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An IC Action Plan

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  • GOOD article I loved it all except this part...

    You are not your IC. IC doesn't change your head, your heart, your brain, your intelligence, your soul.

    I have IC , FMS, IBS, CPP, and other issues. I have IC and it has been life changing for me, and not in a good way. I have IC, IC has changed my life and I have affected the life of those around me...I dont want my friends and family to feel sorry for me. I want them to understand me. IC and multiple operations has changed my life. I would not be telling the truth if I were to say it is all ok... that I am ok with this disease. This is where I have to remind myself that I have to learn to accept how my life is now. I wish I felt more empowered over my IC.

    I wish all of you the strength to preserver!

    I think it is ok to be a little angry about this life changing disease.

    I pray that in the coming years that there is a better understanding of IC and I pray that this affliction is curable.
    I pray...

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    • blondiee30 , I would suggest you get out of your house. I dont know how old your kids are...take your kids to the mall or some place they can run.

      Find a place where you can walk and just be arround people and a bathroom of course.

      I know with small kids it can be taxing...but dont stay stuck in your house.

      When I have had a lot of down time and then I start to feel better I have to get out of my house. If I have my daughter with me we go to the mall, or to McDonalds.I force myself to drive the hour to get to a city where we can find something to do. I walk and she enjoys going to the pet store s at the mall. And we walk , my daughter gets a few treats and all is good for a while

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      • HumDucky, hey I am unable to find your post. I looked through all 8 pages. Is there something wrong with the site?

        I just wanted to say you are knocking on my door. It was 11 years ago I found out I have IC and others. The IBS is a real killer for me also.

        I just said to my husband most of what you said in your article. I try to relate to him the best I can. I talked to him about my choices being taken away from me.

        He doesnt seem to understand. After 11 years of doctors my situation hasnt gotten much better. It is sad and I feel for each and every one of you.

        I do not have a good support system nor do I have any family or friends who care.

        Isolation is a big problem for me beause I am in rural ND.

        Dont be alone with your IC.

        Take Care

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        • Hello i have just been diagnoised and i am trying to find really good ic doctors in my area i live in connecticut and i am willing to travel to rhode island, mass to get the right treatment please help me the doctors i have now really have no clue what they are doing. olease and thank you

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          • Thank you! Your determination and words give me hope! Do you think we are close to any type of cure?

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            • Thank you very much for this post!
              "For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart." Jeremiah 29:11-13

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              • Thank you Jill!

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                • I am printing this out--so that whenever I feel down or depressed I can look at this and my spirits can be lifted once again

                  Thanks for thinking of posting this <3

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                  • Thank you for the very informative post! You are right about taking the pain killers early. I was talking to my grandma this weekend and she said hers take about 2 hours to work. I feel the same and I'm always waiting. I am right now! It's a rare day I don't need them early on. I was happy to go without a pill until lunch time yesterday. I think it was only because I didn't have dinner the night before but I'll take it. It's only about once a year I can go without them for a day. I would love to be free of my pain killers someday! Need to reevaluate my diet I think although I already avoid most foods that can be triggers for ICers.

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                    • Thanks not only very helpful but a pleasure to read. fills me with a bit more optimism.

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                      • Thank you very much! I will spend hours on this network!

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                        • Re: An IC Action Plan

                          This is an awesome post Jill! Keeps me going!

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                          • Re: An IC Action Plan

                            How long does it take for the diet to work?

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                            • Re: How I Cope With IC - An IC Action Plan

                              Thank you so much for the wonderful information.

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                              • Re: An IC Action Plan

                                That's a great post Jill!!!! Do you still sell the San Diego conference DVD's? I've seen your YouTube uploads of Dr. Parsons, but I'm betting the complete lecture would be fascinating. I love listening to the experts and research....
                                "Where there is hope there can be faith. Where there is faith, miracles can occur."

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