IN THIS ISSUE (July 4th, 2011): (View on the web)- Finding Health Insurance
- Finding Affordable or Free Health Care
- Facing Large Health Bills That You Can't Pay
- Disability Resources
- Food Programs
- Home Energy Programs
- Drug Assistance Programs
- Elmiron Shortage Update
- Living with IC Video Series - Summer Vacation Ideas, Water
- The Latest IC/BPS Research
- New Articles, Blogs & Podcasts
- Chef Dan Norton - How to maintain healthy iron levels
- Self-Help Tip of the Month - Back to the basics when treating pain
- We're Looking for MD & PT Recommendations Throughout The World
- We're Looking for Bladder Photos
- IC Support Opportunities
- New Resources in the ICN Shop
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SPECIAL "INDEPENDENCE FOR IC" ISSUE (July 2011)
The Fourth of July has come with great irony in the past few years because so many families are struggling to be independent. Not a day goes by that we don't have an IC patient call our office who has no health insurance, can't afford their medications and/or are desperate to find care. With so many patients and families struggling to make ends meet, we wanted to dedicate this issue of our on-line newsletter to finding resources that can help you find the independence and security that you deserve.
There's no shame in asking for help. In fact, we think it shows great strength and wisdom. Please use the resources that we've listed below and, of course, cruise the web for any programs that might be available in your community. If you're in the position of helping others, please take a moment and give either your time or some spare cash to a program that can help others find their independence.
Do you know of any additional programs or services that can help other patients? We would like to share that information with other patients in need. Please send us an e-mail so that we can add them to our listings! (icnetwork@sbcglobal.net)
Finding Health Insurance
The Healthcare Survival Guide - Excellent Resource
This 72 page book is a must read for anyone who may be losing their health insurance or who simply can't find coverage. The Healthcare Survival GuideTM: Cost-Saving Options for the Suddenly Unemployed and Anyone Else Who Wants to Save Money provides complete resources for finding affordable healthcare coverage and medical care, including the pros and cons of COBRA coverage, comparison-shopping for healthcare plans, lowering — or eliminating — hospital bills and finding low — or free — medical care and medications.
Available online via PDF for a limited time for FREE!
Available from Amazon.com for $6.95
Consumer Assistance Programs by State
Many states offer help to consumers with health insurance problems. The Affordable Care Act improves these services with grants that help states start or strengthen Consumer Assistance Programs (CAPs). The states and territories that applied for these grants have received funds to provide residents direct help with problems or questions about health coverage. If your state does not have a Consumer Assistance Program grant, some state and federal government offices may still be able to help you. The U.S. Department of Labor can answer questions about some employer-provided plans, for example. Your state health insurance regulator may be able to help with individual insurance policy problem. Search for Programs In Your State
Children's Health Insurance Program - Insure Kids Now!
Your child or teen may qualify for no-cost or low-cost health insurance coverage through Medicaid and the Children's Health Insurance Program (CHIP). Many parents may also be eligible. If you or someone in your family needs health coverage, you should apply. To find information about Medicaid and CHIP health coverage programs in your state, go to Programs in Your State or call 1-877-Kids-Now (1-877-543-7669).
Pre-Existing Condition Insurance Plan (PCIP)
In March of 2010, Congress passed and President Obama signed the Affordable Care Act—the new health law. The law creates a new program – the Pre-Existing Condition Insurance Plan -- to make health coverage available to you if you have been denied health insurance by private insurance companies because of a pre-existing condition. Read more or search for options in your state.
Preventive Care and Services
Under the Affordable Care Act, you and your family may be eligible for some important preventive services—which can help you avoid illness and improve your health—at no additional cost to you. Read more
Finding Affordable or Free Health Care
- Find a Federally Funded Free Heath or Dental Clinic
- National Association of Free Clinics
- Find free care through Hill Burton Free and Reduced Cost Health Care Centers
- Walgreen's Take Care Clinics - selected areas
- Convenient Care Association - an association of companies that provide health care services in retail-based locations.
Don't forget that clinical trials also offer access to free medical care and treatment often with the latest therapies under study. Please visit the ICN Clinical Trial Center for more information.
Medical Foundations
There are some non-profit foundations that provide "medical grants." They can be hard to find and you'll have to dig through the internet to find one that applies to your situation. Facing surgery, ICN member Lisa explored every avenue of support available. She searched the web for resources. She contacted the hospitals in the area looking for one that had a compassionate care program. She spent weeks researching options and eventually found a hospital foundation that covered all of their expenses. When asked, the physician also agreed to donate his surgical time.
Some foundations have wonderful, compassionate histories. United Health Care, for example, is provides grants for medical services that improve the quality of life of children. Other organizations that provide assistance include:
Easter Seals, Lions Club International and The United Way 211 Program
We encourage you to search for foundations in your community, your county and your state as well. Call your local United Way and ask if they know of any. Call your local library's research desk. Ask the hospital if they know of any outside programs. Just keep asking!!!
Facing Large Bills That You Can't Pay
Have you received an impossibly large bill that you can't possibly repay? You are not alone. ICN Member Melissa received a bill for $20,000 resulting from several medical expenses and surgery. She wrote "I don't have insurance right now and there is NO WAY I can even make monthly payments that will dent it. I don't know what to do. I feel helpless, hopeless, and to top it off, everything I have (Crohn's, Endo, IC) is flaring."
There is hope. Many hospitals and medical clinics offer financial assistance, "charity care" and even full debt relief for low income patients but you must ask about it. They won't advertise the program but, if you contact the billing department, you may find programs that can help.
As several patients offered in our support forum, the worst thing that you can do is ignore a bill. If you do, they will keep billing you and eventually turn it over to collections where it could impact your credit report. Instead, you must contact the hospital immediately after you receive a bill and explain your financial situation. Offer a payment plan, even if it is just $5 a week and be willing to provide copies of your pay stubs or tax returns. It can pay off handsomely. ICN Support Leader Kadi shared a powerful story.
A friend of mine ended up with a $300,000 bill from an eating disorders unit (she was very very ill with anorexia & nearly died several times). As an elementary private school teacher who barely made enough to live on, there was no way she could pay it back. She sent the hospital her pay stubs & a $50 a month check, which was all she could do. They cancelled her debt about six months into her payments.
Disability Information
Some IC patients have no choice but to file for disability. There are a number of different disability programs that may be applicable!
ICN Disability Resource Center
SSA Handbook - Read the Social Security Administration benefits handbook.
How to Qualify - How to Apply - Calculate Benefit Amounts
Food Programs
There's no shame in asking for help to feed yourself, your children and your family. In fact, if you go to most food banks, you'll see hundreds of families, singles and senior citizens who just need a little extra help.
Feeding America - A non-profit organization specializing in food distribution and services.
USDA Food & Nutrition Programs
Child & Adult Food Care Program
Home Energy Programs
There are a number of programs that can help patients pay for gas & electricity.
Low Income Home Energy Assistance Programs
Drug Assistance Programs
Nearly every drug company has special programs that can help low income patients purchase medications and, in some cases, give them away for free.
Partnership for Prescription Assistance (PPA)
Housing & Homelessness Programs
It's sad but true that some patients fear losing their homes or, worse, have lost them.
National Coalition for the Homeless
If you are homeless, help is available! - US Housing & Urban Development resources
Find help in your state - Listing of programs via state through US HUD.
"Living With IC Video Series" - Summer Vacation Ideas
Summer Vacation Ideas
Don't let IC or bladder symptoms keep you at home during the summer. You deserve to hit the beach and enjoy your family vacation. ICN President Jill Osborne shares some tips and strategies that you can use to make your vacation, car trip or plane flight more comfortable!
Get out of the house and have some summer fun! You deserve it!
Why Drinking Water Is Essential
IC patients are often baffled about water. How much should they drink? What can drink without irritating their bladder? Is tap water safe? Are vitamin waters safe? How about bottled water? Is it worth investing in more expensive water filters? ICN President Jill Osborne shares her thoughts on the types of waters, suggestions of flavored water brands (Hint, Metromint), how much to drink and why water intake is essential to your bladder health. She also introduces making your own Italian sodas with water for those hot summer days when you're craving something sweet and bubbly!
Elmiron Shortage Update
Elmiron appears to be trickling in to various pharmacies around the country but some patients are still reporting that their pharmacy has none in stock. Ortho Urology's website has provided no additional information nor updates on availability.
What to do in the short term? Some patients have asked their doctors if they can reduce their daily dosage to extend what supply they have until the medication becomes available again. Not a bad idea provided, of course, that your physician agrees with this strategy. Others are turning to OTC supplements, such as Cystoprotek or CystaQ, to bridge the gap.
A company based in India, Swati Spentose Pvt Ltd, has produced the first generic pentosan polysulfate (Comfora) that may soon be available to patients in the USA. We will share more information about this as it becomes available. See their new advertisement in the upper right hand corner of this newsletter!
The Latest IC Research
If you have any doubt about the future of the IC movement, look no further than at the new, dynamic research that is produced each month on new therapies, diagnostic methods and, of course, the potential causes of IC. We've chosen to highlight studies and papers that we think are particularly interesting.
- Autoimmunity to Uroplakin II Causes Cystitis in Mice: A Novel Model of Interstitial Cystitis. - study suggests that autoimmunity responses could trigger bladder symptoms.
- Are Ulcerative and Nonulcerative Interstitial Cystitis/Painful Bladder Syndrome 2 Distinct Diseases? A Study of Coexisting Conditions.
- Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States. - reinforces the new, high population stats for IC
- Sacral Neuromodulation as a Treatment for Chronic Pelvic Pain.- concludes that there is insufficient evidence to support its use as a therapy for pelvic pain.
- Hyperbaric oxygen therapy for painful bladder syndrome/interstitial cystitis resistant to conventional treatments: long-term results of a case series in Japan.
- Diagnosis and Treatment of Interstitial Cystitis in Adolescents.
- Depressive disorders and panic attacks in women with bladder pain syndrome/interstitial cystitis: a population-based sample.
- A multi-site study confirms abnormal glycosylation in the tamm-horsfall protein of patients with interstitial cystitis.
New Articles, Podcasts & Blogs
- ICA Co-chair Testifies in DC - Congratulations to Barb Zarnikow for testifying in front of the Senate Defense Appropriations Subcommittee on behalf of IC research in the military. Hoo Ra!
- How Food Can Affect A Painful Bladder - An IC blog by Julie Beyer RD
- IC and the Gifts of Friendship - An IC blog by Carin Willis
- My Thoughts On Secret Suffering: How Women's Sexual And Pelvic Pain Affects Their Relationships - An IC blog by Tali Keteri
- Meditate. Relax. Breathe. Heal - An IC blog by Tali Keteri
Chef Dan Norton
Chef Daniel Norton has taken a strong interest in helping IC patients enjoy flavorful and inspiring food despite our dietary limitations. His blog, My Food Style (interstitialcystitis.me), has quickly become a popular favorite in the IC community where you can read columns, subscribe to a weekly recipe service and submit questions to him. - Jill O.
How to Maintain Healthy Iron Levels
Do you remember the Iron Kids commercials that came about in the late nineties? Each commercial would advertise to both the parent and child using bright colors and detailed dietary information. Personally, I didn't care for Iron Kids bread, it tasted funny. As long as my mom removed the crust I could care less if I were eating Iron Kids or Magnesium Kids bread. None the less, I gobbled it down to appease my parents and to fuel my adolescent activities. Now that I am grown and have a doctor reviewing my charts, I take my dietary deficiencies more seriously.
Living with Interstitial Cystitis does not have to diminish your iron intake. There are several foods that contain high levels of iron and are still safe for you.
"Iron is important," the doc says to me. "Do you eat much iron, Daniel?" As he looked over my chart I'm reminded of how much I detest rhetorical questions. Who eats enough of anything? With a sense of humor I replied, "I keep a baggy of broccoli in my glove compartment and an ice jug full of vitamin C inside my fanny pack." The doctor snarled, and with his sloppy penmanship scribbled down some notes encouraging me to look into foods that are high in iron.
I learned that without enough iron you get lethargic and could potentially become anemic, making it difficult to fight off infections and illness. Consuming a healthy amount of iron helps brain function and metabolism. Iron can increase your workout intervals, resulting in more weight loss and improved energy. Living with Interstitial Cystitis does not have to diminish your iron intake. There are several foods that contain high levels of iron and are still safe for you.
• Meats - beef, pork, lamb, liver, and other organ meats
• Poultry - chicken, duck, turkey (especially dark meat)
• Fish - shellfish, including clams, mussels, and oysters
• Leafy greens of the cabbage family, such as broccoli, kale, turnip greens, and collards
• Legumes - lima beans, dry beans, including pinto beans, and black-eyed peas
• Gluten-free whole grain bread and rolls
ICN Self-Help Tip of the Month - Back To The Basics When Treating Pain
I just got off the phone with a lovely women back east who reinforced a critical concept of pain care: To treat pain effectively, you should treat and, ideally, resolve the source of the pain. If your pain is coming from a bad tooth, wouldn't you go to the dentist get the cavity filled rather than just take medication for years? If your pain was coming from a broken leg, wouldn't you want to get the bones aligned and set so that they could heal properly?
Yet, when it comes to pelvic pain, it's far easier to avoid the source, avoid your doctors and go straight to an easy, though short term fix, pain medication. Hey, I'm not against the use of pain medication at all. I think pain needs to be treated aggressively and compassionately and that part of that treatment should be focusing on and, ideally, resolving the source of the pain.
What makes pelvic pain tricky and frustrating, however, is that there are several potential sources of pain. It could be, perhaps, from wounds in the the bladder wall, often characterized by pain which gets worse as the bladder fills with urine that is relieved upon urination. It could be from the tight, spasming pelvic floor muscles, often represented by difficulty starting the urine stream, or a steady, achy burning pain often focused in the vagina. Or it could be from the nerves, strongly suggested when patients have positional symptoms. Patients with a pudendal nerve entrapment often have symptoms when they sit down.
If you've been taking pain medications for years, perhaps its time to reassess the source of the pain. Here are a few suggestions that I think could help.
- Have a pelvic floor assessment to determine if your pelvic floor could be part of the problem.
- Consider having the doctor take another look at your bladder to determine if Hunner's Ulcers could be a part of the problem and, if present, have them treated with a Hunner's ulcer therapy such as fulguration, laser therapy or triamcinolone injections.
- Are your symptoms positional?? Do they have an electrical or searing quality to them?? Are they shooting down a leg?? Pay close attention to your symptoms and how they may vary throughout the day and share this information with your doctor.
After having severe and untreated IC pain the first year of my diagnosis, I believe that denying treatment for pain is cruel. Patients absolutely need pain care but we also have to focus on treating the cause of pain. If your pain hasn't improved, revisit the diagnosis and ask your doctor "Could we have missed something?" - Jill H. Osborne MA - ICN President
Share your thoughts and feedback here!
We're Looking For MD & PT Recommendations Throughout The World
You've asked. You've pleaded. You've often been desperate to find a urologist, pain specialist or nutritionist knowledgable about IC. 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.
Click here to search our database
Click here for our doctor recommendation form!
We're Looking For Bladder Photos
We're collecting pictures of various IC bladders taking during hydrodistentions for educational purposes. In fact, we're trying to create the largest archive of bladder pictures ever taken that show examples of IC!
Do you have pictures to share?? If so, we'd love to add them to our database.
Scanned pictures and/or videos can be e-mailed to: icnetwork@sbcglobal.net
Pictures can be snail mailed to:
IC Network Photo Project
PO Box 2159
Healdsburg, CA 95448
New IC Support Groups & Support Opportunities
~ Find A Support Groups
New IC Support Groups
~ Join an Online IC Support Chat
ICN Support Chats have been held monthly for more than a decade and are run by a team of IC support group leaders. Join us live from the comfort of your home. Please note! Chats are free for all. No log in name and password are required. Just type in a user name and go!
When: 1st & 3rd Monday of the Month, 5PM PST to 7PM PST
Where: ICN Chat Room
IC Resources From The ICN Mail Order Center
http://www.icnsales.com - (707)433-0413
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!
Luvena Prebiotic Vaginal Moisturizer & Lubricant
Luvena is a safe and natural lubricant and moisturizer that contains pre-biotic ingredients and enzymes proven to help restore a healthy pH to the vagina. Helps eliminate dryness, unpleasant odor, and itchiness. Luvena® PreBiotic is vital to women prone to vaginal problems due to dryness or vaginal fluid change. These changes are gradual and often go unnoticed until they lead to vaginosis, yeast infection, odor and painful intercourse.
- Preservative Free with Cranberry Extract
- Helps maintain beneficial flora and correct pH
- Provides anti-yeast proteins + natural antibacterial enzymes
- Long lasting moisture barrier
Yogi Herbal Teas
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Tiger Balm Pain Relieving Patches
"These inexpensive self-adhesive patches can be a lifesaver!" offered Wendy Cohan RN in The Better Badder Book. We listened! Tiger Balm Patches are a flexible pain relieving patch whose ingredients penetrate the skin and are absorbed, stimulating blood circulation around the area of pain. Not messy or greasy and will provide fast pain relief for hours. BOX OF 5 PATCHES (4 x 2.75 inches)!
Flavorings & Waters
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