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IC: A Survivor's Tale

4/17/2011

 
Six years ago inside a 1920s cabin, complete with wood stove and a white claw foot tub, perched high in the mountains of Colorado lived a woman and a man and their cat family.  This little cabin and their lives merging was supposed to be a colorful new thread in the tapestry of their lives together.  Bookshelves were bursting with books from both of their interests and the cats, used to living with only one or the other of us, began to form a larger cat family.  Days were spent 'in town' shopping for art and the perfect furniture to fit into the little cabin in the mountains.  All seemed well, except when you take a closer look, all is not right for this woman and man so desperately in love: tragedy and loss struck within one month of moving in together. 

His heart began to grieve.  Her bladder began to ache and that ache turned into severe pain.  Nights were spent curled up next to the claw foot tub to awaken every twenty minutes to use the toilet.  Food and wine, once a gastronomic indulgence to the end of a long week, became intolerable to the woman.  Pain now throbbed in her most intimate of places.  The man and the woman would never be the same for into their cabin and their lives and their love, a monster named Interstitial Cystitis had clawed its way into their midst.  The monster demanded attention and irrevocably changed their lives, their relationship, their world.

Six years later and the monster of IC, its claws released their hold on my bladder and my intimate regions, but I find my heart constantly looking and listening for the sensations of the monster to wreck havoc in our lives once again.  With every occasional bladder infection the panic clutches my throat: Is this really IC?  Is the remission over?

My IC is in remission.  It took five very hard and dedicated years using a multitude of doctors, IC diets, herbs and blood work.  The list goes on an on.  The monster that I fight alongside the ghost of the IC monster is one of legitimacy within the world of IC.  Sadly, in our society it seems that if you claim to be healed or in remission that your experience, and therefore your words about IC, are not as potent as someone in the deep throes of IC.  For every second of every day living with the pain and symptoms of IC that I cried, urinated often, and bitterly ate ten "ok for IC patients" foods, I longed to find someone who had made it to the other side, if only to speak to the person and to hear that remission is possible. 

What happened in our society that the scales are imbalanced that we call (and justly) cancer patients 'survivors' when they overcome vicious cancer, yet when someone with an  incurable disease such as IC is able to work just as hard and their symptoms and pain go into remission, they are not deemed as IC survivors?  I boldly claim that I am an IC survivor.  I research and blog tirelessly for all IC patients and it is my heart's truest desire that each of you reach remission.  So allow me to be one of the first to declare that when you go into IC remission you can call yourself an IC Survivor! (Although, as I reread this I think that I was wrong...even someone enduring the day by day pain and struggle of IC
Jane
5/7/2011 02:57:51 am

What worked for you that you are now in remission?

Belva
5/7/2011 10:06:56 am

I have had IC for a long time. I have
recently started taking Lyrica. My Dr.
sugested I try it and see how it did.
About the first night I took it I slept
most of the night. I have been almost pain free since I started taking it. What a blessing. So nice to
be able to do things that you had a
hard time doing before with all the
pain. It is a neurological pain med.
Hoping that it will help anyone else
that tries it. It sure has me.

BH
5/7/2011 02:41:57 pm

Are you really in remission? How long have you stayed in remission? Do you know what you did to get there? I have had this for almost a year and it is unbearable at times and so hopeless. I feel like I am living a nightmare -I want my life back. I am also 2x cancer survivor so this just seems unfair to have beaten cancer only to get this. I am craving orange juice, a salad, lemonade. The list of what I can't eat is so long. And the pain is unreal. So glad to know that I may recover after all because everything I read is so hopeless...and my doctors have not given me anything for the pain. I am on antibiotics for nearly 12 months but why won't they give me vicodin or something to kill the pain?


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