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16 September 2013 @ 10:39 pm
.... as i referred to it while he was taking the sample.
(he wanted to make sure i wasn't in pain).

that part never hurts for me. it's always the speculum. "clickclickclick". urrgh!
odd, that.

and it's TRUE, too, from what they said in Ab Fab.
they look at your cervix, but can't look you in the eye afterwards. odd. what's the big deal? it's not as if i was Annie Sprinkle doing a performance piece.

i swear, they don't do PAPs in the UK in stirrups. you're on your side. i wonder if it's done with a speculum as well... hmm!
15 September 2013 @ 04:06 pm
 i have decided. 
if i ever, EVER want a child, i will adopt....
or ask my sister to be a surrogate. 
i'm sure she would if i was desperate. 
...thing is, i'm at the stage of my life where children, babies, are in the forefront because it is, or has been, for many of my friends for a few years. i didn't really examine this part of myself until i saw people like me having kids. many of the CFer parents i know ARE my age, or even younger. as for having one, it never occurred to be it would be a possibility because of the CF and Crohn's. if i did it, i think everything down below would be pretty well destroyed if i went the natural route (which the docs would be against)... and the meds i'm on, not good for babies and their development in utero. 
even though i have had a few wonderful examples, i don't think it would be wise. 
i have the interest. how can i not? i'm SO proud of the CFer mamas i know who have done it. i'm SO amazed at their children and their beauty, and of course, i  see a lot of young CFers, even in utero. (at a distance, of course, via internet). 
people do seem to take this as a fact that "my biological clock is ticking" and i have the urge, but strangely, i don't. i know for a fact i love my quiet life and a baby within it would probably make me crazy. one cog in my brain goes nuts if i can't have silence or quiet time, and you don't get that with a baby. what if the emotional ties never developed? it can happen. and once you HAVE a baby, you can't go back. you have another life to consider for the rest of yours. 
i've also seen the emotional highs and lows from the CFer mamas who have sick kids. :-( dying kids, kids who are RIGHT now having lung transplants. (one boy is nine. imagine that- NINE! i freakin' hate the bugs that destroy our lungs.) 
added to the fact to HAVE kids, you most likely have to have a partner and have sex, and sorry.... no interest. i think i'd sooner do IVF, and i think it would be important to have some sort of support in a partner. i don't think i could be like my mum and do it all on my own after a nasty divorce, working with two little babies.
also, i have rather odd ideas of children needing to be conceived in passion, rather than perfunctory fucking. the concept of THAT is offensive to me. conception is such an unconscious matter to begin with- passion is NOT needed, but it just feels like it SHOULD be, you know? 
i know. not reality. but i've seen couples do the whole impatient "tired of waiting.... MUST have baby so sex must be done right now due to temperature and ovulation" thing and the concept just offended me SO much. if you're going to HAVE a baby, why shouldn't it be fun instead of just lying there, waiting for "the right time"? you might as well make him cum into a cup and use a turkey baster, except the other way is just faster and simpler. just... UGH!
i don't mind mamas taking folic acid and their vitamins... but when they take vitamins to try to "predetermine" the sex of the child, that's when it gets weird. 
of course, i wouldn't be on my own, really. i'd have my mum to help me with a baby. she'd be delighted, and angry, and scared. 
there'd be arguments. she would be 100% against a pregnancy in my body because of the health problems and long-lasting impact. 

i guess people are just expecting i should be DOING these things because they're the "normal" way; the flow of life. but my life's NOT normal, and i don't think it ever has been or ever will be. i don't mind that. 

it's a shame that a doula has to be a woman who has given birth. i think it would be awesome to be one. you're a part of it for a while, then you part, but it's an episode of your life forever. 
to support someone through that time in life, of a child's life, before and after would be AWESOME. 

i think it would be one of the coolest things to be there during a birth. i'll have to see if anyone would be interested in having me nearby. as antisocial as i am, i like to think i feel the "vibes" of things and the sway of changes of mood, feelings, and the concept... it just seems awesome. 

i wonder if they have male doulas. 
14 September 2013 @ 12:03 am
i may need to start an official Jeremy Brett collection. i have the Sherlocks, of course. i recently acquired "Jennie", where he plays Count Kinsky.
i'm sure i have many Brett aficionados out there.
any suggestions for good drama?
i'd probably go for My Fair Lady, but his singing was DUBBED! :-(
i can't think of anything else offhand he was in.... it's just my brain.
13 September 2013 @ 01:14 am
i find paintings infuriating at times.
i get drawn in by one painting i see while reading geneologies online. i look up more paintings of the same subject, and find similar loveliness.... but different eye color. different face shape. sometimes the two have no similarities at all.
i LIKE consistency! i know the whole point of painting was/ is to follow a fashion in the times. looking at any painting from any time proves that. and yes, some eyes have colors that change.
but when you get to the point of having no reliable evidence of how someone looked, truly looked... it's so frustrating!
it keeps HAPPENING to me.
i always think of Lely's quote to Cromwell from Horrible Histories: "How much, Sir, would one like to look like, Sir?"
good ol' Cromwell, warts and all. i should see if there were more paintings from that time in England, even if it would have been seen, no doubt, as entirely frivolous and sinful.
i love me some good ol' verism. ahhh!
03 July 2013 @ 02:58 am
strip away any old gauzes and undies.
shower body to freshen everything.
check skin with hands down below for superficial peeling skin (skin doesn't like fistula drainage and reacts).
go back to shower to scrape/exfoliate the dead skin away with exfoliating gloves and soft foot brush. rinse clean.
dry body with hairdryer and washcloth. 
examine below (fistula, sore spots) with fingers. (to judge where balms are to be provided).
choose calmoseptine pommade and apply to fistula and anal area, as well as tender spots exfoliated. 
apply nystatin cream to vulva. (w/ finger condom)
tuck makeup cleaning pad above fistula to catch drainage (close to anus, too, in case and drainage comes from there).
find Tena breathable knickers and cotton shorts. 
insert ovule for vaginal health (provacare ovules), rinse equipment. 
attach enviro-friendly pad to tena knickers.
tug on.
wash hands well.

(ladybits in disarray due to lowered immune system, fistula drainage, antibiotics. even oral fluconazole x 3 days produces partial results)
11 June 2013 @ 09:40 pm
 Liberals/NDP. Liberals, NDP. 
politics exhaust me, but when the party in question may be involved in the funding of K, it goes a little beyond EVERYTHING. 
i have a feeling the the NDP would be more open to fund the drug that is, right now, giving me a reason for living, since they have been very open-minded and supportive of me in this current fight. true, no one makes promises in light of an election. 
the Liberals? i highly doubt would do this, even if there are children involved who would benefit. bloated government officials and medical cut backs don't exactly seem to be eager to cover a 300,000 a year drug. then you think of the past, and see: NDP/supportive healthcare. 
Quebec didn't do it, so why would they do it here?
as i say to people, so many countries said no initially, and were forced to change their minds due to public outrage. 
so, once my own medication runs out and i exhaust every other avenue at my disposal, i either have the option of moving to another country that does fund it or suffer. 
wait for the symptoms to return... which they would, immediately.... as they did with the Crohn's, once that medication stopped working. 
the very concept wants me want to take up defenestration as a temporary hobby. 
even at my most desperate moments, i'm vividly aware i'm out of control and immediately do something about it. wouldn't it be nice to be a fainter? you'd faint, OMG, people would see to you, get smelling salts and coddle you. i'm always the opposite- vividly awake and aware of everything. 
i'd leave scars on the ears people who delve into politics, that's what i'd do. especially those who decide these things. there so little else i could do. 
today has not been a good day. 
my dad's been diagnosed with pulmonary fibrosis. funny, huh? they think it might be connected to one of the previous jobs he did years ago. with this, it can go badly quickly, or be no problem at all. i think, since he IS well and only has a little patchy spot, it might be the latter, but who knows. 
my nan had it, caused by a medication to correct irregular heartbeat. her death was cruel. it actually reminded me of Bob Flanagan's death.
could i go through a death like that again? nan demonstrated terrible symptoms before.
what are the odds to two people SO different having exactly the same disease? tell me, what ARE the odds? no genetic connection, no similarity in physicality, nothing. 

is this what happens when politicians get involved in the funding of medications, when the costs are high? WOULD they even get involved with this? i honestly can't see how they wouldn't. 
28 May 2013 @ 12:02 am
 finds the nights so beautiful here, in a quiet room with a window opening into the city.

the lights are golden, with soft green, and you can look at each window, guessing at what each occupant is doing.
very like Rear Window, but hopefully, no murders.
the last time i was here was during the hockey riots. that was... interesting.

i wrote that two weeks ago. 

i couldn't concentrate to finish, and i'm not sure i can now. though i can look at my cat and to her meows, make kissy noises at her while typing. no comparison to a few long pets. but now she's found her stinky little lamb toy she can kick senseless, i think i'll write a little of what i've been thinking about. i've mostly been thinking aloud on facebook. 

there is a peace of mind there i don't have right now.

this kalydeco business is scaring the fuck out of me. 
the waiting is worse than waiting for the actual drug. before i got it, i thought, hey, no bother, i'm at where i'm at, i have my regular meds, i can go into hospital if i need to, no problem. 
and now that i HAVE it.. i'm terrified i'm going to have it taken away. 
my mother's plan changes in June. due to my mother's union busting her drug plan's nuts, they've agreed for me to be given two months more funding. after that... we're hoping Pharmacare will have made up their mind about it in BC. 
Quebec is making their decision on the 2nd of June, and Alberta will soon follow. 
i don't think i need to go into too many details about why they might refuse it. 300,000$ per YEAR? i'm convinced BC would prefer paying for services they'd be forced to pay for, like hospitalizations, other less expensive medications and transplants. 
it scares me because i'm better. i'm WELL. i've not been this well for over 6 months, over the time i've been trying to shake the breathlessness and low exercise tolerance. i couldn't walk across a room at a normal pace without coughing. now, my mother, who has a healthcare worker's walk, finds it difficult to keep up with me. 

i don't know if it's the combination of the cayston and the kalydeco. i don't know. 

and then i think about people who have died because they couldn't get this medication, people still waiting for it, people who are desperately holding on to get the combination drug- maybe VX 809 and K. 
the children who are too young for it, because they don't know the effect it would have on young young kids (and are probably only guessing on those still not in their teens yet). 

for all my wellness, i have no energy. partly, this comes from 6 months of hermitage in not being able to move far. also, i'm terrified. no panic attacks or anything like that. 

what is this miracle outweighs itself? 

what if it stops? 
what if they say, "No, we're a bunch of cheap bastards who would prefer to see you sliced open like a carcass and have your pus-filled lungs snipped/scraped out than give you a chance at a normal life"?

it makes me think of the days where there people recoiled from monetary gain at the expense of the suffering. 
like with insulin. 
it didn't happen often, i KNOW, but the logistics of how Kalydeco happened, and how it will be paid for, rankles at me. it rankles at doctors who treat CF patients, CFers, their parents (all who have raised money for something like this, only to be given an impossible price tag). can one person purchase an entire mortgage per year?

CFers should have been given shares in the company, just to be able to afford the medication. (some of the cost). 

it was easier before they gave it to me. way easier. 
all i've been doing is talking about it. there's no room for talking about human things.
CF has always been on my back, and now it's enveloped me, mocking me. 

i've seen someone die with pulmonary fibrosis (medication caused, not another reason). i don't want to die that way. 

20 May 2013 @ 02:20 am
 i have felt this three times.
1.) after my initial, terrible lung infection. after 5 months of suffering, weight loss, breathlessness, production of yucky junk, all through a semester of school and my GP completely NOT seeing what i was going through, i was finally referred to a respirologist (after demanding, in tears, for this) who prescribed levaquin. i felt instantly better the next day. 
i was so angry, at it having gone on for so long. it was through so much trying, and getting no where. it's what i presently call "throwing the ball back". you know how when you play ball, and you throw it back and forth? well, it's one of those situations where the situation/ball was thrown back, constantly, to me and my mum, for us to deal with. i ended up with irreparable damage. this happened again later, with another doctor who missed things, but this was the first time, and something i can never forgive this doctor for. not that i need to- he's dead- but i still can't. 
2.) my first Remicade infusion. i was frightened at the possibility, since no one had told me what to expect, at ALL. we received a DVD telling us what to do, but never what to expect. i honestly thought i was going to have a reaction and die, right there. instead, the pain slipped and drained away. it was as if it slipped down into the ground, and disappeared. it had been months, nearly a year, since i had been pain free. i felt the exhaustion, finally, that pain gives you when it's incessant. i wanted to kick myself at the fear i had, and how long i had put it off, even though the other meds did not work/made me worse off. i was afraid of the immunosuppression, with good reason, as it turned out. 
3.) now this. Kalydeco. 
this improvement, this change, frightens me. no coughing (if there is, it's brief production, thin, and slight yellowing). no sinus issues past the first week or two (despite a few frogs) and no shortness of breath. 
the first instance of shock happened when i bound up the stairs, unthinking, to fill Oona's dish, and i waited for the shortness of breath... it never came. 
i don't need liners. i don't cough. i can go for walks. i don't know what my pfts will be like... but they will have improved. i felt no huge improvement in hospital, but once out- things escalated. 
it's a feeling of shock. and anger, too, (not for me, but since i know this drug isn't readily available for people who need it). the cost angers me, just like the cost of the Remicade did and does. there is something wrong on people profiting on another's suffering to this extent. this is, at this point, a lifelong medication, financed mostly by donations. CFers offered themselves as subjects, expecting nothing in return except MAYBE something that could change their lives. 
what about the other CFers who don't have this genotype who would happily try it, even if it did nothing? just to SEE if it made a difference? say, those on the transplant list or a hair's breath away from it? some ARE taking it off-label in the US. 

these times terrify me. puzzle me. piss me off. 
i'm happy, but it's a fucked-up happy. 
i want my friends to have the benefit of this drug. CFers with kids, who have shitty PFTs and bowel issues, those who have sinus surgery once, twice a year. i want more kids to start taking it before they become pancreatic insufficient. 

what about the G551D kid who died from going into respiratory failure after going in for a procedure to have his adenoids out? he was 4. he had a g-tube. too young for the medication. it's not as if they can't swallow pills- they become champs at it at 2 years, sometimes younger, rather than gag down enzyme pellets. 

it's going too slow- it's TIME to move faster with this. 

i don't know what the long-term effects will be. i don't know what they will be with the immunosuppressants with me. i'll probably get cancer, i don't know... it happens to people who have had transplants. 

i don't fucking know. 

isn't it time? shouldn't this not be about how much a drug company makes? 
there are good precedents for good medicine- like insulin. why can't we follow that?
 i'm exhausted from today. 

it's day one of Blue Lightening, and all i've been doing is talking about it, all day. 

the unit is excited, the clinic is excited. i was woken 5 times by the resident, CF doctor, nurses, all reminding me about my "new medication". when the fifth nurse arrived to remind me, i told her i had wanted to rest. (i hadn't been able to sleep the night before because of the stress of the upcoming day). she told me she wanted to ensure i was going to get it at the right time, and be able to space out the medication as it was prescribed. 
they were, of course, excited, and were probably wanting to see me take the medication myself. 
they didn't know, of course, i needed to eat something with it (preferably high fat, 20g) and needed to follow the kinds of hours i run at home. 8 am-8pm dose is NOT how i live at home. i gently told my final nurse visitor, Anna, this point. 

i am, naturally, a little bitter about my clinic. 
they're excited i'm here, since they can see how it responds to me in these last few days i'm in on these IV antibiotic meds during this tune-up. 

they don't seem to realize the need for this push of fat with the dose, and that i would prefer to take this medication in private. 
it's been me and mostly, most of ALL, my mother who have pushed to finally get this medication into our hands. the clinic only got on board, dithering since January, seemingly more willing to wait until Pharmacare covered it. 
we've done most of the leg work ourselves. we knew all the information long before the clinic did, because we actively sought it. 
it was only when the pharmacist at the clinic came back from extended leave (i hope it wasn't anything serious. :-( she was gone a long while. they had clearly begun to depend upon her heavily) that we felt we finally had someone in the clinic to help. 
a phone call from my thorasic surgeon must have helped, too, because suddenly many things were moving forward that had been left to dither for several weeks. 

i wish i could put this onto them being stressed from a heavy load at the clinic due to the change of the seasons, but i DID wonder.
i found out the real mainstay respirologist was due to get a major surgery done this week- a knee replacement! poor man. i hope his surgery went well- those are nasty. and take a long time to heal. :-( it's going to be hard at the clinic without him.

finding out there was a CF kitchen and laundry facilities was marvelous. shame the CF clinic never told me about it. :-/ i learnt from one of the nurses. so, it meant, a clean fridge, washer/dryer, toaster, blender, microwave, a table and chairs to sit in, and sterilized real crockery to use. it's been so nice to be able to eat out of a hospital room like a civilized person, even if it's for a cup of tea. 
mum and i are planning to add a sight more pieces of cutlery, glasses, and a teapot that can withstand the vigours of a sanitized wash. even things from the Salvation Army would do. the kitchen have most things- maybe we could add some high fat items to leave behind in the larder. (canned, junk food, things that won't spoil, etc). 

educating people about these things is difficult, especially if it's the same thing again and again. 
i LOVE that they want to learn about it. i've even put a video on my reading list on how Kalydeco works. they've found that very helpful. 
09 April 2013 @ 10:56 pm
i wonder how many of CFers take matters into their own hands when it comes to their meds.

say, when you're sick, clinics dither and comci com ca, and you don't want to take the extra step of having to go in the hole?

i did, and i hope it's going to work for me. i AM telling them what i'm doing, i just hope it's the right thing. 

it's so frustrating to call the nurse at clinic and have them say, "Well, I don't know..." and then have to wait to call me back (either doctor or nurse). i do so prefer email with this, and i know some of the doctors prefer it, too. (not all, sadly). 


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