The IC Underground

We APPLAUD those mothers of interstitial cystitis patients who have provided us unconditional love and support. They’ve listened to our fears, comforted our tears and been a constant source of encouragement and love.  You have given us the strength and courage to face and often overcome our IC struggles.

We SALUTE those IC patients who, despite their own illness, remain steadfast MOTHERS to their children and extended family. Each day, you work to make your house a happy home. You provide comfort and a safe place for family members to land. You are amazing women!

We want to ENCOURAGE IC patients who are hoping to become MOTHERS. Don’t let IC stop you. IC cannot change your heart, your soul and your ability to love a child. You can be an awesome parent, though it will certainly require careful planning and decision making. We’ll be launching a new ICN Pregnancy Resource Center on our website in the very near future that we hope will guide you through these precious moments.

But, most of all, we celebrate each and every IC patient who continues to work hard, each day, to live your life as fully as you can. Whether you have a fancy career or stay at home, your life is important and meaningful. You have family who love you and friends who care for you dearly.

Happy Mother’s Day!!

Jill Osborne & the entire Interstitial Cystitis Network Family

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For more resources that can help you in your journey of motherhood and parenthood, such as our children’s book “My Mom Has IC: A Painful Bladder Story,” please visit the ICN Shop at: http://www.icnsales.com! Our goal is to support you!!

We can’t say it enough, there are thousands of non-profit organizations desperately looking for funds. Some are legitimate, others are less so. Some send their pitches by regular mail, others by email. Some dedicate the majority of their funds for direct services (i.e. by funding research), others are top heavy and use much of that money to pay staff.

The Better Business Bureau has an excellent guide that will help you determine if the charity you would like to support is functioning in a prudent and healthy way. They ask you to evaluate how a non profit governs their organization, how they spend their money, their truthfulness and their willingness to disclose basic information to the public.

How an organization is managed is vital. We want to know if the Board of Directors is fulfilling its role and responsibiilities. Are they evaluating the performance of the organization? Are they reviewing the budget?? Are they providing performance reviews of the Executive Director?

We want to know if that board is meeting regularly (i.e. a minimum of three times a year). In some states (i.e. California), Board meetings are also required to be open to the public and organization members or donors. One simple way to check? Do they provide a calendar of board meetings on their websites.

Most of all, we want to ensure that the Board does not have a financial bias or interest in the organization. Normally and in most organizations, board members are generally volunteers. The BBB suggests that “Not more than one or 10% (whichever is greater) directly or indirectly compensated person(s) serving as voting member(s) of the board. Compensated members shall not serve as the board’s chair or treasurer.”

In addition to the governance of the group, we also want to know if they are spending our donations wisely. The BBB suggests that 65% of the budget should be directed towards program activities. Some organizations are very top heavy with 50% or more of their budget going to salaries and administrative overhead rather than programs. This is something to be aware of and to evaluate if you want to make long term donations to any group.

Last, but certainly not least, we want to make sure that this organization is functioning as transparently as possible. Conducting business behind closed doors, in my opinion, creates doubt for a publicly funded non-profit organization. We expect financial statements/annual reports to be available directly on their websites as well as their IRS form 990’s. The IRS Form 990 is the best document that you can use to evaluate an organization because it breaks down the budget indepth, provides salary figures, board members who are compensated, how much they receive etc. etc. Always remember that tax law requires that the 990 be made available to you at your request. If it is not provided, you can file a complaint with the IRS and we strongly suggest that you do so.

So, this year, as you receive yet more letters, emails, etc. asking for donations, we hope that you’ll take a moment to evaluate that organization and ask yourself if they are using your donations wisely. If not, there are plenty of other groups that may be far more deserving.

For more information on charities, please visit the National Charities Information Bureau at: http://www.give. org

To review some IRS Form 990’s related to various IC groups, please visit: http://www.guidestar.org. You’ll have to register (it’s free). To download the IRS forms, look for the “beta version” links… which give you direct access to the forms. You might find yourself surprised.

We, at the ICN, believe that your donor dollars would be the most appreciated when given directly to IC research centers, such as the University of Maryland. We offer an ICN Donation and Giving Guide that lists promising research centers and projects. http://www.ic-network.com/mgt/donations.html

Reducing Skin Irritation and Urine Burn Common In Interstitial Cystitis and Bladder Pain Syndrome

(By ICN Founder Jill O.)

Who would have guessed that one of the most effective self-help strategies costs under $3.00 and can be found at almost every drug store. What is it? Well, before I spill the beans, let me tell you how I heard about it.

In my early twenties (years before my IC began), I developed vulvodynia - an intense irritation of the vulva and perineum. It felt like a raging yeast infection (as if someone had rubbed sandpaper over my vulva) yet, when I visited my ob-gyn, he never found yeast and usually said that I “looked normal” down there. After several visits, he explained it by saying that I had most sensitive skin that he had ever seen and that I would have to learn to live with it. So, I tried to.

Wearing pants was painful and uncomfortable. When buying jeans, I desperately looked for brands that had non irritating crotch seams. I even remember cutting those seams down so that they wouldn’t chafe so much. Thank goodness for yoga pants. Made of a cotton knit, they have enough stretch to accommodate our randomly swelling IC belly, do not bind in the crotch area and are completely comfortable.

It didn’t take long for me to figure out that soaps were very irritating, especially bubble baths. Underwear washed in most commercial laundry detergents (i.e. Cheer, Tide etc.) would, within five minutes, cause my vulvodynia to flare. Menstrual pads were drying and chafing. Riding a bicycle was impossible. And, as my grandmother passed down to my mother, I learned about wearing “white cotton” underwear, not using soap, using only baking soda in my bath water and wearing stockings rather than pantyhose.

My vulvodynia didn’t take kindly to the onset of my interstitial cystitis and, like many of my fellow IC sufferers, I struggled with uncomfortable “urine burn” - a feeling of hot urine burning the vulva and perineum. It was with great frustration that I attended a local support group for vulvodynia, squirming on the 20 mile drive to Petaluma. I was given one of the best self-help tips that I have to share with both IC and vulvodynia patients today! Buy a perineal wash bottle from your nearest drug store. Do not buy any bottles that have chemicals, cleansers or liquid in them. It should be empty. Fill it ONLY with plain, simple water or bottled spring water if you live in an area with hard water. Every time you use the restroom, rinse yourself off thoroughly and pat gently dry. If your urine feels hot, use cooler water to soothe those tender tissues.

It’s been about twenty years since I started using a wash bottle and my vulvodynia symptoms now rarely appear. It has reduced my incidence of UTI’s and has an unexpected benefit of being very soothing after sex. It was $3.00 well spent. If you can’t find a bottle locally, we offer them for sale in the ICN Shop . Look for it under “restroom supplies.”