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Inspirational story. We're all heroes.

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  • Katrina
    replied
    grouphug Your story has a message people need to here. Thank you, believe in your inner power Coyote.....it is ammazing! grouphug

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  • Sue
    replied
    ~ Thank You CoyoteMystro ~

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  • auntiedeb
    replied
    grouphug grouphug grouphug

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  • Laurenn
    replied
    Dear Coyote--
    Your post really is a gift------it expresses what so many of us feel. I really believe part of the pain
    of IC is the incredible isolation, and lack of understanding from so many of the people around us.......

    THANK YOU!!!-----and I hope this year will bring only WONDERFUL things for you, and your IC!!!

    sending HUGS, Laurenn

    grouphug grouphug grouphug

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  • Zanni2
    replied
    Coyote, you are one brave soul. I have read several of your posts about what you've been through over the last month and I am truly amazed at your positive attitude. Before I found this message board, I felt alone in my IC, like an outcast of society. It is comforting to know that there are many people out there who understand IC and who are not giving up in finding if not a cure at least a successful treatment.

    Hopefully your next urologist will offer you something better. I wish you all the luck in the world. angel

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  • Cali girl
    replied
    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.

    Cali

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  • Vicki Brown
    replied
    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

    Leave a comment:


  • SheriG
    replied
    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

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  • CoyoteMystro
    replied
    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.

    Leave a comment:


  • mayray518
    replied
    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!

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  • virgo
    replied
    CoyoteMystro,

    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.

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  • momoficson
    replied
    CoyoteMystro!
    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!
    brenda

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  • CoyoteMystro
    replied
    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.

    Leave a comment:


  • lalarainbow
    replied
    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

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  • ICyuck
    replied
    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."

    Bah.

    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

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