Tuesday, November 19, 2013


Elizabeth, who was recently an IC Hero and got The Doctors TV show to have her on the show and cover IC, posted some thoughts on her Mommyland FB page from earlier this year about the struggle of living in pain and often the despair and loneliness that comes along with it. This inspired me to write about my feelings on this as well. 

When I was first diagnosed I had no idea where I would end up or how bad things would get. I Blogged about this recently (here's a link if you wish to read the Blog post):

Slowly, as my condition worsened, I found myself struggling as Elizabeth and others talk about. Spending all my time researching, looking for answers, going to doctors, trying treatments. Crying, because as time went on, I couldn't believe this was to be my life. I cried in my IC doctor's office so many times I lost count but he has never lost his patience! Everything or every setback was a catastrophe; there was nothing positive. I was obsessed with keeping my voiding diaries; obsessed with every little symptom and tracking every single thing every single day. Every good day, if there was one, I reacted in an overly positive way. Every setback, and there were many, was the end of the world. The constant emotional ups and downs were taking their toll. I was depressed, as many IC patients find themselves as they begin to fight this battle, and felt like I was stuck in this hole I couldn’t get out of. 

Yet one thing that was always lurking inside me, that I couldn't find on my own, but somehow knew was there, was that I didn't want to feel like this. I wanted out of this hole. I didn't want to be that person that could do nothing but talk about my IC and how crappy I felt. I didn't want to be the person that thought someone telling me I looked good was an insult (do I really want someone telling me I look as crappy as I feel?). But how to change this obsessed, depressed path I was on and get out of this hole? 

Well, the it took several things all coming together at the same time and one stroke of good luck to change things for me. I knew deep inside that I didn’t want to be this way, but didn't know how to dig myself out of the hole I found myself in. Until that fateful day that I was sitting in the exam room at my urogynecologist's office and I saw a new flyer taped to the wall. Someone was starting an IC Support Group. Now, I've never been the type to join things like this. I was always shy and not good at contacting people I didn't know, but this flyer reached a place inside me and struck a chord. I asked the nurse about it. She told me it was another patient of my doctor's; that she had IC and wanted to start a Support Group. She offered me a flyer to take with me and it changed my life forever! This was so out of character for me, but this is what being stuck in the hole will do; if you think someone can show you the way out, you'll reach up and take their hand. I called her and left a message. She called me back very soon and I discovered I was the very first person to call her. She invited me to have lunch and I agreed. We hit it off immediately and I was able to talk comfortably with someone I had never met before about my struggles with IC. She was so kind, warm, caring and we shared this thing in common. Would I help her get the Support Group started? To my surprise, I said yes. Now let's be clear; she did the "heavy lifting" of getting our group off the ground, but I worked with her going out to doctor's offices and asking if we could put our flyers in offices. Slowly she began to get more and more people contacting her and we began having meetings every month. This was one of my light bulb, "ah ha" moments. I discovered I had become a very educated patient who could help others and walked out of every single Support Group meeting feeling better than when I arrived. 

Around the same time, my IC doctor had suggested that I also consider seeing a psychologist to help me learn to cope with how to "live" with having a chronic disease. He gave me a referral. Again, I thought silently: "Who me? I need therapy?" That momentary feeling of, not me, I don't need professional counseling. But again, there I was in that hole and now there was another set of hands reaching down to show me the way out. I walked across the hall and made my first appointment to begin counseling with this wonderful psychologist. She works only with patients suffering from chronic illness/disease/pain, so it was a perfect fit. I felt comfortable immediately and free to talk about anything with her. This was also a light bulb "ah ha" moment. And this has changed my life forever as well.

Through my Support Group Leader I became actively involved with our Support Group, and then the ICA as a Patient Advocate. I learned I had something to offer people and that was so positive. I didn't have to be trapped down in that hole and maybe, just maybe, I could offer help, support and encouragement to others and reach down and help someone else out of the hole, or at least give them directions, so to speak.

Working with my therapist, I realized there were so many positive things I was doing that I wasn't giving myself credit for. That I was much stronger than I thought. That I was proactive and an excellent problem solver. I didn't sit around and wait for things to happen, I was making changes, taking an active part in my own care, and taking some control back. 

There is always a way to learn to cope. We don't have to be stuck in that hole. No, we can't do anything about getting IC. But we CAN do something about how we deal with it. It's not something one fixes overnight, but finding out I suffer from very normal and understandable anxiety and mild depression was eye opening. But that's partly because I refused to stay in that hole. I could have sunk into the depression that some do; it's an easy thing to do when dealing with the pain and illness we do.

But I could visualize another path. And with some very helpful hands, every step I have taken out of that hole has been a step in the right direction. It is positive and it helps me cope. Do I have my moments? Of course I do. 

But a few key things I learned through this process for me were: 

- I got myself off that lab rat wheel, as my doctor calls it. With his encouragement and support, I stopped obsessing over my voiding diaries and other symptoms. I no longer keep track of my voids ALL THE TIME. After 12 years, I know where I am and can tell when things get worse. I also learned I was capable of changing how I respond to living with chronic pain. Every setback isn’t a catastrophe or the end of the world. I learned to stop catastrophizing and learned coping skills to deal with setbacks and challenges. It doesn't take the pain away completely of course, but learning coping techniques can and do make a difference. I work on this. If I have a setback, I talk about it in therapy.

- Learning not to be embarrassed about IC and how to talk about it with others was a big step out of the hole. Being able to explain it to family, friends, coworkers was important to me. Learning how to do this without self-pity was important. Those that truly care about me have supported me and took a sincere interest. Others that weren’t have fallen away. But that’s the other thing I learned. This will happen. Learning to LET IT GO has been an important part of learning how to cope with chronic illness. 

- A big deal for me was when I realized I needed to stop wasting energy on WHY I have IC. We don’t know and probably won’t know in MY lifetime. I don’t care. I can’t change it, so that’s negative energy I don’t want to waste. I choose instead to focus on what I CAN do and do not spend time on what I can’t change. 

- Finding my voice among the IC Facebook community helped me as well. All of you were another hand reaching down into that hole to help me out. It also gave me the chance to try to do the same for others. With the encouragement of family, I began this Blog. This has had a real positive impact on my life with IC. Becoming a real patient advocate; using Social Media to try to raise IC Awareness - these activities changed my life and how I feel about living with IC. I consider myself a true “Activist” and I like that.

- Becoming a dues paying, card carrying, active and involved supporter of the Interstitial Cystitis Association (ICA) is something I feel strongly about. Working on fundraising for the ICA over the last three years I have raised over $3,000 that has gone directly to IC research and none of what I have done is complicated, hard to do or takes a lot of time. Anyone can do what I’ve done. But for me, this has been and continues to be something I am passionate about. This gives me something positive on which to focus my energy. 

- And finally, my Support Group Leader! WOW! How to even express how I feel about her. This is a woman who inspires me every single day and has been so supportive, encouraged me to do what I never thought I could, and has become a friend that I will be so glad I made along this journey. I owe her more than I can say! She is a true IC Advocate and Hero and others may not know it but she has done so much for everyone with IC, we all owe her a debt of gratitude. She certainly has mine and then some!

There IS a way out of the hole; you just need to reach out and grasp the hands of those willing to help you find the way out. They are there if you look. I had to look for those hands, but I found them, some found me and together they have given me a way out of that deep, dark hole. 

So here’s a little tale that I think speaks to my philosophy about learning to cope and live with IC and anything else we all have.

“This guy's walking down the street when he falls in a hole. The walls are so steep he can't get out.  A doctor passes by and the guy shouts up, 'Hey you. Can you help me out?' The doctor writes a prescription, throws it down in the hole and moves on. 

Then a priest comes along and the guy shouts up, 'Father, I'm down in this hole, can you help me out?' The priest writes out a prayer, throws it down in the hole and moves on. Then a friend walks by, 'Hey, Joe, it's me can you help me out?' And the friend jumps in the hole. Our guy says, 'Are you stupid? Now we're both down here.' The friend says, 'Yeah, but I've been down here before and I know the way out.”

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