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i have put off talking about what's been going on for the last few weeks after i lost my initial post.

there's a reason for it, sure. i didn't want to go through it all again. but, i was inspired, so here it is.

hard to read. take care. )
addyit: (Default)
well, there's been a lot going on- so i should update.

i was pretty sore last night, and one of my friends worryingly asked if i'm in line for a transplant. i assure you, ALL of you, if anything that radical was in line, you'd be the first to know since you'd be some of the first i would go to for support.
i'm no way near such a drastic step.
i'll explain what's been going on the last week.
Read more... )

dog fog.

Mar. 17th, 2011 12:11 am
addyit: (Default)
what might happen if i can't take my TOBI, once?

i know the whole point is uniformity, but if i have that stink near me, i'm going to start puking. i normally would just cope and deal with it (when i took it for the first time, it took three times as long because i didn't have a PARI mask, and i was literally vomiting into my mask with determination), but i don't think i can deal tonight. i've been sick all day and i can't do it right now. if i take the TOBI, i can't take the rest of my pills because i'll be busy puking... which means i won't be able to sleep at all, since i won't be able to keep anything down.

just... fuck. i have to choose my evils, obviously.

videos on abandoned pet dogs protecting each other, in shock (forced to be abandoned because of the tsunami) did not help today. i need to remove some people from my list, or remove them permanently from my newsfeed. i've seen only two videos of Japan, and it's more than enough... particularly in this delicate state of mood.

everyone was staring at me when i went out today. mum said i look chalky. you know what that means. O.o

i feel like a chalkboard.
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i've got my next 28 days of TOBI in the fridge. i haven't started it yet... I really need some hard sweets to suck on before i start that.

the Co-Pay program works. it covered over 600$. Blue Cross, natch, got the rest first. (over 2000$). i love Canada.

i've also got two PARI masks i can use for hypertonic and the TOBI, so it won't take as long as it used to with the regular masks.

so, 28 days of cipro, TOBI, nausea, and hard sweets. (i didn't want to push the nausea just yet... not until i'm properly prepared).

the pseudomonas a was only "scant", so they said (less than last time), so who knows. i don't know how they'll be when they officially call the eradication unsuccessful.

i'll be putting up posts on private about my progress of the eradication. i'll keep the ones i post about under a cut and with a note about it being "crossposted".

i need to brush my teeth.
addyit: (Default)
i've had a few rough days.
there was a recurrence of the stupid ridiculous gut pain (stupid fucking sludgey gall bladder). it's not stones, at least... i have a f-list friend who has those. :-/ i feel like such a baby. at least i had some T3s to coat over the stupid, as well as other sleepy meds.
the sleepy meds have given me a hangover headache that's lingered all day... i'm going to try halving my dose. it's too high, obviously. fucking temazepam.

there's something else i'm scared about.
i think my fistula might have "cracked" open. there's no weeping, draining, connected to anything inside or anything like that- it's just a slight opening, right on the surface of the skin. the past few weeks, there's been a small pain in the small of my back, much higher than the location of the coccyx, but in the same general area. it's a circle of pain, around the side of a quarter, pressing into sore muscle.
i don't know what it is, and i feel daft asking my GI about it. for all i know, it's just  achy inactive back muscles.
just... sometimes, it's not good to know more things about crohn's disease. i'm scared in case it's an internal abscess.

times like this make me want to go shopping. only trouble is, i can't, since i don't have any money. so, i have to wait for a few weeks for any excessive indulgences. (like... books. or t-shirts).
addyit: (Default)
i'm intensely irritated.

i refuse to believe fistulizing crohn's can be controlled by a change in diet (SCD, Paleo, whatever the fuck is in fashion at the moment). sorry, but no. not possible.
anyone who says this is so is a goddamn liar.

"choose another path" to "avoid immune suppression and surgery". FUCK YOU.

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i really don't know what i'm doing.

it makes me seem as though i do, when i don't. i can only muddle and suggest.

i just wish i could do something to make use of this knowledge. when i get into something, it's insatiable, particularly if it's history related, or even medical-related.

it's just... writing about myself feels so mundane. i can write about myself through explaining scenarios, or how to make things work better, but just about me me me me me... i do it all the time, but i'm finding it tedious.
hah. i did it again.

where can i find a job that is reasonably low-stress, limits my exposure to dealing with too many people, and where i can use my knowledge to something useful?
what is my knowledge?
medical issues, manifestations of crohn's disease and cystic fibrosis.

it's so ODD. i want to help people, but i want to be left alone.

if i know these things, these things i would otherwise NEVER have found out about, i want to use them to teach people, to help people. THEY MUST BE GIVEN A PURPOSE. pain is meaningless apart from it manifesting itself as a form of disease, unless it can teach people about the disease itself.

i want to work from home.
and, my gods, do i want to write about it. i want to use my words to slip their ways through people's ribs.
i want them to REMEMBER my words. not necessarily me as a physical form. bullocks to my physical form.
the words are what matter.
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i understand why Bob, playfully and seriously, believed himself to be a superhero.

i feel as though a mutilated doppleganger of myself is inside me, doing everything it can to debilitate me. it's ME, yet it's not.

people with chronic illness, they often think it's a part of themselves that's doing the damage. it can be, but at the same time, it's the disease... but what are you if not part of the disease, particularly if it's genetic?

i... just like to talk to people about these things. it makes me feel human to listen to people and make them feel better by just being me. is this the feeling that nurses and doctors get when they heal and treat people, and it works out, somehow?
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pain is strange. nerves are weird. maybe the greeks weren't far off in their ideas around the humours. we don't have mushy soup, but look at what's in our blood, and what influences what. sometimes, you don't even know you're in pain... it's how your brain adjusts to the changes. it becomes white noise.
pretty strange. interesting. bewildering.
i'm having back pain, i'm feeling it in my back, thigh, hip, and foot. weird, no?
the beginning of a year makes many people happy. me? i get nervous, because it's a new year. i don't know what's coming at me. and, each year, i progressively forget this, only to be reminded of it every new year.

...for some reason, each time i feel like this, i can't help but reflect on the stupid things i've done in my life.

i had my ultrasound yesterday. the drive was enjoyable on the way in, but tedious on the way home. it's never reassuring when your technician looks at what she's scanning sideways.
i expect i'll hear about what's up with it in the next week or so. i have an appointment with my GI in February, and i can always see him before then. the pain cycle's started again, and i don't know if it's the Throes of the Moth. it's certainly time for it, so who knows. it's not as bad as it was before christmas, but my doctor's office is being a pain. they won't accept or do anymore fax renewals for any of my meds, so it means i have to go and see them, and get a paper script.
i thanked my pharmacy for trying. they're very patient with me.

i need to contact my school.


addyit: (Default)
i think i've found my CF image, my reference. i had my crohnie reference, and now, my CF reference.

i've wanted to make an icon of it for a long while, but i have no idea how. i used the image on my twitter, just so i can have it up somewhere.

(for the record, i've always loved medusa. she seemed to get such a bad rep.)

raw meat.

Jan. 3rd, 2011 01:28 am
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i'm very faded black and white at the beginning of this year. this isn't what i was expecting. my emulsion is washing away.

it seems all i'm seeing are a lot of desperate moms with sick CFer children gagging for a "cure", ill crohnies who are scared their meds will stop working, and another semester of avoidance.
i think i need to see some positivity beyond myself, because it's all very well for myself to be well.... it's hard to see other people suffering so much.
i frequent and write to moms and other CFers/crohnies on other boards because i sometimes have a piece of otherwise useless knowledge which might make their lives easier.

what kinds of new year's resolution (coming from someone who doesn't believe in them), consists of hoping things don't get worse?
addyit: (Default)
the pain's stopped.

it was getting to the point i was really worried, but i was also determined NOT to go or do anything before christmas. i was having 4 T3s a day, resting, sleeping, and attempting not to eat too much.

now, it's gone. well, just before christmas, it was gone.

i'm puzzled!

maybe that extra tablet of docusate did the trick.... maybe i hope you were right, witchy_miss, about a partial block? i'm still going to have my scan in a couple of weeks, so i guess i'll see. :-)
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it's been a strange day of recollections.

nevermind that. there's something i wanted to share.

i've always thought in... what's the word. similes? i've done this for as long as i could remember- as long as i've wanted to write, anyway. i had done it so much that, when there was a writing exercise requiring us to write in similes, i didn't understand what it meant. the teacher said, "You're JOKING, right?" ~chuckles~ ah, memories.

well. i wanted to share my visualization of Crohn's Disease. this stems from my childhood, what it's felt like to me, and the way it's been described to me by others.

i always think of the creatures from the 1986 film "Critters". i saw it in theaters (i was only 6 or 7) and it scared the life out of me. even the visuals that i'm picking through to post here still make me shudder.
they were little creatures that come to earth from a meteor (jumping on the E.T and Gremlins franchises), enjoy burrowing in dark places, and eat human flesh.
thousands of bloody teeth (more than two rows) in perpetual grins, a burning red stare, and wirey hair. they always seemed to be laughing at the pain they inflicted.
are you brave enough to face a 1980s animatronic monster? )

so, in part, with the crohn's? i always imagine a creature like this, with as many teeth, gnawing away at me. and, once the drugs and treatments control it in one area, it immediately turns around and finds another, never stopping the constant chewing.

i don't have a face for CF yet. i have one for MAC, but not for CF. hmm.... that one would be harder to think of.

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i'm crying. well, on and off. i can't help it after days like today. something has to give eventually.
Whenever i hear my mother cry, and say, "I wish it would go away", i know she means the CF/crohn's, but it feels like she means me.

she doesn't, of course. i know she doesn't. but if i was born with something, surely it means i was meant to have it? if it's something you're born with, something that's genetic, something that can't be changed.... then what should you mean when you say, "I wish it would go away,"?

i've become, suddenly (although it's what i've always been), the child who shouldn't have things wrong with her.... except she thinks  it's her fault.

you can't argue this with a parent because there's nothing logical about it.

this is why i don't usually allow her to come with me on my health appointments. it makes her see what i see, and it makes her distraught. sitting in waiting rooms..... you can't look at it from a "procedural" point of view when it's your family.


this comes from an altogether more insane situation than you'd think. my mum had today off, so she came with me to the TB clinic. she'd only been twice before, and the situation was very hard (it's never easy when you hear from the horse's... in this case doctor's... mouth that it's unlikely the MAC is going to be cleared from my lungs). sitting in waiting rooms is hell for her. being on the active side of the waiting room, sitting in one with me is never easy.... especially if you have to wait your turn, which, of course, you always have to.
by coincidence, i met a lady who was talking to EVERYONE. turns out, she has crohn's, and was coming in for her TB scratch test. she's going to start on Remicade, so she needed one. well, i'm a loud mouth, so i jabbered on about the information she was curious about... and i think it helped her.

well. back to the insane situation. we spent an exhausting two hours in the clinic, and was greeted with an insane man screaming at his wife while we were going back down to the car park. (mum called him an asshole. it didn't make him shut up, but sometimes, you have to tell them). we decompressed at a hotel lobby bar, ordering some delicious things, and we came home.
dad was going to the doctor's, and said he was going to pick up some sushi on the way home. so, i picked out a few things with mom, and in going across the room to retrieve my cup of tea, on the way back i slipped on a quilt and fell on the floor (soaking myself with my tea, of course... could be worse, could be soaked with sugary tea, right?). my mother spazzed, and my dad said it was her fault for leaving the quilt on the floor (she leaves them there for the dogs to lay on). so, there's my mother, having a panic attack.
remember, there's nothing logical about these feelings. she, i think, was launched into "it's my fault" mode (about the CF and crohn's), and all she heard was "It's your fault".
so, there's my mother, sobbing, and saying, "I wish it would go away." she's been laying in bed and unable/unwilling to move ever since.

see? i told you it was insane. not entirely unexpected if you know my family, but there we are.
i've told mum she's not allowed to come to my clinics anymore. if they immediately put her on edge and make her ready to collapse at the first sign of spilt tea, she's not allowed. period.
addyit: (Default)
i've also been reading a great deal at a CF facebook site. (i don't link together my posts since i prefer to keep my LJ and facebook separate... i talk about friends i know, face to face, here, in ways i'd rather not see them read. and believe me, if they knew, they'd be nosy enough to want to read EVERYTHING.... which explains the special friends' cuts).
why the separation.
well... it's freeing, i suppose. i can write what i like without it becoming everyone's and the next door neighbour's cat's knowledge. and besides, it's something i think everyone should do. one sees the trouble if your boss googles your name, or tries to locate you on facebook, hmm?

anyhoo. what have i been up to... taking the joker in (bastard started up again... WELL... we'll get you sorted out, you cunt. YOU'LL SEE).

i've been posting, a LOT, at a CF facebook group, as i've said. there's a lot of parents in there, and me, being a know it all, i have to express my opinion if there's something i know about. even if it isn't something i know, a lot of the time the parents really need someone to talk to. from the way they talk, they seem quite desperately on their own. :-/
i understand, now, why my doctors are good. they know how to deal with people, since they would have to deal with a LOT of very sick, very unhappy people, all the time.
that's the point of the groups, too. they offer communal support for little questions you feel silly asking your specialist about. of course, me, i'll ask them anything (i don't care what they think.... not really. LOL it passes my mind in a missed spark as i yatter on about possibly nothing).
and, if you're like me, and have oodles of time, you often search for information for them they're too busy to find out about themselves. (of course, i rarely do THIS, unless the question is REALLY interesting and i want to know for myself. take the MAC and showerhead thing i wrote. it was something i researched with my mom, we went over EVERYTHING for about three weeks, and at the end of it, we had some good answers.... what's more, strangely common-sense ones.
it can range from how to keep your kid busy while they have their saline, to questions on a link between scoliosis and CF, to... well, it can be anything. i asked if TOBI made anyone else nauseated, as it does me. turns out... not really! i'm special, i guess. ~gags~

i guess it pays being a little loud with your opinions and advice..... within reason, of course. (i try not to yack on about something i have absolutely NO idea about. you learn a lot, too.)
addyit: (Default)
because, in many respects, i feel exactly the same way as Bob.

addyit: (Default)
i joined a CF facebook group a couple of weeks ago. it astonished me, and brought home to me, how many CFers deal with the worst bugs SO early in life.. and how frantic it makes their parents.

one mom talked about the year and a half they lived in Hawaii. it is, apparently, the BEST climate for CFers. the air is clean, salty, and the climate is perfect. her daughter did remarkably well while they were living there.

unfortunately, they had to move back, since on the islands, there's no CF respirologists or pediatricians. well, there's ONE CF pediatrician, but this doctor was located on an army base, and they don't share their physicians with the general populace.

don't you think we're missing out on a HUGE possibility here? i mean, if Hawaii's the best climate, and there's a limited population... surely Hawaii could draw in CF doctors of all kinds, as well as patients? i mean.... think of the possibilities! CFers could live there, or could go there when they're sick! it could be like a spa. you know, as close as 40 years ago, when people had TB they used to go to sanitoriums? "The San", is what they called them. they were used for all kinds of illnesses, from breakouts to breakdowns.
well.. why not CF?
i know of a girl who has CF, and although she's done all she can to be in the best of health, when she became pregnant, she couldn't take her TOBI because she was afraid of the possibility of deafness to her child. well, her health worsened, she lost weight, and she became quite ill. her mum was at her wit's end.
so, she was sent on vacation. her dad paid for her trip, and she went with her hubby. i can't remember where, but the climate was hot, and it was a break. after a couple weeks, she improved immeasureabley, gained weight, and when she came home, was able to eventually have her baby without incident.

strict measures would have to be in place to ensure there would be no cross-contamination and to keep things clean (legionairres is rife at hot places with air conditioners)... but IMAGINE the possibilities! people go to Hawaii for the most ridiculous reasons.... but THIS could be a real one.