There is this quote that floats around the Internet and it shows up in my Facebook feed periodically, and recently it has popped up a lot in my head.  "You either get bitter or you get better...."    Well to quote some wisdom from my father "good luck with that."

These two things are not mutually exclusive.   There are days that I feel bitter, there are days that I feel frustrated, angry, sad and all of those "dark" feelings.   Typically those are the days that I want to hide in a blanket fort and make sure I don't interact with anyone.   Those are the moments when I am terrified that I will burst into tears, or that I will take out my feelings on those that I love the most.  Those are the moments when I probably need someone to help take care of me, to make me laugh, to hold me and those are the moments when I push people away.   

So what is it?  Why is it not acceptable to acknowledge those feelings?  Why is it not acceptable to hold those feelings and to allow myself to be seen?  Why does the mind tell me to remain in the dark?  

I can continue to sit in the dark and ponder those questions that have no real answer or I can find out what happens when I ask someone for a hug. Some days I do stay in the dark, some days I reach out, and some days I lash out and some days I get a hat trick and do all three!   This is when I look for inspiration that speaks to me, instead of haunting me.   I read recently "your pain does not make you unique, what you chose to do with it, makes you unique."   

So I come back to that question.  "What do I want?"   Right now, I want to feel safe, accepted, and be able to relax.  I can identify the places where I feel safe to allow those feelings to pass, the people that I feel safe with and the people that are patient enough to listen.   Because there are people that get it, there are people that don't see light and dark, that simply see someone that feels.   

I have had the privilege of talking to a number of different people that have been diagnosed with IC, or other chronic diseases.   I have had the pleasure of listening to their stories and their suggestions about what helped them, and their continuous search for things that enable them to live the best life possible.   I asked one of these people "how do you travel?"   She said simply "I don't."   Those words kept echoing inside me, they kept haunting me.    

Because I keep asking myself "how do I travel?"   How do honor the limits of my body and also honor the desires of my heart to go back to see friends and places that awakened parts of me?  How do I honor the desire to continue to find things that speak to me?   This is when the gremlins come out and tell me to "give up, your life is over."   This is when my mind ignores the people that are telling me that I am making progress, that they can see a difference.   That every case of IC is different, and everybody is different that it is great to listen and share stories with people but their story is not my story.  

So Adam and I will head to the mountains.  I will bring with me my tool kit of herbs, medications, physical therapy techniques, relaxation techniques and do the best I can with my diet.  Adam will be there to hold my hand and to continue to encourage me.  Out of all the people in my life he has seen me at my worst and has continued to support me, to be patient with me and to push me.  There are no words that can convey my gratitude and love to him and for him.

The only way to find out how to live my life with IC, is to live it and continue to find out what works and what doesn't.  To embrace the feelings, the hurt and to understand that this too shall pass.

Question of the day:  What do you want right now?  What is one action you can take towards that, instead of simply imagining what it would be like to have it?


  1. Lenore, I'm wondering if you could recommend any IC groups. I'm newly diagnosed and am looking for support and advice and found you through The Mighty. I'm scared and frustrated and in pain constantly and I really need to know what might be working for others with this dreadful illness because my doc sure didn't have much useful info for me. If you could recommend anywhere that might help I'd sure be very grateful.

  2. Sandy,

    Thank you so much for reaching out. I understand the pain and frustration of the disease, I can only imagine it is more difficult having a doctor with sparse resources. I am extremely lucky that I found a doctor that not only believed me but listened to the way I wanted to approach this healing. I will be honest I went to several doctors, to be sure I had one that I could work with. You are worth advocating for yourself and learning as much as possible.

    I have found the is a very helpful website. I don't post on their forums, but I often search them and read them. It is really helpful for me to know I am not alone, and to find other people that are as food sensitive as I am. There are some good recipe ideas on there as well.

    Also I found the book, The Better Bladder Book: A Holistic Approach to Healing Interstitial Cystitis and Chronic Pelvic Pain, had some good information. Also it helped give me some hope. I use a combination of bladder instillations, herbs and diet and that has really helped me.

    This is your journey and even though it might be feel like you are alone, there are so many of us here with you. Keep gathering information, and reaching out for support. I am always happy to hear about your experience and see what we can learn from each other.

    Good luck on your healing and Journey! I am always here, Sandy.


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