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Bad flare today

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  • efwinslow
    replied
    Kadi, I am sorry to hear you are not feeling well. If you have ever seen any of my other posts you may be aware that I do not suffer myself with IC but suffer watching my 6 year old daughter struggle with IC. She was diagnosed last June by cystoscopy and hydrodistention. I can see how this disease is so frustrating, and I find also that people do not understand. I have been told so many insensitive things ( like "at least it isn't anything life threatening" or how she seems to be doing great, when I know how painful it is for her or even how tough it is to go to her friends birthday parties and not get to eat the pizza and chocolate cake. Recently I gave in and let her try hot chocolate (1/2 cup with prelief) and she wound up with a UTI and is still flaring miserably. (I've also been told that "at least she isn't allergic to the foods, like people that go into anaphalactic shock")
    Anyhow, I can relate to your emotional frustrations about this disease and I hope you feel better soon. Sometimes it seems people don;t take this as the serious disease that it is to the people who suffer so much from it.

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  • JAF
    replied
    Sandy,
    Sorry you are flaring too. I had a bad night last night and went to bed with my heating pad. Must be time to open up Club UTI Flare Wing today. How about it Kim(VM)?

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  • Sandy N.
    replied
    I am right with you flaring. i have learned that if at all possible log on here and post and respond to others. Too bad we all can not get together when we are flaring. Have a flaring party, or maybe that is the wrong thing to do . Sometimes I tend to get a little b****y. LOL Hang in there..I have found that the advice I get from here is far more helpful then counseling concerning IC. Sandy

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  • JAF
    replied
    Kadi,
    Sorry you are having a tough time. It is tough sometimes. Before I say more I want to say that if the rash and itching are new and you have tried something new, this could be an allergic reaction and should be discussed with your Dr.

    About the IC, it takes time to adjust and accept. I have had this for 29 years and I can tell you there is life with this but you do have to alter life as you have known it. Most of us with the right treatments can live a pretty normal life. But the treatments take time to find out what will work for you. Hang in there and give the treatments time. Hopefully you will find the right combination soon.

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  • kadi
    started a topic Bad flare today

    Bad flare today

    Had a bad flare today & am noticing now I have a light rash on my neck & itching here & there... Anyone else have this?
    (A few months ago, I tried to take Atarax or Benadryl for IC treatment, but they both made me hyper, gave me a pounding heartbeat & panic attacks... Oh well...)

    I am so discouraged & tired of this disease. I had to leave church twice during service & the usher signalled me to wait each time before I could come back in. I hated that, felt embarrassed...

    I just want to cry. I've been sick since July & the Elavil/Ditropan usually help with sleep, but I never feel well. I'm always limited in food, dress, exercise, amount of activity I plan in a day, how far I drive, everything. I'm self supporting & I'm grateful I can work, but I sometimes feel I've lost the fun parts of living...

    I know it's too early to tell if the Elmiron will help-I started that Dec. 23rd, so I guess that makes only 6 or 7 weeks... I could use encouragement. I'm sorry to ask for more (because I feel like I'm always asking), but I'm not doing well at encouraging myself and am worried I'll wear out friends & family. Several friendships have collapsed under this illness...

    How do you all keep yourselves going & not give in to the sadness?
    (Please don't suggest counseling. I'm currently meeting with a lay minister, but had several really bad experiences with counselors this summer and really can't afford to spend that kind of money right now to try again.)

    Thanks.

    Kadi
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