with the amount of coughing i was doing in trying to walk, talk, by the end of this entire day i was turning into Gene Wilder in the Producers.
my poor mom.
she hates these visits, but she felt the need to come because it was three visits in a row, and she wanted to be there to support me,
back up what i said (and retract what i said when i was lessening how it really way) and we had a large discussion with the social worker
and the pharmacist about the difficulties we've been having with Pharmacare and Blue Cross (who have completely changed their plans,
did not communicate this fact to us until the day before it changed, and left it to a HUGE mess, never knowing which meds required
"Special Authority", which most of mine do). we had to do a whole overhaul over all the medications i'm on, just to check what is what.
(much of this i did already, since i have to do it/talk about it with so many doctors who make the Special Authority: GI, respirologists,
pain specialists... it's insane). we had to pay out of pocket for some medications in the past few weeks since it was "out of pocket", but
during our discussions we may be able to get the money refunded.
it sounds like, as this things ALWAYS happen, they change it, and then realize what a complete and utter fuckup it will be for so many people.
no doubt, in a few years, it'll change again... and be just as fucked up as now.
but... the appointments.
my mother hates coming to my appointments. it's not that she doesn't care, because all the time i'm there she's twitching and wanting to know
what is going on and what is being said. (phoning during my consults and on my drive home- something i made her stop doing since it made me
and, well, it's not been great.
my breathing has been shitty- i would say for about 6 months. i saw my out-of-breath christmas "detangle-uncoiling of the evil hair" video on
FB and noticed how long it HAS been since i had been feeling that way.
basically, i wasn't feeling great, there was a small bleed, probably from one of the smaller cavities. people jumped on it immediately (in contrast to
the HUGE cavity i had that one doctor i had completely didn't notice/ignored because i wasn't symptomatic... until it was freakin' HUGE). they did a
bronch and a lot of crap came out, and it was no surprise- culturing pseudomonas a and aspergillus (and another one, soil-based. I DON"T KNOW
WHERE THESE COME FROM! I DON'T INHALE DIRT!!)
after going over everything, we figure it's the aspergillus that is causing the most problems. so, we're going to treat that with an anti-fungal, posaconazole.
(i swear, i've heard that word SO many times in the last two weeks that if someone says it aloud to me as part of a conversation, i'm going to
kick a monkey in the balls).
there's complications about getting the medication. i was surprised my IDC guy didn't tell ME the medications he was going to lower/cut (since i
would know who he needed to talk to). he instead contacted my GP, who was away, and the guy who was covering for him was NOT going to get
involved, since he didn't know me or my medication requirements.
i found out the meds today, and it looks like it can be manageable for a 2-3month dosing of it. it's the way they all work in the liver, and not wanting
to let the liver go under too much stress. also, some medications lessen the effects of the posaconazole while heighten the effect of the other
medications, which you do NOT want. so, there are two that need to be cut immediately, and three that need the dose to be cut down.
only one medication would be a problem with this, since it involved pain relief, and as with the others, it's just a matter of lessening the dose.
it's all a matter of timing and getting to the right doctors, and talking to the right ones.
i should probably just email my IDC guy, let him know that i know what meds he's concerned about, and let him know i understand, have already talked
to my GI (who is completely on board with the GI-related meds) and will talk to my GP myself when i see him. (as well as being a GP, he's a pain specialist
who deals with fibromyalgia, so he knows his pain meds. i've been on this one for years, so it's just a matter of lowering the doseage since
posaconazole will still make it just as effective).
seeing those low lung percentages, talking about the fucking fistula with no end in sight for that, needing to lower my immunosuppressant to
give my lungs a chance to recover a little from the fungus...
i had a lovely visit with my past sinus surgeon. i hadn't seen him since 2010, when everything was clean, perfect, and tidy. i had noticed,
the last 6 months, things i called my little "frogs", dried up froggy green blobs that POPPED out at the strangest times. they had the taste of
old potato chips that had been mushed up and stuck up there for weeks, months, even. knowing about pseudomonas a, but not really seeing it
before, i knew what this was what pseudomonas looked like. i had been warned.
you know it's never a good sign when you're sinus surgeon looked into your nasal cavities about less than half an inch and go "wow".
so- there's a biofilm in there, and it was chockablock with pseudo.a. they irrigated and rinsed me out four times on each side before giving me
a tobramycin irrigation to try to help the mess in there. it wasn't so much uncomfortable/painful as strange. the TOBI in there was numbing,
but it's lasted with me through the whole day. i couldn't taste anything at lunch. now, it's just like a bit of a strange sinus headache.
i'm back there in two weeks for another irrigation.
they've changed their irrigation ingredients, too! they use a drop of baby shampoo, as well as the manuka honey, salt and baking soda.
the crohn's appointment was to talk about weight, the fistula, and how, right now, there isn't a lot to treat it with. we are, at the moment, waiting
on events. one drug that might help may be covered in 9 months. he was disappointed the cipro didn't stop the fistula from opening- that was
our fallback. i guess it would only work for abscesses now, if they happen to pop up.
i'm currently waiting for posaconazole, which may be approved this week if there's better communication. that'll take 2-3 months of treatment
and seeing if symptoms improve.
then there's the subject of Kalydeco, which looks like it's going to be released as "KalydoCare" in Canada. it's in its infancy, and things will
certainly be in the development through the drug review boards in the next couple of months. that said, it may take another 9 months.
"Physio is important."
"But I'm not a big producer."
"Have you been using the saline?"
"I've tried, but it makes me cough."
"But when I cough, I fear the pain, the possibility of popped ribs, the incessant incontinence... "
they just don't seem to get my reluctance.
the reason there's stuff in there? i'm symptomatic! even now, i've improved since I started my month on of the podhaler.
i can't exercise, since it makes me cough and causes me pain.
besides... i NEVER liked exercise. NEVER! when you're mocked everyday for how stupidly you run for a few years, you lose your taste for it.
after these this full day, just from the pressure of walking up and across ONE street, i finally lost it, slid against a building, and sobbed.
my poor mom. her heart was breaking, watching me do that, walking with me like a normal person and then having to pause for me to
cough, since i can't walk like a normal person right now.
i was SO exhausted by the coughing. of people looking at me like i was diseased, and being unable to make a joke about it.
(at least this time someone didn't come up to me and snarl, "COVER YOUR MOUTH!!!!") why? because i covered my mouth, even if i was
struggling to stay upright on the stairs, my mouth was in my sleeve.
the raw, nasty skin.
the fistula, draining.
these things really do cycle the whole body.
my lovely GI did give me some suggestions for creams to help the skin against the urinary incontinence and to encourage skin protection.
the worst thing about it isn't the everyday pain. it's when you go to use the loo, and the urine burns the skin, the cracks in the perineum
bleeds and burns when you have a BM, and then, you have to clean everything up (where normal toliet paper might as well be wire pads).
but, i'm on a septic bed, so i can't use the disposable wipes. so, i either use the hose in the shower, or use tissues. i know there are other things to
use, things i haven't gotten into since i don't think i like the idea of them much.
why does mum hate these appointments?
the very need for their existence, and the genetic guilt. some of you know how powerful this is.