IC Diet Webinar LIVE Version May 23, 2013 3 PM ET (Noon PT)

Webinars are a great way to learn about things in the comfort of your own home. I have been asked by a group called "Dietitian Central" to present information about interstitial cystitis and diet to nutrition professionals on May 23, 2013 at 3 pm ET.

The excellent part of this is that the company I am working for has agreed to allow IC patients to attend this 2 hour webinar as well. It is a fabulous opportunity to  share this information with all of YOU at a cost that is very reasonable.

In this webinar you will learn:

• What is interstitial cystitis and the history of the disease?
• What are medical conditions that are commonly seen with IC?
• What is the IC Diet and how can you individualize it?
• What are other lifestyle modifications that IC patients can make to help ease their symptoms?
• What nutritional supplements are good and which ones can cause IC patients problems?

Here is a link to a document that will walk you through the registration process:

http://ic-diet.com/Webinar.pdf

In summary, you need to register for the site and buy "credits" enough for a two hour course. It will cost most of you $28.00 to listen to the webinar. After you register, you will receive log in information via email. Remember, this is a program for nutrition professionals for continuing education, but non-medical professionals can register as "general public."

This is an AMAZING opportunity for patients to get some great information about IC and diet. Please please sign up and join us on May 23 at 3 pm ET. (Noon PT)

Link to register: IC Diet Webinar

I am looking forward to "seeing" all of you on Thursday!

PS: If you cannot attend the live event, there will be an opportunity to listen to a recorded version. More on that later!

Interstitial Cystitis: Staying Active

I know it is tempting, my friends, but don't stop living just because you have a chronic illness like interstitial cystitis. Like altering ingredients in a recipe to meet the needs of your IC diet, if there is an activity you love, find a way to it, and if you can't do what you thought you loved, find an activity you can do.

I loved bike riding...loved the breeze in my hair, the speed....loved that my whole body had to be engaged to make that two-wheeled machine work. Then because if pelvic pain, bike riding started to hurt. I was sad. I tried everything to be able to still ride a bike. It took some mental gymnastics..... but now I walk. I told myself I love to walk. And I found that I actually did love to walk! I love to walk in the parks near us, in the mall, at Disney World, at the beach. I am even planning a walking vacation...(more on that later).

The point is, when you are diagnosed with a chronic illness like interstitial cystitis, you need to give yourself the opportunity to grieve what you have to give up, but don't forget that the last step in the stages of grief is "acceptance." And, acceptance doesn't mean you surrender.. Acceptance is the most active of the stages of grief. Acceptance means that you are becoming engaged again with your "new normal." Acceptance means you are living each day as fully as you can.

Unsure what acceptance looks like? Check out this video: It is so joyful........and keep watching to the end....you will be glad you did...Grandma Dorothy Flies Over the Rainbow.

For more information on the Stages of Grief visit: Interstitial Cystitis: Emotional Challenges of Chronic Illness

and Customizing the Interstitial Cystitis Diet: A Confident Choices Book

Clearing the Clutter of Bad IC Diet Information by Spreading GOOD IC Diet Information

Ok, this is me breaking out of my encouraging, positive mode for a second here. I am angry. I am frustrated. I am depressed……I have had enough, and I don’t know what to do. 

I just received an email from an IC patient who had been following a “virgin” diet for the past several months. She had eliminated gluten, dairy, eggs, soy, peanuts, sugar, and corn. She was eating mostly fruits and vegetables, and now she has horrible, horrible bladder pain.  At first, I wanted to SCREAM, “DUH!” But I didn’t….I encouraged her and talked gently...because she was afraid and she thought she was doing the right thing and someone else obviously convinced her to try this…and in the end she DID turn to me and I desperately wanted to help her. 

I get SO frustrated when I hear these stories. I totally believe in patients trusting their intuition and adjusting the IC Diet for their own needs, but where did she get this information? A random internet site? A Facebook or Pinterest group that is promoting unconventional interstitial cystitis diet practices? There is NO reason why this poor woman had to go through this because we have solid research now and excellent patient documentation about the foods that cause flares and those that do not. 

As I write this, I truly want to cry. Her life is precious and sacred and someone is stealing DAYS – WEEKS – MONTHS from her and other patients with their bogus information. 

Trust me, I know why the IC patients do it. I have been there.....experimenting and desperately trying to find out what is wrong with me. Yes, following the IC Diet can be cumbersome, but not as cumbersome as some of the alternate diets I have seen out there. How can we clear the clutter and just get back to basics with the IC Diet?? How many ways can I spread the message? Trust me, I don’t make any money doing this. I don’t work a full time job, I do this. I try to help you. I try to do it in as honest and encouraging way as I possibly can. Yet, when I hear these stories, I sometimes feel like my whole mission is pointless.

But today, I am going to give it another shot. Let me just take a deep breath and try to clarify some things....

First, what is the "IC Diet"? Over the course of several months in 2009, I met with representatives from the Interstitial Cystitis Association and the Interstitial Cystitis Network, and we went through the food list item by item. (See previous blog article: How Did the Standardized IC Diet Come About?) We compared the food to lists from emerging IC diet research and from decades of patient reports. We triple checked it against our personal consultations with painful bladder patients and quadruple checked it against our personal experience as patients ourselves.

Our two primary goals were to provide a liberal list of foods for patients to choose from as well as encourage them to eat. The third outcome was a bonus…the AUA came out the following year with recommendations that included diet modification as one of the first line interventions for newly diagnosed interstitial cystitis patients. What a victory! The doctors were now on our side!

But here’s the thing. The IC Food list isn’t sexy. It isn’t related to any of the fad diets out there. It doesn't involve any green smoothies or purple shakes. But it IS real food that you can eat every day. It is a HEALTHY, NUTRITIOUS diet based not only on science, but on tens of thousands of patients recording their personal findings. Although some IC patients might have additional allergies and foods sensitivities, most can eat the same basic foods. So our message was for people with IC to keep it simple and stay away from all of that other craziness that will just complicate things. Ignore the people who want to take your money. Educate yourself on what we KNOW about the interstitial cystitis diet and what has worked for tens of thousands of other people.

Second, finding good information: The Confident Choices books are not published by a big publishing house, but they provide EXCELLENT information on the interstitial cystitis elimination diet written in a language that most people find easy to understand, helpful, and encouraging. I care deeply about the patients and I hope that shows.

You can pay the same price for whacky interstitial cystitis e-books that tell you a bunch of bogus stuff written by people who don't care at ALL about IC patients.You can even spend your hard earned money on books that are poorly written or are too technical for the average interstitial cystitis patient. The biggest compliment I get on these books is that I gave straightforward and encouraging information. People begged me, “Just tell me what to eat.” So that is what I wrote. It is that simple. Why don’t people see that? The information is out there.

Third, getting additional help: What if you are still confused after reading my books? Or you feel like you really need to talk to someone about the IC Diet who “gets it?” That is normal part of the chronic disease process. It is confusing and crazy and you are exhausted and frustrated. If you want to take it a step further, I can help you streamline the process. 

The prices for these IC Diet consultations are reasonable and about 70% what most dietitians charge. I know insurance doesn’t cover this, so I want to make it affordable for you, the average person. PLUS….Talking one hour with me can save you hundreds of hours of research and thousands of dollars you might waste on other books and products. I can help you minimize your bladder symptoms while you maximize your quality of life. Isn’t that what we all want? 

Finally, spreading the word: Many of you follow me because you have already purchased my books or have had a consultation with me. For that, I thank you. But, now I need a little more help from you. Help me spread QUALITY information about IC Diet on your other Facebook pages. Tell your doctors about the Confident Choices books and my services when you go to your check-ups. Review my books on Amazon. Give people the correct IC Food List link. Tell other patients about my books. Tell them about the IC Diet Facebook page and this blog and my newsletter. Tell them I am here to talk to them when they are the most afraid and in pain. I can help people but they have to know I exist.

The bottom line: Help me combat the bad people who are spreading dangerous information.  I don’t want any more IC patients taken advantage of by those who give them a diet that will steal their life away. If you hear about bad information being spread, speak up or tell me so I can address it.

Now, I need to respond to another email from that patient who wrote to me this morning. Hopefully, I can help her out of this mess. 

Thank You, Dr. Oz, for Interstitial Cystitis Segment!

I was thankful to see that Dr. Oz highlighted interstitial cystitis (IC) on his show that aired February 20, 2013 in a segment titled "Myths and Lies Your Gynecologist Believes." Guest physician Dr. Lauren Streicher discussed a variety of conditions that can often be confusing for patients and physicians alike.    

I have listened to the segment about IC three times now and although brief, Dr. Streicher stated what many of us would have asked her to tell the millions of people in Dr. Oz's national audience: 

Interstitial cystitis is a painful bladder condition that gives people that insistent "gotta go" feeling. It is often confused with urinary tract infections. Most importantly, she repeated that having interstitial cystitis is no way to live, and that it is not a minor problem. She said you must go to a specialist like a uro or uro/gyn or even a pelvic PT who is familiar with IC.  

I have to say, for the few minutes she had to mention it, she did a great job. Although there was not enough time to talk about any treatments, this was still excellent exposure and validity for those IC patients who live with tremendous pain. I actually thought her presentation was confident and compelling. She spent as much, if not more time on interstitial cystitis as she did her other topics of the day.  

For those of you clamoring for more coverage about interstitial cystitis, we have to remember what this segment was about and understand the producers had to stick with that....conditions that are often missed by the gynecologist. Unless someone is doing a documentary on IC, we are not going to ever get a television doctor show to do a full hour on this disease. Remember, they are primarily in the entertainment business. It isn't just because it is a bladder disease; frankly, there are not that many diseases that are entertaining enough to fill an entire hour. We should be thankful that this popular show represented IC in such a compelling way. 

We DO have an opportunity to continue the conversation. Please take a moment to do the following:

1. Thank Dr. Oz, Dr. Streicher, and the producers of the Dr. Oz show on their website where they are showing the video: Myths and Lies Your Gynecologist Believes 

2. Thank Dr. Oz, Dr. Streicher, and the producers (comment and "like") on their facebook page. 

3. Share the video segment with your family and friends.

For those of you interested in seeing IC covered in even small ways like this, here is a link to a blog article I wrote about getting IC recognized by the media: Petitioning TV Doctors and Health Experts to Talk About Interstitial Cystitits

For more information about IC and diet, see:

Customizing the Interstitial Cystitis Diet

Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder

If you are a nurse, dietitian, or other nutrition professional, you can earn continuing education credits for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.

 

Interstitial Cystitis Diet Books: Customizing the Intersitital Cystitis Diet

Recently, I had someone ask me what the differences were in my books for interstitial cystitis and some other IC Diet books, so I thought it would be a good thing to post here.

At http://ic-diet.com/, you will see pictures of my three books about the IC Diet. If someone is just starting the elimination diet, Customizing the Interstitial Cystitis Diet, is probably the best place to start. It walks you through the elimination diet step-by-step including some meal plans, the food list, grocery list, some recipes and additional helpful information about other lifestyle changes you can make to reduce your bladder symptoms.

For those of you who don't know, I am a dietitian who also has interstitial cystitis. (I always say you get smart about stuff you never wanted to be smart about!) I was part of the ICA/ICN team that put together the IC Food List that is most commonly used today. In addition, I have worked with IC patients for 15 years now. I do consultations, but found that I was saying the same thing over and over and over to patients....that is why I wrote the book.

So, with Customizing the Interstitial Cystitis Diet, you get two or three hours of my diet and lifestyle expertise for around $30 instead of $90 an hour which is my fee. In fact, it is obvious I am not in this just to make money because I always tell people to buy the book first because most IC patients don't need my one-on-one help after they read the book. For those who decide they do need more guidance, getting the book first always saves time and money because we start out much further down the educational line. 

As for the other two books: A Cookbook for Interstitial Cystitis and Overactive Bladder is just that--a book full of recipes that also has a small amount of educational material. There are many other IC cookbooks out there that are very good too. But that is okay with me; we all like a lot of cookbooks, right? If I had to differentiate, I would say my IC cookbook is more for the brand new patient who is looking for a bladder safe diet with easy to prepare recipes using everyday foods. It truly falls under the category of "just tell me what to eat!" 


Finally, Interstitial Cystitis: A Guide for Nutrition Professionals, was written as a continuing education vehicle for medical professionals who want to learn more about interstitial cystitis so they can help their patients. Nurses, dietitians, and physical therapists can get eight education credit from Helm Publishing at a very reasonable rate. This book would also be great for an interstitial cystitis patient who want to learn more about the medical research behind the IC diet.


As you probably know, modifying diet helps nearly 90% of IC patients, and having quality tools like these books can make the difference between living in pain and frustration and living a fulfilling life. Following an IC diet may not get rid of all your bladder symptoms, but the vast majority of people with interstitial cystitis experience significant improvement. Keep in mind, diet is something you CAN control. You CAN do it!

Interstitial Cystitis and Traveling (Car Trips)

Many IC patients see my pictures on Facebook and wonder how I can engage in some of the activities I do, in particular, traveling and taking vacations. Certainly, traveling with IC can require some creativity and a healthy dose of problem solving, but it is definitely worth it! 

We only have one life to live and after almost two years doing nothing when I was diagnosed, I made up my mind I was going to live! Some of my first trips were day trips across the state to take my children to camp about four hours from our house. At first I was embarrassed to stop to use the restroom so often during such a short trip, but if I was going to be any sort of mother at all, I knew I needed to develop coping skills. 

Other things that can help you if you need to travel in the car for long distances:

• Use special pelvic seat cushions that you can buy from the Interstitial Cystitis Network. 
• Take a bladder analgesic before you leave on your trip.  Medications like phenazopyridine hydrocholoride (brand names AZO Standard, Pyridium, and other over the counter versions sold at your pharmacy) and Uribel (a combination medication) can help make your ride more comfortable. Note: Always consult your physician before you use a medication, and be aware that bladder analgesics can turn your urine (and thus stain your clothing) a bright orange or blue color. You might want to take precautions by wearing a personal liner or pad.
• Learn to use your GPS or smartphone to find bathrooms along your route. Sometimes just knowing where they are is enough to take the edge off. (There are many, but here are a couple I found for you to try. Please do research before you purchase. Android or iPhone)
• Take your own food and water with you if you are diet sensitive. Crackers, plain sandwiches, cut carrots and celery, pears, and muffins are easily transported. You can even make your own trail mix with white chocolate chips, bladder safe nuts, mini-pretzels, and IC safe cereals. Alternatives are simple, condiment free hamburgers from fast food restaurants, some chicken nuggets/tenders (know what you can eat safely), pretzels, nuts, salads without dressing (yes you can do it!), and even vanilla milk shakes.
• Finally, if you are a passenger and not the driver, take a pillow, blanket, some soothing music or meditations, and even ear plugs along to rest and/or even sleep part of the way.

How do you cope having interstitial cystitis and longer car trips? Please share your traveling and/or Smartphone ideas with other patients in the comments below.

For more information on traveling with IC, see:

Confident Choices IC Diet Facebook Page 
Customizing the Interstitial Cystitis Diet: A Confident Choices Book

If you would like to buy the products listed in this blog, please consider using the links. This is a painless way for you to support our work. Thank you.

Getting Through the Holidays with Chronic Illness (Plus Bonus Quiche Recipe!)

I spend a lot of time with patients on the phone this time of year. I know I am busy, but the holidays can be overwhelming for someone with a chronic illness like interstitial cystitis, so I do my best to help them.

Today, I had a heart-to-heart conversation about the holidays with an IC patient (she also has multiple conditions including chronic back and neck pain). Near the end of our call, she said, "I don't feel guilty about not being able to do everything; I am over that. But I spend a lot of time in my head dwelling on the fact that people are judging me." I asked what she meant about that, and she said she "sees" disappointment in people's faces that she can't participate like she used to.

This reminded me of a Dr. Oz segment I saw earlier this week where he interviewed Christine Carter, PhD. The topic was "Things that block us from being happy the most." Here is what his guest had to say:

1. Perfectionism (which is basically living in a continual state of "not good enough."
2. Materialism (always thinking of what you can get rather than what you can give), and
3. Entitlement (more likely to feel disappointed when we don't get what we want than we are to feel grateful when we do).

Now, I realize that is all easier to say than it is to correct. In fact, I was watching the recorded show while I was wrapping Christmas presents at 1 am. It was just what I needed to hear. The tape dispenser was not cooperating, and I realized I hadn't purchased bows. Perfectionism for me this time of year mostly revolves around: Are the packages going to look perfect? Am I going to have the right food? Or I read our Christmas letter again and again wishing I had said something or not said something else. It is so easy to get trapped in all of that and more when when we see our magazines full of perfectly set tables, photo worthy food, gorgeous hand cut Christmas cards, and perfect homemade gifts. 

I think I get trapped in reverse materialism...which seems to me just as damaging...."Am I giving enough? Maybe I should get just one last gift card for the kids. Does everyone have the same number of presents? Will this be as good as last Christmas?" 

And the entitlement isn't about gifts either for me......I think for many women, it is easy to fall into the trap of, "Well I did all of this for you, so you should praise me and be thankful and do your part to make the holiday perfect." We need to give without expectation of thanks. Not to say my family isn't appreciative and grateful. Quite the opposite. But if we are waiting for the exact right phrase, or the hand written thank you (when someone wrote a lovely email or text of thanks) or if we didn't get thanked "properly" for that one item we took months to find...well that is a trap. So........this year no bows.......and the corners of the packages are mashed together. I think we will still enjoy Christmas. 

In the end, I wonder if our view of the holidays is skewed by our own view of things, and maybe as the psychologists say, we need to change ourselves so that others view us differently. 

Do you feel guilty around the holidays because you are "sick"? Do you spend "a lot of time in your head" thinking people are judging you? Do you think this is more a reflection of what you feel, or is it true, people judge you? If so, let's brainstorm ways to get over that so we can all enjoy the holidays! You deserve a lovely holiday just like everyone else!

PS: To see Dr. Oz and Dr. Carter talk about how to boost your happiness, check out a video from that segment here: http://www.doctoroz.com/episode/dr-ozs-happiness-boosters. Also see my previous blog post, Bringing the Ho-Ho-Ho Back to the Holidays. 

BONUS: Christmas Day Breakfast Recipe from Confident Choices: A Cookbook for IC and OAB:

Spinach and Feta Quiche

Ingredients

·          2 (10 oz.) pkg. frozen chopped spinach (thawed)

·          5 eggs

·          1 c. half and half (may substitute 1 c. evaporated skim milk)

·          1 c. crumbled feta cheese (4 oz.)

·          2 T. chopped green onions

·          1/2 t. lemon zest, if tolerated

·          1/2 t. salt

·          1/4 t. pepper

·          1 unbaked 9-inch pie shell (may use refrigerator or frozen dough)

Pierce bottom of pie shell and bake for 5 minutes at 350°F. Cool slightly. Raise temperature of oven to 400°F.

Drain spinach and press out all liquid. (This can be done easily between layers of paper towels.) Set aside.

Whisk eggs and half-and-half or milk in bowl. Add cheese, green onions, lemon zest, salt, and pepper. Pour into partially baked pie shell. Bake on middle rack, 400°F for 10 minutes, reducing oven temperature to 350°F for the last 25 minutes. (Note: the timing seems to be different every time for me. Test frequently like you do a cake. Put a dry strand of spaghetti in the middle and see what it looks like when you bring it out. It should be moist, but not dripping with egg mixture.)

Broccoli and Cheese Quiche:  Substitute 1 cup frozen broccoli florets for the spinach and 1/2 cup mozzarella or cheddar cheese for the feta cheese.

Don't need the whole cookbook? Try the Confident Choices e-books!