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My Disease

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  • My Disease

    I am a 18 yr old girl and have recently been
    dignosed with IC, it's a experience. I not
    only get sick but hot and cold fevers lower
    stomach pains and unable to eat certain
    things is the hardest. I don't have a life
    anymore I feel it's draining me. I am suppose
    to be happy but all I feel is depressed. I
    even hate myself sometimes and start blaming
    myself. I feel alone because family doesn't
    understand. I pee constantly, I hate it!!


  • #2
    Hi Jacqueline.

    First off, a cyberhug for {{{{{{{you!}}}}}}} Welcome to the ICN. I'm so glad you found us. You'll find an amazing amount of compassion and support on these boards, as well as a lot of great information on this site. I'd highly recommend you read the Patients Handbook on this site. Also, there is a new book out by an IC researcher named Dr. Robert Moldwin called the Interstitial Cystitis Survival Guide. It has a lot of great information in it. You could also have your family read the book so they understand what you are dealing with.

    If you aren't already, avoiding diet triggers can sometimes really help your IC. That's something you can do now. Are you seeing a urologist? What treatments are you currently trying?

    I understand the depression you are feeling and let me assure you that you are not alone. It is common for people who are dealing with a chronic illness to feel this way. We've all been there. Some of us have been to see therapists to help us deal with these's made a real difference in my life. Please consider talking with your parents or minister about how you're feeling. You do not have to suffer with depression.

    Finally, let me say that having IC is absolutely NOT your fault! Please don't blame yourself, Jacqueline. We did nothing to acquire this illness. But we are all in this together and we're here for you.

    Hang in there and let us know how you're doing, okay?

    Gentle hugs,
    Melanie J.

    [This message has been edited by MelanieJ (edited 02-18-2001).]
    "The sun shines not on us, but in us." John Muir

    Living a happy life in spite of IC!


    • #3
      Dear Jacqueline,

      I am 17, from Michigan, and have interstitial cystitis in addition to fibromyalgia, chronic fatigue syndrome, and possible endometriosis (all chronic pain disorders). I have been sick since I was 14, and have been home schooled on and off--- and I have just starte again.

      Feel free to e-mail me.

      ([email protected])


      • #4
        Dear Jacqueline,
        You sound a lot like me when I was first diagnosed 3 years ago. I felt like I was going through such a huge change and adjustment, but no one else understood. My family was not very supportive, and my friends were too involved with their own "tragic" lives to care about how I was feeling. I too was depressed most of the time. I know this sounds extremely cheesy, but it'll get better with time. I don't want to say that you get used to having IC, but you do get used to arranging your life around it. I'm a college freshman now, and although there are still a lot of things I feel like I miss out on, like spur of the moment weekend road trips, I also feel like I'm making the most of what I can do, and that I'm having as much fun as anybody else. You're taking a huge step already by posting here. I'm still a new member, but I already feel a lot of support and understanding from everyone. Hang in there. I'll be in touch.

        [email protected]


        • #5
          {{{{{{Jacqueline}}}}}}} How are you doing these days???? What kind of treatments are you getting? Are you in school? If so do you miss many days because of it? Glad you found us...I hope you are finding lots of good information here! Hugs Julie B

          [email protected]
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author

          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........

          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter

          *Let's Connect!*


          • #6
            Hi Jacqueline,
            I guess all I can really say is "I know how you feel!" Have you had IC for long? I've had it since I was 7 and I was diagnosed when I was 14. I feel cheated, because not only do I not have a life NOW - I haven't really had a normal one since I was 6! Almost too far back to remember. It does get very frustrating following the diet, as you said. Sometimes you just HAVE to cheat. That's the way it is for me. I crave tomato the most, so sometimes I'll eat a (tiny! bowl of Chef Boyardee...I find their sauce a bit less offensive than the fresh.
            I know how wearing it can be to be in consant pain and going to the bathroom so frequently just gets on your nerves!
            As for your family...maybe you could get them to take a look at his website and even read the message boards? There are also books on the subject that might help them understand. That's how I got my mom to understand - and I'm working on my friends now.
            It's hard not to get depressed with it all, but possible. You could try seeing a counsellor, they can sometimes help in dealing with chronic pain, etc. although I haven't tried that yet.
   least you know you're not alone. Hang in there.


            • #7
              hi!! My name is Missie and i know what u r going through. I am new to the network too.It seems as if i cant remember having a life where i wasnt "sick". i have had many treatments and i feel like the only 19 year old in the world who uses the restroom on herself but i know i am not. I dont always do as i should...i never knew of a diet that could lesson the pain until i found this network. the people here are very welcoming...and i think i have found a home. If u ever need to talk, u can email me at [email protected]