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  • #16
    Thank you

    Thank you everyone sooo much for your posts! You almost had me in tears at my desk (thats right, i sneak into this forum at work too!)
    I am trying my best to deal with this diagnosis, and not go out of my mind with concern. My family doctor and urologist are both very understanding and supportive. I also have a wonderful boyfriend, and family and friends. However, as I have found, no one really understands what you are going through, unless you have IC. Im praying that I can find a treatment plan for me.
    Thank you so much for all of your support.
    Just one more question. How do you all stay so positive? Many of you have many more symptoms/diagnosis than i, and you are all so positive and supportive. I feel silly for being so down and depressed. How do you all do it? Its amazing... and inspiring.


    "Its a troublesome world all the people who're in it
    Are troubled with troubles, almost every minute
    Just tell yourself Duckie, you're really quite lucky
    Some people are much more, oh muchly much more
    unlucky than you!" Dr. Seuss



    Comment


    • #17
      HI Jube,
      Dont' feel silly for being down and depressed, we all have experienced that many times ourselves over this. I'm happy to hear that you have a lot of supportive people around you, that is such a big plus for you. And your right, no one can understand this unless they are going through it themselves, that's another thing that takes some getting used to. May I ask how old you are? I know when I was first diagnosed I was feeling all of the feelings that you are feeling, you will go through many many emotions. I think your question of how everyone stays so positive is individual, but I also think that it mostly to is everyone trying to support everyone else who is having a rough day or going through a rough time at the moment because we all understand how much support someone needs dealing with this, but I think most will agree that we have ALL had our days where we didn't feel so positive and were the ones needing the support. So it's wonderful to be able to come here and get it because as you said, NO ONE else can understand. So I'm sure soon, even if your feeling bad, you will be positive and supportive to someone else who may need it at the time. Everyone finds their own way of dealing with this and you will to, it will get easier the more you learn and understand about it.
      Have a good day,
      Kari
      Kari

      I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

      Comment


      • #18
        I agree with Kari. I know that I don't always FEEL positive but I always try to post something positive when someone needs some help because I know that the support will be there when I need it.

        My symptoms have been getting worse again, not worse than the beginning but worse than they were say a month ago and I'm having a hard time but it makes me feel good that we made you feel welcome and you found a place where you can get some support. I know you and everybody else on the boards will be there for me when I need it.

        I hope you get a good treatment plan in place too but remember it takes time and IC is soooo different for everyone that it may take awhile for your uro to find the right combo of things that will work for you and get you feeling better.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #19
          Thanks everyone, yet again...
          I truly have been dealing with depression, as all of this started 5 months ago, and has been a frustrating journey of not knowing what is wrong/if and when i would ever get better. Being diagnosed with IC did not necessarily give me the feeling of releif i expected upon diagnosis. I was always hoping for a "oh, you have this, and so you will just need to take this and get all better" kind of diagnosis... and when it didnt happen, i was crushed.
          Kari, I dont mind you asking... Im 26 years old. Which has added i think to my depression, as I am feeling as though I am not going to live as happy as a life as i might have, without IC. Is that horrible to say? I feel horrible saying it, because so many people in this world are suffering more than I am. My uro told me he doesnt want me sitting up all night worrying about my IC, and that we will treat this... which is soothing, but at the same time, this has been more than overwhelming.
          I am so looking forward to meeting people on this forum, and offering as much support as I can to anyone who needs it. I am new, so I dont know much, and cant offer much more than a warm wish and hug right now. Al though I wish i could come to everyone's homes, and give them big hugs and make them feel better
          GriffsMom, Im so sorry to hear that your symptoms are getting worse, but please know that your kindness has really helped me, and has shown what a wonderful support system I have found. Thank you so much.
          I can only hope that your symptoms get better soon.
          My thoughts are with you!


          "Its a troublesome world all the people who're in it
          Are troubled with troubles, almost every minute
          Just tell yourself Duckie, you're really quite lucky
          Some people are much more, oh muchly much more
          unlucky than you!" Dr. Seuss



          Comment


          • #20
            One hour at a time.....
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment


            • #21
              Jube,
              I can already tell what a caring and compassionate person you are, and I'm so sorry you were diagnosed with this. Your only 26 ( the age of my son) so I know how hard this must be for you. It is scarey when you are fist diagnosed because of the unknown, but I promise, the more you learn and understand and figure out the best ways to manage this, you will become more at ease about it. I'm not going to lie, you are right when you say that your life will be different with IC then without, and you are not horrible for saying or feeling that, we all do at some point, BUT it doesn't mean that you still can't have a wonderful and fulfilling life to. You will just have to figure out what works best for you and will discover lots of little "tricks" to get you through by reading posts from other people who have been there. It's going to take time and a LOT of patience. And no, you may not know everything now, and may never know everything (I've been diagnosed for 13 years and I feel like I'm just starting to figure things out only after discovering these boards recently!! LOL) but I can tell by your words of compassion that you will be able to offer support and help to other people very soon. There will always be someone newer then you just coming on, and will have a question that maybe you just discovered the answer to and will be able to share it with them. So hang in there, and try not to let it consume you right away (I know it did with me at first and that wasn't good). So take a deep breath and deal with it as you can, baby steps. Feel free to PM me anytime.

              Kari
              PS- Christine, I'm sorry your having a rough time right now, I am too. Lots of stress going on right now with me also, which adds to my never ending pain! I hope your feeling better soon.
              Kari

              I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

              Comment

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