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

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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 

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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.

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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

Wednesday, October 1, 2014

An Interstitial Cystitis Elimination Diet: Eight Ideas for Keeping It Simple


If you are newly diagnosed, or find yourselves in a flare you can't quite get control of, it is important to stick with the bladder friendly column of the IC Food List, keeping your meals as plain and simple as possible. It is much harder to filter out which food is causing your bladder symptoms to flare if you are eating foods with many ingredients such as casseroles, soups, or stir-fries. Of course, keeping your foods simple is only part of it, and sometimes you are in so much pain or you are so frustrated that you can't think straight. 

Trust me; I have been there. So I have come up with a short list here with some hints for keeping it simple at this stage:
  • Make IC menu planning a family affair. Consulting with other family members about menu choices can increase their understanding of your condition and the foods you can and cannot have.
  • Consider including foods that might be triggers for you, but that your family can eat. It was nearly a year before I realized that I had not been buying strawberries for my family just because I couldn’t have them!
  • Stick to your grocery list. Often people walk through the grocery store waiting for inspiration to strike. A list insures that you have all the ingredients that you need for the week and helps prevent impulse buying, which can be tough on the wallet.
  • Recycle your weekly meal plans like institutions do. Hospitals, schools, and nursing homes use “cycle menus” to simplify planning. Once you have developed a few weeks of menus that you and your family enjoy, go ahead and reuse them. Save the grocery lists, too.
  • Do your grocery shopping from your computer. Companies like “WeGoShop” or "PeaPod" allow you to send a grocery order to a professional shopper who brings your order directly to your house. This can be a great time and energy saver.
  • Make two batches of a meal and freeze one for later. Everyone has days when they are too busy or too tired to cook. It is nice to have something available that you can quickly reheat.  
  • Involve everyone in mealtime activities. Establish this as a special time to spend with individual family members. Assign days when each person has a chance to help with breakfast or dinner. Have all the ingredients out for people to pack their own lunches. Even small children can help to set the table, measure ingredients, or stir batter. 
  • Simplify cleanup. Use disposable plates and utensils on days when symptoms flare or energy is limited. Line baking dishes with aluminum foil or bake food in foil pockets. Use a slow cooker to bake a one pot, complete meal of meat, potatoes, and vegetables.
 For more tricks and tips on how to implement the IC diet, see Customizing the Interstitial Cystitis Diet: A Confident Choices® Book

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!

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

Friday, September 5, 2014

What Is Your Interstitial Cystitis "New Normal?"

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 ConfidentChoices® 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 ProactivePatient: Managing Interstitial Cystitis/Bladder Pain Syndrome and the RelatedConditions
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



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 for reading Interstitial Cystitis: A Guide for Nutrition Educators and purchasing the accompanying workbook from Helm Publishing.

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Monday, August 25, 2014

Three Thoughts About How Food Affects an Interstitial Cystitis Bladder

http://www.ic-network.com/patient-resources/bladder-photo-archive/
Picture courtesy of Interstitial Cystitis Network's
Bladder Photo and Video Archive.
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 it 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.

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, 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?

The bottom line is you are still better to avoid these foods even if you are trying medications 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!

PS: Thank you to all of you who have donated to keep this blog going! If you are still thinking about it, remember, next month is IC Awareness Month. Consider making Confident Choices part of your plan! Or, if you are looking for a painless way to support our work, remember to make your purchases from Amazon.com through the links on this newsletter and on www.ic-diet.com.

Recent Amazon purchases that helped Confident Choices:

Interstitial Cystitis DVD: Healthy Body, Healthy Mind Series
Brita Sport Water Filter Bottle, Twin Pack
Desert Harvest Glucosamine & Chondroitin

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