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terrific IC letter!!!!!!!!

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  • terrific IC letter!!!!!!!!

    hi all.. i took a long time with this.. finally i have sat down and written it...
    here is a letter to people without ic....

    Hi, i hope you will be kind enough to read every word of this letter to the end. it means a lot to me that you understand how i feel...

    I am still me. but i have this painful chronic bladder disorder called interstitial cystitis (IC) It is a chronic inflammatory condition of the bladder. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy .the cause of it is unknown and there is NO cure. all i can do is to live with it for the rest of my life and try to cope.

    Imagine, i need to go to the toilet every 20-30 mins. i can't hold my urine as it is extremly painful --it is just like you are having hot burning lava in your bladder and you JUST have to go!!! i spend alot of time in the toilet.

    everytime i go in the cubicle, i have to brace myself for a 'volcano eruption', painful pee session and when i pee, i get all tensed up, my face turns red, i break out in sweat, i need to bend over , curl up and grap onto anything like the toilet rolls holder and let out the HOT BURNING LAVA PEE....and when it's done, i have to make sure there is no second round of pee/leakage, let the pain relieve slowly and then i can zip up and get out... not to mention i will be BACK after 20/30mins...

    Each pee session is so torturing for me and i even have to wake up every hour or so when i sleep to pee hot lava!!!

    when i am not in the toilet, there are timeswhen i get a flare, and i have this terrible burning pain in my GROIN area and i just can't move or even think properly. Do YOU even have the MOOD to do anything when your vagina/penis is burning with hot lava???

    on top of that, i am depressed. how can you be happy when you have this kind of pain?? i can't even do normal things like sit through an entire movie!!i never know when i am going to get a flare and it affects my entire life!!i am scared and i don't want to be a burden to anyone... I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too. „« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal

    that is my life and i am struggling to cope with it. i don't expect you to help in anyway as you can't. i just hope that you will be more understanding and patient with me when i am in pain, when you have to wait for me when i am in the loo, and be sensitive when i am depressed!

    sometimes i feel so left out! it's like i don't belong or i am weird or something. sometimes i just can't take it anymore and don't even feel like living.i will never be fine or ok... but it is comforting and nice to hear you utter words of concern to me once in a while. i really appreciate that. i hope you will be here for me just as i will for you. thank you and God bless.

    hope you like it and please give me your feedback, what to amend, etc grouphug

  • #2
    Oh Gwynnie, kissing

    This is such a great letter, you know you have pretty much summed it up for all of us!

    This probably took you forever to do, and so much thought went into it, you should feel so great to have posted this. bunny

    It is time others know how it is to feel like this 24 hours a day.

    You're a sweetie pie, but don't give up honey, we WILL survive this thing and WILL get over it, just got to be positive( I KNOW it's hard sometimes ) but WE WILL!!!

    Disneyland here we come!! hi

    Hugs&Kisses, angel

    Dee :-)


    • #3
      i belive you done a wonderful job way to go you said it all!
      Medicine taken daily or as needed:
      1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
      2. MS.Cotin 100mg 3x daily
      3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
      4. Fentanyl 100 mg Change every 48hrs.
      5. Gentamicin 80mg install after each rescue treatment
      5 Leviquin 500mg self start as needed.
      6. Klonopin 1 or 2 daily as needed.
      7. Prosed/DS as 1 every 6hrs as needed.

      I have IC, but IC doesn't have me anymore!


      • #4

        i have edited it abit... and i am going to print a copy to put in my bag and show it to everyone who ask how i am....


        • #5
          You are so wonderful! What a great job!!!

          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


          • #6
            Great work Gwyn, I especially liked the part about sounding and looking healthy, doesn't mean we are not in pain or getting better. That's the part most people don't seem to understand.


            • #7
              That is such a great letter. Thanks for sharing.

              I also want so badly to make people understand my condition better. Last week at work, someone said to me "You don't mind if I tease you about not being able to drink coffee like the rest of us, do you?" I said "no, not at all", but what I really wanted her to know is that I hurt even when I just stick to water. I thought then, one of these days I'm going to give my co-workers a printed out info sheet on what it is I have to cope with day in and day out.

              You have paved the way. Many thanks.



              • #8
                hi gwen,
                that was agreat letter
                'The will of God will never take you where the Grace of God will not protect you.'


                • #9
                  Hi Gwyn! hi First off, please let me say that I think you are just adorable (and I still havent gotten into the photos)That letter is remarkable, straight from the heart. How lucky we all are to know you my friend! grouphug Sheri
                  Wishing you the best, today, tomorrow, and always! Sheri G


                  • #10
                    I think the letter is just perfect. You said everything you feel without going on and on about one particular thing. Maybe we can use that letter as our IC letter to Normals. It really talks about the depths of IC and how it makes us feel everyday. I think it's an EXCELLENT letter. WAY TO GO GWYN! I'm very proud of you for writing this. Not only will this help your friends and family to understand, but it also will help you to get things off your chest.

                    Love and Hugs,
                    IC Angel: Proudly supporting the Children and the Elderly with IC.

                    E-Mail: [email protected]


                    Revelation 21:4
                    "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."


                    • #11
                      Excellent letter Gwyn! U took the words right out of my mouth! Love Sandra! grouphug


                      • #12
                        Considering the sufferings we have every day. We are so brave, aren't we?


                        • #13
                          I think you did a great job on your letter. I am not ashamed to share my illness with people I work with so I have told them what I go through. It is amazing that they can hear what I say but not quite get it. However, one of my co-workers found an article in a magazine and read it. She was very understanding after reading it. I carry that article with me now in my purse. It gets our point accross.

                          Kristi grouphug
                          A Christian Surviving IC,

                          "And now these three remain: faith, hope, and love. But the greatest of these is love." Cor: 13:13


                          • #14
                            GWyn great job on the letter. You did it. thanks for sharing. You are an angel. angel
                            Hang in there , There is hope.
                            There is hope. Prayer works.

                            Love, Debbie


                            • #15
                              thank you ALL....
                              i am glad you liked it..

                              ps sheri.. i have sent you the invite to the photo forum MORE than 3 times!!!!!!!! have you received it???