Tuesday, November 18, 2014

How Others Can Help People with Chronic Illness During the Holidays

Helpful Advice

Thank you www.robot-hugs.com for the meme!!!
(Just so you know, this was written as a stream of thought on Facebook. I am leaving it as I wrote it....sometimes rants like this deserve their original context! Please add ideas in the comments!)

Although I am better now, I have been there for most of this. All of this has been said to me (and I know others thought it.) I know it isn't fun to have family members or friends who have chronic illness, but it can be very, VERY lonely. Trust me, the person in any one of those cartoon frames wishes that they could jump out of bed every morning, hold a "real" job, run with their kids and grandkids, and plan fantabulous social gatherings.

Let's make this a judgment free holiday season. Instead of avoiding the "negative" people in your life, ask if they would like to go shopping together or have a present wrapping day. Bring some Christmas cookies to someone and help them decorate their tree. Make it FUN, not a chore. If they want to hold a holiday party help them out.


Sometimes a person with chronic pain or illness is more comfortable in their own home, but they don't have the energy to put together the food. Can you imagine? So everyone goes someplace else for the fun and leaves the sick person behind (because they said it was ok....NO, it is not ok, but they don't feel like they have a choice.)  Don't be afraid to just "do" things for them. Trust me, they feel bad enough, especially if they used to have the perfect parties and perfect food. If you are in their home and their bathroom looks a little dusty, take a cloth and discretely wipe things down. Unload their dishwasher while they sip a cup of tea.

Sure, ask how they are doing, but make conversations about other things.....tell them what is going on in your church and ask them if they would like to join in. Maybe they didn't make it to church to see the bulletin. Talk about who got a new puppy, or who is expecting a baby. Do a project together.....make a Christmas wreath, help them organize their family pictures...........I could go on and on and on.

We may not have many people who have leprosy these days....modern illness is often invisible. DO you know someone with chronic pain, interstitial cystitis, fibromyalgia, migraines, heart disease, arthritis, depression, anxiety, etc? I know you do. Because everyone does. The Blessed Mother Teresa said, “Not all of us can do great things. But we can do small things with great love.” And Nike said, "Just Do It."

For more on holidays, depression, and chronic illness like interstitial cystitis see:






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

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 Just Tell Me What to Eat!

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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Monday, November 10, 2014

Stricter Regulations on Pain Medications? How Interstitial Cystitis Patients Can Help!

Pain Medications
As a person with interstitial cystitis and other chronic pain, I am just as furious as you at the more restrictive laws regarding pain medications. But, part of the problem is the unguarded "supply" of these drugs in communities around the world that are available for misuse and abuse. In a way, you can't blame the lawmakers. It's their job is to protect the public and what do they see reported over and over? The fact that an estimated 2.1 million people in the United States reportedly are abusing prescription pain relievers.

In a recent Facebook discussion about chronic pain (not just bladder pain), someone asked if the other members had people asking (or stealing) their narcotics. Within 20 minutes there were over 80 responses and all but a couple said YES. Some had even put their own children in jail for stealing from them. Many others divorced their spouses or broke up with their significant others. I was shocked (and obviously naive) because I have never experienced this.

So what can WE do to help?
  • First, don't tell anyone you have prescription medications in your possession. Lie if you have to. (Yep, I just said "lie!") If someone asks you directly for medications, look them in the eye and tell them that the medications you take are finely tuned by your physician and you are very careful about how you take them. I can't tell you what to do after that, but I suggest that consider your relationship with that person carefully.
  • Second: LOCK them up! No exceptions. Some of the respondents to that Facebook query said that they never would have suspected the people who stole their medications. Be especially vigilant if you have housekeepers, contractors, realtors, etc. visiting your home. 
  • Third: Dispose of them properly if you don't need them any more.  Don't just flush them into the sewer or your septic tank. When I cleaned out my medications awhile back, I found out the only option in Michigan was to take them to the police station. Two policemen literally logged every bottle and counted every pill in front of me. I had to sign and "witness" them entering these numbers into a book. I didn't ask, but I assume the drugs were incinerated someplace.
So there you have it. Both sides of the story. Or two of them. I am sure there is more. At the very least I hope these suggestions help those of you who desperately need these medications to have a decent quality of life. It remains to be seen whether addictions and abuse of these medications decrease without hurting the people who need them.

PS: I looked for a good summary of the new guidelines for pain medications. There were very few intelligent commentaries, but this one came close: Consumer Reports: Vicodin and other prescription painkillers will soon be harder to get.

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Remember, as you are doing your shopping on Amazon this holiday season, please use my Amazon links. You don't have to purchase the product it links to. Once you get to Amazon, you can browse and Amazon will remember you entered the store through Confident Choices. I truly appreciate my Amazon shoppers! This is a simple way to help pay for the CC website, blog, newsletter, and social media time! http://tinyurl.com/ICRDBook


Author, Speaker, Patient Advocate

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 Just Tell Me What to Eat!

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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Thursday, September 18, 2014

Can the Flu Shot Give You the Flu? Who Should Get the Flu Shot?

The Flu I.Q. widget is an interactive quiz to test your flu knowledge.
Click the picture above to test your flu IQ!
I am on my way to get my flu shot today...and the shingles shot, if you must know...and I wanted to remind you that if you have interstitial cystitis, a chronic illness, it is important for you to get the flu shot. I also have a heart condition, so it is even more important for me. 

Did you know you can't actually "get" the flu from the flu shot? If you experience some sniffles, low fever, or slight cough, that is actually your body working WITH the shot to rev up your immune system to protect you from something much much worse!

About 15 years ago, our family got the flu right at Christmas time. My middle daughter was the only one who got a flu shot as part of a well-child visit to the pediatrician (her birthday is in December!). One by one, starting with my husband and I, we both got very sick. The cough was unlike what I had ever experienced before and I finally had some idea what the word "delirious" meant. After using the toilet--interstitial cystitis doesn't take a break when the body is sick with something else--I woke up on the floor of the bathroom, evidently having passed out. My husband couldn't even get out of bed to help me, so I crawled back to our bedroom and put myself back to bed. Our oldest and youngest got sick as well. It took us three days to finish opening Christmas gifts because we kept stopping to rest. Our pictures from that holiday are pathetic. Pale and blotchy faces with dark rimmed eyes.

Ever since that year I have gotten my flu shot. I even stood in line for the H1N1 shot a couple of years ago; although now, H1N1 is included in the seasonal shot. I don't ever want to feel that sick again. I felt like I lost a month of my life.

But it isn't just ruined holidays and missed days of work. Every year nearly 38,000 people die from the flu. That doesn't take into consideration the People with chronic illness are at more risk for death from the flu than generally healthy people. Get your flu shot today, my friends!

For more information about the flu, the flu shot, and the most recent innovation, the flu mist, visit: http://www.cdc.gov/flu/protect/keyfacts.htm


Author, Speaker, Patient Advocate

Helping Yourself, Take Control!

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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Friday, September 5, 2014

What Is Your Interstitial Cystitis "New Normal?"

Thumbs up! Live Your Life!
Have you heard the phrase "new normal" which describes how a person  experiences life after diagnosis and treatment for an illness or chronic condition? It started to be used decades ago among cancer survivors, and many times people with conditions like interstitial cystitis/bladder pain syndrome use it as well.

Simply put, "new normal" implies that you may never go back to the body or even mental state that you were in before you were diagnosed with interstitial cystitis, but you have reached a point in treatment where you feel better and have even developed coping skills that make navigating your painful bladder easier and maybe even automatic. 

For example, I am MUCH better than when I was first diagnosed with IC! I now look at the couple of years before and after my diagnosis as one long bladder flare where I had to learn to listen to my own body and not ignore what was happening. 

Obviously the IC diet is important, but I don't have to watch what I eat as much as I used to.  I still have several things I definitely cannot touch: Soy, cranberry juice (but I can have a few dried cranberries on a salad), strawberries, very spicy foods (although I can have a pinch of spice in something like guacamole), alcohol, any tea other than chamomile and mint (never did drink coffee), and "too many" tomatoes or citrus. I am at a point where I can have one "bad" thing a day and do well. I am always on the hunt for new recipes and food isn't the frightening thing it was 15 years ago.

If I start to feel some bladder twinges or increase in frequency above my "new normal," I go back to a strict IC diet, which for me involves a lot of water, eggs, toast, cottage cheese, and vegetables. I have learned that I need to get plenty of sleep. I watch my stress level  and have coping strategies for that also. I take Epsom salts baths when I need them (or just when I want them!), and I don't apologize for the medications I need to take occasionally because they improve my quality of life, something I lost for a few years! (There is a chapter on how to handle flares in Customizing the Interstitial Cystitis Diet: A Confident Choices® Book)

I still void more often than someone without IC/BPS (mostly in the morning), and my body reminds me about once a week what the feeling of urgency really is, but since I truly don't have pain anymore, I can live with those things and even manage them with a few tricks I have learned over the years, but the most important thing is that I don't fixate on them. That is my "new normal." 

How about you? What is your "new normal" with interstitial cystitis? Let's help the newly diagnosed among us learn some ways to enjoy their lives again!

Sending you all warm, end of summer hugs!

PS: Thank you Confident Choices® shoppers!  It seems you are getting the hang of clicking on the Confident Choices Amazon links to make your everyday purchases work for our cause.  As you can see below, each purchase may only generate a tiny amount, but added together it makes a difference:

Here are some recent and (fun!) purchases by our readers that helped raise $75.00 last month:

Timex Women's T21693Elevated Classics Dress Burgundy Leather Strap Watch
The Proactive Patient: Managing Interstitial Cystitis/Bladder Pain Syndrome and the Related Conditions
The Most Amazing Black Dress with Lots of Gold Sequins Made to Fit the Barbie Barbie Sized Doll
Genuine Elegante Adjustable Oxidized .925 Sterling Silver Spoon Ring with Swirl Motif



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

http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 Freshen Up Your Meal Plans!

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 


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Monday, August 25, 2014

Three Thoughts About How Food Affects an Interstitial Cystitis Bladder

People ask me if food can "cause" IC or if it can "hurt" an IC bladder. If I wanted to keep this post short, I could just say, "We don't know." But, I know you expect more from me than that. So here are some random thoughts from me on that perplexing and complicated issue.

Thought One: I think one of the problems is that when people with interstitial cystitis are feeling better, they really don't want researchers or physicians to poke around in their bladder just to see what it looks like. I know I honestly don't want to risk going "back" there. So, how do we determine if eliminating certain foods and drinks is actually helping heal a painful bladder, or if it is simply a comfort measure that helps control the symptoms? Does knowing the "why" matter if you feel better when you modify your diet?

Thought Two: I can eat a lot more foods now, and IC isn't the horrible monster that it was in the years right before and after I was diagnosed. I personally have the sense that my body has "healed," even though the doctors avoid using that term. On the other hand, If someone has interstitial cystitis, they are probably always going to be predisposed to bladder pain just like others get arthritis, stomach aches, or migraines. We see this everyday in people who were in remission one day and in a wicked flare the next. So, I prefer to say an IC bladder can "heal" but you are not "cured" since people with IC/PBS still have a vulnerable bladder.

Thought Three: As for how food and the body is reacting when you have IC, we truly don't know what the role is, and it is probably different for each type of food (and each person and each type of IC if we are honest!) We DO know from research and from listening to IC patients that if a person eats or drinks something like coffee, that their symptoms of a "flare" might only last for 24 hours, or they may last for three weeks or longer. So the question is still there: What is the mechanism that causes pain and symptoms for several weeks after you drink that cup of coffee? There is obviously an effect...likely inflammation. Would medications like Elmiron work better if you were not constantly inflaming your bladder with coffee, tea, soda, etc? Do we need to start investigation different IC diets for different sub-types of painful bladder syndrome? Again, no answers, but maybe all of these thoughts will help you as you sort out trigger foods for yourself.

The bottom line is you are still better to avoid these foods even if you are trying medications, physical therapy, and instillations that are meant to help. Stop looking for excuses to "indulge" in that cup of coffee or diet soda. Make one small change at a time and "indulge" in the investment of the best health you can give yourself!

Author, Speaker, Patient Advocate

Don't Wait Another Day. Take Control of Your IC Symptoms!

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




Wednesday, August 13, 2014

Depression, Suicide, and Interstitial Cystitis

Robin Williams
If the death of Robin Williams teaches us anything, it is that depression can be insidious. It can simmer under the surface of a perfectly "happy" facade. It can be obscured by the veil of a busy, productive person's schedule. It is more than a blue day now and then. The darkness can be unimaginable to people who have never been there. When it strikes, there seems that nothing in the world can pull a person out of the depths. Physical pain can cause depression. Depression can cause physical pain. Addiction can cause depression. Depression can lead to addiction. Often we get mired in the chicken and egg discussion when what we need to do is just help the person.

If you are in suicide or depression crisis, please call: 1-800-273-TALK (8255). Don't wait. Call. Call for yourself. Call for someone else. Save a life.

You also might be interested in:

Interstitial Cystitis: Take Action to Defeat Depression
Interstitial Cystitis: Emotional Impact of Chronic Illness
Interstitial Cystitis Network: Understanding Depression


Author, Speaker, Patient Advocate

You CAN Take Control of Your Painful Bladder!

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, July 15, 2014

Interstitial Cystitis Help: Ten Simple Things You Can Do Now to Feel Better!

I meet so many people with IC that waste their precious time and energy frantically trying all sorts of crazy things to get rid of their symptoms. Sure it is tempting to try every new diet idea out there. Who doesn't want to believe that a vegetable and fruit shake can cure their painful bladder disease? And it is much easier to take a handful of supplements rather than carefully choose your foods. The problem is when a person is trying all of these shady ideas, they could be feeling better sooner if they just concentrated on the things we KNOW can help:
  1. Write everything down. And I mean everything...keep track of your food intake, your symptoms, your activities, when you take your medications, if you are under stress, what seems to help, and what seems to hurt. Put numbers to everything you can; include portion sizes, times of voids, volume of voids, etc. Writing down what you experience is one of the most powerful tools you can use to get a handle on your symptoms. You can even take these diaries to your doctor to get help decoding patterns. For sample food and symptom diaries check out my website. For more information on how writing things down can help you, read Keeping an Interstitial Cystitis Diet and Symptom Diary.
  2. Choose your foods from the IC Food List, Bladder Friendly column. I know it is tempting to rationalize that you are "special" and can eat foods others can't; but, I see it all the time. Someone is convinced that coffee (soda, tomatoes, alcohol, soy, etc…) doesn't bother her interstitial cystitis bladder, but then she complains that she is in pain all night. Don't eat foods that you know bother your bladder. Just don't do it. In fact, if you are writing down your food/beverage intake and symptoms, you will not be able to ignore the connection.
  3. Drink plenty of water. You may need to experiment with types of water, but honestly, the best is tap water that isn't high in chlorine. Most IC patients do well with filtered water they keep in the refrigerator. (Try a Brita filter pitcher.) When traveling, keep a mental list of brands that you know you can and cannot drink. (I cannot drink Dasani, but I do well with Evian or Figi water and can pretty much find those anywhere.) Timing your water intake can be important as well. One trick that I found works for me is to drink a full glass of water about an hour before I go to bed. This seems to dilute the urine. I might get up in an hour or two to use the bathroom, but after that, I can stay asleep all night. Some people find it easier to sip on water all day long.
  4. Get plenty of sleep. I know, I know…how can you get a good night's sleep if you are up and down all night long? Well, my answer is simply, "Do your best." Practice good bedtime habits. Get into a routine of stretching, taking deep breaths, turning off the electronics, using a white noise app on your phone, etc. Give yourself permission to rest during the day if you need to. Avoid over the counter sleep medications; rather, ask your doctor about drugs that might help. Some commonly used medications for IC include amitriptyline and hydroxyzine HCL which can also help patients sleep better. Read Are You Sick and Tired of Being Sick and Tired? for more ideas.
  5. Practice stress management. The mind-body connection is not hocus-pocus. It is real. (I love Candace Pert's book, Everything You Need to Know to Feel Go(o)d!) Your body reacts to stress by flooding your system with chemicals that can eat away at your bladder and cause interstitial cystitis flares. No, we can't avoid stress entirely, but you can short circuit the body's response to it. Take three deep breaths, walk around the block, get a massage, ask for a hug, meditate, or pray. It even helps to talk about or write down whatever is bothering you. Many times when we put words to what we are feeling, we realize the situation is not as bad as we thought. For more information see "Can Stress Affect Your Bladder?"
  6. Take an Epsom salts bath. Many IC patients have spent years thinking they were having repeated urinary tract infections, so this suggestion is not easy for them. But baths can be helpful and healing for someone with interstitial cystitis. Use warm, not hot water. Add about a cup of Epsom salts to the water. Don't put anything else in the water other than a few drops of essential oils (try chamomile or lavender). BTW: Epsom salts are not the same as table salt. The magnesium and sulfates are released in the water and absorbed though the skin. It can even be soothing on tender vulva or scrotal tissues.
  7. Learn the fine art of minimizing what you miss, focusing instead on what you can do. I can't have strawberries, but I can eat my favorite, raspberries. I may not be able to ride a bike, but I love taking long walks. (See Staying Active with Interstitial Cystitis.) Working out compromises and "substitutions" for your romantic life can shift the emphasis from "I can't be intimate with my spouse," to "What kind of fun things CAN we do?"
  8. Find other IC patients to talk to. I can remember the exact day that I found the Interstitial Cystitis Network forum. That was also the day I began to heal. After feeling isolated for months, I finally found people who understood. I learned about new treatments and coping strategies that I use to this day. I still post there several times a week answering questions.
  9. Research your condition, but don't get obsessed. A good way to get a taste of what is happening in the world of interstitial cystitis research is to sign up for a newsletter from a reliable organization like ICN or ICA. You can also sign up for Google Alerts with a variety of search terms (I get notices for "interstitial cystitis," "interstitial cystitis diet," "IC Diet," "Julie Beyer," and "painful bladder.") The point is to keep up with the most recent research and treatment possibilities without going overboard sitting at the computer all day and night.
  10. Don't forget you have the rest of your life to live! Yes, it is important to talk to other IC patients and spend time on the computer researching your disease, but be deliberate about maintaining balance. If you are visiting the ICN forums, set a timer for 30 minutes or an hour. When the timer goes off, find something else to do. For every book you read about IC, read two on other topics. For every minute you spend chatting to other IC patients online, find something wonderful to do with your real life friends and family.
What are your must do coping strategies to feel better with IC? Did I miss anything?


Author, Speaker, Patient Advocate


http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20You CAN Feel Better! Just Take It a Step at a Time

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 



Tuesday, April 8, 2014

Helping Spouses and Other Family Members Understand the IC Diet

Working Together to Understand Interstitial Cystitis
One of the most common questions I hear from interstitial cystitis patients is, "How can I explain my dietary restrictions to my family members?" 

I am sure many of you have heard people say things like, "Just have a little coffee, it won't hurt you!" Or, "If you drink cranberry juice, that will cure your bladder infection!" Or even, "You aren't any fun any more because you worry about your food all the time!" Trust me, I live the same life you do and have heard it all. 

Of course, most of the time, our family members have our best interests at heart, but they just don't know as much about the disease as we do. They simply haven't spent as much time as we have researching our disease, including sifting out the good information from the bad we have read on the internet. I don't know about you, but for many people, it can be exhausting trying to explain the IC dietary modifications to people over and over. So how can you bring your loved ones up to speed about the IC diet? Here are some suggestions:
  1. First, set the tone for collaboration instead of conflict. Ask for help. Let your spouse or other family member know you appreciate their concern and that you would like to work together to manage the modifications of your interstitial cystitis diet.
  2. Ask them to learn along with you. Have them follow this blog, "like" the Confident Choices Facebook page, or sign up for my newsletter. You can also send them links to articles you read on ICN or other reputable IC diet websites.
  3. Print off the two page IC Food List for them. Yes, give them their own copy. Let them know which foods are definitely off limits for you and let them know you would appreciate help finding recipes that include the foods you CAN have. Not only are you reinforcing that this is the diet you are working from, but you are hopefully going to collect some great new recipes!
  4. Consider giving someone their own copy of Confident Choices: A Cookbook for IC and Overactive Bladder if they don't live in the same household as you do, but you eat with them often (your best friend, your parents, your siblings). Imagine the relief they will feel having a simple, go-to book for recipes that they can be confident you can eat. 
  5. Allow your spouse or family member to listen in on a phone or video consultation with me. Sometimes when someone hears the information from an expert, it reinforces the concept. It will keep you on the same page. (Just always let me know someone else is there!)
The important thing is that in most cases your family really does want to help you. Remember, the key is collaboration, not conflict! 


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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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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