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  • Kara
    replied
    Cee,

    Welcome to the ICN!!! You will find lots and lots of support here!

    I like to use the April Showers document to describe how horrible IC is for us. People think we LOOK wonderful but inside we feel the exact opposite....

    Here's the link to the April Showers document:

    www.proceed.net/~terriw/showers/index.html


    Welcome,

    Kara <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> <img src="graemlins/hi.gif" border="0" alt="[hi]" />

    Leave a comment:


  • ryanm
    replied
    Welcome aboard Cee! You've found a wonderful place here! I don't know where I'd be mentally if it weren't for these guys <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

    Thank you for your post. It's good to know information about new comers!

    Leave a comment:


  • ICNDonna
    replied
    What the elavil (amitryptiline) did to me was to send my blood pressure to dangerous heights. I only took it for four days.

    The one I'm currently taking is Thorazine; I've been on it for 8 days now and it seems to be doing a very good job for me so far. I'm still crossing my fingers, but my blood pressure is staying where it should be and I'm not wanting to sleep all day, which was my biggest problem.

    It can take a while to find exactly which meds work best for each of us, but I think it's worth the effort.

    Hugs,
    Donna

    Leave a comment:


  • mayray518
    replied
    To Donna: You say you could not tolerate the elavil. It works for me but I do have side effects of tiredness. Do you try any other tricyclic antidepressants for IC and, if so, did they work as well. I know the newer SSRIs do not.

    Leave a comment:


  • JAF
    replied
    Hi CeeCee,
    I wanted to add my welcome with all the rest. I just found this board a few months ago and it is the best resource I have found. [img]smile.gif[/img]
    Jo

    Leave a comment:


  • ICNDonna
    replied
    I'd like to add my welcome to the IC Network family. I know you'll find a wealth of information and support here.

    I second the suggestion that you read the information in the Patient Handbook on this site. You'll find the link on the pull-down "Browse Our Site" menu at the top of this page. Also on the pull-down is a mini-directory of other sections of the site.

    I'm another who couldn't tolerate elavil --- but there are many other antideparessants that , when taken at low doses, help with pain.

    Sending a welcoming hug,
    Donna

    Leave a comment:


  • mayray518
    replied
    Dear Cee: I too, went through a living hell with IC. I was told I was going through menopause (at 38) was depressed because I wasn't married (that's a good one) and too stressed out because I had been at the same job for 18 years, and the best one ever was that I was a good actress and really wanted pain killers. Finally I was diagnosed in 1994 and elavil saved my life. It was the only thing that ever worked for me. The internet is wonderful though. We can all compare our stories. Feel free to e mail me [email protected]

    Leave a comment:


  • Alexa
    replied
    Dear Cee,

    Welcome to the ICN! [img]smile.gif[/img] I'm glad you found us! There's a ton of great information on this website, so I hope you have a chance to browse around and check out the ICN Patient Handbook -- it's been really helpful to me.

    Welcome again! [img]smile.gif[/img]

    Hugs,
    Alexa

    Leave a comment:


  • vm
    replied
    Welcome, Cee!!! So glad you found us - this place has been a lifesaver for me soooo many times. Hope to see you around. [img]smile.gif[/img]

    Leave a comment:


  • CeeCee
    started a topic I'm a newbie here. Thanks for listening!

    I'm a newbie here. Thanks for listening!

    Hi,

    I'm new to this message board.

    I think I have been struggling with this horrible illness since 1987 but was diagnosed in 2000.

    In 1987 I went repeatedly to my gynocologist about pelvic pain and complaints of a possible bladder infection. The first time he said he suspected endometriosis(sp?)and did a hysterectomy. Guess what? I didn't have that. And I was only 31 at the time. After that I visited him with the same complaint and he said I had chlamydia. He prescribed antibiotics for both my husband and myself. I had no idea what this was. I was watching Good Morning America and there was a doctor talking about STD's and this was one of them. (There were many other visits in between the two.)

    I was mortified. Not only that. I was furious with my husband because it could have only come from him. I knew I hadn't cheated. The t.v. doctor stated that the only way to know for sure was from a blood test. I returned to the gyno and demanded one. Guess what again? No std. Needless to say I changed doctors.

    But even then every doctor suggested something other than IC. I'm not blaming them entirely. But about three years ago I finally found a good gyno and he suggested I go to see a urologist with knowledge of IC.

    I came home and researched about doctors in this area with expertise on IC. I have found a wonderful doctor. He listens to me on all complaints. He has given me names of other women suffering from this that would be a good support system. With their permission, of course. I think I fell in love with him when he told me it wasn't all in my head. He did put me under and did all the tests required to show I do indeed have this. He even shows his nurses what to look for during the tests. One nurse was shocked by how bad it looked. And then he patiently explained the nature of IC. He said if you injected urine the size of your pinky fingernail into the top side of your hand it would remain swollen and burn for up to a week. Then he said just imagine the bladder that is full of these holes leaking onto the muscles! Also we know how a baby's behind would look if we left a urine soaked diaper on them for a long time.

    I have a lot of aches and pains. I take elmiron and I was prescribed elavil but didn't tolerate it very well. I've had the rsmo treatments but had to stop because it inflamed the bladder even more.

    Some days are better than others. Of course, each of you here know that. Because it is a hidden disease most of my relatives and friends don't understand it. So better to help them I made a paper consisting of some material I gathered from the web on IC. I tried to keep it simple and brief. They have been much more supportive and understanding since then.

    I am trying very hard not to take a lot of pain meds because then I am constipated.

    The most depressing for me is that I have always been very active and love working outside but find most days I can't. I even sold my lakehouse because I would be so depressed because I didn't feel like doing any water sports.

    But today is a good day and I'm thankful for that. And I am so grateful to have a wonderful and patient husband. My doctor told me he has had several women whose marriages have broken up because of this disease. So sad!

    I am so glad I found you all. I feel like now I will have some friends who can really relate.

    Thanks,
    Cee
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