I'm tired of being a voice that is never heard. No one believes a thing I say when it comes to the medical side. They're always the ones that are right. Fuck how I actually feel as long as they believe the bullshit they're spouting and my sats are good, what they say is basically gospel and MUST be right. Its so frustrating and has happened so many times its irritating. A massive example of this is the cipro argument:
I won't take it, I refuse to take it, b/c the last couple of times I took it (Last time was Jan last year) I felt like crap and finished the course not feeling any better, but almost worse, if anything. But I'd have my lung function tested and the numbers were good, a bit higher than they were just before starting it. So therefore it worked, regardless of how shit I feel. What everyone chooses to ignore, is that once the drug is out of my system, my LF will go back to what it started at, if not lower, and I'm still feeling just as lousy as ever. Everyone - Drs, nurses, my parents, will just refuse to listen to me and keep suggesting it. I can't even stress this enough. It's like saying 'Hey, why not try Tobra IV again and see if this time it wont fuck your hearing up a bit more'
When I think something's wrong, no one believes me b/c they refuse to believe the words of someone younger than them. It doesn't help that I look literally 15. So somewhere in the back of my head they're thinking 'she doesn't understand what shes talking about, so shes wrong'. I've self diagnosed (to myself) and been right when eventually other people have confirmed whats up with me in the past. Like Pleurisy, 2 years ago - I suggested that the pain I was in was pleurisy. I was told I was wrong, and sent home on IVs. Ended up in massive pain which resulted in me going up to the CF ward. After the dr fucked about with tests checking my gall bladder, he eventually said it was pleurisy. That's what I said a week ago. But I was ignored.
My parents side with the dr. If he chooses to ignore me once again and suggest cipro again, I get pissed off looks b/c I refuse it. Again. Despite the fact that I'm the patient and I know how I feel, where the pain is, what drugs do and don't work, whatever the dr says is right and I'm always wrong.
Y'know, I'm genuinley worried that one day I'll actually be ill. As in, really ill. And no one will step up the game. They'll be clueless as usual, or give me the drugs that I know don't work. Or they'll make a fucking idiotic response like the following over the last few years (and believe me, there's more, but I can't remember any others as A, my memory is shit, and B, I'm tired)
Me: 'I feel like I can't breathe'
Dr: 'That's b/c you have CF'
Me: (On being told that one sugar level is the tiniest bit high) I don't want diabetes
Dr: 'But you can get free prescriptions'
-Dr walks in-
Me: 'I feel like crap, I have no energy, I've been having hemos, my weights gone down, my sats are 92% and my Lf just dropped 25%'
Dr: 'Lets hope the IVs work then -walks out-' (that's literally all he said)
Upon phoning the dr to say how crappy I was feeling back in the day when I tried out mero, and the fact that I felt like I had the flu and slept almost 2 days (and I never do that) he replied 'That's the IVs at work. You'll be fine' (Fast forward at clinic about 4 weeks later and I'm back on IVs, WAY sooner than I ever used to be, and waving goodbye to my old 'IVs every 3 month' routine b/c I start needing them every 4-8 weeks)
(when I was in hospital in March)
Me: 'So what's wrong with me? Why am I in so much pain?'
Dr: 'I don't have a clue' (and this was WITH all the fucking test results over the last day right in front of him!!)
P.s. There are other good drs in the hospital. I'm trying to switch. But whenever I try I get told that this dr is 'a good dr', despite the fact that I'm so sick and tired of the bullshit way he considers as treating me. One day, I'm going to make someone fucking listen to me.
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