back, back, and back (not on crack but on valium/zolpidem/fentanyl oh and the joy that is Elmiron ....)

First I owe you all a big apology.

Sorry if I worried you or pissed you off in my absence.

It has been too long.

Much too long.

Living has been hard enough , scraping myself through the days, and writing has felt a step too far. I want to start writing my creative stuff about my teenage years but right now even writing this blog has felt overwhelming. But I'm back. Perhaps a self-help book on living with IC, specially a UK version, might be really helpful and a good way back into writing; what do you think you lovely readers?

I hate leaving long breaks in blogging because there is no way to dance back into it as if you've never been away, or to do an 'update' which encompasses everything...

Suffice to say, without being too depressing for 3am on a Saturday morning (kids away and I can't sleep for bladder pain), my IC and my children, in that order, sadly, have been dominating my life.

I am so entirely ruled by my bladder pain right now (toilet at least every hour and burning pain as bladder fills up) I often think of ending either my life or my bladder. My very practical new consultant thinks the latter is of course preferable to the former, and in the meantime has got me onto an alkaline diet - as much as I can manage. I'm not much of a cook, but I am eating a lot of green stuff, and green drinks, and green supplements like Wheatgrass and so on, and have cut out inflammatories such as alcohol, caffeine, citrus, spice, and most gluten and dairy also...

Which has done FUCK ALL, although sustained over 6 to 8 weeks, which is depressing....

Also, and not without some reservations, I've started back on Elmiron. The big gun. I asked myself again, would you shave your head to get rid of your IC; the answer being yes, I had no more arguments. The rectal bleeding, should it reoccur, will be scary, but then they've checked that all out and found nothing ominous so it's a case of being brave and trying to get at least to the 3 month mark - I only managed a month before in Jan as you might remember.

For you non- ICers who read my blog(I know you're out there!), it takes at least a few months for Elmiron to work if it is going to, which is usually in about one in three cases. Then, you are left with a problem of success, as it's a hefty drug and it only helps your bladder while you are taking it. But i'll cross that bridge if I need to. It would be so wonderful just to find something that works. If Elmiron has worked for you, please do leave me a comment, be good to hear your story. Also anyone with dietary recommendations...

Have the option of installations too at new, better hospital (further away, but I've given up on my hopeless local hospital for treating my bladder and found a better, hardcore female consultant).

She talks openly about bladder removal as a last option. I'm not there yet, but I can imagine in ten years time, I would be. I can't imagine ten more years living like this, though.

The worst thing people keep saying is 'well at least it's not terminal'.

It's like you fucking morons, if it was terminal, at least there would be an end in sight. you don't comfort someone being tortured by saying oh well, at least it will never end.....

Well, this seems to be a rant about IC, medication and all things related.

So be it.

That's where my head is at.

Thank you all for not deserting my blog and for reading over and over my past posts; my readership seems to have kept up despite my absence. I really do appreciate and love your comments and if I haven't managed to reply yet, I will.

Rainbowgirl xxx