Thursday, March 20, 2014

What Does the First Day of Spring Have to Do with Interstitial Cystitis?

Hope, Health, and Healing
Today is the first day of spring after the coldest and snowiest winter that most of us can remember. There is still a LOT of snow on the ground here in Michigan, but it was raining and not snowing yesterday, and the winds of spring are blowing as I write this.

Actually, I wasn't writing a blog post initially, but was writing a new program for dietitians about the emotional impact of chronic disease, and I thought about my personal philosophy and how HOPE is critical to healing...and then I thought about how hope and spring go together.....and well, you could say that this blog post for YOU is me procrastinating about what I should be doing today. But it isn't. Because it is always about you.

You see, hope has always been central to what I do for interstitial cystitis painful bladder patients. I have been a member of the IC Network's Support Group Forum since I was diagnosed with IC in 1998. The owner, Jill Osborne, has since become a great friend, and I have been a forum "Leader" almost from the beginning. I always say that the people I communicated with over the years really saved my life when I was in the most pain and was discouraged.

It was at the ICN that I learned that HOPE is THE most important component to treating a chronic disease. Once you have hope, you can begin to look for solutions. Once you have hope, you have more energy. Once you have hope, you are opening your mind to the possibility that one day you can get better. Hope isn't magic, but it removes the paralyzing emotions of fear, discouragement, defeat, frustration, and anger.

Of course, hope only works when it is internalized by the patients but others can influence the level of hope within a patient with chronic illness. We have all probably had an encounter with less than compassionate medical providers. We have all probably had conversations with family members and friends where they made it clear that they don't understand what you are going through. We all probably cheer when we see those mini-posters on Facebook that exclaim some version of, "Until you walk a mile in my shoes, don't judge."

But what I want you to focus on today are the people who DO understand. Search out hope where hope is nurtured. Find medical providers who truly love to treat interstitial cystitis patients. Help other patients when they are down and you will find they will reciprocate when you need encouragement. Read hopeful posts from people on ICN and Facebook, and don't feel bad about walking away from chronically negative people. Watch funny movies and read uplifting books.

What do you do to nurture hope? How do you keep going when life throws you curve balls? What do you do to encourage others with chronic illness?



Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder



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Tuesday, March 4, 2014

Interstitial Cystitis and Prescription Pain Medications



Pain Medication Policies
I am becoming increasingly frustrated with the media and legislators who want to put more restrictions on prescription medications. I work with chronic pain patients every day who have very painful bladders often along with other painful conditions, so it strikes me as evil to put more controls on life-saving drugs when I know millions (yes millions) depend on them to have some sense of a normal life. Dependence of this sort is NOT the same as addiction or abuse. Each of those words has its own, distinct medical definition.

I don't believe the answer is to over-regulate the drugs for people who "depend" on them. Imagine already having a chronic illness where you have to go to the doctor several times a year, then asking that same person to go to the doctor every 30 days to renew their prescription. Rather than make life even harder for people who really NEED the medications, let's provide deliberate and consistent education about keeping these drugs locked up if someone is prescribed them and allow for enhanced identification and intervention for those who abuse (usually illegally) or those who are addicted (a physical and mental health condition). This WebMd article is very thoughtful on the topic: http://www.webmd.com/pain-management/features/prescription-painkiller-addiction-7-myths?page=1

Ok, that's my soapbox for the day. What are your thoughts?


Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

Diet Is One of the First Line Treatments for IC/BPS

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators