick. Here's the link:
Produce review Tempur-pedic

I've been requested to review some "summer reading" as well. What do people read in the summer that's different from any other time of year? I have no idea. Right now I'm reading something not suitable for review, but when I finish it, I'll go back to the Montel Williams' bio, which I do intend to review. I'll have to do some thinking on this whole summer reading thing....

Another setback.... 

Actually, I was feeling much better emotionally last night and was going to post about it. But first, I decided to go over some online courses I'd been taking at work before I'd gone on leave to see if I could catch up. I was surprised to discover that upon reviewing a few of them, not only did I not remember taking them, I could not keep up with the instructor or even understand much of what he was saying.

I took a break and had some supper before resuming one of the courses. About an hour after I'd finished eating, I suddenly got a stabbing pain in my upper abdomen, right where I used to get gallbladder attacks until my gallbladder was removed in 1999. Thanks to the wonders of fibromyalgia, the pain referred to my back and my ribs as well, making it hard to breathe deeply.

I decided I would go to the emergency room if it got any worse, which fortunately it didn't. I propped myself up on the couch and slowly sipped some water, and the pain gradually lessened over the next few hours until I felt ok enough to go to bed. The only thing I figured could be causing an attack like this would be the Provigil, which had been making me nauseous for a week.

So I called the neurologist's office first thing this morning and left a message with his nurse, detailing the problems I'd been having with the med. I got a call back a few hours later from the nurse, who said the doc wanted me to stop taking the Provigil. Because I have so many sensitivities, I am not going to try anything else new except Lunesta, which is similar to the Ambien I've been on for the past three years.

This is not the first abdominal attack I've had. There was another one a month ago when I was on an anti-inflammatory called Lodine. It went away when I stopped the med.

It occurs to me that maybe I'm develping an ulcer, so I made an appointment with my gastroenterologist. The earliest I can get in is July 6, but I feel like I should get it checked out if it has happened twice now. I thought since I'm taking Nexium I had a lower chance of ulcers from other meds?

I have done pretty much nothing else all day except inhabit the couch. I feel hung over and lethargic, which happens nearly every time I go off a med that has caused intolerable side effects. There's really nothing I can do except wait for my body to return to "normal".

I am concerned that if I am developing an ulcer, I may have to discontinue my arthritis med. My mobility is really hampered when I don't take anything. I guess I'll cross that bridge if I have to.

But in an odd way, I am relieved that I'm done trying new meds except the Lunesta. The process is such an emotional and physical roller coaster for those of us with multiple sensitivities. I am satisfied I have tried everything to get better that is reasonable for me to try.

I know a lot of people think that when you quit trying new treatments and pushing to get better, you are giving in and letting the illness win. I don't see it that way. When you have ailments that are not curable, after you have tried all the reasonable options, eventually, you have to make peace with yourself and make do with the hand you're dealt.

I will likely lie a bit low the next few weeks (except for some social commitments) before my evaluation on July 5 to determine if I can go back to work. If I'm not going back, I will have a fight on my hands with the disability insurance company which will take a lot of my energy. Maybe I'll pretend I'm on vacation until then?

Tuesday, June 14, 2005

And the bottom drops out..... 

Even though I don't typically suffer from depression, I guess most people with fibro have down days. Today is one of mine.

I know I promised I wouldn't get my hopes up about the Provigil, but I am disappointed anyway. After only a week, it has already stopped working. I am supposed to double the dose on Wednesday, but I am not confident this will cause a great deal of improvement.

I am overwhelmed with the urge to crawl into bed, not just from physical exhaustion, but because I'd like to hide, which is unlike me. I've had enough of medication trial and error and using all my energy to try to avoid getting sicker. At the moment, I am not coping well with the idea that I may never be able to work or feel any better than I do now.

Tomorrow I will probably have a better outlook, but right now is pretty crummy. The reality of going on permanent disability is staring me in the face, and all I can think about is that I'm too exhausted to apply. And I'm second and third guessing myself as to whether I have a good case or whether I should just go back to my job and try to tough it out somehow.

Right now I feel like there is so much wrong with my body that I've sort of lost me. Like the woman with the good sense of humor and fair intelligence has been drowned out. I hate fighting so hard to be myself.

My sister's bridal shower is this weekend. I'd like to just go to it and enjoy it like everyone else and not have to make any concessions for my health. I will try to have fun regardless.

I can't think of anything else to say.

Monday, June 13, 2005

At least something's working..... 

....the new anti-inflammatory, Mobic. I tested it out by going to the grocery store last night for the first time in two months. I was exhausted and in pain when I finished, but I got through the whole store, which is not something I was able to do after I stopped the Bextra. So now I can probably walk two city blocks without stopping as opposed to just one.

Had a little adventure today. A stray dog decided to hang out on my porch until my neighbor friend saw him. He was some kind of mastiff or something. I'd never seen him before....he had a collar, but no tag with an address or phone number. Chip went crazy when he saw the dog. My friend called animal control as neither of us could take the dog in and we didn't want it wandering off maybe getting hit by a car. Luckily, the dog didn't seem to mind waiting in the driveway. Took forever for someone to show up, but when she did, the dog ran right up to her as if he knew her, and jumped in the back of the truck like he'd been there before! I hope his owners do find him.....I always worry about a dog being put down if not claimed.

Dan and I had a date tonight. We went to a seafood restaurant as Dan had gotten a gift certificate as a reward at work. I had lobster tails. Then we went to see a movie as Dan had a gift certificate for that. Believe it or not, we saw "The Sisterhood of the Traveling Pants", which is a teen chick flick. In spite of that, it was a great movie.....suprisingly well-written and well-acted. Each character's story was interesting and believable, and it made me laugh and cry in all the right places. I hope to see America Ferrera in more movies. And I would like to see this one again. And go to Greece, even though I know that is quite unlikely.

There is more, but I can't think through the headache I've been getting every single day I've taken Provigil. I've re-read the literature, but there is no mention of the headaches decreasing over time on the med. Unless something improves next week when I switch to the higher dose, June could prove to be a very long month.

If I only had a brain....

Saturday, June 11, 2005

Thoughts on thoughts..... 

I'm trying to be patient with the Provigil and hope that it will be something helpful long-term. So far it hasn't been too impressive, though. While it is nice not to be actively dozing off (at least until it wears off each day), I still get exhausted by any little exertion and can't think my way out of a paper bag. The reason I had my hopes so high was that when I had the neuropsyche exam done in October, they blamed all my cognitive dysfunction on daytime sleepiness caused by a possible sleep disorder. When the sleep study revealed the periodic limb movement disorder, I was told that if I could get rid of the twitching and/or stop dozing off during the day, I would be able to think clearly again. Makes sense. But now I'm less confident that the docs are right. Unless this is something that will improve over the next few weeks with the Provigil, I think the cognitive dysfunction may continue even if I'm alert. The only thing I have tried so far that helped my cognitive function was prednisone, which I'm guessing means the main cause is autoimmune rather than as a result of a sleep disorder. I already tried low-dose prednisone therapy without success, and high dose is way too dangerous except for emergencies.

The bottom line is that I have to be able to think clearly to return to work. The agency has completely switched over to new software for my job, and I've not had any training on it. I have to be able to learn a whole new way to do my job and learn it fast. Right now I can't even remember how to use the stuff I had months of training on. Before I went on leave, I spent probably a third of each shift rechecking my work over and over and fixing mistakes I made before the boss caught me. I'm not sure i can continue to fake competency, especially on new software.

Maybe I'll gain a few IQ points when I start the Lunesta at the end of the month. It's a new sleep aid to replace the Ambien I've been taking for the past three years. Any dramatic improvement would really surprise me, though.

Maybe I should ask the Wizard for a new brain? Sigh.

Friday, June 10, 2005

Hail, yeah! 

Awoke to a thunderstorm today, which is a rare thing here. Most of our storms hit about 4pm. Anyway, I didn't get up until 12:30pm this afternoon because I forgot to eat last night and had to stay up until 2:30am after I finally remembered my supper. I promised the neurologist that I wouldn't stay in bed 12 hours a day anymore....he wants me to get up no later than 10 hours after I've gone to bed, even if I haven't gotten good sleep and feel like I need to make up "lost" time. So I've been setting the alarm every day this week and forcing myself to get up no matter how shitty I feel. And I felt shitty today because the thunderstorm kept waking me up all morning.

Needed to run some errands, and it was already a late start, so I got ready as quickly as I could, which isn't very quickly considering the extent of my brain fog. Dan needed to go to a specific store, so I decided I'd pick up a few things there rather than waste time going to several places. The rain had stopped when we left the house, but I didn't like the look of the black clouds to the west, so I grabbed my raincoat just in case.

Dan went to the gas station first, and as we pulled up, it began to pour. While we were under the station's canopy, I put on the raincoat because the temperature had dropped considerably. I glanced to the south and saw the ominous gray-green clouds signalling impending hail. Rats.

The deluge hit the hardest when we were one block from the store. The hail was only pea-sized, but it was coming down sideways in torrents. Within only a minute, it was piling up like snow and the streets started to flood. Dan turned off the road and found some large evergreens he could park next to so that we were protected a bit from the hail. We had to yell to be heard above the roar of the storm. There was nothing to be done except wait for it to slow down.

When the hail stopped and the rain returned, we pulled into the store parking lot. I had to walk very carefully because the layer of hail on the ground was extremely slick. I was exhausted and out of breath by the time I got in the store despite the higher dose of Provigil I was on.

I had a horrible time remembering what I was after in the store because every time I went to say something to Dan, the PA system would come on, and it was so deafening that my mind would just go blank. I only found part of what I was after. As I was looking for something, I noticed the ceiling in the store was leaking. Dan contacted an employee so that someone could put down a bucket or something to collect the water and warn the customers about the wet slippery floor.

We had intended to go one other place this afternoon, but waiting out the storm and then not being able to find things in the store had taken so long that Dan had to take me back home and get ready for work. When we got home, our rain gutters were surrounded by piles of hail. I checked the back yard, and our poor baby bushes had taken a direct hit. The lilacs will probably make it, but I'm not so sure about the other ones.

I took a full dose of Provigil when I got up today. Oddly enough, it seemed no stronger than the half dose I took yesterday. It was enough to keep me from dozing off, but not enough to keep me from getting fatigued from the slightest effort. It did last longer than yesterday.....it wore off after seven hours versus yesterday's five and a half. I'm beginning to suspect that the periodic limb movement disorder is not the main cause of my fatigue after all. This smacks of a very nasty case of Sjogren's fatigue, and no one has figured out how to fix that yet. But I will stick with the Provigil for now and see what happens.

Better go make myself some gluten free waffles before I forget.

Thursday, June 09, 2005

"Hit" and miss..... 

Tonight I watched "Hit Me Baby One More Time". The artists were: The Knack, Haddaway, Tommy Tutone, The Motels, and Vanilla Ice. Like last week, the format is that each performs their biggest hit and then a cover of a recent chart topper.

The Knack did a good job with "My Sharona", very energetic and fun, so I was looking forward to their cover of Jet's "Are You Gonna Be My Girl?" The band sounded great, and I was really getting into it, and then the lead singer couldn't hit the high note! Ack! Ruined it for me.

Haddaway sounded great on "What Is Love", but then he said he was gonna do a cover of a Britney Spears song. I was ready to either hurl or cover my ears, but his version of "Toxic" was actually good! He sings well, and he made the lyrics believable. I was impressed enough to pick him as the night's winner.

Tommy Tutone did their only hit, "867-5309 Jenny", and were pretty good, really enjoying themselves, so when they announced they were gonna do Blink 182's "All the Small Things", I was psyched. Like the Knack, the band sounded awesome on the cover, but the lead singer's voice didn't quite do justice to the lyrics and made it kinda discordant. Bummer.

The Motels did a fine job of "Only the Lonely". Martha Davis can still hold her own, and I was rooting for the only female singer of the night. Their choice for a cover, Norah Jones' "Don't Know Why", intrigued me. But they turned it into an uptempo rock song, which doesn't suit the lyrics at all. Disappointing.

Vanilla Ice did "Ice Ice Baby" naturally. The best thing I can say about him is he has nice tatts on his arms. He basically screamed the words, and it just sounded dated to me. His choice was another screamfest version of Destiny Child's "Survivor". He was the only artist of the night that 100 percent sucked.

And guess who won? Vanilla Ice! The audience wouldn't know taste if it bit them in the ass. I have a feeling it's gonna be this way every week, that the rap or hip hop artist is gonna win. But I'm having too much fun watching the old '80's bands to stop tuning in.

I did figure out how to record video on our player, so I taped the show for Dan. The signal is kinda crummy, though, because it's the one that comes directly off the TV, and our reception at our house is lousy . The rabbit ears clean up the signal that we watch on the TV, but I guess we're a bit SOL with taping stuff. Of course, I haven't recorded anything in over a decade, so the tape I used was an old one circa late 80's, which could have contributed to the poor quality. I know, I should get with the program and get a DVR, but I don't really think I'd use the record feature enough to make it worth the money.

That's the report for tonight. Word to yo mutha......

Rave of the Day for June 9, 2005: 

This is an oldie but a goodie. Maybe I should get Chip to read this? Thanks to Dr. Karen for e-mailing it to me....

Dear Dog,

The dishes with the paw print are yours and contain your food. The other dishes are mine and contain my food. Please note, placing a paw on my foot does not stake a claim for it becoming your food and your dish.

The stairway was not designed by NASCAR and is not a racetrack. Beating me to the bottom is not the object. Tripping me doesn't help because I fall faster than you can run.

I cannot buy anything bigger than a king-sized bed. I am very sorry about this. Do not think I will continue sleeping on the couch to ensure your comfort. Dogs can actually curl up in a ball when they sleep. It is not necessary to sleep perpendicular to me, stretched out to the fullest extent possible. I also know that sticking tails straight out and having tongues hanging out the other end to maximize space is nothing but sarcasm.

For the last time, there is not a secret exit from the bathroom. If, by some miracle I beat you there and manage to get the door shut, it is not necessary to claw and whine to pull the door open. I must exit through the same door I entered. Also, I have been using the bathroom for years; canine attendance is not mandatory.

The proper order is kiss me, then go lick your butt. I cannot stress this enough!

To pacify you, my dear pet, I have posted the following message on our front door:

Rules for Non-Pet Owners Who Visit and Like to Complain About My Dog:

1. She lives here. You don't.

2. If you don't want their hair on your clothes, stay off the furniture. (That's why they call it "fur"niture.)

3. I like my dog a lot better than I like most people.

4.  To you, it's an animal. To me, she is an adopted daughter who is short, hairy, walks on all fours, and doesn't speak clearly. Dogs are better than kids ... they eat less, don't ask for money all the time, are easier to train, usually come when called, never drive your car, don't hang out with drug-using friends, don't smoke or drink, don't  worry about having to buy the latest fashions, don't wear your clothes, and don't need a gazillion dollars for college – and, if they get pregnant, you can sell the children.

Provigil, Day 2..... 

My neck feels better today....I think icing it kept it from getting too bad. The last time I wrenched my neck, it took three days to stop twitching even after icing it for 24 hours, and then the muscles stayed tight for another week until I got a massage on Tuesday. I just hope to God I'm never in another actual collision. Did I ever mention I've been in SIX injury accidents? Of course, it takes far less to injure me than the average person.

This Provigil is weird stuff. It only worked half as well for me today as yesterday, and the fatigue came flooding back after five and a half hours even though I did nothing tiring today. So tomorrow I will try the full 200mg pill and see what happens. In a few weeks, the neurologist wants me to take 200mg right after I wake up and another 200mg four hours later so I don't crash at my usual time, which is between 5pm and 6:30 (right during the news, lol). I hope that by taking two pills I won't have the fatigue hit me quite so hard when it returns. If I go back to work and start crashing as hard as I have tonight, there's no way I'm gonna make it through a shift.

Need to haul my exhausted butt off this here chair and feed myself. I think I need a forklift.

Strange day, indeed....... 

Ok, today I started the Provigil. I decided to just take half a pill to see if I had any major side effects right away. Believe it or not, it started working in less than an hour.

I did have more energy than usual, no doubt about that. Made it easier to get through my aquacise class, and after I got home, I didn't experience the usual feeling of being about to pass out from exhaustion. Rare for me to not need a nap after exercise.

I did have some transient bouts of nausea. And one thing I found annoying was that my fibrofog was still slowing my thinking so I felt out of synch with my energy level. These things may pass with time though.

I needed to go a few places today. I had Dan drive me since I didn't know how I was going to feel. I dropped off some scripts at the pharmacy, got an allergy shot and picked up a few items at the health food store.

We were heading home when Dan had to slam on the brakes really hard. It jerked my neck enough to make me scream in pain. I had just gotten over some minor neck strain from a near collision the week before, sigh.

My fatigue returned a few miles later.....I don't know if it was because of the neck spasms, the Provigil wearing off, or if that's a normal thing. And I developed a really rotten headache once I got home. I iced my neck and it seemed to help a little....or maybe because I was off the computer not getting nauseous looking at the screen??

Anyway, I will try the Provigil again in the morning. I'm gonna stay at the half dose unless it doesn't seem to be strong enough. I do wish fibro treatment was less trial and error, but such is life.

Tuesday, June 07, 2005

The neurologist's verdict.... 

Ended up being a really long appointment because I was snuck in at the last minute and hadn't gotten a chance to fill out the normal pre-appointment paperwork about my medical history. I did bring a summary of my neurological problems and a list of all meds and supplements, which did help. It still took about an hour to go through everything, but I didn't see that as a bad thing because it meant he was being thorough.

The neurologist is not 100 percent sure I have periodic limb movement disorder because it began as a side effect of a medication and doesn't respond to the usual remedies. He said that a med like Klonopin probably wouldn't produce the desired reults either. He was amazed how many meds I've tried and have had reactions to, especially all the psychiatric meds that made me so sick.

After he got my history, decided to do a routine neuro exam since I have known neuropathy and motor skill trouble. He seemed suprised by my unsteadiness, odd coordination, weakness in some areas and stiffness in others....it doesn't really follow a recognizable pattern common to any one illness. He did the dreaded poking with the safety pin....found out I have altered sensation in one of my calves.

He decided I may benefit more from trying to prevent the daytime fatigue than from trying to stop the twitches. So I'm going to try Provigil for a month. And I'll switch from Ambien to Lunesta to see if I can sleep a lttle more deeply.

My targeted return to work date is July 5, so I'm hoping I'll know by then if these meds will help me enough for me to go back to my job. I was warned not to expect miracles because fibro and Sjogren's are pretty formidable foes, but I'll give it one last go. I am, however, prepared to file with Social Security if for some reason I can't tolerate the Provigil or if it doesn't help enough with the fatigue.

I figure at best, I'll be able to gain a few more years of employment. At worst, at least I can say I gave it my best shot.

Last minute appointment..... 

I've been sort of in idle mode medically speaking except for starting the Mobic. I've been waiting to see a neurologist to get a second opinion on whether or not I have any treatment options for my periodic limb movement disorder. I called them in April, and the earliest available appointment was July 20.

I did, however, ask to be put on a cancellation list, and I got a call today. They have an opening for tomorrow afternoon! Now I feel like I'm getting somewhere.

I'm guessing this will be my last new doc before I decide whether or not to file with Social Security. If I can quit twitching in my sleep, maybe the fatigue and cognitive dysfunction will decrease enough for me to be able to work again. I could be wrong about this...the fibromyalgia and the Sjogren's may be just too much to overcome, but I want the chance to find out.

Sunday, June 05, 2005

Rave of the Day for June 4, 2005: 

Here's a funny from Ducky's Daily Grin.....

Signs You've Bought a Cheap Car

• Your tinted windows are also known as Hefty Garbage Bags.

• The car reaches its optimum speed when going downhill.

• The hi-tech stereo system often requires a new needle.

• The rear-view mirror says, "Objects in Mirror Are Better Than This Piece of Junk."

• The odometer on the dashboard is not as sophisticated as the everyday abacus.

• Shadow Traffic warns other drivers what highway you're taking.

• The sticker on the windshield says, "Batteries not included."

• You fill up the tank with Unleaded Coals.

• You can only go to restaurants that offer Valet Pushing.

• When you pass hitchhikers, they put their thumb down.

Finally some relief..... 

I think I've FINALLY found an adequate replacement for Bextra for my arthritis. I started Mobic this weekend, and my joint pain is down to about a 5 out of 10. Much better than my usual 8 or so. The muscle pain from the fibromyalgia is still quite high, but it may come down some if my joints stay consistently better for awhile.

Got ambitious and went to a scrapbook store today. Bought a new album for the family photos my aunt sends me....I'm gonna include the stories she sent me that go with the pix. My aunt is 82 now, and the only living relative that remembers my grandfather (he died in 1944), so those old photos and stories are precious to me. Also got page protectors for my wedding album and LOTS of adorable stickers. I found seashells and Disney stuff for my Florida pix, wildlife and wildflowers for the North Dakota photos, and baby girl art for the pix of my nieces. Gotta be careful in that store.....I could spend a fortune in a heartbeat if I'm not careful!

My sister's wedding is just seven weeks away! Her bridal shower is in two weeks. I have something to wear to the wedding (the dress I wore to my high school reunion three years ago), but I MUST do something with my hair, preferably getting it all the same color and a decent haircut. I'm debating whether I should go the economical route and risk another haircut from hell (I'm still trying to grow out the awful cut I got in March), or blow big bucks on something that I know I'll like.

No yard work today as it was pouring until mid-afternoon. I appreciate all the rain we're having, but the weeds are winning the battle for the yard. What's really frustrating is having to limit my time out there to 30 minutes to avoid injury (even so, I hurt myself again yesterday). Every time I go out there, more weeds have come up in areas I'd thought were done. What's sad is I know Dan could go out there and get the whole yard finished in about an hour and a half.

Yesterday before the big storms hit I ducked outside for a bit and figured I'd just grab the worst weeds really fast, so I didn't bother with gloves. Turns out the largest weeds have THORNS on them, not obvious ones like on rosebushes, but almost transparent spiny ones that break off and get under your skin before you even know what hit you. I considered going and getting the gloves, but the thunder was getting closer, so I called it a day. Just before I went in, though, I noticed a hawk flying over the house wayyyyyyy high up. He was probably scouting for field mice as we have some open space about a block away. With the clouds rolling in, he'd disappear for a bit and then reappear....kind of eerie. I wonder if hawks ever get hit by lightning?

Part of me wants to get up and do something because I hurt less than usual right now, but another part of me wants to do absolutely nothing except enjoy the lack of pain. Maybe I will tidy up the command center after I finish rounding up North Dakota photos. One of the really aggravating things about the CDs containing my 35mm photos is that the pix are NOT in chronological order. I saved money by having multiple rolls on one disc, but now I can't find shit.

Sometimes being a cheapskate is a hassle.

Saturday, June 04, 2005

Weather whirlwind..... 

Today (Friday) there was a whirlwind of activity around my house. Actually, it was very nearly a tornado. My neighbor and I watched as a huge mass of clouds right over us rotated but didn't completely form a funnel.

Then the rain started, huge drops that came so fast they hurt when they hit you. We retreated to my house as we were gonna have movie night, but the power was flickering, so we waited for things to calm down first. My bushes kinda took a beating, but fortunately no hail or flooding like there was just a few miles away.

The lightning was incredible. We had both the massive bolts shooting straight down and the cloud to cloud sideways kind. The bolts got so close to the house that they nearly struck the front yard.

We escaped unscathed compared to other parts of town, where power lines were struck down, hail piled up like snow and vehicles were washed away. Chip would rather it had not happened at all: he barked in panic at the thunder and wouldn't go near the windows when the lightning was flashing. He followed me everywhere with his nose behind my knee.....I guess maybe he thought I could scare the storm away?

Eventually it all did pass and we got to watch our movies. We're supposed to get more of the same type of storms tomorrow. I can't really object to the rain because it may finally bring us out of our drought.

Contradicting myself: good versus great writing..... 

This topic is the result of one of sol's journal entries. Check the "Journal of solemndragon" link on the upper right of this page, the June 1st entry.

I responded to this entry last night. The response said in part:

...."I will own up to my own poor writing. It wasn't always thus. When I was healthy, the right choice of words came quickly and abundantly. I could write anything I wanted. Had I known my word power would diminish so quickly and profoundly, I would have completed some of the novels and other books I began while I was young.

"Now I can't get my best ideas from brain to paper....the thoughts flash like lightning and then evaporate just as quickly. The few notions that manage to stick with me are just retellings of day to day activity, fine for a blog but not exactly original or interesting ..... I must write myself sane, even if the only audience is me.

"My fave stuff is not necessarily "great". Mostly, it's anything that causes me to completely forget what's going on around me, that amazes me so that I must read it more than once, immediately. It may be a plot that leaves me guessing or takes me someplace completely unexpected. It might be a chapter where I feel as though I really were in someone's head. It might be a song or paragraph that perfectly captures a situation or emotion. Or it might be a single sentence that makes me giggle until I snort.

"I've learned that some of the greatest writers are not people you'd want to hang with. They have an edge to their personality that does not shout "friendly". Maybe their wit and originality can only be expressed on paper, or maybe I'm just too slow in my thinking to converse with them now. On the other hand, some of the friendliest people I know simply cannot express themselves well in print. Those are the ones I ache for, the ones who are trying so very hard and achieve clumsy results at best. I just hope that I fall somewhere in between those extremes.

"When I was a better writer, I used to speculate on what make me famous and what might be ignored. I even had a dream, set in the future, in which I read a bio on myself where my main claim to fame was using the phrase "Frosted Mini-Wheats" in a poem! I no longer worry about whether I'm brilliant. Now I just strive to be understandable."

I've had some time to think about these statements, and I changed my mind about something. There is something lacking in my earlier writings: some seem a bit hollow. Not for lack of effort, but because of my shallow level of life experience. My more recent endeavors, while lacking in eloquence, have an emotional maturity less frequently achieved by the young. I guess there's something to be said for middle age and treachery, eh?

I guess if I can't have it all, I should just appreciate that I have something.

Friday, June 03, 2005

Stormy weather.... 

Today was a good day to stay inside. I did go out to the back yard briefly to pull weeds after my Gazelle workout this afternoon, but it was very windy, and within maybe 15 minutes I heard thunder, so I decided the weeds could wait another day. There has been an almost constant parade of thunder, lightning and rain since then.

Have been trying to track down photos from 2002-2005 I have on CD or somewhere on the computer. Am amazed how many there are; I'd forgotten about most of them. I'm gonna organize things by putting only the pix I want prints of on one disc so I can just hand it to the developer and ask for one of everything. I'm putting them in chronological order as I find them and am writing up descriptions so once they print out, all I have to do is put them with the prints I already have.

Watched a new show tonight called "Hit Me Baby One More Time". Aside from my dislike of the name (they got it from a Britney Spears song), the premise was straightforward enough: five artists who haven't had a hit in several years compete for money for the charity of their choice. Each artist performs their biggest song, then does a cover of a present day hit. The audience votes for a winner. Tonight's choices were: Loverboy, CeCe Peniston, A Flock of Seagulls, Arrested Development and Tiffany. Loverboy did "Working For the Weekend", and it was so so because Mike Reno's voice isn't quite as good anymore. But they did a very suprising cover of "Hero" by Enrique Iglesias that I actually liked. CeCe Peniston sang her 1991 hit "Finally" and sounded GREAT! Her cover of a Fatih Hill song was awesome, and she looked really comfortable onstage. She had my vote, but she didn't win. A Flock of Seagulls sucked. The lead singer was off key and totally flat! Their cover song was even worse. Ugh. Arrested Development performed "Tennessee" and an interesting interpretation of "Heaven" by Los Lonely Boys. They won. And Tiffany did adequate versions of "I Think We're Alone Now" and a Kelly Clarkson song. One thing about her has certainly changed: she's no longer afraid to show a TON of cleavage! Next week, there will be five more artists. One of them will be The Knack.

Need to call Social Security to ask questions about some of the info they want for filing for disability. Also need to make copies of my supporting documentation, but I feel pretty prepared now in case I need to file next month. If only I could find the energy to tidy up the command center....I've got papers scattered everywhere!

The rheumatologist's office called this morning. I'm going to try Mobic for an anti-inflammatory. Hope this works as I'm tired of not having much arthritis relief.

Tomorrow I'm having a friend over for a mini movie fest. We're gonna watch "Eternal Sunshine of the Spotless Mind" and then "Bruce Almighty". As long as we're doing Jim Carey, "The Truman Show" would be good too, but I don't think I'm gonna have the energy for three movies.

Chip seems to be feeling better. He's spending more time playing in the yard. He's still probably less active than a dog who doesn't have arthritis, but at least he's not spending all his time in his crate like he was there for awhile.

Speaking of Chip, it's time for his meds.

Thursday, June 02, 2005

Dental work and a freak accident.... 

Ok, this one is truly bizarre. My hands were alternating between numb and ok, and I was getting ready for bed. I went to use my anti-histamine nasal spray. It's bascially a glass bottle with a pump on one end and a nozzle that goes up your nose. You put your thumb on the bottom of the bottle and your index and middle fingers on the pump and press down to activate the spray. I was doing this, and I lost my grip on the bottle. My fingers slipped off the pump, but my fingernails snagged on it and bent backward. The force of my thumb pushing upward sent the nozzle of the bottle flying up my nose! It basically had the same effect of punching myself in the face: blood came gushing out my nose in a nasty torrent! Ewwwww! I was surprised I could bleed so much from such a small thing. And it hurt like a sonofabitch.

The bad part was that I had already taken my sleep medication, so I really needed to lay down, but my nose would not stop bleeding. I looked like I'd been in a horror movie. When it began to slow finally, I rolled up a Kleenex and put it up my nose hoping it could clot. Dan said it looked like a tampon. Ewwwww.

I got to sleep after about an hour (it took way longer than usual because I hurt so bad) and miraculously didn't bleed on my pillow. But when I woke up this morning, I had blood in my mouth and throat, and my queasy stomach told me I'd swallowed some in my sleep as well. Not a pleasant way to start the day.

My dental visit this afternoon was anticlimactic in comparison. I had my final crown placed with some trouble. The temporary had been put on so well that the lady couldn't get it off, and my tooth is STILL sore even with the root canal, so I was squirming in the chair. It was quite a relief when that temporary finally popped off. By then my jaw was complaining and my gums were bleeding. But I'm all done for now until August. If the tooth next to the one with the crown is still bothering me then, I'll be getting ANOTHER root canal. But I'm not gonna think about that for awhile. The appointment wore me out so much that when I got home, I had to take a 2 and a half hour nap before I even had the energy to watch TV.

Did watch the pilot of "Lost" tonight and was suprised how good it was. I will make a point of watching as much of the series as I can. Before that, I watched the Eagles concert, which was awesome. They were performing in Australia. Joe Walsh is my favorite, and he did not disappoint, dressed in what appeared to be pajama bottoms and wearing a helmet cam. When they played "Life's Been Good", they used various sound effects, which added to the humor of the song. And the band's harmonies are still right on no matter what they perform. They had two new songs I think.

While the TV was on, I sorted through photos to make a new scrapbook. I had three years' worth that haven't made it into albums, and I had trouble remembering which ones were taken in which year. A lot of my photos are actually on CD, so I'll have to bring them to the camera store and make prints (which fortunately are pretty cheap) since the quality of my computer printer is not quite up to my standards. I discovered while going through my 2002 class reunion pix that I don't remember most of my classmates' names anymore! When I was at the reunion, I recognized nearly everyone! How could I lose so much brain function in only three years? I guess it's a good thing I did my mom's albums in 1999 and 2000 when I could still remember most of the names and dates. I'm going to have to really start documenting things better.

So tonight I have a tender nose, a bandaged finger to protect the nail that was bent backward, sore mouth and neck and jaw, and the fibrofog is so thick you could cut it with a knife. Sigh.

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