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You Are Not Alone

During my honeymoon in Mexico, the resort town where we were staying was slammed by a massive hurricane. The hotel was badly damaged and completely cut off – no power, no communications and no way out. I was stranded without my medications, because we had expected to leave the next day and I’d only brought enough to last through the trip. Panic began to set in as I feared the terror I felt during the storm and the stress of being stranded would flare my IC. We had no idea how many days it would be before the roads and the airport would reopen.

Others around us were in a similarly frightening predicament. There was no way to even contact a doctor or get to a pharmacy, so our hotel set up a white board where guests listed their needed medications in case someone else had some to share. As I wrote down my name and the word “Elmiron” I was certain there could not possibly be another IC patient amongst the small crowd of tourists at our hotel. I felt really scared and hopeless.

A few hours later someone knocked on the door to our room. When I answered, outside stood another guest, and she had extra Elmiron! I couldn’t believe it. We spontaneously hugged and both burst into tears because we knew we shared a terrible disease, as well as an understanding of what each other was going through. My husband later told me that he found seeing us connect so touching he even started crying.

Over the next few days my new friend and I shared stories of our struggles to diagnose and treat our IC. We discussed practitioners, therapies and resources. We weighed our successes and failures using different types of pain management techniques. She told me about her frustration trying to find doctors who understood this condition. I was able to offer hope that her IC could get better over time, as mine had. There was so much to talk about!

When we were finally evacuated out of the country a few days later, we said our goodbyes but exchanged email addresses, knowing we would be friends for life. I felt so fortunate to have met her in the midst of an otherwise bleak situation, and realized during this ordeal how important it is to find community when you have IC. You are not alone, even when you feel isolated. There are others out there going through the same struggle, and we truly can help each other when we least expect it.

Paige Wallace