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Once in remission, how do you stop focusing on your condition?

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  • helen newcastle
    replied
    Originally posted by helen newcastle View Post
    Hi ,Just needed to ask you what autoimmune Progesterone is and how it was discovered, I am at [email protected] is a dr in Austin Texas who is helping IC. He deals with the bodies allergies to hormones. Just wondered if we were talking about the same thing here. How were you diagnosed with this?If so I can get my daughter to send me his details.He has wrote a book about this to. just need to get his name from her again. Just let me know if this is what flares up your IC, and what it is.
    Helen
    Oh I just wondered if anyone knew why when I get my Period does my IC bet better. not the week before but the week im on it, Helen x

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  • helen newcastle
    replied
    progesterone

    Originally posted by Christinew1899 View Post
    I am the same way. I don't like to leave the house because I don't know what my body is going to do. Bathroom trips are a nightmare and I've had to leave several events (if I even went to begin with) because of sudden pain/burning.
    Hi ,Just needed to ask you what autoimmune Progesterone is and how it was discovered, I am at [email protected] is a dr in Austin Texas who is helping IC. He deals with the bodies allergies to hormones. Just wondered if we were talking about the same thing here. How were you diagnosed with this?If so I can get my daughter to send me his details.He has wrote a book about this to. just need to get his name from her again. Just let me know if this is what flares up your IC, and what it is.
    Helen

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  • Christinew1899
    replied
    I am the same way. I don't like to leave the house because I don't know what my body is going to do. Bathroom trips are a nightmare and I've had to leave several events (if I even went to begin with) because of sudden pain/burning.

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  • Judy Gee
    replied
    I have read all the recent posts on this subject and all I can say is that so many of us have the same concerns from day to day. For myself, I try on a good day and as I go into remission again I try and keep myself as busy as possible along with trying to shove out any IC thoughts. My one problem is as this happens I tend to losen up my hold on my diet which we all know will get us back into trouble. I have had a hard year as it seems that about every two weeks I come up with another physical problem, latest being tooth extractions when I have been devoted to taking care of my teeth and seeing my dentist on a regular basis, what's up with that I ask. Maybe it's not only an extraction but a distraction. IC can be like a cloud always hanging over your head. My first round my goal was to just get a hold on it which I did. Then I was in remission for 2 yrs and boom, there it was again. What a disappointment. For the first time I could understand how this whole thing can get you down. Dr. Oz had a great program today about cronic pain and pain management. He was very encouraging. Just wanted to add one more thing. For anyone who may have pain after they urinate, my uro told me to elevate my legs with my body flat for one hour every night. I thought it as a flaky reply but tried it anyway. Guess what, it worked. No more pain after I urinate. Hope this helps someone else out there. Good night all. Judy Gee

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  • helen newcastle
    replied
    I agree with you on obsessive thoughts

    HI its os nice to here there are others who feel the same way, I often think I cant be having this much pain its unbearable every minute of the day. I am exsited about the 27th im off the see a specialist to see if mu pudendal nerve is trapped. has anyone had this looked at. the symptoms seem to mimic that of ic. I was still hoping to here if anyone lives i Houston Texas area. So please let me know if you do.

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  • Calinda
    replied
    Hard to balance

    I can see that having obsessive thoughts could be pretty terrible. I'm sure it really is hard to control. I'm not sure what you do with your other obsessive tendencies if you have them? Is there some kind of treatment that you follow for those other thoughts?

    In a way though, the positive side is that you really work hard to take care of your health. I'm not obsessive but I have never forgot the pain I first had and that's what keeps me so strict on the diet. So it's a weird thing, because I don't want to forget and then get lax with the diet and have all that pain again.

    I wonder if in time--I mean the longer you don't have pain, that your brain will eventually focus on something else. It might take a long time though.

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  • wee wee warrior
    replied
    I so get what you all are saying. I'm with earthlady -- I don't know if these thoughts will ever go away. I would say I'm 99% better on Tagamet, and I thank God for that every day, but in the back of my mind I wonder "What happens when it stops working? Will I be bed ridden again? How can I go through that pain again?" I guess every morning I like to torment myself like that.

    I have wanted to ride with my 5-year-old on the bike trail all summer; finally got up enough courage to do it the day before yesterday, because I was afraid it would flare me. It did not, and I'm so glad I tried it!! Now we have all fall we can do it, Lord willing!

    So I guess the only advice I could give someone personally, is first, have a plan of what you will do if you have a flare or cause yourself that terrible pain. My doctor wrote me a prescription for pain medicine that I just take in the case of a flare, and it is comforting for me to have that, even if I don't have to use it. And then remember where you came from!! You and your doctor have gotten yourself out of that horrible pain before; if it happens, you can do it again. Have some faith in yourself! And finally, people with IC KNOW pain, don't we? We are intimate with a pain that I can only describe as being burned alive, from the inside out, and maybe we aren't supposed to forget that. Maybe we are supposed to take this pain and channel it towards a greater compassion and understanding of others' suffering.

    I think we all need to give ourselves great credit for being so much stronger than we ever knew.

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  • helen newcastle
    replied
    mary

    Originally posted by mary124 View Post
    I too am like Donna--If I wake up without any pain than I just focus on today--not tomorrow or the day after. Lately though my pain has been in my back (did something to it back in April--finally getting around that I can now work full time on most days). As to my IC-pretty much the same thing, again haven't had too many problems with it as my new pain doctor took me off my pain meds and put me on cymbalta--boy, the difference that has made for me.
    HI Mary I am moving to Houston soon. would you pease let me know what cymbalta is . And the name of your pain specialist in Austin. my e mail is [email protected]

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  • Wyllyam
    replied
    Male perspective

    I happen to be male as well. When I haven't had enough to drink, so I know it's gonna burn, and sit down to urinate (which feels "wrong", but helps to relax) and when I start the joints in my ring finger hurt. Really. How could anyone but one of us even conceive of that?

    I also remember being a kid. Drinking a 44oz soda. Peeing like a racehorse later. I call myself in "remission" but I wonder what the rest of my life will be like? I'm down to being able to go hours between bathroom visits, and I can have most foods again, so I'll take it, but getting rid of the "brittle" feeling would be heaven.

    Anyway, I'm with ya.

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  • jaime15
    replied
    I feel great 96% of the time now. There are still plenty of days I worry. For me, I have realized if I stay close to places I am familiar with.......I am comfortable and think less of my bladder. (And usually there is a bathroom close by too!!)

    You'll get there.......I've had this dx for more years than I care to count and am still learning.

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  • earthlady
    replied
    I have been in some type of remission for a good while now and I still think about my darn bladder every day! It's like this thing has been permanently etched into my brain that at any moment it could all come back. I'm wondering if these thoughts will every go away. When you are constantly reminded of it daily due to the diet it's really hard. Every time I go out to eat it takes me forever to scan the menu, ask the waitress- "Are you sure there are no tomatoes, vinegar, or citrus in this dish? Are you absolutely sure?" " Do you have ANY decaf teas available?" and "Why not?" I think I'm driving everyone crazy, including myself.

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  • ScarednConfused
    replied
    hi donna thanks for your input. your right i want and need to start doing things. i just dont like to mess with things. Its like if i feel okay i dont want to mess with it. but then i end up just sitting around all day so its not really a life. i used to play soccer and would LOVE to do it again but i just feel like im so limited. i just dont want to get the pain i used to have.

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  • healingthoughts
    replied
    So Frustrated,

    I so hear you!! I could have written your post myself!! Except I am not in remission

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  • So Frustrated
    replied
    So I guess I'm not alone feeling this way. I don't know if you realized I'm a male with this condition. Not that it matters, but just wanted to let people know it can affect both sexes.

    It's not even so much the pain that gets to me the most. It's the constant nagging urgency sensation and the disappearance of normal voiding patterns. To put it bluntly, I haven't had what I consider to be a normal sensation of peeing (full bladder, strong flow, good volume, etc.) in months and since every day starts this way, reality sets in real quickly reminding me that my life is nothing like it used to be as a result of this.

    The few windows of time here and there when I feel almost normal are short lived and the rebound effect when the sensations return really bring my mood down, because I constantly think that it's clearing up only to be let down again. I am trying to stay level headed and avoid highs and lows, but as we all know, this is difficult.

    The hardest part of all this in my opinion is that all the other every day stressors we are accustomed to dealing with in life are much more overwhelming when IC is coupled with them. Everything seems a lot more magnified. I just hope one day I can adapt and be comfortable physically and mentally again.

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  • mary124
    replied
    I too am like Donna--If I wake up without any pain than I just focus on today--not tomorrow or the day after. Lately though my pain has been in my back (did something to it back in April--finally getting around that I can now work full time on most days). As to my IC-pretty much the same thing, again haven't had too many problems with it as my new pain doctor took me off my pain meds and put me on cymbalta--boy, the difference that has made for me.

    Leave a comment:

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