1. Erin Thames, 28, Colorado Springs, CO (hometown), now live in Fort Collins
2. I am a chronic pain patient of Interstitial Cystitis and a few other pelvic pain diseases. Interstitial Cystitis, otherwise known as painful bladder syndrome, affects the bladder and urethra and the muscles surrounding them. Every person with this disease has different symptoms, but they include, painful urination, urgency/frequency, and pain described as razorblades, dull, sharp, uncomfortable etc...and a myriad of other symptoms. It also affects other areas in your pelvic region as you tend to tense your muscles from pain.
3. The inspiration for my artwork comes from all the beauty in the world. I see the world in photographs, that is how I look at everything. And especially since I got sick, I do not get out a ton to see how much beauty exists. The photographs are a beautiful moment in time for me to look back on and hopefully inspire others with.
4. Living with a rare disease: I'm not so sure IC is such a rare disease anymore, but it does feel like it since there are a ton of doctors who do not know about it, and it is so hard to get support and funding for research for it as well. It is very frustrating. Like most women that have IC, I have been told by a few of the many doctors I've seen that this was all in my head. While there is something to say about stress, depression, anxiety etc...combined with ACTUAL pain, they do not make a great combo. The pain I've had for almost 5 years flipped my life upside down. I do not participate in all the activities I used to. I worry about travel and how I'm "going to feel" in general which keeps me away from things I like to do as well. I've learned to live with it in most ways now, but it is very true that no one understands what it is like until they feel the same pain.
5. The most important thing for people living with a rare disease is a good support system, preferably someone with the same condition, and family and friends. Also, knowing that someone (doctors, organizations etc.) are looking for a cure, or at least the best possible quality of life for the person. And thirdly, to have doctors that are compassionate, well researched in the subject and understand.
6. My wish/dream for people with rare diseases would be similar to the above answer, knowing they are doing the best they can to live a fulfilled life with those around them advocating and working on finding a cure.
7. What I would like people to know about living with a rare disease is that it is very lonely, very frustrating, and very confusing. In most cases, you have to become your own doctor. Even when surrounded with a solid support system, it is easy to get discouraged and wonder why this happened to you? Be compassionate, for everyone if fighting some kind of battle!