Monday, December 26, 2011

Navigating the Internet for Health Information (Part 4)

message boards for intersitial cystitis
(This is the final part of a four part series on navigating health information on the internet. Here are the links to Part 1, Part 2, and Part 3).

As I was researching the information for this series, I found a great post written by Jill Osborne, President and owner of the Interstitial Cystitis Network addressing some of these same basic topics. A few of these things are a repeat of what I said previously, but I thought this was a great summary!

FACEBOOK SURVIVAL STRATEGIES by Jill Osborne, MA

Here are some important survival strategies for ours, and any other, health related web communities, especially the wild wild west of Facebook.

  1. A message board is a place for you to meet others. It is not, however, a substitute for medical care and consultation. While other patients may have strong opinions about therapies, tests and procedures, they cannot and should not give you medical advice. If you have any questions about your medical care, your physician is the most important person to consult with.
  2. Be a cautious, educated consumer. Beware of any patients and/or websites (i.e. acupuncturists, herbalists) offering personal consultations and herbal products by phone who suggest that they can heal, cure and help you recover from IC. We have received a growing number of complaints from patients who feel that they have been bilked for hundreds or thousands of dollars. When in doubt, ask for proof, a research study that proves that their product or service works specifically with IC. If they haven't invested their own money in proving their claims, why should you?
  3. Build your IC knowledge from multiple sources. Yes, patients can have excellent strategies to share but they can also be biased. There are several excellent magazines & books will help you understand IC therapies, pain care, diet and more. These are reliable and excellent resources for your IC information. We recommend the following:

* The IC Optimist Quarterly Magazine
* The IC Survival Guide by Robert Moldwin MD
* Confident Choices: Customizing the IC Diet by Julie Beyer RD
* Confident Choices: A Cookbook for IC and OAB by Julie Beyer RD
* A Taste of the Good Life: A Cookbook for an IC Diet by Bev Laumann
* Ending Female Pain by Isa Herrera PT
* Heal Pelvic Pain by Amy Stein PT
* IC Naturally by Diana Brady, MA, CNC
* The Better Bladder Book by Wendy Cohen RN
* The Happy Bladder Cookbook by Mia Elliot
* The Happy Bladder Christmas Cookbook by Mia Elliot


These are available for purchase in the ICN Shop (Disclaimer: The mission of Confident Choices is supported by a small commission if you purchase these books using the previous links.)

4. IC is very individualized. A small percentage of ICers may have extreme symptoms, while others have none. Most of us live comfortably in the middle. We all, however, have good and bad days. If someone replies to any of your postings in a negative way, please remember that it may have absolutely nothing to do with you. That patient may have had a horrible day, be in pain and be very frustrated.

5. Your personal safety is important. Do not give out your phone numbers or identifying information freely. Keep your on-line cyber friendships in perspective and do NOT get involved in their personal problems. You should never send anyone money or medications. It is not your responsibility to fix their personal, family, or financial problems. Always encourage patients who are struggling to call their doctors.

6. Under no circumstance should you libel or slander any physician, medical care provider or any ICN (facebook) user publicly. If you do so, you endanger yourself and possibly the ICN or facebook page "owner" to legal action. Remember, your experience with a physician may be dramatically different from others. Please do NOT attempt to influence the relationship between a patient and a medical care provider in a negative way.

7. ICers who feel better usually don't post that they are feeling good, yet there are thousands out there who are. Carry that thought with you as you read any sad or depressing messages. Don't let negative posts depress you. There are many more positive stories beneath the surface, if you just look for them. If you feel overwhelmed with what you are reading, take a break for a days and catch your breath. It is okay to leave and then come back. Remember, it's JUST people talking.

8. Your real life is always more important than cyberspace. Family and friends who can be physically with you should always come first.

9. Remember the on-line theme of "debate the message, not the moral character of its poster." If someone writes a post which you find hurtful, please contact ICN leaders or facebook immediately so that we can review the post and possibly delete it. Please help us keep the ICN forum (and facebook pages) a safe and supportive environment by reporting if anyone is bothering you.

10. Don’t let desperation drive you to rash choices. There are now many therapies available that can help you control and manage your symptoms. If you’re not where you’d like to be, start again with the basics. Are you following the IC diet? Have you tried bladder coatings, rescue instillations, antihistamines, antidepressants?? If not, read up about it, talk with your doctor and explore your options! There is hope!

Once again, thanks to my dear friend Jill Osborne for her tireless efforts in supporting IC patients around the world!

Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder



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Thursday, December 22, 2011

Interstitial Cystitis Patients: Breakfast! Spinach Quiche!

spinich quicheChristmas and other holiday mornings can be crazy and even stressful with all of the fuss and fun. Prepare this simple quiche ahead. Pop in the oven when you are opening packages and soon the smells of breakfast will fill the house! Serve with fresh berries making Christmas morning savory, simple, and special!



Spinach and Feta Quiche

Ingredients
  • 2 (10 oz.) pkg. frozen chopped spinach (thawed)
  • 3 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.
Broccoli and Cheddar Quiche: Substitute 1 cup frozen broccoli florets for the spinach and 1/2 cup shredded white cheddar cheese for the feta cheese.

Author, Speaker, Patient Advocate


http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 Bored with the IC Food List? Try New IC Recipes!

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

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



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Tuesday, December 20, 2011

Navigating the Internet for Health Information (Part 3)

Good friends can be valuable
We finished Part 2, talking about using your common sense. This goes for the "relationships" with the people you meet online too! I know, I know, this is the second decade of people having computers online in our homes and offices, and everyone should know to keep their private information to themselves when "talking" to other people online. Common sense, and following a few basic safety rules will keep you and your family safe as you navigate online.
  1. Make a commitment to anonymity....at least at first. "Lurk" for awhile as you read online message board or facebook posts. Use a masked name and don't use your real picture until you are quite sure the forum is private. Although I used the nickname "Julie B" from the beginning on the ICN message board forum, I didn't disclose too much information right away. Now, of course, I am a semi-public figure because of the books I have written, but I am telling you to do as I say and not what I do. :-) Keep your personal email, phone number, address, and full name to yourself.
  2. Try to assess the personality not only of the individuals but of the community. Look for positivity and encouragement, even though you know interstitial cystitis/painful bladder syndrome can be a very depressing situation. Remember, people who feel good are not as likely to post frequently, so there may seem to be many more desperate people than there really are in the community of IC patients.
  3. Carefully research all information you read and advice you get from online forums. For example, I have seen too many cases of patients who whittled down their food choices to only a dozen foods because they refused to eat any food that any one person said gave them a flare. Learn from others, but always discriminate whether the information applies to you or not. Food sensitivities vary so much from individual to individual, that it can be dangerous to limit your food choices unnecessarily. For more guidelines on how diet can help, see the IC Food List.
  4. Talk about potential treatments with your physician before you try anything on your own. Many patients, myself included, were clued in about various treatments and medications by other patients, but it is important not to act on your own. One person's medication could interact with another condition or medication that you have. It doesn't mean the information you gather is bad, just be sure to check with your physician before you try something.
  5. Finally, although I don't want you to be afraid to make friends online, I also don't want you to forget the people in your "real" life. I have to say two of my best friends today are people I met way back in 1998 when I first found the ICN forums, but that is a rare situation that is likely precipitated by me being so active in the IC Community. Your family, your friends, your church community, your co-workers, and your neighbors are the people in your life on a daily basis. Real is always better than virtual. It really is.


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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Saturday, December 17, 2011

Navigating the Internet for Health Information (Part 2)

Searching for good information online can be tricky
As mentioned in Part 1, the volume of online health-related information is astounding. Almost anyone can research a health condition, nutrition, medications, treatments, or alternative therapies with a few clicks of the mouse. However, can you separate good information from that which is worthless or even potentially dangerous, especially about diseases like interstitial cystitis/painful bladder syndrome?
  1. The first question to ask? Who owns the site and where do they get their funding? Financial resources can sometimes influence content. Is there a name, address, and phone number you can use to contact the website owners? Is the website information current?
  2. Second, does the site or company defines the disease properly? In the case of IC/PBS, does the disease description match what you know about the disease? Is the website promising a "cure" or "quick fix" when there is none? (At one point there was an e-book being sold for more than the cost of my books, that basically said a low-salt diet could cure IC. Someone made a lot of money from some very desperate people giving them bogus information!)
  3. Does the information on the website seem reasonable or does it "warn" against conventional treatments or products that you know to be helpful? In the case of IC, there isn't a one size fits all treatment plan. It is very important, in fact, to individualize treatment and it may take weeks or even months to put together a plan that works for you. Most quality health information sites are not afraid to link to other websites to provide the reader with as much information as possible to help themselves.
  4. Does the website misuse information from research studies to make a point, or do they make overly-dramatic statements that are not supported by research? Or, does the study walk you through research studies to help you understand the realistic implications of the information? Also important, are the studies reviewed on the site "peer-reviewed" or published in "peer-reviewed" journals? Are the studies reproducible?
  5. Does the website gear most of its information simply to sell a product or service, or does it seem to be well balanced with other information that can help a reader? Conversely, are the products or services recommended by other well respected sources such as the ICN and ICA?
  6. Ask what the credentials are of the website's authors. How involved are they in the IC community as a whole? Are they medical professionals or do they consult with medical professionals about the material they publish? Do they "listen" to the patient community to help push the boundaries of what we know about the disease and its treatments?
  7. Finally, remember, if it seems too good to be true, it probably is. Before making a health-related change based on Internet information, discuss it with your physician. Your doctor knows your condition the best and can help you evaluate your options.
PS: Some will argue that only websites that are .gov, .edu, or .org provide legitimate information. I will argue heartily against that! Consider WebMD, one of the largest, most respected health related websites online today. Then there are many .org websites that provide very questionable information. In the case of interstitial cystitis, the ICN is one of the most comprehensive websites on all things IC. And, I would hope that you find the information here and on www.ic-diet.com to be valuable! So it goes back to using your common sense!

Author, Speaker, Patient Advocate

Be Confident in the Information You Read Here!

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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Wednesday, December 14, 2011

Navigating the Internet for Health Information (Part 1)

finding information about IC diet on internet
When I was first diagnosed with interstitial cystitis, I was overwhelmed and immediately became isolated. No one I knew understood what I was going through, and I had no way to learn more about this insanity that quickly enveloped my life with doubt and uncertainty. Then, I discovered the World Wide Web and the isolation fell away as I learned that there were others in the universe that felt like I did.

Sorting out information on the internet can be tricky; however. It became obvious that many people out there just wanted to take my money and didn't have any more answers then I did at the time. On the other hand, quality websites eventually made themselves known. Visiting the Interstitial Cystitis Association and the Interstitial Cystitis Network online became a daily task for me, connecting me with information, and in the case of the ICN, a wonderful supportive group of people. I read, I learned, I "listened" to the wisdom of veteran IC patients who had navigated the journey before me. I could research different treatments, and be assured that the doctor I was going to was a very well respected physician in the IC community. I also got my first taste of the IC diet.

Most important, when my bladder was flip flopping at 3 am, I could log on to the ICN online support group and find someone there who would answer my questions or simply give me a cyber hug. It was amazing to me that those "hugs" made a difference. It didn't take long for me to realize I had some real friends out there in the universe. To this day I recall the friendship and kindness shown to me by Jill, Donna, Diane, Lesa, and my dear friend Yvette.

As a reminder, that was in 1998. Wow, over 13 years ago! Do you remember when you first got "online?" Did you have to wait 4 to 5 minutes for a Web page to load like I did? Did you count your minutes on AOL so that you didn't go over budget? Thank God it isn't like that for most people with IC today. Unfortunately, along with the good, there are many more websites and "resources" that a person has to wade through. What is good information? What is bad? How can you tell the difference?

Author, Speaker, Patient Advocate

Need Quality Information about Interstitial Cystitis Diet?

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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Sunday, October 30, 2011

Am Interstitial Cystitis Bladder Safe Treat for the Holidays! Blueberry Coffee Cake

Blueberry coffee cake ic recipeA new reader asked about the recipe for this blueberry "pie". It is actually a picture of Blueberry Coffee Cake! What a great recipe to keep handy for the holidays. It makes a great dessert also!

What IC recipes do you have that you would like to share? Post them as a comment here, or email me at NutraConsults@aol.com and I will share them with others! Take a picture if you can!

BLUEBERRY COFFEE CAKE

2 c. Bisquick
2/3 c. milk
2 tbsp. sugar
1 1/2 c. fresh or frozen blueberries
1 egg

Spray 8 inch square pan with cooking spray. Mix above ingredients except blueberries. Spread in pan. Sprinkle blueberries evenly over batter. Make sure frozen berries are drained very well. Put topping over berries.

TOPPING:

1/3 c. Bisquick
1/3 c. sugar
1 tbsp. cold butter
1/2 tsp. cinnamon

Mix topping ingredients until crumbly. Sprinkle over berries. Bake at 350 degrees for 30 to 35 minutes. Serve while warm.

Author, Speaker, Patient Advocate


http://www.amazon.com/exec/obidos/ASIN/0976724626/ref=nosim/nutraconsults-20 Looking for More Interstitial Cystitis Meal Planning Ideas?

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

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



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Friday, October 28, 2011

Get the Flu from the Flu Shot?

Nasal spray for flu immunizations
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 are pathetic of that year. Pale and blotchy faces with dark rimmed eyes.

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

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

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



Author, Speaker, Patient Advocate

Helping Yourself 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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Wednesday, September 7, 2011

Is It an Interstitial Cystitis Flare or a Urinary Tract Infection?

painful bellyFirst, a quick story. The winter after I was diagnosed with interstitial cystitis, my husband and I drove our three kids from Michigan to Florida's Disney World for a vacation. After making all of the plans, packing everyone, helping my kids study for exams, etc I was feeling horrible--my bladder felt like it was on fire with the pain. I basically chalked it up to a nasty IC flare because of the stress and busy-ness of packing, etc. Well, about half way to Florida I got very, very sick. I was nauseous, trying not to stop every half hour to pee, and was near a mental breakdown because of the urinary pain. I was taking Pyriduim and Vicodin by the clock.

We got to Ocala (about an hour from Disney), and I couldn't take it anymore. I HAD to go to the hospital. Ever the "good mommy" I made sure everyone was settled in a hotel with a pool BEFORE I drove myself to the hospital a few miles away. I was getting sicker by the minute and after the fact realized I had no business behind the wheel of the van.

When I got to the ER, they could tell I was in rough shape (more than I knew myself) and took me right back. I had a male NP who examined me. He listened to everything I had to say, actually was interested to learn something new, then took it upon himself to call the Interstitial Cystitis Association to find out more. In my condition, I didn't want anyone poking around "down there", but I have to say he gave me the gentlest pelvic exam I ever had. When my labs came back I was off the charts with a bladder infection. After twelve hours on an antibiotic I was feeling brand new and our vacation was not disrupted after that.

I couldn't believe that with everything I was experiencing I didn't recognize that I had an infection. I had hot foamy urine, I had a fever, I was nauseated, and as I said, almost mentally insane with the pain. I was trying to be as stoic as possible about it all, so as not to ruin anything for the family. But, if I had waited any longer, I could have ended up with a kidney infection or worse.

I think the most important lesson I can pass on to you is to see a physician as soon as you think something is wrong and different than your usual bladder symptoms. You can buy UTI test kits to use at home, but even if the test shows a bladder infection, you must see a doctor to be prescribed the correct antibiotic. Don't be shy; ask for a "culture and sensitivity" to be done on your urine sample to be SURE that you are getting a drug that will most efficiently fight the infection you have.

I do think it takes some time to relearn our body's signals, but it can be done. Although I still get urinary tract infections occasionally, more often than not I catch them before they get too bad.

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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