addyit: (Default)
2015-04-04 01:19 am

musings. (no health from the appendix- it's been too precarious).

 i have passion. passion breeds respect. i don't measure what people think of me (because in the end, does that matter?) but in the wonders i see in the people around me. it brings up a swell of emotion. emotion, passion, respect beholden me. (or is it the other way around?)

this is why i admire feminine beauty, will, strength. (and not in this order). 
the peccadilloes of petty vanity bother me. who says one is more beautiful, more powerful, more splendid at 29 than at 30? where do we learn these things?
the bodies that people are presently chasing after aren't beautiful. they're more aged than women triple the age and who are lighter of heart. 
it's the spark in your eye people love, not the smoothness of your skin.
i was told these tales. as a child, i believed them, and parroted them. i now know them to be a falsehood without the wisdom of an old woman's learnings. once, i never thought my breasts' cleavage would wrinkle. now it has, and i rejoice. why? because.... i have lived to see them wrinkle. i want to celebrate every wrinkle i get. 
why would anyone want to die in their prime? 
those who do usually have no interest or desire to. they want to live, but that choice is taken from them by a chance or a cruel, maybe foolish accident. 
these people are loved because they fought to live, but they only seem to be remembered because they died young. 
was romeo and juliet a story about love? no... it was about accidents and foolish pride. the one who won was the girl who Romeo desired and immediately forgot while he was at play with friends in his enemy's home. 

and liars....
there are people who believe lies so fervently they don't even realize (or can't believe) they are lies anymore. perhaps they become beliefs? one mate, one love, one home, one life? 
one ring?
one lie multiplies. 

and some who remain children and are wounded children in mismatched bodies. they are scarred by the life an adult must live with a child's mind.

addyit: (Default)
2015-01-13 01:00 am

if. i hate this word. it comes up so many times in my life. and, the sleepy, happy drugs don't help.

if. if i had a certainty.

well. if i had a certainty of happiness, love, pleasure, and the pull of true attachment tugging me right behind my navel... i might risk it.

i might even risk this racked, disease-infested, mutation-filled, drug mutilated body of mine. ....but that wouldn't be fair, just to appease my own desire to feel motherhood.

after the initial feeling, it would be a terror to find myself completely not up to the task. (or, dying before the child was established, alive, healthy, and an adult.)

i don't think i could do motherhood. the experience would be not what i wanted.

*a home birth would be out of the question. 
*the experience would severely be detrimental to my health, something my family have striven for so long to keep, at the very least, stable... and at the very worst, alive. 
*unknown effects of the drugs i am currently on and cannot go off, and the possible long-term effects it might cause on an innocent infant. (that, i would never be able to forgive myself for.)

this, all this, and, selfishly... i think i want to experience a birth more than i want a child. 

and, of course, surrogacy is out of the question for me. 

i think this is why i am interested in studying to be a birth coach. 

i'd prefer being a doula, but that is impossible, seeing you would need to have experienced a birth yourself, physically, in order to qualify. 

...i suppose this is why the urge to become a doula or a birth partner would be my second best option? 
gosh... that'd be an amazing experience. just to see the experience might be enough. 
as per usual, i wish i was well enough.  they might not take me on the basis of uncertainty of health! 
maybe one day. 
it's certainly on my list of things to do while i live. i mean, swimming with DOLPHINS? fuck that! :-)

addyit: (Default)
2014-10-21 09:36 pm

reawakened feelings of health care in Ebola outbreak.

i find it important to remind people about the Dallas nurses. what happened to these two people, and the organizations they work in.. it exposes the punches made through the delicate lacework in health care. 

they need protocols put in place, or else it's given opportunity to spread (as feared). they need to understand what they're dealing with and have a reference point, written down, to show them what to DO when dealing with the agent. (not read about it online). it's as if people are assuming the nurses were lazy... when really, they were just doing what they had been told and trained, and eventually advised. 

would you want your nurse to be basing your treatment protocol on what she's read on the internet or what she's seen on the news? 

it sounds like they had NOTHING. probably the bare basics for a hospital, but there's so much more. look at the hot zone footage on the news! if a hazmat suit is needed, well, DO IT. write it down and provide it.
we're talking nurses, doctors, technicians, cleaners... they ALL need this kind of protocol control and knowledge on how to work it.
this is the kind of thing they argue about, discuss vapidly, and have endless meetings, arguments, discussions, teaching sessions over in education. my mum is the education manager of section at Fraser Health, and to have it done properly, it (or ANYTHING) NEEDS to go though this process. a fly in the ointment can cause a HUGE problem if it's not acknowledged or ignored, not documented.
those who are in charge of those nurses are to blame, not the nurses or their unions, or the patients they tried to look after. 
nursing is a dangerous job for this reason. 
EVERY job has a set of guidelines on how a situation is to be approached, dealt with, even just to protect those employed. 
Dallas didn't do this. i imagine many other cities, states, provinces, towns haven't, either. 
this is something people at the "top" are supposed to be focusing on. 
i can't help but wonder at it, though... even at my local biomedical place, they have visible guidelines warning people who have travelled to the affected countries to present themselves at the desk immediately for proper coverage, and to protect the technicians. they had this paperwork up over a month ago, before Mr. Duncan, and before the Dallas nurses story. 
:-( i really hate this "evaluate this situation" game even i am playing. 
i can't help it.
it's just a shame that the richer countries fell into hubris, in SPITE of (or BECAUSE of) all they have...and how little they really care about the people they employ. 
it's just laziness. this reflects on the state of modern health care. it's expensive to do it right, and takes commitment. 
this offends me. :-( it's NOT hard to stop the spread with proper cautions put in place, but they have to be written and provided. 
once you get an agent that deserves the fear it inspires and can't be dusted easily away (as it has been in the early part of this year, and from past outbreaks), you HAVE to prepare for a fight. 

some huge changes need to be made. 

addyit: (Default)
2014-10-06 01:43 am


 this was.... a LONG, long time ago. 

i'm going to have to have a good think and type up the health escapades that have happened in the past year. 

thankfully, there isn't that much to note. 


i post most frequently on my Facebook account. (and i know a few people here don't use Facebook, or if they do, infrequently, and i totally get that.)

myself, i'm not comfortable with the whole cross-posting option. 

so... i am going to have to focus and try to post here again. 

more to come. 
addyit: (Default)
2013-12-15 11:01 pm


 i apologize for not letting you know how i am... i imagine most of you can see on facebook that i am all right. 
after a sleep the muscle pain eased up. 
it took a lot longer to hear from the doctor, and by that time, i had no need of new narcotics. 

it was just the extra spirometry tugging on sleeping muscles. 
addyit: (Default)
2013-09-15 04:06 pm

cumming into a cup?

 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. 
addyit: (Default)
2013-07-03 02:58 am

attempts at cleaning down below mess.

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)
addyit: (Default)
2013-06-11 09:40 pm

politics and pills.

 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. 
addyit: (Default)
2013-05-28 12:02 am

(no subject)

 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. 

addyit: (Default)
2013-05-20 02:20 am

the silence of the body is frightening.

 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?
addyit: (Default)
2013-05-06 11:25 pm

where is day three... it hasn't happened yet.

 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. 
addyit: (Default)
2013-05-06 03:27 am

(no subject)

 i can't sleep, for tomorrow, i start Kalydeco. 

it's felt like my mother, mostly, but i, too, have fought all this way very much on our own. the clinic has helped a little when we've supplied the majority of the information, but it feels as though we found everything first. 
we were actively seeking it, first, before all. 
i get the feeling there's going to be a lot of peering in, of doctors, residents wanting to see me take the first dose... when it's not something i'm going to be that willing to share with them. 
it's personal. 
i'm more than willing to be a guinea pig for many medications, as i am for this one, but that may go a little too far. 
why do i expect this?
because it's in my notes, it's known to many of the nurses and doctors here. 
why can i see people, who don't even know how many pills i should take or how i should take it/what i should take it with, crowd in and expect me to play the patient being bettered by medical science?

it makes me want to just take it early, NOW, and get it over with, only i have to eat with it, and i have no room in my stomach to eat more. all i can do is wait for this stomach to get a little less full. 
addyit: (Default)
2013-04-27 11:36 pm

(no subject)

odd, vivid dream about being demented/fluish, psychosis. being found in the bathroom, wandering aimlessly, confused. the world swirled in van gogh's style.

then, i found myself in a white coat's control, a knee on the back while placed crouched. panic, struggling... couldn't breathe!



i was wakened struggling out of the dream by the morning fasting blood draws. 

addyit: (Default)
2013-04-27 11:35 pm

the day before.

 so... that is the cause of these medicines, in their entirety. to draw out the time, sweet time, until the lungs fail. 
in these great masters' minds, they will fail, eventually. 5 years, 10 years. 
visits to the thorasic surgeon always dane on the chip of a bone hairpin, but they haven't destroyed me.

my fruitful grapes, stemming from strong vine, somewhat withered. what is withered in human flesh cannot be brought back again.
addyit: (Default)
2013-04-09 10:56 pm

too much information!!!

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). 


Read more... )


addyit: (Default)
2013-03-16 01:10 am

piece of lung on floor thoughts.

 just had a disturbing memory.
i remember my first bronchoscopy, and how difficult it was because the IV wasn't placed correctly. they were trying to get into a MAC cavity to see the state of things, and to perhaps drain it, culture it, etc. 
afterwards, my respirologist, who is normally very cool and calm, was very visibly upset. they couldn't enter it because it was in an odd place (like mine usually are), and what upset him most was, in his own words were, "the rest of the lung is FINE. it's PERFECT! good tissue, good color, nothing wrong!"
he wasn't the physician in charge of me when this cavity suddenly blew up, though there had been signs. the physician (who was sure i could trust, and only want to be seen by, since i knew her and was sure she'd remember me) missed the warning signs. she was partially retired, and because it was in another clinic, not at my usual setting, things got missed and messed up. so, in the process of this 6 months, perhaps longer, this cavity popped up (the size of a fist) and nearly led me to lose 2/3 of my right lung. 
this is where i first learnt the real meaning of the word "incompetence": in that, those who are incompetent do not realize that is what they are. i got more information from other doctors in the Center for Disease Control (whom i didn't trust as much) in regards to my lungs than i got from her in that time... and since she was the one who had confirmed my initial diagnosis, it really deadened something inside me to this particular doctor. 
she was brilliant. she WAS on the money. but it just doesn't seem to work as well when these doctors partially retire. it comes to a time when they've seen too much death, they outright just tell parents or patients to prepare for death (which outrages them, as you can imagine) to make them realize that it is time to retire, or partially retire. 
when you lose the sense of hope, the sense of focus, the sense of possibility of survival and life in spite of seeing so much death, when you MISS things or brush it off... it's time to move on. 
i think something huge when on at my CF Clinic when the MAC cavity appeared, and somehow, this doc had NO notes, or knowledge that it was coming until it was there, BANG, full and filling with fluid. yes, i had no symptoms. but how can i continue to see her and be easy in her presence after this. 
i can't... because she has still failed to recognize her own incompetence. she had been ready to take me off my MAC meds because they had done all they could do (until she saw the cavity in my x-ray, where in CT, it was the size of a fecking FIST). and, later on, finding out i was on the WRONG set of meds all that time. whereupon changing them, taking them, the cavity shrunk and i've now been MAC-free for months. all it took was to send a sputum sample to a relatively isolated lab in... Texas, i think. sure, we don't do that for everyone, but with someone with CF and aspergillus as well, i would think the effort could have been made.... and it certainly was once the main doctors of the Center for Disease Control got involved. 
i lose a good deal of lung function because of this. but? i didn't lose 2/3s of a lung. not yet. i had my surgery date set and everything. 
THIS is why i like to try medications before surgery. most surgeons are all blade-happy, but i had one who was willing to TRY the meds first, just in case they worked- and they did.
i must be aware of semi-retired doctors. once out of the game, they lose the stamina. not their fault. but... must be aware. 
addyit: (Default)
2013-02-19 12:48 am

3 clinic visits, mamaflesh, meflesh, shattered. all in the name of keeping doctors employed.

 (the last bit about the docs is silliness. i like my docs lots. i just like to tease them, too). 

Read more... )

why does mum hate these appointments?
the very need for their existence, and the genetic guilt. some of you know how powerful this is. 

addyit: (Default)
2013-02-11 05:45 pm

a bad night.

 well, the inevitable happened, and it has been happening over the last few weeks. 
the fistula reopened, and is now a hole. it's small, though, and weeps. 
it's been painful. the skin cracks, the perineum is raw, and i'm up to trying anything. 
i've used barrier cream to try to save the raw skin, flamazine to ease the burning, an ointment
to numb the sore areas, and zinc oxide cream to try to protect/repair. 

i know none of it will stop the disease, but i'm desperate to try to ease the skin. 
the bladder incontinence doesn't help. i need liners, and i can't change them all the time. 
and now, last night. 
i've had some bleeding (partly why i let my GI know, since any signs of bleeding are a definite
sign of recurrence of illness). that's been a few weeks now. 
i was half asleep when this happened. i had to wee, so i got up and went to the loo. groggy, 
i went to dry with some paper... and came up bright red. 
the toliet seat was smeared with bright red blood, as was the bowl. it looked like more than it was, i know, but i didn't
have my glasses on. 
it was either from the rectum or fistula. i think it was the fistula. 
it took a while to clean up. there was still blood there when i was in just now. 

it's been a long time since i passed that much blood, on its own, and fresh. i can still smell it. iron. 
it definitely wasn't menstrual blood.

it really made me panic. 

it still kept coming. i had to clean up a good deal later- one pair of knickers may never survive. 

i am at the point of trying manuka honey on the fistula. it's ideal dressing material, antiseptic, washes off easily, and stays put.  i have some that i use for sinus rinses, and i have application tips (so i don't mix the clean with the dirty).  

i know it's freakin' nuts. but that was a mini murder scene last night. 

but if 750mg of cipro for 3 weeks doesn't stop the fistula progression?

i am really out of options. humira and remicade isn't an option because of my lungs- neither is predisone. i was just reading over my options
my GI sent me. here it is:


1. There is experimental evidence that a blood hormone called GMCSF has been used in Crohn's disease with varying success. It is not an immunosuppressive medication but it is very expensive. I will likely need you to see a hematologist who use these medications more and may be able to find a way to supply this. 
2.  There is a new medication called vedolizumab which is a tested medication for Crohn's but it is not yet out on the market. Compassionate release might begin in 9 months which is a ways away. It is a medication similar to Remicade but it is supposed to be more gut specific. Potentially it still can cause problems with infections. 

3.  A temporary diverting colostomy has benefits in putting the perianal disease in remission. It sounds bad but it is tried and true. It has worked for many patients with bad perianal Crohn's. 

i think i just need a hug from a friend, be it crohnie or not. it's not something i can talk about too openly on facebook.
medical talk like this spooks people.


addyit: (Default)
2013-01-18 08:11 pm

vocal cord scraping?

 "Don't worry! You won't feel a thing.... till I jam this down your throat!"
i'm kidding. 
they freeze everything up before they slide anything in. 
as i said, it went well. they discovered i have a strong "tolerance" to the medications they gave me. (fentanyl and some kind of muscle relaxant). ? mum said i just metabolize things quickly, but i saw some eye-darting. it worked out much better than the last time- the nurses were great (they have one for bronchs now, which they didn't before. the nurse on the floor was good, and was able to get the IV in nice and easy). the IV wasn't interstitial, i DID get plenty of benefit from the meds (though i was more awake than i should have been, they said) and they were able to open and empty the cavity, while doing brushings, get a good sample, and wash everything out. 
the best part about it was i went to the hotel and had steak and chips. OMG, yum. it was the first meal i've actually been hungry for in weeks, and finished a meal and feeling sated. 
i shouldn't have had the double dark and stormy, perhaps. i dozed and slept on the drive home, and went right to the couch, feeling very grumpy and headachy. so, i'm just relaxing.
life is good.