Every year, we take a moment to reflect on the previous 12 months to look for the highs and lows of IC activities in the world and on-line. Here are our 1999 choices.

Picks for 1999

1999 was a motley year of successes and challenges for the international IC community. The latest IC research is changing the very fabric of how IC may be diagnosed and treated. It was the year of the researcher and our top pick for 1999 is Susan Keay (and team) for pursuing GP 51 studies.

The power of patients to mobilize and take action to educate care providers around the world continues to be a positive change agent. Patients have gathered together both on-line and in real time meetings to offer vital support. But, we are also seeking ways to ease the dissension created by years of political infighting between IC groups and advocates. It will take courage for groups (and leadership) to let go of the past. There is much work to be done in 2000 and beyond. The more hands and groups involved, the better!

Perhaps most importantly, a growing community of physicians and care providers are now much more knowledgeable and experienced in caring for the IC patient due to the efforts of many. We have this reason, alone, to be proud of the work of the ICN and every other IC group (and advocate) in the world. Thank you for taking the time to care!

Pick: Susan Keay (& Warren, Zhang, Tu, Gordon, Whitmore) for relentlessly pursuing the GP51 studies. They have isolated a protein fragment from the urine of IC patients that appears to inhibit the ability of the bladder to repair itself. If this is commonly found, perhaps one future treatment approach for IC would be a drug which can disable this protein. Much more research is needed and they are doing the job well.

Pick: Anthony Walker, of the UKICSG, who may be spearheading a new international committee in IC. With representatives from all interested IC advocates, this group may finally move beyond the politics which have plagued IC activities to a cohesive, directed plan for IC education throughout the world. It's time to move beyond "past histories" and "ownership" to collaboration and cooperation between those who are interested in the IC cause. 2000 is a new year!

Pick: US Senators Ron Wyden (Oregon) and Jay Rockefeller (West Virginia) for sponsoring, respectively, the "The Conquering Pain Act" & "The Advance Planning & Compassionate Care Act." These bills will help promote progressive legislation for compassionate treatment of pain patients.

Pick: Physicians who are passionately interested in treating his IC and prostatitis patients compassionately!

Pick: Non profit organizations, like the Hawkins Center of Richmond CA, that represent chronically ill patients (including IC patients) through an often confusing and existing SSA disability appeals process.

Pick: The Urology Channel, for having the first message board moderated by physicians. Well done!

Pan: The internet newsgroup alt.support.inter-cystitis which, during 1999, did more to reduce the credibility of IC patients on the internet than any other IC activity in the past five years. Like many other unmoderated newsgroups on-line, a vocal minority dominated the group which then descended into a series of bitter debates and name calling efforts that continues to tarnish the support offered by the discussion group today.

Special Moments & Highlights of 1999

Saddest Story of 1999: Imagine being unable to speak and move because of cerebral palsy, communicating only with your eyes. Now imagine developing IC. How do you explain what you're feeling? The mother of this teenager could only tell if her daughter was hurting through her moans. If you think that you have it bad, try to remember this courageous girl and mother! Take a moment and write a letter to your government representative and ask for their help in promoting IC research. A good idea always starts with just one person. Take the time and just do it!

Happiest Stories of 1999: Groups of patients who have met locally in their respective towns and countries after meeting on the ICN. We're so proud that you've made new friends and are offering support to each other.

Best ICN Speaker of 1999: Susan Wells, author of "A Delicate Balance: Learning to Live with Chronic Illness." She spoke on "acceptance".. not as a way of giving into IC, but as a way of gaining health, perspective, trust and faith in your body and your own skills. Runner up: Josephine Briggs, NIDDK, for sharing insight on IC research.

1999 Memorial: Kathryn, an editor of an online humor newsletter for the chronically ill, who lost her life. We mourn the loss of any IC patient and send comfort and healing to those who were touched by this tragic event.

Most shocking story of 1999: Actually, we only heard about this in late 1999, though it occurred last year. As published by the Washington Poison Center in Seattle ("Sulfhemoglobinemia after dermal application of DMSO" ), a 43 year old female rubbed 4 ozs of DMSO to her lower belly for the treatment of IC. Within 24 hours, she became ill. Within ten days, she was admitted to the hospital with a methemoglobin level of 47% and acute cyanosis. Her fate is unknown. We know of no credible IC source that has recommended a topical administration of DMSO for IC. Her experience is an educational one for all of us. Never use your medications in an off-label method. DMSO is only approved for use intravesically and under a doctors supervision.

My personal embarrassing IC moment of 1999: Flying United Airlines to England, I filled with my travel kit with IC friendly travel strategies, including my microwave heating pad. About four hours into the flight, I brought it to the flight attendant at the kitchen area, only to be told "We don't have microwaves on planes." I was so embarrassed. As an option, they wrapped a box of steaming hot hand towels in a plastic bag, covered it with some towels. It was a great heating pad and lasted for hours.

Best new fashion statement for IC patients: drawstring pants!! No more tight waists! Hooray!

Best book written for IC patients: "A Taste of the Good Life: A Cookbook for an interstitial cystitis patient." This book is supported by most IC organizations and provides solid, valuable insight and research into the interstitial cystitis diet. This is a must read for every patient.

Most unusual urology web site: A Woman's Guide on How to Pee Standing Up. Their introductory text says "No more hovering over filthy toilets or getting poison ivy on your buns." http://www.restrooms.org/standing.html

Most unusual invention for female bladder patients: "The Travel Mate" as created by the Bathroom Boutique (above). This small, inexpensive device allows women to urinate without pulling their pants down and to urinate standing up. It's ideal for sitting in car or for use if you've gotten stuck in a traffic jam. For $3.95, it's worth a try. I admit it's strange to stand, and I laughed hysterically while trying it, but it definitely worked! http://www.restrooms.org/boutique.html

Newest IC self help strategy: Multiple purpose flannel pads (designs for men and women) for mild leakage, menstruation, or use as cold or heat compresses. Kudos to Deborah Gravelle, of Creative Options, for listening to the needs of IC patients and then making a pad just for us.

Most interesting treatment option?: Research appears to be pointing to underlying muscle inflammation as a possible cause for some of the bladder symptoms that IC patients experience. The new emergence of pelvic floor therapy addresses underlying muscle health and function. For patients who have faced muscle issues, such as leakage, incontinence or even spasms, this represents a thought, noninvasive option. Read more about it: