an important announcement

[pauraque_bk]

i has a bad cold.

I was going to leave it at that, but it seems like as good a time as any to mention (with the requisite wood knocking) that the surgery I had in September has won me these few months with relatively mild symptoms. The surgery was for interstitial cystitis, which you can paste into wikipedia if you're really curious.

It's hard to say if I actually have IC, because as my urologist puts it, it's mostly considered a diagnosis of exclusion. If you have been tested for every other bladder disease (check) and tried every medication (check) and are still in agony (double check) they call it IC. I really try to resist this kind of crap from doctors, I don't like fancy ways of saying "we don't know", but I was offered a surgical option that sometimes(!) helps IC patients and I was desperate enough to take it. They don't even know why or how it works, but obviously it did something, somehow.

I do have a horrible cold though. I'm unbelievably congested. But as happy as one can be under such circumstances. Bed now.

Comments

[thimble-kiss.livejournal.com]

I'm very glad to hear that the surgery has given you good relief for the pain. I suppose "relatively mild" is relative indeed, but I wiki'ed (I'd never heard of the diagnosis before) and the symptoms sound like absolute misery. Any significant improvement must be a big relief (knocks on wood too).

Hope that things continue that way and also that you feel better from the cold soon. Happiness helps, I'm sure. :)

[pauraque]

I suspect that with further research they'll figure out that what they call IC is really a group of different problems, considering that the symptoms vary so widely, and particular treatments may miraculously cure one person yet do nothing for another. *lights a fire under researchers*

[atdelphi.livejournal.com]

*hugs* Sorry about the cold, but yay for the surgery helping! My sister was diagnosed with IC two years ago and so far medication and a strict diet change have helped, but I know how miserable things were for her before.

[pauraque]

I'm very glad to hear she's getting help and I hope it continues to work. Avoiding acidic foods and limiting fluid intake have also been very useful for me. When I first started having symptoms I was repeatedly told by medical types that I must have a UTI and that I should drink gallons of water and cranberry juice... which is pretty much guaranteed to put someone with IC in agony.

[atdelphi.livejournal.com]

Ouch!

My sister's completely off alcohol, all forms of caffeine, and a whole big list of food - but it seems to be helping. The whole situation wasn't helped by the fact that she works at a factory where bathroom breaks aren't allowed (leaving people hurting themselves so they can go to the nurse if they need a bathroom visit). She started self-medicating with pills intended for people with a different bladder condition and it just made things worse.

[pauraque]

Yeah, caffeine and alcohol are the worst offenders, I don't use them anymore. What I miss the most are all the high-acid fruits on the list... I'm more in danger of falling off the wagon for an orange than a cup of coffee. :\

As for the work situation, has she tried having her doctors write a letter for her bosses? I had to do this when my job began questioning why I was always in the bathroom. The benefit is worth the embarrassment.

I tried no less than 10 different urologic medications, all of which were prescribed to me but some did make it worse. I can't really say any made it better. Is she taking Elmiron? That seems to be the popular one.

[atdelphi.livejournal.com]

Heh, my sister and I actually bonded over having to quit caffeine (I'm allergic).

As for work, let's just say it's the kind of place that would fire her if she tried it. The whole company's a hotbed of worker's rights violations - right down to keeping a list of who votes how every time they try to unionize and subsequently laying off the 'troublemakers.' No idea what she's taking these days, though - I only see her a couple of times a year.

[pauraque]

Ugh, I'm sorry to hear that. I've worked under similar conditions, though probably not as bad as that. It's hard for people to understand "why you let it go on" if you haven't been there. Sure, you could go to the labor department, and people tried, but it would have taken so much more than that to actually change things.

I hope things look up for her in all areas!

[atdelphi.livejournal.com]

Thank you - it's also hard for people to understand the tight culture that develops in that kind of environment. People go in expecting to leave after a year or two, but with the hours and the hardship and the 'us against them' feeling (not to mention the money), they end up staying a lifetime and being proud of it. I know my dad has been hoping that these health problems would make my sister fall back on her degree in Economics, but at this point, starting over in a new field with no relevant experience would mean such a pay cut that I don't see it happening.

[pauraque]

Yeah, there's a reason unionization is associated with huge upheaval... Cesar Chavez wouldn't be an icon if fighting this sort of thing was EASY.

[sistermagpie.livejournal.com]

I'm glad the surgery did something--that sounds awful for you!

And also the cold.:-(

[pauraque]

Thank you, it was truly dominating my life. Makes one very grateful for comfort while one has it.

[muridae-x.livejournal.com]

Having had my own set of completely different mystery disease symptoms in that approximate area, then I'm very glad indeed for you that the operation seems to have worked. Because unless you've experienced it, there is really describing how excruciating it can get.

(Shame about the cold though.)

[pauraque]

I'm lucky to know a sympathetic and persistent urologist. It took about six months to find someone who would really hear what I was saying, let alone do anything helpful. Sometimes just hearing a doctor tell you he understands it is excruciating, and maddening, and you can't be expected to live with it -- really helps you get through the day.

I do hope they worked out what was wrong for you, and were able to help.

[kaptainsnot.livejournal.com]

I can imagine your frustration, not having a concrete diagnosis or treatment -- so I'm really happy to hear the surgery has brought you some relief, and hope you keep feeling better. At least until there's an even better alternative. /hugs

[pauraque]

Thank you /hug

[rikibeth.livejournal.com]

Oh, my goodness. I am familiar with the condition, having managed to get recurrent cystitis under control by other measures before progressing to that stage of suckage, but not before reading up on it to see if that could Explain Things.

I'm very glad that your surgery has improved your symptoms, and hope you recover quickly from the cold!

[pauraque]

You know what's horrible, when I first started having symptoms and was scaring myself with google, I found IC and said "wow that sounds horrific, I hope to God I never have that". You can imagine my joy when my urologist asked me whether I'd ever heard of IC. :P

I'm glad you ended up all right!