July 2013 - Our 18th Anniversary of IC Support
Trouble reading this e-mail?? Read it online here!
New IC Treatment Checklist For You! Please share!
Here's a brand new resource created for our members and subscribers. Using the AUA Treatment guidelines, we've created a three page checklist of IC treatments that outlines the pros and cons of each option. You can use it to track your treatments and discuss new treatments with your medical care providers. It's free and easy to use!
(1) Download the PDF file by clicking the image or this link - ICN IC/BPS Treatment Chart & Checklist
(2) Open the file with your computer and print it out.
(3) Check off the treatments you've done.
(4) At your next appointment, share the results with your doctor. Are you doing ALL of the first line treatments?? If not, why not? What treatments have you missed? What would you like to try? It's time to learn more about it!
Send your comments, ideas and suggestions to: email@example.com
IC Awareness Month Campaign Kicks Off Again!
The September IC Awareness Month campaign (http://www.icawareness.org) empowers patients around the world to assess and evaluate how their community is treating IC patients. Are the doctors informed? Do schools offer rest room access for children with IC? Is the community, as a whole, compassionate towards IC/BPS and pelvic pain? If not, then you can use the posters, press releases, brochures, proclamations and more that we'll be releasing in the coming weeks! If not you, then who? We urge patients to speak out and tell their stories!
Our 2013 Theme: Millions Suffer, Few Understand - It's time to talk about IC/BPS!!
Official Color: The official color for IC Awareness is TURQUOISE / TEAL. This color was chosen by IC patients in a national vote roughly ten years ago. Yet, there remains confusion. Some official lists claim that the color for IC is dark blue and some patients have mistakenly used that color over the years. At this point, we think that patients should wear the color they most closely identify with
Step #1 - Proclamations in every country, state and city
In the last few years, at the request of patients just like you, dozens of cities, counties, state and national representatives have honored interstitial cystitis patients by issuing a proclamation. It's very easy to do and a very effective way of educating your leaders about the plight that IC patients face in finding medical care and receiving treatment.
Download our ready to go proclamation and send it with a personal letter to your local representative and ask them if they would issue a proclamation to honor those patients struggling with IC in your community.
If you're successful, please send us a picture of you holding the proclamation and we'll share it with everyone! You can keep the proclamation OR mail it to us!
Step #2 - IC Awareness on Facebook
We've created Facebook badges and timeline photos that you can use throughout the month of September. Better yet, be individual and make your own pictures.
Just remember to follow our theme this year "Millions Suffer: Few Understand" and don't forget to tell people to visit the IC Awareness Month campaign website!
Tweet, Stumble, YouTube, etc. etc.
IC Awareness Month Contests Begin
Poster Contest (All Languages, Nations Welcome & Needed)
You know that saying "A picture speaks a thousand words?" We urgently need patients to tell their stories and/or share their life with IC by creating a poster that we can share! We want to see how you express your struggles and/or life with IC! We also urgently need posters using different languages including: Spanish, French, German, Russian, Japanese, Chinese, Korean, etc.
All mediums are welcome, including pen and ink, watercolor, collage, mixed media and so forth.
All posters will be added to the awareness website and may be printed for use by patients! The top three will receive $100, $75 or $50 gift certificates to the ICN store!
A – It must say IC Awareness Month and include the URL: icawareness.org
B – It must fit on an 8.5 by 11″ piece of paper
C – It should be emailed, as a PDF file, to: firstname.lastname@example.org by September 7, 2013
Facebook Timeline Image Contest
We would love to offer a selection of Timeline images that patients can pick from for the month of September! Like the poster contest above, please create an image that shares your story and/or life with IC. All languages welcome and needed so that we can expand our international outreach effort.
A - It must say IC Awareness Month and include the URL: icawareness.org
B - It should be 850 px wide by 315 px high
C- It should be a .jpg, .gif or .png file
E - Please e-mail the file to: email@example.com
Recent, Topical IC Videos, Webcasts & Blogs
The US ICA held a fabulous patient conference at the end of June featuring a stellar cast of IC experts and speakers. The web casts are available for review though you must provide your mailing address to view them.
- When Standards Treatment Fail features Rob Moldwin and Kristene Whitmore, who tackle the more difficult questions about treatments, men with IC, children get IC, hormones and more!
- Integral Approaches To Treating IC - Anna Kelly MD
- IC Diet: Friendly Fats - Barbara Shorter EdD, RD, CDN
- Safe & Effective Pain Management: The Pros and Cons of Opioids - Daniel Carr MD
- A Time for Two: Intimacy, Sexuality and IC - Jennifer Farriello MSN CRNP
- Latest in IC Research: MAPP Project - Christopher Mullin PhD & Quentin Clemens MD
- Stretch & Strengthen for a Healthier Pelvic Floor - Amy Stein PT
Are Food Sensitivities Making Your Pelvic Pain Worse?
Jessica Drummond MPT of The Integrative Pelvic Health Institute has written an excellent blog sharing how food sensitivities really can cause pelvic, gut and bladder discomfort.
Food sensitivities are a hot topic these days. It seems like more and more people are going gluten free or dairy free or soy free or something free! But why? And, what does this have to do with you, if you’re suffering from pelvic pain that’s related to your bladder, vulvodynia, endometriosis, PCOS, pelvic floor muscle spasm or even pregnancy related joint pain?
The simple answer is that food sensitivities cause inflammation by causing the immune system (most of which surrounds the digestive system) to overreact. The digestive system is very fragile. There is a one cell thick lining through the digestive system that is charged with allowing nutrients to be absorbed, and keeping toxins from leaking through the lining into the circulation. If this gut lining is injured by inflammation, an overgrowth of unhealthy bad bacteria, or stress, then the system fails and larger particles of undigested food leak through the lining. The immune system doesn’t recognize these large food particles and it attacks the large food particles (even if they come from foods that are normally healthy), creating an autoimmune reaction.
Have you taken the 2013 Facebook IC Challenge?
More than 500 patients have accepted our "double dog dare" challenge! How about you?
- Do you really know your facts about IC?
- Do you know what causes flare?
- Do you know how IC is diagnosed today, in 2013?
- Which popular restaurant chain is hard on the bladder yet has excellent and easily accessible bathrooms??
You must be a Facebook member to participate. This quiz is fun, educational and eye opening! Tablet and phone friendly! Take it here!
ICN Survey Center - A Doctoral Candidate Needs Your Help!
The Influence of Psychological Factors in IC
In a brief five minute survey, you can help graduate student Mumta Purohit (Argosy University-Washington DC) earn her degree. For her doctoral project, she is studying how IC patients manage their pain and symptoms, specifically how we cope (acceptance, mindfulness, and experiential avoidance).
She is passionate about studying IC, was a blast to talk with on the phone and could making a career out of it so let's give her a hand shall we?? Please spread the word and share this with your IC friends! Take her survey here!
If you are student who is studying IC and would like our assistance gathering data or promoting your survey/study, please send Jill an e-mail. firstname.lastname@example.org
Recipe of the Month
The (Simply Delicious: Low Acid Eating Made Simple) blog features simple, easy tips that will help you and anyone struggling with acid sensitivity enjoy food again! Sponsored by AkPharma, Makers of Prelief!
If you've found Prelief helps, please LIKE the PRELIEF FACEBOOK page!.
There's nothing quite so satisfying as an ice cold vanilla milkshake on a hot summer afternoon. The challenge? Aside from often insane calories, many of the milkshakes available from fast food outlets are filled with extra ingredients that can irritate, such as preservatives, colorings and flavorings. I find it better to make my milkshakes at home, using high quality products and low acid fruits. The good news is that you can add ice to reduce calories and dilute the residual acid of the fruit. Lactose intolerant?? Simply use coconut or almond milk products.
- 1 cup low fat milk (substitutes: coconut milk, almond milk or lactose free milk)
- 2 or 3 scoops vanilla ice cream (substitutes: coconut milk ice cream, almond milk ice cream, or frozen yogurt)
- 1/2 tsp vanilla extract
- Sugar to taste (substitute: 1/2 a frozen banana can add sweetness and thickness.)
- Your choice of fruit or fresh herb (1/2 cup of shredded coconut, blueberries or blackberries. You can even use a few fresh mint leaves!)
- 1 scoop of ice is you prefer an icier drink (optional)
- Whip cream (optional)
Place all ingredients in a blender and mix until proper thickness. Place in your favorite ice cream maker and follow the instructions to freeze. Top with whipped cream and enjoy!
We're Looking For MD & PT Recommendations in Canada & USA
You've asked. You've pleaded. You've often been desperate to find a urologist who can treat your IC. We're now collecting names to create a new database of care providers in Canada and the USA! If you have a doctor that has treated you compassionately, please share their names with us! Please visit our clinical database and see if your doctor is listed. If not, please use our recommendation form. We'll contact each doctor (your name NOT included to protect your privacy), let them know that they've received a great review for their patient care, share new IC resources with them and ask if they would like to be listed on our site.
IC Resources From The ICN Mail Order Center
www.icnsales.com - (800)928-7496
Your purchases in the ICN Shop and ICN Subscriptions fund this free newsletter, our extensive web site, on-line support chats, the support forum and our patient assistance phone line. We thank you for your support. Without you, we wouldn't be able to do what we do nor employ the many IC patients who help us. We are very grateful for all of our subscribers and customers!
Shipping in Extreme Heat
During periods of extreme heat, over 100+ degrees, we will not ship out perishables (i.e. supplements & food perishables) until the weather cools to the low 90's. When possible we will use ice packs but please note that they only work for about 24 hours. If you're ordering any perishables, please call our office if your temperature is expected to become high so that we can delay that shipment or arrange for shipping to an address where your mail is immediately brought indoors rather than allowed to sit in a hot postal box.
A few years ago, we were sitting around the table wondering what a couple could use when one partner can't tolerate intimacy due to tight pelvic floor muscles and/or pain. A quick search of the web introduced us to a new line of products called TENGA that receive rave reviews. If you would like to introduce some play into your relationship and/or have an option for those moments when your IC is flaring, this might be a worthwhile investment. Learn more!
Summer Travelling & Vacations Easier
Being prepared is an important part of making a vacation easier and stress free. Here are some travel essentials!
- Prelief - For when your eating at new restaurants
- Rest room Access Cards - To show to flight attendants
- TravelJohns - Works like a charm when you're camping or in a long car ride
- AZO Bladder Pain Relief Tablets - To reduce bladder pain and discomfort
- Tiger Balm Pain Relieving Pads - To reduce pain and discomfort
- BodiHeat Heating Pads - Delivers gentle heat during long car rides, plane flights, etc.
- Chair Cushions - To make sitting in a car more comfortable
- Hint Essence Water - When you want to drink something with flavors
- Basis Soap for Sensitive Skin - The gentlest soap Travel Size bars
Got Pelvic Floor Dysfunction or Pelvic Pain? These can help!
- Heal Pelvic Pain by Amy Stein PT (For Men & Women)
- Ending Female Pain by Isa Herrera PT (For Women)
- Guided Imagery To Enhance Healing - Chronic Pelvic Pain or Prostatitis (For Men)
- Guided Imagery for Relaxation - IC and Pelvic Pain (For Women)
- Guided Imagery to Enhance Healing - IC, Pelvic Pain or Vulvodynia (For Women)
New BodiHeat Wrap!
This is VERY cool! BodiHeat has created a new, light and very comfortable wrap that you can place right over your bladder and wear all day! It's stretchy, very very light and closes with velcro. Simply slip two BodiHeat pads inside and you'll have warm steady heat right where you need it the most!
Jill tried it when she had pelvic floor spasms. She said "It was surprisingly clever and very very comfortable. I loved having heat over my pelvis!! If your body feels better with heat, then these are definitely worth checking out. The belts will last for several uses!"
Find these items and 400 more items in the ICN Mail Order Center Today - http://www.icnsales.com