Really discouraged and frustrated...

[graceunderfire]

I just need a place to vent and release. I'm glad I have "place" to go.

I don't know if it's because it's morning, and my IC symptoms are always worse in the morning, or because I have the day off and when I don't work I am more irritated by my symptoms, or just merely the fact I'm hormonal... But I am SO discouraged right now.

My burning feeling isn't necessarily different than I've had before (it's worse today, but not necessarily the "worse ever") and this prolonged flare isn't unusual (I've had flares for months on end), but this is the worst flare I've had since KNOWING about IC. In other words, since I've researched about IC and found out that those other times when I was hurting, and taking cranberry pills and drinking high volumes of cranberry juice, I was actually making things worse and not better, I was hopeful that once I adjusted my diet, things would improve. The last flare I had, I did just that. I recognized the flare was a result of something I ate, and just drank a ton of water, and it helped.

This time, though, I know food wasn't a trigger. I have been very faithful to follow an IC diet. I know it was intercourse that triggered it. But that was almost a month ago now! I haven't had sex since then (my husband has been really patient), and I've also quit my jogging, and I've stuck to a VERY STRICT diet.

I feel like I'm doing everything right, and yet each day the symptoms still persist. And this morning, it's the worst it's been all month!

I just started my period yesterday, so I know that could be part of it. But I thought that back during my ovulation too...that perhaps once my hormones leveled out it would improve. It never did. Now I find myself hoping for the same thing with my period, "Maybe when my period ends it will be better."

But is that really it? I mean really...I can hope it is the "cause" of all of this, but it's not. If everything is a "trigger", how do we really know it's a trigger and not just that simply existing isn't a trigger.

I feel as bad as I did right now back when I was ignorant about IC and was pumping myself full of cranberry juice and eating anything I wanted.

I mean I can sit here and speculate, "Why is it now that my bladder hates me? Is it because of my hormones? Lack of sleep? Something I ate? I'm having more nasal allergies, so perhaps that's somehow affecting my bladder?" Etc. The guessing is enough to drive one nuts.

We are suppose to have dinner with some friends tomorrow. I love different kinds of cultural foods, and so do my friends. We want to take them either to an Indian restaurant or a Korean restaurant. If we do that, though, there will be nothing for me to eat. But at this point, I'm ready to say, "Screw it. I'm going to do what I want to do because it doesn't seem to matter anyway."

I'm frustrated and tired of this (and not to mention hormonal)--it's a most lovely attractive combination!!!

I just needed a place to vent my frustrations. Now on with my day of trying to manage what I can't control.

Grace

[leelee88]

Grace, I hate to say this hun , but if you just started your period I am betting THAT was the trigger!! This is when I have my worst flares.. Hang in there though!! You will start to learn over time when you will have these flares and be able to prepare for them. Just remember to when it comes close to that time to try not to over do things. (((hugs)))

[graceunderfire]

Thanks, Ronda. I needed the "hug" :).

I do think my period is making it worse, but my flare actually started almost a month ago (just after my last period). All month I keep hoping it would go away once my hormones settled out, or if I did this, or that, or whatever... So far, no relief, and it's actually getting worse.

I'm feeling emotionally better right now though than this morning when I wrote that. I was having a bit of a low moment, and have since sort of snapped out of it! It's a sort of up and down thing for me. Sometimes I can deal with it better than other times. This morning was one of those times when it really got me down.

But I've come to terms with it again, and I feel at "rest" in my soul :). I still don't like it, but I'm not feeling overwhelmed like I was. I'm sure by this afternoon, I'll be in a different place again! Ha! Hormones are such an interesting thing...

Grace

[BT2008]

...I mean I can sit here and speculate, "Why is it now that my bladder hates me? Is it because of my hormones? Lack of sleep? Something I ate? I'm having more nasal allergies, so perhaps that's somehow affecting my bladder?" Etc. The guessing is enough to drive one nuts.

Hey Grace,

I'm right there with ya' sister! I know what it's like to do everything right and still remain in a horrible flare. I told my urologist of my aggravation in that same context and he replied (something to the effect of): "IC is just a very unpredictable disease. We don't know what causes it and we don't know what sets it off to flare worse when the patient is doing everything they should be doing. We just don't know..." (BTW: He doesn't seem to think that diet has THAT much to do with controlling the symptoms over time...but I continue to follow the IC diet anyway, just in case!)

Even though I try and pinpoint certain things that make my pain and other symptoms worse, I have had to force myself to admit that sometimes I am worse "for no reason at all!" I call these, "I don't have a clue flares"...:rolleyes: We are suppose to have dinner with some friends tomorrow. I love different kinds of cultural foods, and so do my friends. We want to take them either to an Indian restaurant or a Korean restaurant. If we do that, though, there will be nothing for me to eat. But at this point, I'm ready to say, "Screw it. I'm going to do what I want to do because it doesn't seem to matter anyway." I understand completely!!:lmao: I don't know how many times--when I am hurting really bad already--that I have said: "What's it going to do if I eat/drink _____ , make me HURT??? I'm HURTING NOW!! :mad: Why not allow myself a little bit of pleasure????"

So, I certainly understand the logic (illogic?) behind this feeling--BUT, I will say that you must then choose whether or not you are willing to take a chance that you might hurt even worse or for even longer if you do eat/drink ______. If you do decide to eat Indian food though, will you take a bite for me, pleeeze? I LOVE Indian food!! :)

As far as your pain is concerned, you mentioned giving up jogging. From the time my IC pain first hit, it progressively got worse and worse and I was forced to give up more and more physical activity to the point where anything I do above and beyond just sitting in this desk chair and walking around the house is taking a huge risk of making the pain worse. I hope this isn't the case for you, but maybe you are overdoing it physically. Slow WAY down and rest for a week or so (as much as you possibly can) and see if that helps get the pain under control for a while.

Just like the dietary limits set by the IC Diet, I had to figure out what my physical limits were as well. I pretty much know what I can and can't do physically these days. And sometimes I cross that line knowing what I am risking. So far, I usually live to regret it! :rolleyes: But, on occasion it was worth it--i.e. during the Holidays.

Also, I am menopausal, so I don't have periods anymore. While it may make things worse for many women who are still cycling, I am proof that it is not necessarily a "direct cause" of painful flares. I do, however, have IBS so I know that this makes things worse, but I don't have IBS everyday or on a regular schedule, so that is not the cause of my daily pain either! I think that when "anything else" is going on "down there" that it may inevitably make our IC worse!

So, just take care Grace, and be ever mindful of EVERYTHING you are doing. And choose your battles well! Sometimes you will win and sometimes you will lose. But keep hanging in there and choose wisely, because this war may be a very long one indeed while they continue to search for a cure!

Here's a ((((BIG HUG))))...

~Beth

[graceunderfire]

Thanks, Beth. Your reply actually made me cry. (Did I mention I was feeling hormonal today?!)

Your paragraph about slowing down really struck a chord with me. It's something I struggle with, and I have felt convicted the past few days that my "intensity" may be more of a trigger than anything else I can pinpoint. It's a hard thing to change though, because it's no longer an external thing (like food, hormones, etc) but an internal identity thing. Giving up parts of your identity (even those parts that are not exactly healthy) is very hard because it's a part of who you are.

In a way, I suppose if one were to look on the positive side of things (could there be a positive to IC?), I could maybe speculate that the IC is making me come face to face with my limitations, both emotionally and physically. I'm not quite as strong and as resilient as I once thought I was.

A friend and I were discussing our tendencies to be "super-woman" and the implications of that. She said something I thought was very striking. She said, "Your mind may be able to fool you into thinking you got in under control, but your body will eventually reveal the truth. Because truth is that something has to give somewhere."

Anyhow, just some ramblings. Trying to learn as much from this situation as I can. Might as well!

Grace

[BT2008]

Hey Grace,

Your newest post almost made me cry as well!

I do not feel even remotely to be the same woman I was before being hit with IC. So yes, having IC does cost us a lot in the personal identity department; I have definitely lost "the super-woman" aspect of my personal identity over these past eight months.

With that said, however, my husband assured me just the other night that I am even more of a "super-woman" today than ever before, because he knows of no one else who could endure what I am having to endure! And yes--his comment made me cry even more than I was at the time we were discussing it!

So, maybe it is the case that our "super-woman identities" just change form, as we are forced to face ever greater challenges??? I don't know for sure yet, because more often than not I still feel so inadequate and useless. But as I continue to ponder his opinion, I am at least willing to entertain the possibility that my sweet hubby is correct...

~Beth

[elamar]

If you feel like your flair is being trigged by hormones and that time of the month, have you considered trying long term birth control? I take regular birth control pills (cryselle) for 9 weeks at a time and only have a period once every 10 weeks. This had nothing to do with IC. I used to get migraines alot with my periods and we did this many years ago to reduce the number of migraines. It has significantly reduced the number and the severity of them. Just becareful about not using the Yaz brand birth control. There is something in it that is bad for most ICer's. I hope this maybe helps. Good luck to you.

[graceunderfire]

Elamar, I've been off of birth control since my husband's vasectomy. But it's interesting you mentioned Yasmin. I was on that for 4 years. I just now did a search on Yasmin, and several people suspected whether their IC was initially triggered by their use of Yasmin. As I think about it, that's about when all of this started for me--when I went on birth control pills! It makes me wonder about the connection. At the time, I just thought I was getting frequent UTI's (which I now know it wasn't actual bladder infections) because I was sexually active. Now it really makes me wonder...