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Inspirational story. We're all heroes.

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  • Inspirational story. We're all heroes.

    I was thinking this morning. Pondering over thoughts about my condition. Thinking what might happen, what has happened, and will there ever come a time that I might say "I've had enough, I can't take it anymore." And finally kill myself to escape the pain.

    As some of you know, my IC wasn't too bad until I started seeking treatment. Since I've sought treatment, my condition has worsened horribly thanks to two medications called Imipramine and Hydroxyzine. They were supposed to help my IC symptoms, but they actually made it worse, and despite only taking three days worth, and not taking them for over a month now, the damage is still very apparent. By damage, I mean it is still severely difficult for me to urinate and if I drink too much, my bladder and entire private areas become inflamed with severe constant pain. Pain I've never felt until I took those medications. Pain so great, that I when I'm suffering from it, I wish someone would take me out back behind the barn, and shoot me to put me put of my misery. Since this, I've become very scared of what I eat, drink, or what pills I take because now I feel that whatever I may take, may kill me. However, this is something I must overcome, or I'll never be cured.

    Anyways, to the point of this post. After thinking about how much pain I'm in and how much I'll be in and thinking "Why do I live life? Why haven't I committed suicide already to escape my pain?" I sort of realized something. I'm a hero. We're all heroes. I say that because we continue to live what's left of our lives despite the limitations put on us by this condition and lack of medical knowledge. Many people wouldn't be able to do that. Sadly many patients that suffered IC and other diseases that brought their lives to screeching halts, ended their lives because they couldn't deal with the pain and limitations and were just too scared. We're setting a great example for future IC patients and children by showing that just because we are losing the game, we're not quitting.

    I've been suffering from Interstitial Cystitis since I was 11. I went undiagnosed until June 18th of this year, when a Cysto found that I was suffering from a condition called IC. IC has cost me everything in life. It's cost me my health, my education, and my freedom. It's cost me everything, but I refuse to end my life just because there's no cure for it now. Someday, some snot-eating ******* from Harvard will graduate and find the miracle cure for IC. That day, I will still be alive, surviving, waiting for the chance to have that treatment that may actually give me my life back. It may be tomorrow, it may be next week, it may not be for many years, but I will survive this however long it takes. Even if I have to live my entire life without a cure, I will not let this cost me my life. I will also not let Doctors tell me that this condition is a figment of my imagination or that I'm just trying to get out of making an honest life.

    One day, when IC is either curable or no longer exists. Medical students can read about how patients like us lived their lives with this severe pain knowing it couldn't be helped. They'll know that the human spirit can endure anything and will continue to live on. That we did not give up hope for a cure or the chance to live life normal again, even though that chance may never come. The simple fact, that we're all heroes. We're survivors in a stage of life that many humans never experience and could never survive.

    I wanted to post this because I know many of us wake-up everyday depressed because we know we'll be living the same schedule we lived the day before, the week before, the month or even year before. So, just remember, you're a hero. You live life despite having the short-end of the straw and you help other people with this condition through life by simply being here and comforting them. I appreciate everyone I've chatted with here on ICN, many have helped me through the tough times I've been having lately. If I didn't have ICN or friends online that were there for me to vent, I dunno where I would be now.

    I really hope this inspirational story made sense and help those that read it.

  • #2
    That was truly inspiring. I know that I had wondered if this would drive me to end my life. (It won't! Don't worry!!) I live my life despite of IC...although it isn't much of a life right now, I believe that some day there will be a cure, and we'll all be healthy!! But if that happens, what will become of this board?

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


    • #3
      Hi, I am so glad that you posted that inspirational piece of writing, it made me feel we can really win this battle with IC by thinking that we are heros and heroines struggling everyday to win the battle with IC. Thank you for posting, hugs Iris kissing
      Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


      • #4
        That was a wonderful story. It was very inspirational. My way of coping with IC is weird. I actually get mad at it. I mean totally ****** . Just like getting ****** at someone else I refuse to let it ruin my life. i may rest and take it easy occasionally but I'll be damned if i let IC cause me one more day of missing out on life.



        • #5

          Well done!!!! That was truly inspiring.

          Thanks for taking the time to remind us all that we are stronger than we sometimes feel!



          • #6
            Thank you so much for posting this.

            Reading this has made me feel, yes, there ARE other people out there who truly understand what a struggle it's been to have lived with untreated IC for years (I was told to learn to live with the pain by a jerk Uro).

            There are so many nights when, if I had had easy access to that gun with one bullet, I would not be here now.

            But yet, even though IC had taken over my life for the past several years - making it impossible for me to work, to be able to plan more than one day ahead of time - it's not something that can be discussed in public. When we see old friends (went to dinner tonight with an old friend) I mentioned I was happy because I finally got something that worked for my IC. I had to explain briefly what IC was. I was told by my husband, "do we HAVE to talk about that?" Like it's such an embarrassing, unmentionable disease.

            I told him tonight I wished I had cancer instead of IC. Both are incurable, painful, horrible diseases, but at least cancer is no longer an "unmentionable" disease that is "all in your head" and "not really that bad" whereas judging from the way people react when I mention it, IC apparently is.

            IC has been a HUGE part of my life for several years. If someone I haven't seen in several years asks me how I've been, I do not feel I am being honest if I do not mention that I've been dealing with a very difficult disease that has adversely affected my life.

            But...IC is apparently "unmentionable" and embarrassing.

            I didn't go on and on about IC - just said "it's a disease that feels like a bladder infection only they tell you to go home and learn to live with it instead of giving anything to help you cope with the pain and irritation."


            I hate socializing anyway.

            Okay, got off track here. It did my heart much good to read your post because tonight I was thinking, there is NO person in the world who has any clue as to what I've been going through these last several years, including my husband.

            Love, ICY


            • #7
              Thanks for that! I don't know if I can print that off but sure going to try. On hystersisters we had a saying every day is a PEE bit better! Pray that the day will come when there will be an answer for us.
              Love,Pam grouphug
              God brought me to it, He will bring me through it!!!

              Diagnosed 2003
              by cysto/hydro
              Elmiron took almost a year- made me sick, caused diarrhea
              Pyridium -Made me sick
              Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
              Tried DMSO instill- had 5 out of 6
              Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
              Cysto/hydro April 6th 2011-- on expansion only hold one cup
              IBS/ IC
              High blood pressure meds and Crestor
              Metformin (prediabetic)
              Sinequan (depression)


              • #8
                Printing would be simple. Just Highlight the message-body, right click and select copy. Then open a text program like Microsoft Word, Wordpad, Notepad. When you open that program, right click the body and select paste. Voila, an exact copy of the text only. Cleaner print.

                I'm glad everyone likes this story, it helps me everytime I read it. Everytime I go to the restroom, I go through pain and have thoughts, but then I remember what I've said here, and it makes me want to survive. We will survive.


                • #9
                  What an incredible post ! You and many others on this board help me understand my son's pain.
                  When you share/vent/express your opinions on your disease and what it has done to your lives it opens my mind to what you are actually dealing with on a day to day basis. Your words can be some of the EXACT words I hear from my son. He tells me Mom if this was Cancer people would be understanding or sympathetic..but IC ya gotta explain the symptoms and blah blah while you see this "da" look on their faces. I've watched my son give up the life he use to know in order to deal with his pain on a daily basis. Personally, we (he) have not been helped by modern so called medicine...(that's another story)he has selected to supplements and or alternative medicine. Matter of fact, he wishes we could have been more educated on natural supplements to aid in his recovery. I say recovery as I am a determine mother to finally find a combination of supplements/herbs/vitamins you name it to combat this disease that has invaded his body. YOU all are Heros ...HE is my Hero..I have watched him fight and not give up. His tears over this disease could fill buckets. And I as his mother have felt so helpless at times! I too don't want to give up on helping him find answers for his symptoms. You all help me help my son...Thanks!


                  • #10

                    Thanks you so much for your story. I just read youe story. you won't belive me i cry a lot & can not stop my self.


                    • #11
                      I know what you mean IC Yuck. When I lost my job at a law firm that I had been at for 16 years, one insensitive female attorney said "I cant believe you are leaving on disability for a bladder infection." I had tried to explain to her in the weeks preceding that the chronic pain of the condition, etc. She just blew me off and said "I'm busy." When I went on disability I stewed about it and and finally wrote her a letter and told her what I thought of her insensitivity and I also enclosed an article about the disease. She was Jewish and had alot of bladder infections and when she read that many of the sufferers were Jewish and many had had numerous bladder infections, a friend of mine who was still working there said she freaked out every time she got one (thinking she had IC). Oh the power of words!


                      • #12
                        Here it is, January 21st.
                        My condition is now a little worse. I have more pain everyday and now had to depend on an indwelling catheter due to retention and very low bladder capacity.

                        I'm seeing a new Uroloist on the 27th, so hopefully he'll have some sort of treatment that will help me without causing me additional pain.

                        Even though I seem to be getting worse, I still am not gonna give up even though I talk about it alot lately. Life is worth living even though there is pain. Never give up.

                        I thought I'd bump this little story because some of the new members could use a little inspiration.

                        Take care everyone and be well.


                        • #13
                          Hi Coyote hi
                          Your post was not only inspirational, but also so brave. Thanks for sharing such private thoughts that many of us here have felt, yet were not able to post it.I am glad that you have decided that life is worth living, cuz we need you around here. Again, thanks for your touching post grouphug
                          Wishing you the best, today, tomorrow, and always! Sheri G


                          • #14
                            What you said obviously hit a nerve with so many of us. It's really ironic because I wanted to vent tonight about how miserable I feel. I want to feel good again, have a life. I miss my old self, my old life and I want it back. IC has taken control of my life and it sucks! I want to be able to do everything I used to do, instead I'm stuck at home close to the toilet and heating pad. Haven't been back to work since my diagnosis last feb. I've tried several times to no avail. I have not accepted this disease and still pray I will wake in the morning normal and this nightmare will be over.

                            I'm seeing a wonderful uro and am taking all the right meds. and have been told it could take up to 18 months, just be patient. Dr. did recommed a pain specialist who I'll see in March.

                            I am so lonely,depressed and have gained 30 pounds since april. That in itself is depressing! Initially I lost 10 pounds. I used to exercise 5-6 days a week and be in good shape, very active and on the go.

                            Thank goodness for this message board. Even though it helps , I need more support.

                            Thanks for listening,
                            Julie banghead banghead toilet toilet cussing frown


                            • #15
                              What can I say? Words really can't express what I felt when I read your post. It was incredible. I cried. I had to stop reading because I couldn't see the words through my tears. I absolutely loved it Coyote. wink

                              grouphug angel

                              We are truly blessed to have such an incredible support team here at the ICN.