Monday, January 25, 2016

Beauty and the "Beast!" An Interstitial Cystitis Patient Speaks Out

IC patient Britani Warner, "I will not let my illness take over all of who I am."
From Julie: I am the first to admit that one of the benefits of working in the interstitial cystitis online communities of the ICN Forum and my Facebook pages (Confident Choices® and Interstitial Cystitis Diet) is that I have met some fantastically resilient people who are not shy about sharing their chronic illness stories and coping strategies. One of my new friends, Britani Warner, agreed to share her story with you today. Now, we aren't saying that every patient has to wear make-up to feel better, but as you read this story by feisty Britani, think of what you CAN do to normalize your life as a chronic illness patient. Are you a musician and miss singing or playing your instrument? Are you an artist who has abandoned your brushes and paints? Or are you an aspiring chef who has become discouraged by the IC Diet? How can you reclaim these parts of yourself? Let's let Britani inspire us!

Britani and her family of pups!
Britani Warner: Let's face it. Living with a chronic illness is exhausting. The pain, fatigue, and side-effects from medications can keep us pretty worn out and not feeling like doing much of anything, much less taking care of our personal appearance. However, especially bad days, I have found that if I just put on some makeup and let my awesome purple hair down, my outlook on the day is much brighter.  How could you be sad with purple hair, right?!

Being sick can make you look sick, and when you look in the mirror and see those dark circles under your eyes, it can be quite disheartening. Throwing on some cosmetics to cover those pesky dark spots and brighten those tired eyes can make a huge difference in your mood for the day. Even if your body hurts and you're tired, looking good can help you feel good, even if just by a tiny little bit (and that tiny little bit counts a whole lot when you live in pain each and every day).

On those days when all I want to do is lay on the couch in my pajamas, just painting on some cat eyes and applying several layers of mascara (because we all want three-inch long lashes, right ladies!) brightens my mood. The way I see it, if I'm gonna be a sickie, at least I can be pretty. My tired, aching body will not reflect in my face. I dare people to say to me, "But you don't look sick!" I will not let my illness take over all of who I am. Taking care of my appearance not only makes me feel a little better when the "beast" of chronic illness rears its ugly head, but it also allows my face to reflect who I truly am on the inside: a beautiful warrior.

 Chronic illness will not win this fight.

_______

For more information on coping strategies and living with interstitial cystitis and other chronic illnesses see: Customizing the Interstitial Cystitis Diet: A Confident Choices® Book.
 

Monday, January 18, 2016

An IC Diet Road Map!


Like most other things in life, if you are trying to manage your interstitial cystitis symptoms with the IC Food List, you need a plan. Imagine that you are going to take a vacation. If you are like most people, you probably start choosing a destination weeks or even months in advance. You will likely spend time deciding on transportation, entertainment, and lodging. If you are driving, you might study maps to familiarize yourself with the various routes you can take. Or, if you are flying, you might compare the price and convenience of various airlines.

Now imagine the confusion and frustration that would result if you just woke up one day and decided to take a vacation. Just choosing where you want to go would be paralyzing, let alone knowing what clothes to pack, or how you will figure out last minute transportation. Of course, you can drive to your destination, but would you set out to an unfamiliar place without a map or directions? (As an interstitial cystitis patient, you would probably want to know where all the bathrooms are too!)

Just like planning a vacation, spending a few minutes each week planning IC friendly meals based on the interstitial cystitis diet can save you the agony of making last minute decisions. Having meals planned in advance along with recipes can even reduce the temptation to eat outside of the home. Also, creating a grocery list from your menus and shopping once a week, will save you the frustration of shuffling the contents of your refrigerator and pantry or running to the store at the last minute to find that one elusive ingredient.

Not everyone can afford an IC Diet consultation with me, but that is why I wrote the books. With a little help, I believe most people can do this themselves! It's a new year! Give it your best!



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


 

Friday, June 26, 2015

Interstitial Cystitis Diet Hacks Part 2: Bury Denial and Take Control


Often I hear people asking if some IC patients are simply not diet sensitive. I know it is tempting to think that you might be a person who doesn't need to modify what you eat, but here is what we know:
  • No matter how the research is done, studies show that up to 94% of patients with IC are sensitive to some foods.
  • I often hear people with interstitial cystitis who are in a flare say following the IC Diet didn't help them. 
  • I never hear people whose IC syptoms are improved say they didn't modify their diet in some way.
Frankly, I believe that those whose bladder is flaring and say the diet "didn't work" likely had other things going on such as stress, pelvic floor dysfunction, physical activity, even problems with laundry soap, or they didn't give the diet a chance to work. There is also the possibility that they were following the diet incorrectly or they followed the diet but refused to give up something important to them like coffee, tea, or diet soda. Maybe the foods they ate contained hidden ingredients that bother interstitial cystitis in their foods like artificial colors, preservatives, soy, or MSG. Regardless. there is likely some reason why those people tried the diet and it failed.

The good news is that most people eventually figure out their own personal trigger foods; many using some sort of journaling technique. (See Interstitial Cystitis Diet Hacks Part 1: Why Journal?) Some people only need to avoid the most bothersome foods: coffee, tea, soda, artificial sweeteners, tomatoes, citrus foods, alcohol, soy, chocolate, and spicy foods. Some need a little more guidance with someone like me, a dietitian who knows IC. The bottom line is that diet is an important base-line treatment for IC.

Were you ever in denial about how diet affected your interstitial cystitis symptoms? What are your most bothersome foods? What are your least bothersome foods? Let's continue the conversation here in the comments or on the Confident Choices Facebook page!

PS: Thank you so much to all of you who are making your Amazon purchases though the Confident Choices links. Here are some of the products that purchased to help our cause!

Sit and Be Fit Exercise DVD 

ZenGate Samsung Galaxy Note 4 Wallet Case

Puroast Low-acid and Decaf Coffee

Tuesday, June 23, 2015

Interstitial Cystitis Diet Hacks Part 1: Why Journal?


I have to tell you a cool story. Before I had interstitial cystitis and became a reluctant expert on the IC Diet, I was a regular, everyday dietitian working in a hospital weight management facility. I loved my job. Loved the people I worked with and the patients we saw.

Occasionally over the years, I wondered what happened to some of them. Then recently I ran into one of my former patients who recognized me. It appeared at first glance that she had kept the weight she had lost off (which is more than I can say for myself!), but she had a surprising story to tell.

"Julie, after a few years of maintenance, I gained about 50 pounds back. I realized I had to do something or I would be back where I started, and I came across all of my food diaries in my kitchen cupboard. I had stacks and stacks of them. I want you to know I sat down right there on the kitchen floor and started to read them again....all the food I ate (and wanted to eat but didn't), all the feelings I had (good and bad) about losing weight, the new recipes I had tried back then, the number of steps I took each day....all of it. It was like taking the weight management classes all over again, and I could hear your voice teaching and guiding us through the process. I even remembered you telling us to save the diaries forever so we could we could revisit them in the future. Well those diaries are the reason I was able to lose those 50 pounds again. Thank you!"

Now, to be honest, I had totally forgotten about my advice to save the food diaries. I am sure I said it, but nevertheless, this wonderful woman's story reminded me once again about why food and symptom diaries are so important for interstitial cystitis/painful bladder patients! Not only can they help you figure out your food and other triggers, you can record your symptoms, your feelings, your limitations, and your victories! Your food and symptom diaries are YOUR IC story!

How can you make the best of your journaling? Try to do each of these three things every day:
  1. Spotlight what you are doing. Recording your food, activities, symptoms, feelings, and challenges raises your own sense of awareness. Keeping tract of these things can provide you with valuable insight on how the food you eat or the things you do affect your symptoms.
  2. Set small goals for yourself. Sure you want to be pain-free. That is an umbrella goal for us all. But how do you get there? Maybe you want to drink less coffee and more water. Or, maybe you want to move more each day. Even write down when you try new medications and supplements and keep track of how you feel. Committing these goals to paper can help you navigate the many changes needed to have a healthier IC lifestyle.
  3. Record the results of small changes. Did you feel better or worse trying a new brand of water? Did hiking at the park give you less pain than riding your bike? Did the new recipe you tried bother you? If not, did your family like it? 
In addition, your journal can be a valuable tool when you visit your health care providers. You can talk to them about the changes you made and how they worked for you. You may be able to explore treatment strategies together based on the patterns, successes, and failures you read in your diaries. Finally, if you save these diaries like my weight management patient did, you will have them to look back at if you have a flare or recurrence of symptoms.

How do you journal? Do you keep track of the foods you eat and the things that you do? Have you found it helpful in managing your own IC care plan?

You can find free downloadable samples of food and voiding diaries at IC Recipes and Resources!

Saturday, February 21, 2015

Going to Church with Interstitial Cystitis


 (This blog post was written by my friend, Jolene Bates. Whether you are religious or not, science has shown that people who participate in spiritual practices are often happier and healthier. Have you missed going to church? Here is one alternative!)

Hi, my name is Jolene. I was diagnosed with IC in 1975. One of the many things in my life impacted by IC is my ability to enjoy church services. Some days I would get along fine, but just as often I would find myself needing to get up to go the bathroom and feel uncomfortable because I felt everyone was looking at me when I made my way out of the service. On days when I was flaring badly, it was not even possible to think about going to church.

Over the years many things happened relating to my ability to get to church. A few years ago after we had made a move to a rural area of Iowa, I found myself wanting to get back to church. I live approximately 40 miles round trip from a church I might have wanted to go to. We don't have a lot of money, so that in and of itself was going to be an issue on a consistent basis. The other part of that was so many days my bladder was not going to allow me to do that kind of traveling.

One of my online friends is a member of Westside Family Church in Lenexa, Kansas. This church has what they call an online campus. Every Sunday at 8:30, 9:45 and 11 am, CST and 5 pm, CST; they have a live service with music and sermon. The exact service that is taking place in their church in Lenexa is being shown live on the internet! During the live services, there is a chat box and a live prayer feature as well as service notes are available online. They even have a Facebook group for online campus, so that people who connect with us online for services can even get prayers and support during the week. I tried it out in 2011 and loved it.

To make a long story short, I am now an online volunteer and typically volunteer during the 8:30am and 5 pm services on Sundays. The services are an hour long. They also have started showing the recordings of previous Sunday services for the past month all through the week at different times but those services don't have the chat box feature. They also post just the sermon portion of the services on YouTube. Because of what I do volunteering online, I am also able to turn the chat feature on and off so if there is a time other than Sunday when you or your family or friends want to watch a service, if I am available, I will be happy to help you share a service with your friends and have the chat box. It is a great way to connect with family for church when you don't live close to each other.

This church has been so loving and welcoming to me and I have never stepped foot in the physical church yet. I lead online Bible study groups and Lifegroups via closed Facebook groups for women for them that has both WFC members and non-members alike. Since I am considered part of the volunteer team for the online campus they make sure to include me via Google Hangouts for video meetings.

Today, you don't have to give up church because of interstitial cystitis. If this is an issue for you, do a little searching online for spiritual communities that meet your needs. If you are not sure where to start, please consider trying Westside's online campus ministry. If you are on and see "Jolene from Iowa", that's me!!

Questions? Please email me with any questions at joleneb2@yahoo.com. I am also on Facebook, Jolene Bates

_______

I truly appreciate my Amazon shoppers! 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. This is a simple way to help pay for the CC website, blog, newsletter, and social media time! http://tinyurl.com/ICCookbook

Tuesday, November 18, 2014

How Others Can Help People with Chronic Illness During the Holidays


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:

Getting Through the Holidays with Chronic Illness
Depression, Suicide, and Interstitial Cystitis 

***************
I truly appreciate my Amazon shoppers! 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. This is a simple way to help pay for the CC website, blog, newsletter, and social media time! http://tinyurl.com/ICCookbook


Monday, November 10, 2014

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

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 the first place. 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.

***************

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