thisismydisease.com

i cut my nails again today. third time. only one bleeder. i should be thankful - but dayam it hurts!

my teeth are breaking and/or shifting - and as of right now, i cannot go to the dentist without some sort of decree. my mouth hurts (as it should) and is all funny.

everything tastes like salt. lotsa salt.

my nose is bleeding. my mouth is bleeding.

geico (great Web site - but even better customer service) cancelled my premium.

it takes me four times to do what an average person does, thanks to the brain cancer (which is doing well i’m told). or very weird reaction.

i miss little dog.

i go to the grocery. one day, i went to Rainier. that’s it since i got on the radiation bandwagon (which i’m off of, but i still hurt because of the chemo).

i need to get out.

but i get sleepy.

i’m off drugs. nurses don’t understand. “we don’t let anyone live with pain”. but i *WANT* to live with pain. so i will. occasional ibuprofin. it’s not like cannibal junior didn’t prescribe NSAIDS which the pharmacist had to call about!!!!

all in all, most people would want to die living the life i live.

but…

…i want to live.

…and giraffe slippers. that’s what fits. and they’re cute - they’re CUTE!!!!!

update on me:

close to c-mas i ended up in the er thinking and writing (very slowly) in english but speaking in what i found out was french. my friends on the east coast got me an ambulance. the head male thought i was drunk. the head female knew i was not (where did i hear that before???). net-net: i had a small stroke which required 15 very, very short sessions of radiation.

i have brain cancer.

i’m having a very bad reaction to something. i think it’s the arthro - which i had to take to get over the pain of the port removal -  and residual pain - because everyone in oly and lacey was out of oxy. since, like ibuprofin, it’s an NSAID and has the same side effects, i’m taking ibuprofin now - weeks later. don’t ask.

chemo (finally) tomorrow. senior doc being more doc-like.  junior doc being a futz. (she didn’t even remember to put the arthro in the computer. must have a new girl.)

i *heart* my boots and slippers (but my slippers more cuz they’re funny - and warm).

little dog died late in january. nothing to say, other than i’m going through a depression and he’s not here to help out. i miss him terribly and wake up crying from missing him. almost 17 years. tears. random tears.

i can’t get clean. my skin looks and feels like fish - and it’s everywhere. cannibal says it’s another reaction. all i know is baby oil only makes things worse. just call me pigpen.

i woke up on c-mas day completely bald (hair everywhere!!!) and 25 pounds heavier - seriously. thank goodness i wore something loose to sleep. when in doubt, eat cookies - and after i finished off mum’s cookies (which were sooooooo good)  i made my own. coconut, brown sugar and a few choco chips. so there!!!  and they were also so good. not as good, but pretty damned good!

everything tastes like salt.

the doc who put the port in had to be convinced to remove it. i did not know that the argument went so far. all i know is they hardly ever used the port because it was always infected. the taxi driver didn’t even want to take me to the grocery store - despite the fact it meant more money for him. he just wanted to take me home to sleep.

my sleep cycle is strange.

so is my dream cycle.

i keep dreaming of aw. it’s b&w. and brown. and green. mucky green.

mucky green.  why in the hell am i dreaming of him?

upon having the port removed i, immediately, felt much better. the following day, though, i had to get the packing removed. s tried - to much screaming on my part. b tried with lidocaine with more success - but not without some screaming.

i’m not a screamer. really. not. a. screamer.

all in all it went ok. on saturday i did have to take 3 arthro to get through the pain, but that’s it. some days one. some days none. now i get ibuprofin. we’ll see.

for now, that’s it. more later. tomorrow. a week from now. a month from now. whenever.

i miss you.

i’m not dying.

today.

two computers died. not one, but two. the mbp officially bit it. the imac officially bit it. i’m now the proud owner of two dead macs - and a mb - which i may or may not get reimbursed for - and which cost over $1K (unlike the original of the computer with lesser specs, which cost over $3K). the lenova, at about $400 or so, i could’t get arrroved for. at all. i never even got the monitor because it was given to me *after* my furniture left raleigh and i had no room whatsoever for it in my car. so i gave it to a colleague and now, picked out my own. per me and thanks to the dead imac. i picked an hp due to the fact it’s an incredible monitor - and the fact that it’s 1/3 the price of the equivalent apple. hell i couldn’t get an apple for under $699.  or is it $599? regardless, i got a new monitor for far less money than i should have paid because i paid too much for a computer i may or may not get reimbursed for. and truth be told, i don’t want to be. i bought 3gigs of RAM - which amounts to 2gigs more than i originally had. i bought a monitor - one worth viewing my photos on and certainly not what would have been purchased for me or given to me. that one would have cost under $100 for a major-assed square box with no colour control.

in other developments, it was only herceptin this time (and next). my skin is so naturally smooth now - and my teeth don’t hurt as much (but cannibal junior is starting to look for a dentist for me as the chemo has destroyed my mouth - and i’m still not allowed to go to the dentist without getting knocked out).  my feet still hurt - but not need-an-oxycodone-every-four-hours hurt. i can get by with six. sometimes seven. besides, they’re only 5mg each, so what do i care? hell my little nephew takes a stronger dose. my hands still ache, though. no nails worth talking about. it’s going to take 4 full months for them to grow out *if* they grow out at the normal rate. anyway…

i hope the next cocktail will be different. this past one was horrible to the 85th power. now i can eat (sort of). and bake. and did i mention eat? things are still more than a bit strange - but it feels good to *almost* taste things the way they’re supposed to taste. it’ll take about a year post-chemo to get my tastes back - but this will do for now. couple this with everything else and, well, you have what you have.

oh, my brain is still really fuzzy. really, really fuzzy.

syd likes me though. he follows me around and gives me kisses. he stinks, but he gives me kisses.

i do like his kisses, even when he stinks.

ms. a took most of what my sil sent to hand out to the folks at the shelter. i really can’t eat a lot of is due to bad teeth and having different tastes by the minute. that’s fine. good, actually. people who can use it are getting it - and that’s all that matters (especially with this economy). i appreciate having someone to go out and feed those whose eating habits are bad because of that’s transpired with them. so brava to sil and ms. a.

so now it’s sleepy time. must relax. eat pumpkin pie (with or without crust - depends on a lot of things). drink my favourite drink (sans chocolate - i crave chocolate  but cannot eat it to save my gimpy soul). sleep well. and throw small soft toys at the tv. michael symon is on - and i do want to mame him. severely. good news is robert irvine is coming back to di in march.  does that mean he gets to come back to iron chef too - or do we have to endure any amount of that creaton? and if so, can we hurt him and get away with it?

people are so excited i’m finally wearing footwear other than randomly purchased slippers come on, folks, you didn’t just love those toggle red fleecy things - or the ones with the lumberjack lining) that pictures have been demanded. since all of this has happened pictures haven’t been at the top of my list of things to do (breathing comes first, followed by eating something that tastes remotely not yuk) - but i have the following to offer:

black toemales are simple

pumpkin mary janes are keen

i’m still extra pleased with the simple shoes - but the keens kinda hurt - which is so odd considering they’re the fourth pair of keens i’ve ever purchased, and none of the others ever needed break-in time. oh well, i’m sure they’ll be just fine if i keep wearing them. it’s only my left big toe - so maybe a little soaking of said shoe in bubble-filled water is in order? ok the bubbles are selfishly for me - but if i have to put a shoe-clad foot in water, it may as well be bubbled. meanwhile…

i purchased sesame sticks and aminal crackers (among other things) in the fm organic bulk bins. the sesame sticks are extremely salty - and the aminal crackers have this odd sense of maple. now granted i do like maple syrup (pure only - none of that mrs. butterworth’s stuff, although she is cute on the geico commercial) - and i don’t dislike salt (sea or kosher only - no substitutes), but it has to be in very small quantities. i might have to have amber taste these. it might be me - or it might be what things actually taste like.

i’m tired. it’s been a long day. i’m feeling good - but a little sleep  might be in order.

i tried to open my sil’s package today. i know, from yesterday, it was going to require a garbage bag for the peanuts alone - and gods know what for the packing paper. i geared up for it. i planned for it. i got about 1/3 of it done before i had to both abort the mission and crawl into the wedge to relax it all off. at the rate i’m going, i might have the whole thing done and fully open by sunday night. i hope there’s nothing melty in there. or alive. that would stink. actually, it should, so i guess i’m back to only melty.

it’s beddy bye time. i need to breathe into my little tube, finish my drink, and nod off into sleepy land.

oh and speaking of drink, all this milk can’t be good for me. oh well. the gogi berry ended up across the room with a substantial amount of force. milk has never done that. what’s a little full fat, weight gain and whatever else organic milk has to offer?

nighty folks.

happy birthday to me! happy birthday to me!! happy birthday, happy birthday, happy birthday to me!!!

in celebration of “my  day” (which my entire family ignores except mum’s phone call to me - i am, after all, proof that birth control doesn’t work - and i sure as hell didn’t ask to be born) the phone is going off, and the movies are going on. easy day. relaxing day. maybe i’ll tickle little dog and thank him for being around so long. he is special, even when he’s a dork.

to all i owe emails to: i had hope to get them written tonight; alas, the “feeling good” went away almost a quickly as it came. as s said, though, i did smile looking at the spaetzels in the grocery.  and c, you (et al) do even more than you know.

i don’t feel well.

i’m going to go to sleep now. well, at least to rest - and think of that cake i can’t have. ( i think n made a good choice of the key lime.)

hope to be able to write tonight - but if not, please forgive. you know i mean to - and love you.

hugs…ellie

ps: it’s the food network cupcake cook-off. help me every deity known and unknown! this falls right up there with the mummy who cried - CRIED - when she lost to the head artist for dc comics.

pps: cupcakes? whf are these things??? they don’t look like any cupcakes most of my friends would make (or me either). kinda like box cakes with box icing. *shudder*

a few hours ago, i had chance to watch a documentary about three fast food chains and how the grew from tiny,  one-off shops to world-wide conglomerates. it was interesting in some boring friday night respect - but the one thing brought to light that caught my eye was…

…mcdonalds has the best french fries.

this simple phrase was uttered by some boring, unmemorable fast food historian. (huh? how does one become one of those  - and what does one major in at college to become such a thing?)

but it’s true.

i haven’t had mcdonald’s fried in more than two years - but i remember exactly how they taste and crave them, miss them, want them.

there’s a mcdonalds about a mile from here.

i’m sure there’s a reason why i don’t just mosey on day and get some.

i have money. cash money - so it’s not like i’d have to pay by debit.

i need the calories - and they have the calories.

but they’re all empty.

but who cares?

maybe later today i should just stop thinking and rationalising and go get some. and while i’m there…

…maybe i should have a vanilla shake.

now i think i had a mcdonalds vanilla shake once - and if i recall correctly it made me rather ill. but for some reason i want one.

biggie fries and large vanilla shake.

i  should do that.

just like i should have those pancakes i’ve been craving for breakfast for years.

i don’t like pancakes.

i’ve had one mcdonalds vanilla shake in my life.

i haven’t had mcdonalds fries for years.

but i should have them anyway.

what’s the worst that can happen - more broccoli?

so i have a bunch of little bits of snacky foods i keep near the wedge for those time when i want something to munch. although the qfc bag is a lovely neutral colour, it’s more than just a bit too big hold the snackies i have around.

while perusing amazon one day i happened upon lefty the munchler. cute! very cute - but more so, very practical. so since i was already ordering the supplies for my latest experiment i bought him. he arrived today.

lefty (or spoodle, as he likes to be called) is just the right size for the many little bits of many snacky foods i keep around. he’s really durable, fully recyclable and a smile maker. all is well, right?

well, no.

apparently the pooch is too small for even a little kid’s lunch. or so the comments on amazon say. to that i say…

what the hell are american mothers feeding their kids?

spoodle is large enough to, easily, hold a full sandwich, a juice pack, some goldfish crackers and a bag of sliced up fruit. maybe some little chocolates, too. apparently this isn’t enough food. the bag is too small because the kids need more food. the seams split from the bag being overstuffed.

i wonder if the kids’ seams split from all the food they’re being overstuffed with?

so spoodle is right next to me filled up with little bits of cereal, goldfish crackers, smartees (can you believe i found a source for smartees?) and the other varied things i keep about. i’ll miss the neutral brown but overly large qfc bag, to be sure. but spoodle makes me smile. all the qfc bag does is remind me to take out the trash. maybe i should donate it to one of the kids whose mums think the munchler is too small?

ding dongs? check.

non-organic, full fat chocolate milk? check.

raspberry pims? check.

cheese danish? check.

spinach lasagna rolls in tomato sauce? check.

chicken pot pies? check.

i woke up one morning this past week feeling sick and tired of eating well. now mind you i don’t intentionally look out to eat well. i just do it naturally. anyway, i woke up with this idea that i was going to say the hell with it, fill my basket with junky food and fill my belly with fat and other gross things i don’t usually partake in.

so i did.

if anyone happens to need some slighly partially eaten junk food (except for the cheese danish - those worked out a bit too well) (and the lasagna rolls - those went into the trash) please email me. i’ll be the one muching on broccoli and rice - and quickie chickie soup.

yesterday afternoon i went to the grocery to pick up some necessities, some things to experiment with (3 pounds of tofu anyone?), and some things just for the hell of it (sure - i absolutely needed that second quart of bolthouse farms mocha thingamagig that is so filled with sugar i would drink it and swing from the trees if tree swinging was an option) and encountered two cub scouts and their pack leader dad. hmmm…very early for the cubbies to be selling - but i couldn’t figure out why they chose thanksgiving time to sell in the past anyway, so the earlier date makes complete sense. anyway…they were cute enough and nice enough - but really didn’t exhibit much personality. regardless, we all spoke politely - and i agreed to come back when my shopping was done to make a purchase.

it should now be noted that i was wearing a hat yesterday afternoon. the rainy season appears to have come down on us - and i’m not a huge fan of random liquidy drop o’stuff falling on my tennis-ball head.

so i shopped, got the promised cash and went back out to see what i thought was going to be 3 very dull but polite people.

wrong.

mum and the daughter showed up. the cubbies either ate some kiddie crack - or daughter and mum pumped them full of sweetie sweets and sugary drinks in my absence. even stoic dad was acting more than a bit, ummmm, outspoken. yeah, that’s a good word to use for a man who tries to get people’s attention by shouting out silly phrases and the like. either that or he had a few beers hidden under the table - but i didn’t just say that. anyway…so we’re outside and talking and being stupid - and the littlest cubbie (about 7 i think - old enough to have some permanent teeth and an obvious sense of his unique self - but not old enough to be anything but a little kid) says something about the fact that he’s cold and i’m not because i’m wearing a hat.

so i asked him if he wanted me to take my hat off…to which he responded in his best cheek holding “home alone” immitation

“aaaaaaaaaaauuuuuuuuuuuuuuuuuuggggggggggghhhhhhhhhhhhhhhhhhhhhhhhh”.

the rest of the family went silent, until the daughter whispered “that was a terrible thing to say”.

mom demanded he apologise to me. dad slunk away. the other cubbie, i think, might have crawled under the table or something because he disappeared from site.

i burst out laughing until tears ran down my face.

so i said to mom “no need to apologise” - and took on the kid.

“you know i’m sick, right?”

“right!” (he was such a definitive thing to boot.)

“and you know the drugs that will make me better make me bald, right?”

“right.”

“so you know i’m bald, right?”

(and this is where i had no choice but to get a heartwarming, squishy feeling)

“oh i was just teasing you. you can take the hat off.” (see above re definitive - and throw in some double duhs.)

so i asked the cubbie what kind of popcorn he likes - and he told me - so i bought some and handed the box to him.

and he looked at me with such a happily surprised look on his little adorable face i wanted to melt into the sidewalk.

note to parents: your kids are not stupid. they’re just really short and undereducated. so educate them. eventually the short thing will wear off naturally.

note to kids: once you’re educated, spend some time educating your parents. just because you’re short doesn’t mean you don’t know anything. in fact, you know far more than most people give you credit for.

note to all: do a good deed daily: educate someone. and if you happen to be gainfully employed and in possession of some disposable income, buy some popcorn and give it to a cute cubbie. lordy knows you don’t need it - and the scouts will be grateful for it.

i’m craving carrots. have been for the past few days. i’ve been doing my best to find things to curtail this thing and doing pretty well. lo and behold, what was the iron chef challenge today? carrots.

the world just isn’t fair.