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  • #1

    Does anyone know?

    How are you coping with having this terrible disease? I'm not doing well coping with it.....I am disabled in a wheelchair have Cerebral Palsy ontop of IC..Was born with CP need help taking care of myself.....Have a foley Catheter 24/7. I'm at a point now that I cannot believe that I have IC........When I first found out that I had IC I was o.k., but now it's been bothering me!!!! Please let me know.
    Take care,
    Lynne
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  • #2
    Hi Wegs93

    So sorry to hear of your other medical problems other than the I.C. I will keep you in my prayers. I have kept my sanity by prayer and staying in my Bible Studying. I have alot of support at Church and with my family. I have also purchased some books about I.C. that gave me alot of knowledge about understanding and coping with this disease. These forums are also good to share our stories so that we can be there to help encourage one another. Hang in there and don't give up!!! God BLess...

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    • #3
      Thank you, for replying to my post..Keep in touch!! Also, keep me in your thoughts!!!!
      Take care,
      Me

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      • #4
        One of the things that has helped me is to find loving and supportive people and grab them and hold them tight to you. One thing this disease has proven is who my friends are. One friend bought me coffee for xmas (she was supposd to be my best friend, and I told her numerous times that was something I couldnt have). Due to that and many other reasons, Im no longer friends with her. My other friends are great! They dont complain when I have to use the bathroom all the time. They dont get upset that I cant drink when we go out. They are patient when Im in pain and need an ear. My co workers are just as great. I feel like I am the luckiest person around just because of the people in my life.

        I hope you feel better soon! Feel free to holler anytime!
        Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

        I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

        Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

        I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

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        • #5
          I am so sorry to hear how much you are suffering. I am not in a wheelchair but I do suffer with ME so I know how it feels to be housebound and to feel so depressed and low.
          Sometimes it just doesnt seem fair to have ic let alone another disease to cope with!
          But remember you are a strong lady so you need to find some strength deep down and realise you have to keep going! I know its hard at times but you will have happy times too and your life is precious

          x
          Started with symptoms 2004 after a severe infection.
          Was diagnosed with IC Feb 2006 after cystoscopy.
          Diagnosed with vulvodyina and PN in july 2006.
          Dignosed with ME and IBS Oct 2006.
          Currently taking Amytriptaline 50mg, regular pain killers and birth control!
          Also doing IC diet and regular use of heat packs.
          Still struggling with IC and controling my symptoms so looking for some help

          also recently had abnormal pap, CIN III and just had LEEP done 2007

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          • #6
            Thanks, for writting back to me. You can write to me anytime too!! Hope you keep feeling better too!!!!!
            Take care, keep in touch!!!!
            Lynne

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            • #7
              Lynne, please know how very impressed I am with you -- you have so many health problems, yet you come here to help others! You are wonderful, and remember that.

              Know it's absolutely normal to go through phases of grieving after finding out you have a new chronic disease -- it might not hit you at first, but you may go through those stages of grief like denial, anger, sadness... I think it's because we are grieving for a type of life we have lost, or even a self that we think we have lost.

              I think part of coping with IC is realizing we are still our wonderful selves beneath our diseases -- when I was first diagnosed, of course I was angry and depressed, but with the support of my entire family (both mine and my in-laws) I was able to come to terms with it by realizing that I am still "me" beneath the IC and that I am still valued by a lot of people in this world. It's like my diseases are my clothing -- they sit on top of me and sometimes get in my way (ever get your dress caught in the car door? LMAO ), but they are just things, and beneath them I am the same person day in and day out no matter what I wear.

              It can be hard to get to that point, I know -- the others are right though, reaching out for support from family, friends, and also here online helps. We're sure glad you are here!!

              Reading up on your condition and knowing everything there is to know about it can make you feel empowered too, like you've "outsmarted" IC. ... not giving up on finding the treatment that works for you goes along with that.

              For me, keeping a journal and doing some soul-searching helped me stay in touch with my inner self, and trying slowly but surely to begin to do some of the things I liked before IC helped me keep my sense of "outer self" too. And then, also, reaching out to help others with the disease really helped me rise above it.

              Again, I just want to tell you how great it is to have you here
              ****
              Jen

              *Diagnosed with severe IC in 2004
              *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
              *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
              *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

              **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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