So I'm off to see the Big Cheese, the consultant who did my rigid cystoscopy with hydrodistension , who diagnosed me with this bloody disease in the first place.
We are currently at what would be a stalemate were we playing chess, because I want him to prescribe me Elmiron (if you know about/suffer from IC, you'll know all about this; if not - well it's complicated and I have only 5 minutes but in a nutshell it's readily available in the US but only on a 'named patient' basis over here, it helps about one in three who take it by replacing the fucked up GAG layer of the bladder which is apparently what causes our pain. it can also make your hair fall out, amongst other things, so not to be taken unless you're desperate. and it's expensive. it's next on my list). He, unsurprisingly, does not want to prescribe me Elmiron. He has sent me complex boring emails from the grotty hospital pharmacy explaining why not, but he could petition for it, if he believed in it, or me, enough.
He doesn't.
The upshot of this is that I'm going to have to change consultants and I do have another one in mind but I don't want to totally blow it with the Big Cheese (large man; constant slightly unnerving smile; big patronising to us 'little ladies' with 'waterworks' issues) in case the other consultant doesn't work out.
So. I have to smile, and be assertive, and not lose my rag. Make my points calmly. Not be bullied. Not shout.
I have to not be passive and not be aggressive.
I HAVE TO NOT CRY.
I'm taking a dear friend which is a blessing but she texted last night to say she needs to leave less than an hour after the stated appointment time... so this being the good old NHS, I'll probably be going in on my own. That's why I'm still in bed, typing this, when I should be up, dressed, and on the road.
Wish me luck.
About Me
- rainbowgirl
- This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.
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