Guess where I am? I feel like Carmen SanDiego right about now. (1990’s joke)
If you guessed Jacksonville, Florida then give yourself a gold star.
This may not sound like much but you can imagine if your particular illness only afflicts 2-4 people per million worldwide. Your chances of meeting another person with your illness is slim. The greatest part of the conference, for me, is the chance to meet others with Vasculitis and in particular Churg Strauss Syndrome and just spend some time listening to each others stories and learning what medications may work or what some non listed side effects of some medications have happened to people. Finally you no longer feel like the Zebra in the sea of horses. You ARE with your herd and it is wonderful.
My trip to the conference wasn’t without my usual amount of craziness. I came out to Florida a few days early and while driving at night from the airport in Orlando I manage to hit an Armadillo. Who ever hits an armadillo? Let’s just say, Chevy 1, Armadillo 0. Knew I should have gotten that added rental car insurance.
I was able to spend a few days with my parents in Florida and then headed for Jacksonville. Excitement was definitely building as I would check my phone and see people posting as they checked into the hotel. It was very exciting to see who was there already and trying to make plans to see them. After I arrived I quickly was able to make contact with a few people from the Vasculitis Foundation’s Facebook group and we met up to go out to dinner. Conversation was great and it felt so weird to be on of the ‘old timers’.
While I was listening I remembered those scary first few years and how it was all consuming and I never thought I would be around to see my kids graduate High School. I realized how important is all that people with ALL types and ALL experience levels of vasculitis come to these conferences.
I think sometime we feel like we ‘know it all’, ‘seen it all’ and ‘experienced it all’ by the time we are nearing our decade of Vasculitis. What we may forget is how much we needed mentoring and assistance during those early years and how we can now give back and help out the ‘newbies’. Maybe we can’t give them the magic pill but we can give them hope, that we continue to go forward. We have full lives and wake up putting one foot in front of the other and move forward. Is it easy? ” Hell No!” but we do it because we all have hope for the future and the discoveries that are happening in medicine and in the field of Vasculitis. Are we cured? No. but we still have hope and can pass on caring and compassion that you will get through it and life goes on.
If you are at the conference I can be found Friday morning at the sign in table. Looking forward to meeting and probably not remembering many people’s names. It is a pleasure to meet you all.
Posted in Uncategorized by karen in wonderland with 3 comments.