IC Free Now: March 2009

Hormone Replacement Treatment

I went to see a urogynecologist recommended on the Interstitial Cystitis Network website, Dr. Allan Klapper, the Chief of Gynecology and Obstetrics at New York Downtown Hospital. I wanted to see what he would recommend for my bladder symptoms. I was very afraid that he would examine my bladder visually by way of the urethra, but he didn't. He did a manual examination vaginally, and confirmed my report that my bladder was sensitive.

He prescribed Estrace, 1mg every other day taken vaginally. The idea seems to be that the estrogen will cause a reduction in bladder sensitivity. Since my symptoms began with perimenopause, I feel hopeful. I have been taking the Estrace for about two weeks now. So far, I have not noticed a reduction in symptoms, but he said that it would take a month. I will keep you posted!

Recipe for Granola

This recipe came from the back of a package for Let's Do...Organic Unsweetened Organic Coconut Flakes. Thanks! Let's Do!

Serving Size: About 8

3C Rolled oats

1/4C Whole wheat flour

3/4C Coconut Flakes (without preservatives)

3/4C Sliced or chopped almonds

1/2t Cinnamon

1/2C Maple syrup (always choose 100% pure)

1/3C Safflower oil (We used Canola and it was fine)

1t Vanilla

Preheat oven to 300.

Mix oats, flour, coconut, almonds, and cinnamon in a medium sized bowl. In a small bowl, mix maple syrup, oil and vanilla. In three steps pour the liquids over the dry ingredients and mix until well combined.

Pour onto a greased baking sheet and spread to cover evenly. Bake for 30 minutes, stir, and bake another 20 to 30 minutes (we did 20) depending on preferred doneness.

Store in an airtight container. Refrigerate or freeze to extend freshness.

Recipe for Bread Maker Herb Bread

When my "healthy" bread started sweetening with raisin juice and adding ascorbic acid, it was all over between us. I had to take control, and so I bought a Panasonic bread maker. This recipe came with the machine.

This recipe makes a "Medium" or 1 pound loaf.

3 C Bread flour

1 1/2t Salt

1 1/2T Dry milk

1 1/2T Butter

2T Dry parsley

1T Caraway seeds

1T Dill weed

1 1/8C Water

1 tsp Active dry yeast

Place the ingredients in the pan in the order presented except the yeast. Place the yeast in the dispenser on top of the machine.

Bake on Basic with Medium crust and choose the smallest size loaf. Press "Start."

Always Believe Your Body, and Always Read Labels: The String Cheese Incident

Nothing against the Interstitial Cystitis Network! They are the hardest working, biggest hearted, wisest people in the world. So, they are the only ones out there with whom to have a conversation and bounce ideas off of, so please take that into consideration as you read on about the String Cheese Incident.

Having been fed string cheese by Sister 1, and having read in the ICN diet that string cheeses can actually soothe a troubled bladder I felt no reservations about picking up some string cheese at my local grocery store. Unfortunately, not long after eating some I felt not only physical pain, but also the psychological pain that sounds like "oh my God, nothing is safe, the rules are constantly changing, nothing works." I have a hunch you might be familiar with that fear.

It took a while for my rational mind to take charge. Well, I thought to myself, I suppose I should compare the label of my hurtful Polly-O string cheese to the Borden string cheese Sister 1 actually fed me. Aha! A-freaking-ha!! The offending string cheese lists vinegar as an ingredient, and the okie-dokie string cheese does not. And that is why I want to say to you ALWAYS BELIEVE YOUR BODY, and ALWAYS READ LABELS. Love, Sister 2

Mission Statement

Dear Courageous Spirit,
Our mission is to end the pain of Interstitial Cystitis for every person who is afflicted with this disease.

The IC Sisters joined together to reduce our pain, to cope with our disease, and to increase our hope of living pain free. Our hearts reach out to every individual who is suffering as we have suffered. We want your pain to stop, too. We will share what we have learned in our 28 years of collective experience with IC. And we will provide a supportive environment while you discover what works for you.

Love, The IC Sisters

Meet the IC Sisters

Sister 1

I have been suffering with Interstitial Cystitis symptoms for about 22 years. I am currently 44 years old. In the eighties when my symptoms first started emerging I spent years seeing specialists, having tests done, being humiliated in a variety of medical settings and usually leaving the office in more pain than I was in when I came in. You might know some of these tests. Looking inside the bladder is a personal non-favorite. It seems I also remember being x-rayed while peeing into a bucket in a room full of technicians and interns. After five or so years with no answers, no diagnosis and no relief, I gave up. About 12 years later, I tried again and finally got my diagnosis. At this time, the options for treatment were dmso and Elmiron, I have done neither. I did, however, learn about the benefits of an acid-free diet, and I finally had a word to use in the world to amass more information. I am not pain free. I am not close to pain free. I have not had a remission in 15 years. I am, however, more in control of how I feel, and I am learning every day. The things I have learned have kept me sane and hopeful and I want to share them.

Sister 2

My interstitial cystitis symptoms began with peri-menopause. Even though I had a sister with IC, it took years(!) to figure out what was happening. I went to my primary care physician twice, certain that I had a urinary tract infection, but my urine samples came back normal. Then I went complaining of pelvic floor pain, but nothing was discovered to be wrong. What the hell?! Finally, I realized I had the same problem as my sister, and she was able to help me manage my symptoms. She helped me modify my diet so I experienced less pain. She also helped me alkalize my body and reduce sugar in my diet that could contribute to yeast build up in many of the body's systems.

Sister 1 has been an amazing resource for coping with this painful disease, and I know she can help you, too. Also, if you don't have your own Sister 1, I would suggest joining a support group, or starting one. Let's join together and rid the world of this painful disease!

How to Read Our Recipes

Since controlling our diets depends on knowing what the heck we are eating, you will find a lot of "back to basics" ideas among our recipes. What the heck is in microwave popcorn? What the heck is in a spice pack? What the heck is that list of chemicals as long as my arm on my bread bag? Most of it will hurt us. Here are the recipes we have tried that have put us back on the road to feeling normal.

Ingredients that appear in pink are "bladder soothing." Ingredients that appear in green are "bladder safe." Ingredients that appear in orange are "bladder safe for most," and should be considered "maybes." These designations come from the 2009 IC/PBS Food List published by The Interstitial Cystitis Network.