Expecting Death

i realize this sounds pretty morbid, but bear with me; just some thoughts and feelings i recently discovered and how they've changed my thinking. i have been diagnosed with fibromyalgia - unfortunately, i'm pretty sure fibromyalgia (literally "soft tissue pain") is just a fancy word for "there's something really seriously wrong with you, but since we're not sure what it is, we're going to lump you into this category and just try treating your symptoms." there are several symptoms - a few are recent additions - that don't fit into the fibro category, so once i have insurance again, i'm sure there'll be more testing in my future.

it wasn't until very recently - maybe the last few weeks or so - that i realized something: for a while there, i was completely resigned to having a terminal illness. all those months of pain and fatigue and fuzzy mindedness and sleepless nights and pain... it was clear that there was something very wrong with me. and if you were one of the few people who actually saw me during this time period, you probably agree that i looked seriously ill. and i don't mean "oh you must have a bad flu" kind of ill... i mean "at death's door" kind of bad. i hobbled around like an 87 year old woman (and that's not even an exaggeration. both my grandmothers, one of whom is in her 90's, move around better than i do at times), i often had crippling pain in my hands and fingers, and i went through some scary lack of mental abilities (for example, i wouldn't be able to recall my own address, which i've had for over 2 years). even now, though i am somewhat better, i have to apply makeup in the full-kabuki fashion in order to look normal - otherwise i make people uncomfortable. (true story: rob and i went to chili's a month or so ago, and since i hadn't planned on going out in public - i had only intended to hang out at his house - i had no makeup on and my hair was pulled back. our waiter, after one initial glance, would not meet my eyes the entire meal. he would ask if i needed anything and bring me water when i needed it, but his eyes would sort of glance off to the side instead of staying on me. he talked to rob normally, but not to me. and that's hardly an isolated incident; in my natural, non-cosmetic state, i apparently now strike a "there's something really wrong, like cancer wrong, with her" chord in people which, understandably, makes them uneasy.)

it went beyond what i looked and felt like, though... the worst part was the medical staff. all the doctors and specialists i saw all greeted me normally - and then they looked at my vital signs, my blood test, whatever it was in that chart in their hand. they would examine me, look back through the chart, and then a sort of change happened. it was something in their face, a slight gathering of tension, and their voice would become a little kinder. their eyes would take on a wary cast and they would have to take a deep breath before giving me the verdict. and the verdict was always the same: more tests to be run, more blood to be taken so that we would "know for sure." i'd ask what the next batch of tests was for and was given the same answer pretty much every time. they'd list all the extreme probabilities - lupus, cancer, brain or nervous system tumors, etc. - and tell me if that came out negative, we would do some more testing for more benign things. "it's just to rule them out," they'd invariably say, "just so you won't have to worry." but i could see it in their eyes (and, well, i am an empath... it was just there). they wanted to test for the worst case scenario because that's what they expected it to be. and they didn't want to waste time looking for the minor things when we could use that time to treat the illness, whatever it was.

slowly these reactions - without me ever consciously thinking about it - settled into my head and took root. it was a slow process... i couldn't even tell you when that idea became part of my everyday life. but it changed, just as slowly and unobtrusively, my outlook on a lot of things - and life in general. i can't be bothered about little stupid things anymore. pride rarely gets in the way of anything anymore. i know my body's limitations, and however much i may hate it, i have to be realistic. i have to ask for help. i have to back out of things i really want to do. i can't deal with other people's stress that has nothing to do with me. i have to be honest about it. i can no longer hold onto grudges or misunderstandings. i can't expect people to speak up first. i can't hold back or sugar-coat my thoughts and needs because i think someone might need that. i'm not even stressing overmuch about my current (precarious) job-and-rent situation. life is just too short not to enjoy it - and apparently i needed to assume i was dying to remember that.

When Did the Sloths Become Trained Ninjas?

if you have no idea what i mean by that, and if you don't know about the elephants currently standing on my left shoulder, let me explain...

several months ago i got fed up of talking about how miserable i felt all the time, and i can only guess people got tired of hearing it. friends and family, genuinely concerned with how i was doing, would ask how i felt, and "okay" or "meh" were not generally accepted as responses. however, logging everything that was wrong with me on a given day (because it could be many things at once, and those things could change day to day) became very tiresome and - let's face it - pretty depressing. so i developed a "shorthand": since my two biggest problems were pain and fatigue, i decide to break them down into expressions that were easy to share. and, because it's me, and i was over talking about "pain" and "fatigue", it needed to be something with a little humor.

hence the elephants and sloths.

elephants register the amount of pain i'm in, from 1-50; 10 elephants is low, everyday kind of pain (i feel like only 10 elephants have run over me), while something like 35-40 elephants means i'm in pretty severe pain. and those elephants are clever - apparently they've been taking lessons from circus trainers. some days (like today, for example) my body pain's only around 5 elephants, but there are at least 25 balancing precariously on my left shoulder. and at least one of those pachyderms needs to work on its balance, because it seems to be leaning on my neck for support.

sloths tally the amount of fatigue i'm feeling, and they run from 1 to 10. don't let that low number fool you, though: these sloths are serious about their, well, slothiness. and several of them clearly need to go on jenny craig, because when they decide to take a nap on me, i can barely move myself, even if i need to. they seem like such gentle creatures, but looks can be deceiving... i met one at the give kids village a couple of weeks ago while i was taking pictures; the people from discovery cove bring over various animals once a week for the kids to see and interact with. lucky the two-toed sloth was very sweet and docile. but when i asked politely that he tell his relatives to please lay off the junk food, he just blinked sleepily at me and pretended not to know what i was talking about. you'd think, because they generally move so slowly, that i'd have ample warning before they attack, but oh, no... apparently the sloths are also adeptly trained ninjas, masters of the sneak attack. i meant to be over at rob's nearly three hours ago, but they ambushed me and rendered me unconscious for two hours. they may seem sweet, but they fight dirty...

so should you ever hear me talking about my elephants or those damned sloths, now you understand... and be careful, they've been known to try to follow others home. we must all be very vigilant...

That's Right, I'm Classy

just an self-observation as i sit here eating my vanilla creme-centered cookies (think vanilla oreos) and a glass of 10 year tawny aged port wine...

Summer of Music

if you know me, you know that music is a constant in my life. i can't make it (well, i probably could, but i'll leave that to people who have actual talent there), but i can dance to it, sing along to it in the car, and just generally rock out to it. i do this as often as possible. and yes, i own hundreds of cds, and thousands of tracks, but my favorite way to listen to music is live and in person. i love it - i love the energy of the band, and the energy of the crowd, and how those energies flow back and forth. anyone can sound good on a studio recording after production wizards have done their stuff, but it takes true talent to create your own music and make it sound awesome on a stage in the middle of hundreds of people.

it has been an excellent summer for live music. well, for me anyway. i don't know what you've been doing, but i have been delighting in a smorgasbord of melodious pastiche. (okay, yes, that metaphor was completely ridiculous, but whatever.)

just after school let out - the day after, actually - john and i went out to tampa to see the cure. his sister denise joined us and we rocked out to a blissfully made-up robert smith and his current bandmates. rob and kristin joined me for some cowboy mouth shenanigans in july. (and, yes, i remembered the red spoons this time!) liberally sprinkled throughout the summer were shows by afterglow radio and junkierush. (incidentally, agr just released their first full-length cd, and you should definitely pick it up - awesome stuff!) but the best of the summer music extravaganza was at the (formerly star-lake) amphitheatre just outside of pittsburgh.

the police with elvis costello and the imposters.

i don't even think i have to mention how awesome this show was. i'm not sure i even have the words to describe its awesomeness, and i'm the girl who just used the phrase "delighting in a smorgasbord of melodious pastiche" earlier in this blog. it was my first time witnessing both these bands, and it was totally worth the ridiculous ticket price. (well worth the ticket i bought for dad as his birthday present, too) elvis costello is, of course, a musical

genius and he and the imposters are just plain fun on stage. the police, suffice it to say, were brilliant. it was so relaxed on stage - it was obvious they were having fun and enjoying themselves. i'm going to go out on a limb here and say it was probably better than the last tour they went on before they split. there were no egos, no tension... and since they've already stated that they have no plans to reform or recordany new music, there was no pressure of longevity. just three amazingly gifted musicians out there doing what they love. sting sounded better than ever - and the fact that i find a man old enough to be my father sexy is just a testament to his talent as a performer. he owns the stage and the audience. andy summers occasionally broke into mind-bending guitar solos, and steward copeland is simply amazing. he (with his nine-gazillion piece percussion kit) was as fun to watch as listen to.

so, yay, live music! may there be more on the horizon!

Going With the Flow

there are lots of things going not according to plan at this point in my life.  i can't say that's a bad thing, because it all seems like it's for the best (as long as i can pay my rent next month, anyway). i'm really working on trusting the universe at the moment, and hopefully it'll pay off.  i'm already glad i'm not back at chs, no matter how much i miss my kids and my department (well, some of them anyway).  i'm tutoring which is good - i get to be helpful without all the mountains of unnecessary paperwork and protocols.  it's only part-time, though, so i need something else to pay the bills, but hopefully that's just around the corner.  (and if you have any suggestions, by all means, suggest!) it's certainly less stressful and easier on my poor body.  now if i can just figure out how to get full benefits so i can go back to the doctor... 

Raccoon - 5, Parents - 1

i went home to visit the parentals at the end of july. they picked me up in pittsburgh and we headed back to the house. as i carried in my stuff, i noticed a long metal cage sitting on the deck. "what's that for?" i asked. "the raccoon," my mother answered. "we have a raccoon?" "not on purpose." apparently the raccoon had been tearing up the yard and eating the votive candles out of mom's terra cotta luminaries. "candles?" "yes, he very carefully pulls them up out of the holders and i guess he thinks they might be food. he munches around the outside, realizes he can't eat it, and moves on." all this, and he's not so much as tipped over the breakable holders. the yard, however, is looking pretty rough, so my parents decided to trap him and take him up to cooper's rock (a local state park) and let him go up there.

they had tried to catch him the night before i arrived using hamburger as bait, but to no avail. in the morning, the hamburger was gone, and the trap was still set - and almost caught the cat, who is clearly not as clever as the raccoon. according to my uncle (who lent them the trap - why he had a raccoon trap, i'm sure i don't know), the best bait is sardines. um, ok. so that night, dad set the trap. in the morning the cage held... nothing. the sardines were gone, and this time the trap was closed, as if the raccoon wanted to show us that either a) he knew how this trick worked, or b) he was the houdini of the nocturnal world. raccoon 2, parents 0.

they tried again, this time with dad fashioning a cup to hold the sardines, which would be affixed to the cage. theoretically, the raccoon would have to climb into the trap in order to get the food. this time, the cup was intact and unmoved, the trap was opened, and the sardines were gone. raccoon 3, parents 0.

on the fourth attempt - with more rigging and wiring of sardine holders - a raccoon was caught. unfortunately, it wasn't the one they were after. this was a baby raccoon, who was all kinds of scared to be stuck in the cage. he was too young to have learned the finesse of the older raccoon, who was still free. my parents, animal-lovers both even though they were tired of the raccoon shenanigans, tried to calm the poor baby before dad took him up to cooper's rock to find distant relatives. so technically, raccoon 4, parents 0; but since they did catch a raccoon (though it wasn't the raccoon), i'll give them raccoon 4, parents 1.

a few days after i returned to orlando, my mother called to tell me they had tried a new tactic. you guessed it: this time the cup and the sardines made it out of the cage, without the trap ever catching. raccoon 5, parents 1. and the battle continues...

Welcome to the Heart of Gold

i am in ft. lauderdale visting john for the week. i flew because i found a $23 roundtrip flight on spirit (how do they keep running these specials? i'm sure they should be bankrupt by now...) and that's a lot cheaper than the 100 or so dollars i would spend on gas and tolls to drive here. last night, i got off the plane, made my way downstairs, and out to passenger pick-up. there is a small vestibule area there; you pass though one set of automatic sliding doors, walk through a short hallway, and then through another set of doors that lead outside. i decided to forgo the exit that everyone else was using (and therefore jamming up) and move on to the empty one on the left. as i activated the first set of doors and walked through them, chimes sounded - dum da da dum DUM! - and masculine, computerized voice said, "you are beautiful."

i'm sorry, did i take a wrong turn and end up on a stolen state-of-the-art spaceship? did i just pass through sirius cybernetics' latest product? because it's really the only explaination for complementary sliding doors in an airport. if so, where's marvin to cynically complain about them, and what about ford and arthur? and where's my tea? and if it's not the case, is there someone sitting in some booth saying these things and watching for reactions? because i didn't hear any of other passageways making comments as i passed....

The Year That Disappeared

i swear last week it was september, and somehow suddenly it's the middle of july. i know i've had a crazy last 10 months or so, and was kind of out of it a lot, but seriously - where did the year go? i find myself randomly thinking of something, and say to myself, "oh, that was in february. no, wait, that was LAST february!" it's a very odd sensation - like the last 10 months didn't really happen. and while i admit there are some gaps (thank you so much, fibro fog), i do remember stuff that happened this past year. but it's just one big blur for the most part. just... wierd. what an odd feeling.

I Heart Whole Foods; Let Me Count The Ways...

there are lots and lots of reasons why i am extremely happy a whole foods market opened up a mile down the road from me. but really there's one that is far and away the best. thing. ever.

six - yes, count them SIX - frozen food cases of non-dairy ice cream.

what? it was like christmas. i seriously stood there for at least 10 minutes - probably longer - trying to choose. it boggled my mind; at walmart or publix, the best i can hope for is one shelf in the ice cream section to choose from. I HAD SIX WHOLE SECTIONS. and yes, i know it sounds pathetic, but that moment - that one blessed moment when i had a bazillion choices of ice cream that i could actually eat - may qualify as one of my top 5 most blissful moments ever.

o frabjous day! callooh! callay!

Never a Dull Moment

it's summer. i have a LOT of free time on my hands. so it was with this in mind that i decided to go to clearwater on friday, then swing up to new port richie for an afterglow show. of course, my body being tempramental and all, i was not motivated at all to head to clearwater early in the afternoon. i was, however, easily persuaded to go see wall-e, which is a whole 'nuther story involving a cute movie, a broken air conditioner, and a packed house. suffice it to say that i needed to go back to my house and shower before heading out.

at this point, it's 6:00. i call a friend who lives out in that general area who i haven't seen in forever, and procede to talk to him for a half-hour. 6:30. he had to work at 5 the next morning, so no show for him. everyone else was out due to visiting relatives and other plans, and at that moment the sloths decided to attack. (if i haven't explained that yet, i'll do so in another blog.) nearly 7. obviously, i'm not getting to clearwater first. new port richie is about an hour and 45 minutes away from me. i was debating not going at all, but i already bought tickets and - let's be honest here - what else was i going to do, sleep some more? i needed to get out of the house, so i threw on some make-up (full kabuki since i'd be in public) and headed out.

It was an interesting evening to say the least. i'm pretty sure my hair did not meet the height requirement and my jeans weren't tight enough, but they let me in anyway. the space was pretty decent (bourbon street nightclub, if i didn't mention it); two full bar areas, darts, several pool tables, a "cafe" area, plenty of seating, and a decent stage area. and it was chock full of interesting characters.

let me preface this by saying that i having nothing against hanging out on my own. i have no problems going to a movie, out to eat, or to show by myself. i'm an observer - i'm perfectly happy to people watch and file away the senarios playing out around me. i generally tuck myself into a corner or along the bar and hang out. however, on friday night, unbeknownst to me, i apparently had a large neon flashing light above my head that said, "all wierdos come by and talk to me!" i don't know who plugged this sign in for me (or where, thank you eric) but i kinda wish they'd talked to me first. or warned me at least.

first up was the obligatory foreign i'm-here-to-hit-on-any-and-every-woman-here guy. i don't know where these guys come from (this one sounded eastern european) or whether thy're aware that they're a trite cliche, but nothing seems to phase them. after being shot down by me (really? your second question is "you're here with just friends, no husband?" apparently a boyfriend wouldn't have slowed him down...), he moved on to other targets. next up was a guy - harmless, obviously not trying to pick me up, and possibly high - who was talking to me, but didn't really seem to need my input in the conversation. he would bring up things and then answer them, watching me but really just having a conversation with himself. it was... odd.

the most random conversation of the night came after the older guy next to me asked me to watch his (pitcher of) beer while he ran to the bathroom. no problem. i was unaware, however, that watching someone's beer for 2 minutes instantly made you a close personal friend. i learned all sorts of educational things: how much money you can make off of selling scrap copper (a lot, apparently), the mechanics of a drill bit, and that you can pull in $75 an hour doing landscaping - and that's just doing the trees. i waited till he was distracted by ordering another pitcher (because clearly he hadn't had enough) and made my escape to the other bar.

most of the rest of the night passed relatively routinely. the main band - 12 stones - took the stage and i found them to be quite enjoyable. the lead singer made me giggle. alot. i know most of you have not seen cowboy mouth in concert (and really, fix that would you? they're amazing and p.s. they're playing at bb king's at point orlando the 25th. just saying...) but this guy was fred leblanc on crack. fred - lead singer and drummer for cowboy mouth - is probably the most upbeat and positive guy you will ever meet. but don't let that fool you. if you are not having fun, if you are not standing up and clapping and having a good time, he will call your ass out on it, and likely stand over you with a microphone until you do. (please see past blog from january to clarify.) 12 stone's lead singer? a tad crazier and more vocal, if that's possible. my favorite crowd admonition was, "okay, so who out there is at their very first rock show tonight? yeah? one guy? alright, what the HELL is the problem with the rest of you? act like you're at a rock show, would ya?"

best part of the night came when i was heading home. there's a 24-hour drive-through starbucks in new port richie, so i stopped for an iced caramel machiato (soy and decaf) for my ride home. and sidebar, why does new port ritchie have a 24-hour drive-through starbucks when there is no such thing anywhere near me in orlando, one of the largest tourist destinations in the world? anyway, i waited at the pick-up window for a while. when the barrista (is it a barristo if it's a guy?) opened the window to give me my drink, he refused to let me pay for it because apparently he kept messing it up and kept having to start over. really? i wasn't waiting that long, but whatever... yay, free starbucks!

see the shenanigans you miss out on when you don't hang out with me?