Thursday, December 20, 2012

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

The holidays can be overwhelming for someone with a chronic illness like interstitial cystitis, so I do my best to help them. A few years ago, I had a heart-to-heart conversation about the holidays with an IC patient who also had multiple conditions including chronic back and neck pain. We discussed coping strategies and navigating party situations and 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 an interview with Christine Carter, PhD. The topic about things that block us from being happy the most. She said that disappointment and unhappiness around the holidays can be traced to three different things, much of which is mental attitude and within our control:

  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 interview while I was wrapping Christmas presents 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 when I read our Christmas letter again and again, I wish 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 holiday experiences are 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!


 ho ho ho holidays    

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

Spinach and Feta Quiche


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

·          5 eggs

·          1 c. evaporated  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. I like Marie Callender's)

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

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

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

 **Please SHARE using the links below!**

Monday, November 12, 2012

Are You Sick and Tired of Being Sick and Tired? 14 Ideas to Get More Energy Without Caffeine!

Smelling coffee beans can help  wake you up and lift your mood!
Smelling coffee beans can help wake you up and lift your mood!
One of the most common questions I get from my IC diet coaching patients is "How can I get more energy if I have to give up caffeine?" 

Trust me, I hear every word you are saying. Although some interstitial cystitis patients do ok with low acid coffee, most IC/BPS patients need to give up coffee entirely.

Many things can contribute to fatigue when you have IC. Obviously, sleep is compromised if you are getting up several times at night to use the bathroom. In addition, many medications patients use, including narcotics, anti-anxiety medications, and antihistamines cause drowsiness. Even the mental activity of navigating the changes associated with being diagnosed with a  chronic illness can be exhausting.

How does a person deal with such a situation? Trust me, it is far from hopeless. Here are 14 things you can try to get more energy without caffeine:   
  1. Work with your physician. Once you rule out any other medical conditions, ask if you can take less medication that contributes to drowsiness if you can get your symptoms under control by modifying your diet.
  2. Nurture a positive attitude about giving up caffeine. Remind yourself that this is something you can control, unlike many other aspects of the disease.
  3. Establish regular sleep habits. Most people, sick or not, require at least 8 hours of sleep at night. If you know you will spend a portion of that in the bathroom, plan to “sleep” even longer.
  4. Take mini-naps during the day if necessary. Find a quite place to lay your head down for a few minutes. Set the alarm on your cell phone for 15 to 20 minutes. When you consider that you are much more alert after these mini-naps and accomplish more, the time is worth it.
  5. Eat smaller, well-balanced, low fat meals. High calorie meals can slow even the healthiest person down as the body diverts energy to the process of digestion. Have a handful of high protein nuts or vitamin packed carrots as an afternoon snack instead of a handful of sugar cookies.
  6. Drink plenty of water. One of the first signs of dehydration is fatigue. You may have kicked the caffeine habit, but have you developed a water habit?
  7. Use a small personal fan in your workspace. The cool air movement can keep you feeling more alert.
  8. Expose yourself to bright lights. If you have a choice, move your desk near a sunny window. If that isn’t possible, ask to have brighter lights installed in at least part of your workspace.
  9. Use citrus scented hand lotions. That burst of citrus as you moisturize your hands can wake you right up! I have citrus lotions all over the place, in my home, in my car, and in my purse. You can find them in specialty stores like Bath and Body Works, Body Shop (try the Bergamot), and William Sonoma. Lotions with a strong minty scent work good too!
  10. Place a bowl of coffee beans near your workspace. Or, keep a small mesh bag of the fragrant beans handy. Science shows that even the smell of coffee can be enough to brighten your mood and provide you with a flash of energy. 
  11. Fill your spaces with fresh plants. Plants use the carbon dioxide we exhale and provide us with fresh, energy boosting oxygen. Don't forget to get a walk in the great outdoors as well!
  12. Watch your posture. Sit up tall! Don’t make your lungs and heart work harder than they have to. Just sitting tall can give you the feeling of having more energy.
  13. Get regular exercise. One of the first things we are tempted to give up when we are tired is exercise, when that is the opposite of what we should do! As you make the rest of your body stronger, it becomes more efficient at accomplishing everyday tasks. In fact, people who are fit often report needing less sleep than their out-of-shape neighbors do.
  14. Finally, find a way to stimulate your funny bone. Many times when we live with a chronic illness, we forget to enjoy some of the simpler things in life. Watch funny television shows and movies instead of draining yourself with emotional dramas. Subscribe to a joke of the day to great you each morning in your email. Find an excuse to laugh every day!
Adapted from the forthcoming book: Living Positively with Interstitial Cystitis: A Confident Choices Book by Julie Beyer, MA, RD.

If you need help getting more energy without caffeine, please don't hesitate to contact me at  for a personal consultation. A one hour phone consultation CAN make a difference in your life!

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

 **Please SHARE using the links below!**

Thursday, September 20, 2012

Interstitial Cystitis Diet? Trust Your Intuition!

Baking Bread
Oh my gosh, today there was a big discussion on one of my dietitian lists about gluten-free diets being used for IC. Although most people appreciated my level head when it came to the topic, it still frustrates me when people are so quick to promote something that has NO substantial research behind it. One dietitian said erroneously that 80% of IC patients have gluten sensitivity. When challenged, she couldn't substantiate that number. Well, of course she couldn't. It IS NOT TRUE!

I wrote about this in April of this year (Gluten-Free Diet for Interstitial Cystitis/Painful Bladder Syndrome), and still refer to it often when answering posts at the Interstitial Cystitis Network and on my facebook pages, Trust me, I understand the desperation that makes people believe that if they change their diet dramatically, they could cure their IC symptoms. But in my 14 years of dealing with thousands of IC patients, I just have not seen it!

I wanted to update the topic because I had to do more research to have this "discussion" with the dietitians. To be honest, nothing has changed. The ONLY statistics I could find are from an online poll done by the ICA:

 "More than 1,000 interstitial cystitis (IC) patients completed an Interstitial Cystitis Association (ICA) quick poll on gluten sensitivity and celiac disease:
  • 12% of IC patients reported being diagnosed with celiac disease, a gluten-intolerance condition.
  • 15% of IC patients stated that foods with gluten bothered their IC symptoms."

Keep in mind, that this was a self-reported survey (far from scientific) and these people may or may not have already been influenced by the flood of fad diet information out there about gluten in our food supply. And, although this page on the ICA states that there is research pending, I am having a hard time putting any value in a study that only includes 39 people when I have dealt with thousands of patients over the past 14 years. 

That being said, I know we have a LONG way to go with IC and diet research. This is made difficult because IC is likely not one disease, but several that we have lumped into one category. Treatment, including dietary treatment, is extremely individual.

My current recommendation with patients who come to me wanting to try a gluten-free diet is to have them try it for two weeks. If they do not have some relief during that time, we go back to eating foods that have gluten in them. It is never a good idea to eliminate entire food groups from your diet unless it is truly a medical necessity.

I believe in most patients' abilities to trust their own intuition as far as diet is concerned. In reality, bread and other gluten containing products are nearly always reported by patients to be some of the least bothersome foods for interstitial cystitis/painful bladder patients. Instead, research has shown the most bothersome foods for interstitial cystitis/painful bladder patients to be: 
  • Caffeinated beverages
  • Citrus fruits and juices
  • Alcoholic beverages
  • Carbonated beverages
  • Tomatoes
  • Foods containing hot peppers
  • Certain artificial sweeteners
  • Pineapple/pineapple juice
  • Cranberry juice
  • Horseradish
  • Vinegar
  • Pickled herring
  • Soy
For those of you more interested in this topic, I have a book written for dietitians that explores the research in more depth than my books for patients. If you don't have it already, you might be interested in Interstitial Cystitis: A Guide for Nutrition Educators:

I KNOW we have a long way to go with reseasrch on the IC Diet, but we are not going to get anywhere by continuing to disseminate poorly researched theories. Help pass the work. Send this link to your IC friends and post it in your groups. And PLEASE don't eliminate entire food groups from your diet unless you are really helped by it. An IC Diet is not "one-size-fits-all," but rather an individualized diet that can be determined by a deliberate process of trial and error. If you need help determining your personal trigger foods, please don't hesitate to contact me at for a personal consultation.

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate Need More Recipes? Check Out A Cookbook for IC and OAB!

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 

 **Please SHARE using the links below!**

Tuesday, September 4, 2012

Vulvodynia and Interstitial Cystitis

Vulvodynia and Interstitial Cystitis
What is Vulvodynia? Vulvodynia, or chronic pain in the area around the vagina (vulva) is often seen in interstitial cystitis patients. The characteristic symptoms of burning or irritation of this sensitive area can crossover with those of IC. Women with vulvodynia can find sitting for long periods of time and sexual intercourse extremely uncomfortable. The condition is considered chronic with symptoms lasting years.

The Low Oxalate Diet: Many patients report some relief when following a low oxalate diet. Oxalates are tiny molecules found in various foods that generally pass through the body unabsorbed. In some patients, however, oxalates can pass through the intestinal barrier and the molecules accumulate causing inflammation in various areas of the body. To date, researchers have not proven that oxalates play a part in vulvodynia; however I truly believe that patients know best and the researchers need to keep looking!

Finding Personal Trigger Foods: If you have vulvodynia in addition to IC and you want to try to eliminate oxalates to see if it helps your symptoms, you can combine both the low oxalate food list with the IC Food List. Compare the lists, crossing out foods on the IC Food List that are high (H or VH) and moderately high (M) in oxalates. This will give you a basic diet to follow to see if your symptoms improve. After some time, you can experiment with adding some of the M foods back in to see if you react. The important thing is to develop your own, personalized trigger food list and not eliminate foods unnecessarily.

If you need to combine a low-oxalate diet with an IC Diet, I suggest that you consult a dietitian. I have helped many IC/vulvodynia patients over the years. If you are interested in a consultation, please email me at If you would rather see someone in your area, please email me and I can find someone to help you. 

Treatments for Vulvodynia: Medical treatments include tri-cyclic antidepressants and antihistamines to help reduce pain and inflammation. Vulvodynia patients may also find relief from creams such as lidocaine that temporarily numb the area. Surgery should be considered a last resort and may include removal of the painful areas of the vulva.

Additional Lifestyle Changes: Many patients find they can treat their symptoms with various lifestyle changes. recommends cold compresses to the affected areas, avoiding tight fitting clothing, avoiding hot tubs, limiting excessive personal hygiene, and paying attention to other triggers such as personal hygiene products and toilet tissues. 
Some people with vulvodynia take warm baths with a handful of Epsom salts in it to relieve their symptoms. You may also want to use personal lubricants. I LOVE the Desert Harvest Aloe Gele'! It is actually the reason why I decided to write this article! I keep it in the refrigerator since the coolness also seems to help. Desert Harvest also has a Desert Harvest Aloe Gel that doesn't use any preservatives. Again, an excellent product that has helped many IC and vulvodynia patients. 

Desert Harvest Gele
[More product information: Both Desert Harvest's All-Natural Aloe Vera Personal Gel and Desert Harvest Gelé contain all of the anti-inflammatory,pain relieving, and healing properties of the aloe plant without paraben preservatives. The difference between the two is the concentration. DH Gelé starts with 10X concentrated aloe vera juice, while the DH Personal Gel uses 1X juice, which means the Gelé is more therapeutic and healing. The Gelé is 95% natural with small amounts of manmade preservatives. The Personal Gel costs a bit more because it uses 100% botanical preservatives. Many thanks to Desert Harvest for their support of the Confident Choices mission!]

For more information and personal support check out the Interstitial Cystitis Network's Vulvodynia Support Forum

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

 **Please SHARE using the links below!**

Tuesday, July 24, 2012

Interstitial Cystitis Diet and Overwhelm

should I eat it? interstitial cystitis
I often get frantic calls from interstitial cystitis patients who are overwhelmed trying to figure out what they can or cannot eat.  Trust me, I totally get it. Early on I was frustrated about the IC diet, ending up in a negative cycle of fixating on the foods I couldn't have, thinking I already had to give up so much of my life, and now I can't even have spaghetti or orange juice. How am I going to handle this?

Despite the frustration; however, the key thing to remember is that dietary modification CAN help control symptoms of IC, and it is actually something we have in our control. The one thing that helped turn my head around was to realize that eventually everyone "gets" something. Some people get arthritis, some get diabetes, some have even worse diseases like cancer.

In fact, if you asked ten people on the street if they are supposed to be watching their diet in some way, nine out of ten would say yes . . . and the last one would most likely be lying!

The good news is that an individual's IC diet usually doesn't have to be as strict as you may think. Most people with a painful bladder or interstitial cystitis find that they can have a substantial and healthy diet if they do a little detective work to identify their personal trigger foods. That is the idea of the IC elimination diet. Most people do not have to be on the most restrictive diet forever. And, although others with IC are great counsel, your diet is probably not going to look like anyone else's.

It can be very helpful to remember that eventually you will feel normal again, or more accurately, you will find yourself accepting a "new normal." You will learn coping skills that will help you on a daily basis. You will be able to navigate your refrigerator and restaurants without putting yourself in a flare. You will find exercises that you can do, and fixate less on what you can't do.

So, if you are new . . . hang in there . . . ask questions . . . be your own best health care provider. Keep a diary or a calendar. Write down what you eat, what is going on in your life, the medications you are trying, and how you are feeling. If you can't figure it out, share your diary with a trusted friend or your doctor. Sometimes we are too close to a situation to see what may be hurting us.

The ultimate message here is that you CAN do it, you CAN get better, you CAN begin to heal . . . it just takes some time and patience.

For more help see:  
Customizing the Interstitial Cystitis Diet: A Confident Choices Book

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

 **Please SHARE using the links below!**

Thursday, July 12, 2012

Interstitial Cystitis and Stress: Can Stress Affect Your Bladder?

stress and interstitial cystitis

When I speak to interstitial cystitis support groups, I often tell a story that took place shortly after I was diagnosed for my painful bladder. (If you have heard this story before, please bare with me.)

We had just moved into a new house and took a weekend to wallpaper the kitchen. As many of you can relate, putting up wallpaper can definitely test a relationship! In fact, things were going along just fine until my husband lost his temper briefly about something. I literally doubled over with bladder pain, and he snapped again, "But you were fine just a second ago!"

Yes, I was fine just a second ago, but this scenario was the biggest example yet of how quickly stress can affect our bodies, particularly if you have a condition like interstitial cystitis.

What Is Stress?

Despite all of the psychological talk these days about stress, many people are still not sure what it means and how stress can affect a condition like interstitial cystitis. For example, stress itself is neither negative nor positive. Instead, it is our reaction to stress that turns stress into “dis-stress.” Most interstitial cystitis/IC patients learn early that stress can aggravate their bladder symptoms. Please understand; this is not the same as saying that your symptoms are all in your head. Stress, more exactly the body’s response to stress, produces chemical and physical changes that cause our bodies to react in ways that are intended to protect us, but they can also cause damage to our bodies, including our bladder.

The first thing to keep in mind is that stress can be either “external” or “internal.” Examples of external or physical stress include loud noises, extreme heat or cold, malnutrition, injuries, illnesses, toxins, travel, heavy labor, exercise, harsh weather, smoking, and drug or alcohol use. Internal stress can include emotions like anger, resentment, envy, revenge, tension, anxiety, excitement, guilt, fear, rejection, failure, success, depression, love, joy, expectations, boredom, and even frustration. If you are surprised about the positive emotions being listed there, consider the stress people experience when planning weddings or building their dream house!


Fight or Flight

To understand how these stresses create problems in our body and particularly our bladders, it is important to understand the physiological reaction to stress. 

Imagine that a fire spontaneously breaks out in a store where you are shopping. Some of the people around will call 911; some will work to fight the fire; and some will flee, or run from the scene. The body’s physical responses to this stressful situation (the “fight or flight” response) include:
  • Increased release of stress hormones—frequently triggering IC symptoms
  • Surges of sugar released into the bloodstream—providing quick energy for muscle and brain functions
  • Accelerated heart rate, increased respiration, and increased blood pressure—improving the flow of oxygen and energy to the muscles and brain
  • Increased cholesterol and blood lipid levels—providing a sustained form of energy
  • Increased blood clotting ability—preparing the body to heal potential wounds from “fighting”
  • Increased sweating—keeping the body cool during “battle”
  • Dilation of pupils—maximizing vision
  • Slowed digestion and reduced immune function—allowing the body to focus energy on the “stressful” event
Although all of these physical reactions are valuable when a fire breaks out, many times the stressful events we experience do not require the same level of physical activity that fighting a fire demands. For example, when you are subjected to pressure at work, it is unlikely that you will physically have a fight with your boss. Or, if you are in a traffic jam, you probably are not going to get out of your car and start running. Yet, in each case, your body goes through all of those physiological and chemical changes of stress.

This unmanaged stress negatively affects body systems. Many of these changes can affect your bladder if you have interstitial cystitis or even overactive bladder! Nutrition resources are depleted rapidly. The risk for heart disease and stroke increases. Headaches and muscle aches are more common in people under stress. Both men and women can experience fertility problems, and the body is more susceptible to illness (cancer, infection, colds, and flu) because of a weakened immune system. 

Knowing this, now you can probably see how so many health problems are stress related. People under stress are more susceptible to ulcers and irritable bowel disease. Bingeing behavior can increase after a stressful episode, making weight management difficult. On top of that, stress hormones encourage fat to be stored. Finally, as most IC patients know, unmanaged stress can cause an increase in urinary symptoms. 


Managing Stress to Manage Your Bladder Symptoms

“I believe that a simple and unassuming manner of life is best for everyone,
best both for the body and the mind.”
Albert Einstein

  • Taking action if possible: Procrastinating on a project or sweeping problems under the rug only increases stress in the long run.
  • Committing to a healthy diet: A healthy diet not only keeps the body from going into stress related to malnutrition, but it also reestablishes nutritional balance when nutrients are depleted, and fortifies the immune system.
  • Getting up to move: Exercising gives the body something physical to do when it is in a state of stress and reduces the effects of stress by using up the chemicals released in the “fight or flight” phenomenon.
  • Avoiding the temptation to “relax” by using alcohol or drugs when under stress: These substances only increase stress on a body.
  • Practicing deep breathing, yoga, massage, meditation, or prayer: hugging someone; playing with a pet.
  • Putting your problems into words: Talking to someone or writing the thoughts down can help provide perspective.
  • Practicing forgiveness: Forgiving those who have hurt you and forgiving yourself for not being perfect can help you come to a place of acceptance.
  • Enjoying something “new”: Taking up a craft, or enrolling in a class can help you feel a sense of accomplishment.
  • Letting go when the situation cannot be changed: Putting problems in the past is much healthier than obsessing about problems that can never be solved.
PS: I just wanted to assure you that the wallpaper turned out beautifully! In fact, that was about 12 years ago, and we have redone the kitchen again with nary a cross word! :-)


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

 **Please SHARE using the links below!**

Thursday, July 5, 2012

Interstitial Cystitis Mental Gymnastics - Part Three (The Blame Game)

The Blame Game
The blame game I am talking about today is the one we play with ourselves. Sometimes having a chronic illness like interstitial cystitis seems like the biggest thing in our lives, especially at first. It can be easy to use the disease as a scapegoat for everything bad that happens. Of course, that means we are blaming ourselves, which in most cases is not fair, and certainly isn't healthy.

A great example is the time my family was driving to Florida from Michigan, and we had to stop just short of our Disney destination for me to go to an emergency room. I thought I was in a horrible flare, but actually had a raging bladder infection. At the time, I felt guilty and "blamed" myself for our family "losing" a day of vacation. Let's step back, however, and digest this logically:
  1. First, whether it was an infection or an IC flare, it wasn't my fault. Period. Nothing I did made me sick. Nothing I did gave me IC. 
  2. Second, my family did not really lose a day of vacation. While I was in the ER, they were back at the hotel swimming in a pool and having a great time. It wasn't the Mouse's pool, but it was a pool, and the weather was warmer than it had been in Michigan when we left. No one else perceived it as a problem, why did I?
  3. Third, if I hadn't gone to the ER, I would have become that much sicker. Delaying treatment is never better than seeking help.
  4. Finally, it could have been anyone else that had gotten sick....and they have on other vacations. My husband broke a foot right before we went to Mackinaw Island once. He even rode a horse on that trip. Then, he broke his hand in a car accident before we took a two week cruise. I was totally understanding and even bought him an electronic reader to take so he could read more comfortably. My middle child used to get sick with something nearly every time we traveled or took a vacation. On one trip, I spent the day in the hotel room with her while the rest of the family went to a water park. And, each of my kids have missed parts of vacations because of baseball tournaments and band camp.
Do you sometimes blame yourself when bladder symptoms upset your family's plans? Then it is time to put things in perspective. Try not to exaggerate the burden your condition puts on others. It isn't fair to you and can set a bad precidence where everyone starts to inappropriatly blame you too. Instead, practice taking disruptions in stride and even with a sense of humor. Things happen. People get sick, and everyone gets something sometime. Why should we treat ourselves with less understanding and compassion than we do the rest of our family?

PS: I almost forgot to tell you! When I was at the emergency room in Florida, I used my "Restroom Access Card" from the Interstitial Cystitis Network. The physician's assistant looked up information on IC and was able to help me much more effectively than if I had to explain everything from scratch. These cards can also be handy if you are on a plane or need restroom access in a place that generally doesn't have public restrooms. A bargain at $2.49 for 3.

Related Posts:

Fighting Interstitial Cystitis Flares 
IC Patients - Are You an Introvert or an Extrovert?
Mental Gymnastice Part One (Consider Intentions)
Mental Gymnastics Part Two (Turning Negatives to Positives)

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

 **Please SHARE using the links below!**

Thursday, June 28, 2012

Interstitial Cystitis Mental Gymnastics - Part Two (Turning Negative to Positive)

Coping strategies for IC lifestyle
I have a question for you. If you have a chronic illness like interstitial cystitis/painful bladder syndrome, do you think of yourself as "sick"?

I have to admit, now that I have my symptoms under control, I don't think of myself as least not on a daily basis. Watching what I eat, taking my medications, and tapping into coping skills helps me maintain a semi-healthy mindset. I can do my work, fix dinner, encourage my family and friends, and basically enjoy life.

That being said, there are times when I can't rationalize my health problems away, particularly when I have to fill out my health history for a new doctor. It is one thing to list the surgeries (three C-sections among them), but quite another to write "interstitial cystitis, hiatal hernia, Hashimoto's thyroiditis, ascending aortic aneurysm, sacroiliitis, etc..." and then list the medications that go along with all of those conditions. Of course, it really hits me between the eyes when I am faced with something I want to do but can't.

Now, common sense tells us that living with a "healthy" mindset has to be healthier than living with a "sick" mindset. But how can we switch our thinking when we are constantly frustrated by fickle diseases and multiple conditions? Here are some ideas: 
  1. First, embrace the philosophy of the Serenity Prayer: You know the one.....

    God, grant me the serenity to accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.

    This is huge, folks. If you have conditions that you cannot change, then you need to learn coping skills to handle them. If you have conditions that are within your control, then you need to take control.
  2. Second, take ownership of your body. If there are things you can do to manage symptoms (like avoiding IC trigger foods) then do it. Don't blame others for what you can control. Don't complain about the things you need to do to be "well." Just do them. You only have one life regardless of the body you have. Treat it well...there are no trade-ins.
  3. Third, learn to be a cheerful "swapper." If you can't ride a bike, learn to appreciate walks and hikes. If you can't drink alcohol, embrace the role of designated driver. If you can't eat some of your favorite foods, experiment with substitute ingredients or identify yourself with new favorites. You get the idea.
  4. Fourth, minimize the time you spend on "sick" activities. I package up my medications and supplements in little plastic zip bags once every couple months. Yes, it is depressing, back breaking, and takes a couple of hours. But, once it is done, it is done. I don't have to think about it for weeks. I also have streamlined my doctor appointments. I found I was running to one doctor or another week after week. I started to resent the time I spent waiting in offices. When it dawned on me that I only had so many life minutes, I asked my gynecologist if he would follow me for all of my conditions as long as I was stable. Thank God he agreed. 
  5. Finally, find a way to reach out and help others. This has probably been one of the most rewarding things about having interstitial cystitis. Eventually, I earned the wisdom to share with others who were trying to figure out this crazy disease. I started by answering questions at the Interstitial Cystitis Network's forum and writing a column for the Interstitial Cystitis Association. I eventually wrote three books about IC and Diet, and started counseling patients. Lately, I have been speaking to support groups and educating dietitians and nurses about the IC Diet. It helps ME to help others!
The underlying point here is to focus on what you can do and minimize the time you spend dwelling on what you can't. Or in other words, stop defining yourself by what you can't do and start redefining yourself as a person who is in control of their life. It definitely takes some mental gymnastics and discipline, but the pay-off can be more days washed in positivity than buried in pessimism. And that is healthy for anyone!

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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