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[personal profile] addyit
 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. 


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My Crohnie/CF Appendix.

April 2015

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