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Fun with IC

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  • Fun with IC

    Hi there,
    Well, I'm new to this board, so bare with me while I let out my agresion. I'm 21 (almost 22), I was diagnosed last July with first I didn't think it was a big deal. But now that my DMSO treatment isn't working, I'm startin to get scared. I was a big party girl...loved to drink and hang out with my friends. Now, I'm not even supposed to drink. I try my hardest...but every now and again, I give in. My close friends understand and they don't pressure me. I don't have a problem with alcohol or other substances...but I'm a typical college student in a small college town. I'm working hard on changing my diet and doing the right things. But it just seems like no matter how hard I try, nothing seems to work. Plus there is all this stress in school...I'm a Senior with a double major and a minor and i work full time as well. IS there any suggestions on how I can get through this?
    "If its meant to be, it will happen to me!"

  • #2
    Hi Kelby- By the way I live in Hutch. So you go to Fort Hays? Used to go up there for orchestra stuff. Anways, I know the diet is really frustrating!!!!! You will get more used to it soon and hopefully when you are out with your friends it won't be so hard to have to drink something different. Glad to hear that your friends are understanding. I haven't been in school with IC. I have some other problems and quit before I got IC. I have just turned 22 and have had IC since January 2002. It is a very frustrating problem, but there are many things that help people, DMSO and Elmiron did nothing for me, but I have found other things that have helped me. Feel free to email me, I would be glad to share what I have tried and answer any questions for you. By the way do you have a local dr??? Just curious Sounds like you are doing good with controlling IC in college. Try not to borrow trouble. There are so many things that help people. Hang in there. My email address is [email protected]

    This I recall to mind, therefore I have hope. Through the Lord's mercies we are not consumed. Because His compassions fail not. They are new every morning; Great is Your faithfulness. "The Lord is my portion," says my soul, "Therefore I hope in Him!" Lamentations 3:21-24


    • #3
      Brooke, I sent you a private message.


      "Life is what happens when you are making other plans" John Lennon

      IC diet cheat sheet....

      Information for Patients can be found here.

      Jen's tips for great IC sex..[/url]

      Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

      "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."


      • #4

        I'm five years out of college, although I'm hoping to get into grad school this year. I didn't really go crazy until I got out of school, but oh, do I hear you.

        I used to be thin. I used to be laughing. I used to be out every night until 4am. I used to be a giant seven martini kind of girl. I used to swing dance and lindy hop every night and take three hours to get dressed to the nines. To have my hair just so, and my stockings straight.

        I used to dance and laugh and drink and GOD I used to have fun. All the time. Every night.

        It was wonderful.

        I used to Emcee at a wonderful swing club and we had the best bands come through and I've never felt so good about myself in my life. I used to weep with how wonderful my life was.

        And then I met my husband, and he was a jazz musician. And we travelled and partied and had fun. And I was his beautiful curvy girl with the curls and the legs up to ya-ya. I was charming and entertaining. Like a 1940's American Geisha. And I loved the attention. I thrived on it.

        Now all that is gone. I don't drink. I don't smoke. I hardly ever have sex with my husband. I eat much more because I'm always tired because if I slept as much as the pills make me want to I'd sleep 14 hours a day. I work and I sometimes clean a little and I sleep.

        And once in a blue moon I go to a party and briefly remember who I am. And without the booze we still laugh and have fun and everyone is charmed to death and begs me to come out again. And I want to, but for the booze and all the smoke and how tired I get.

        I'm not the girl that I was. It took me a long time to mourn her death. It was hard. I fell off the wagon quite a bit.

        But cigarettes crippled me. Being exhausted all the time just wasn't fun and made me look ugly. Booze... booze was like drinking poison on purpose. So I don't do it. And every now and again my heart aches at what I've lost. And then my husband smiles and grabs me and says that he has loved getting to know who I am inside and he loves me more than ever.

        I have had to know me better. It's been good and bad.

        It's hard. I know what you're dealing with and it's hard. I'm not totally over it yet. I miss being that girl. I feel like I got so little time to be her, and I'm 27 and I already feel ancient.

        If you need a shoulder to lean on, feel free to send me a private message or an email.

        Hang in there. grouphug



        • #5
          Hi Kelby! Welcome to the ICN!!

          wow, it sounds like you have a lot on your plate right now. Is there any way of lightening your course or work load? A double major and minor and working full-time is a lot. I worked part time throughout university, had one major and minor....and turned out just fine! lmao

          I totally understand how you're feeling. But it sounds like you've got a good group of supportive friends, which helps a lot. When I go out, I'll drink water or a coke (depending how I'm feeling) and don't feel like I'm missing out on anything. I know it can be hard. I don't drink at all because I know it's a huge trigger for me. I know that I would have to pay in pain and frequency for that one beer. But we're all different, some people might be able to tolerate alcohol more than others.

          Have you had a chance to look through the ICN Patient Handbook yet? It really helped me a lot when I was first diagnosed 5 years ago (I'm 26 now). It has a ton of great information.

          Take care, and welcome again!

          My story of healing and hope


          • #6
            Honestly it took me time to get used to this. if you were on the boards last week you would have seen my emotional break down. If Krissy is mourning the girl she used to be I am mourning the girl I never got to be. I was 16 when I was diagnosed and in a lot of ways not mature enough or prepared enough for what my life is going to be like. No one can really explain that to you. you kind of have to go through it. i am going to be 21 in a few months and i can't have a drink to celebrate. as a consilation i am going to buy someone else a drink. it won't be the same but it is something. that is kind of where I am at right now with my life. it might not be how i envisioned or dreamed it would turn out but I have to do something with it. i will never get used to this or be able to fully cope with it but i have learned how to adjust. i think that is one of the keys. how to adjust and still try to live some kind of life. Welcome to the boards.
            IC-diagnosed August 1998 with cystoscopy and hydro
            IBS-diagnosed in 1998 probably had for majority of my life
            Fibro-Diagnosed in 2010
            Other conditions: Depression, High Cholesterol (irony)

            Primary symptoms: PAIN, bloating, frequency, urgency, fatigue

            Current Meds: Elavil 10mg at bedtime, Toviaz 4mg at bedtime, Lyrica 3x a day

            Failed meds: Vesicare, Detrol LA, Celexa, Vioxx, Celebrex, Ditropan XL, Elmiron
            "In the middle of difficulty lies opportunity."


            • #7
              Okay, so I need to stop the pitty party with myself. I now know that I'm totally alone. My dr. made it sound like it was totally unusual for young people to be diagnosed.

              I've made changes to my diet...before I drank three gallons of orange juice a week, and tons of lemonade, and 6 pops a day...well, now i don't drink the acidy stuff, and only 1 or 2 pops for a boost. I'm digging my water.

              I have started working out 6 times a week, and trying to feel better about myself and the person that i need to become. Alot has happened this past few months...(broken heart) and all.

              Well, thanks guys! Oh and IM me on AOL anytime...
              "If its meant to be, it will happen to me!"


              • #8
                I'm so sorry to say this Kel,

                But the pop can be pretty harsh on bladders. And six times a week exercising can be harsh as well.

                Keep an eye on your body. If it's hurting, slow everything down in a big way and try a water-only few weeks.

                I'd hate to see you exercise yourself into the hospital. (Not that I did that. Ahem. No not at all. Ahem.) wink

                And don't worry about pity partying. I often pity party here. Heck, I provide my own hats and cake! That's what we're here for.

                It just sucks eggs in spades.




                • #9
                  Well, this week has been really bad. I had a flare yesterday, and i'm still not feeling all that well. I've been on a strict water diet for four days now, and its not helping to much. I'm about to die without my caffine! OH well. I'm finally moved own apartment, so less stress due to the roomate. I haven't even made it to the Gym this week, so i'm really slacking off. Oh well. I foregot to mention that i'm on AOL instant messanger if anyone wants to chat. stengerkelby
                  Well talk to you all soon.
                  "If its meant to be, it will happen to me!"


                  • #10
                    Hi Kelby- I would chat with you but I don't have aol instant messenger I have msn. I know it is really annoying not to be about to eat and drink like everyone else or even what you are used to. Just wanted to tell you that I exercise with a exercise ball and pilates type stuff. Can be really low stress on the body and you don't have to go to the gym to do it. Take care

                    This I recall to mind, therefore I have hope. Through the Lord's mercies we are not consumed. Because His compassions fail not. They are new every morning; Great is Your faithfulness. "The Lord is my portion," says my soul, "Therefore I hope in Him!" Lamentations 3:21-24