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Still flaring and very very sad.

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  • Jinny Jean
    replied
    Thank you! I wasnt aware that we had that option. I will to ask my dr about it. I think he will tell me no though. No one seems to know anything in my town unfortunatley and id have to go to the ER for any real help because my dr. takes two weeks to get in too.... I might try the walk in in the next town though, maby they would have some advise...

    Thanks again

    Jenn

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  • wizbe
    replied
    rescue instillations

    Hello there...

    I live in Canada... I just wanted you to know this option.
    I have never had any of my instillations done by my uro. I am 14 hours drive from there. My general practitioner does it. And I did get a nurse do it once too!

    Just thought I would put it out there.

    Blessings,
    Wizbe

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  • Jinny Jean
    replied
    PS 123456 I just sent you a PM. Not sure if I know how to work the private messege thing haha but it should be there

    Jenn

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  • Jinny Jean
    replied
    Thank you Ussually I do have hope! I guess when you are in the middle of pain you lose all hope Anyways I am feeling a little better now. My mom came in my room this morning, and what she said hurt my feelings, but she IS right.. I have been grasping at straws and doing EVERYTHING in my power to try and find something that works. I have used my body and bladder as an experiment and I am VERY stubborn. I have tried every suppliment I have come across, I have changed three different diets... blah and im tired. She said stop! slow down and do one thing at a time--- when I think back to a little while ago, I stuck strictly to JUST the diet and was on elmiron, stopped ALL the suppliments ----I had one month of feeling really good!

    I think that was because I was doing things very simply. Im trying to be patient with my body but I hate it right now and its hard to even allow my bladder to live in my body! I feel like if it cant behave then it needs to get out. lol

    Lots of the time I feel really helpless, how can this just come on so suddenly!!!!!!!!!!!!!!??? I was fine before this and I feel like it has stolen my life. (well ok this is not entielry true) because by nature I am an optomistic person for sure... but it just gets hard to stay in control. 123456- I really hope your right, and im so glad you are doing well. I try and think, wow there are alot of people who USED to be on here, where did they all go? well, they probably figured out what worked for them, and are simply living normally because they dont need any support.... this is what i like to think. whether or not its true im not sure.

    Well at least I know that it was the antibiotic that were flaring me BIG TIME...guess no more of them!// I have a few triggers pointed out now: Cranberry anything (obviously) lol pop, ANTIBIOTICS.. MSM/gluclosamine thats about it right now. ( I just assume that cocolate, tomatoes, anything spicy also gives me a reaction and I steer clear) haha.

    Thanks everyone for your kind words, I hope that I start feeling better and can turn it around and help others! When you see me giving hope to others- I feel good lol... isnt that how it goes!? lol

    I was also thinking about this on a side note. I am officially a social worker as I got my degree last week, and I actully had an epiphany the other day... I think maby I am meant to work with people who suffer from chronic illness and disease. I think by me having this I am able to relate to these people on an incredible level....not just someone who has sympathy, but who actually has a feeling of what they are going through...I hope to get well enough that I can inspire others with chronic illness that there is hope

    Funny how life leads you down such different paths....

    Thanks again

    Jenn

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  • passion4life
    replied
    Sending hugs your way....hope you feel better soon.

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  • 123456
    replied
    It really does get better, I promise you. There are many of us who live normal lives, work, raise kids and even have fun sometimes! I was like for at least the first 3-6 months before any treatments started working. Now, that it's been almost 2 years, I'm pretty much fine ALL THE TIME. I seldom have a flare up and when I do, it's VERY short. I think the worst has been for a day. Usually a flare is for a couple hours due to something I ate that I didn't know would flare me. Have hope and think positively. We're all here for you!

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  • sabstory
    replied
    I am trying to get in with a pain clinic here in Oklahoma, and it is such a process. I understand that they are trying to keep pain meds out of the wrong hands, but I hate that it takes so long to get meds to people who need them. I hate this disease, which is my mantra right now. I hope that you get better results, and I hope you feel much better soon. This is my hope for all of us.

    Leave a comment:


  • Linda May
    replied
    Dear jenny jean are you close enough to new york for treatments it might be worth your while?

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  • Jinny Jean
    replied
    Im not aure about the states,,,,, but here in Canada, we have to wait a loing time to see a uro.. so rescue treatments pretty much dont exist here

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  • Linda May
    replied
    What about DMSO or Rescue treatments?

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  • flowerangela
    replied
    ive found that drinking alot of water or vanilla ice cream/milkshake soothes me. i am still in pain also

    Leave a comment:


  • kadi
    replied
    Just sending a hug & praying you will have relief soon.

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  • ICNDonna
    replied
    I totally understand how frustrating IC can be. I hope your tomorrow is better.

    Donna

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  • Jinny Jean
    started a topic Still flaring and very very sad.

    Still flaring and very very sad.

    I just read thorugh all the posts in the flaring section... Seems like I am still flaring from the antibiotics... I stopped them on Thursday and Im still in pain... I am so sad, and down and feel like a waste of skin. Does this really get better! Right now it feels like it never will I have tryed everything today! (although I made the mistake of using monistat which made it worse) I have tried hot baths, tums, tried to go to the ER to get a catheter but it was super busy, eating just plain pears, drinking tons of water, nothing is working! HOW AM I SUPPOSED TO LIVE WITH IC !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!! Please tell me because I am so desperate for some hope.
    Last edited by ICNDonna; 06-19-2011, 02:57 PM.
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