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  • JDOOKIE
    replied
    Hello

    wanted to welcome you! i'm also new on here & everyone is very helpful & suportive!! i hope the best for you & your husbend. it's hard for people to grasp that doesnt have it.know that your not alone & hope you find a good doc. take care.

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  • mary124
    replied
    Hi and
    Glad you got a good and understanding doc at the ER for this, as most of us who goes don't - at least that has been my experience... (but my former doctor told me if I went to the hospital that he was associated with I would of had a good experience! Oh well. Glad you are getting the help and medication you are needing. Take care.

    Leave a comment:


  • ICNDonna
    replied
    I don't have much to add, but did want to say to the IC Network. And I encourage you to read the information in the Patient Handbook.

    Warm welcoming hugs,
    Donna

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  • jen74
    replied
    Wow, I am so happy you had a good experience at the ER, it is a rareity to get a good doc who has alot of knowledge especially when it comes to IC. Most ER docs will look at you like your nuts. I am glad you found this site, it has been a God send for me. There are so many wonderful people on here.
    Jen

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  • L. Thomas
    replied

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  • RAS6
    replied
    Hi Jody, and Welcome! I see people have already let you now about the book that will be available soon, but I just wanted to say hello and let you know that I do understand how hard IC can be on relationships. My husband and I have been through alot but we are getting so much stronger because of my journey with IC. I hope you are able to find a good doctor soon. Please stick around here! This has been such a wonderful place for me to find support and become a stronger person!
    Best wishes!

    Leave a comment:


  • angel29
    replied
    thank you!!!!

    thank you so very much for all the info and for making me feel so welcome.
    my current meds are
    elmiron 100mg 3x day
    oxbutynin 5mg 3x day
    esteradiol 2mg 1x day(hormone replacement)
    hydrocodone 10.5mg for pain only got these yesterday at the E.R. my other doctor was giving me tramodol but stopped filling it said i needed to try some advil or tylenol
    the E.R. doctor i saw was a pian managment doctor and was very helpful he reffered me to a uro hope they are good. my husband is trying to be supportive i think he relized yesterday just how bad this can be and is wanting to learn more so that he can help me more. anyways thank you all so much.

    Leave a comment:


  • Babs RN
    replied
    Welcome to the ICN. I have been to most of the ERs in Las Vegas, since my soon to be ex in laws live there. I have to say the urgent cares and ERs are the most understanding I have encountered since dx. If you would like some names of uros and the like, please PM me. Once again, welcome to our bladder neck of the woods.

    Hugs,
    Barb

    Leave a comment:


  • GriffsMommy
    replied
    Jody and to the IC Network. I'm so happy to hear that you got some help at the ER. From what a lot of other members have said ER dr's are not always very knowledgable about IC. It's also great that he told about this great site here. I found it as soon as my gyn suggested that I might have IC when I went home and did a search for it on the web. I am so happy that I did, there are a lot of very supportive friends here who are always ready to give suggestions or just hugs when you're having a bad day. If your husband doesn't understand maybe it's because you haven't fully explained to him about IC? I have talked to my hubby about my bladder until he's ears have fallen off, lol, so he knows a lot about it now. There is so much info in the patient handbook maybe it would be helpful for you to print some of that out for him to read or just fully explain to him what it is like. It can be very hard for our spouses to have to deal with this chronic pain and health problems. You will find lots of info here and hopefully you can find a great dr and start to feel better soon. When I needed to look for an uro who knew about IC (my gyn was the one to first diagnois me) I looked up all of the uro's that accepted my insurance and then I started calling them and asking their scheduling people if any of their uros had a lot of IC patients. One practice told me, yes we have a dr that has a lot of IC patients and she set up an appt for me right then and there, he does seem to know alot about it and has been great so far. Good luck to you and we're all here if you need us

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  • Roxie2007
    replied
    HI! Welcome!
    I too am glad you found us! There's lots of info at your finger tips on this site...it's great!
    Sorry to hear your husband isn't very supportive.....been there done that with my first husband (part of the reason why he's my ex husband! LOL) Maybe it would help if you had him read some of the posts here......there's a section for husband and family members to post questions or vent frustation.
    How's your flare? I hope you are feeling better since going to the ER. Are you following the IC diet? It's VERY important to follow it and find what foods, chemicals etc...cause the flares. What meds are you on now? I hope you find a new IC dr. soon and he's got a great bedside manner.
    Take care.......feel free to PM with questions......Roxie

    Leave a comment:


  • Berkshire Road
    replied
    I'm glad you found us! It sounds like you need a different doctor, maybe, who will listen to you and work with you on finding the right combination of treatments to help you.

    The Intersticial Cystitis Association (different website) has a booklet called "Because You Care," that is for partners of people with IC. We have just heard recently that the ICN shop (link at the top of this page) will soon have a new book available on this very topic -- helping spouses understand. And if you read down the Forums, you'll find some discussion on the subject, under "Talking with Partners" (or something like that). So you've actually arrived at a very good time, for that particular question.

    We all know -- at least, those of us in intimate relationships know -- how hard IC and chronic pain can be on the partner, and on the relationship itself. Please feel free to post any specific questions you may have (someone may have a good insight) or to jump in to any ongoing discussion. You are one of us, and you are very welcome here. Don't be shy.

    Good luck to you, I hope this helps. Stay with us, a good support group is a great help in coping with this rotten condition!

    Leave a comment:


  • charmedx3
    replied
    Hi Jody! Just wanted to say "Hi" . I am sorry you are feeling so bad. I usually get really nice drs at the ER. Check out web site there is a lot of great info.

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  • angel29
    started a topic hello

    hello

    hi my name is jody i was diagnosed with IC in june of 06 the doc i was seeing didnt give me much info, so now i am looking for a new doctor i relocated to Las Vegas NV, i am havind a really bad flare right now and ended up in the E.R. yesterday, the doc there was wonderful he told me about you guys i had no idea there was so much support out here i have felt so alone in this whole thing but now i feel like maybe there is hope to manage this awful condition, does anyone have any ideas about how to get your spouse to understand what is happening and the amount of pain that comes along with all of this?
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