I got home from the conference yesterday afternoon. It was a magical weekend, getting to be around so many other people who understand what it is like living with a connective tissue disorder. I miss all my new friends already and I wish I didn’t have to wait a full year for all of us to be together again. I was so stoked to meet and talk to as many people as I could while at the conference. I didn’t used to be so social, but I have come out of my shell a little in recent years. Also, it’s much easier to strike up a conversation when you already know you share something in common.
Yes, we do have some Marfan friends with a slight celebrity status that attend these conferences. Like I said, I was stoked to meet everyone, famous or not. I am not the fangirling type, I can have a chill conversation with just about anybody. At conference we are all just people, people with medical issues in common.
Also, a lot of people at conference have lost a parent. In their case it was usually due to Marfan or a related disorder. In my case it was heat stroke, but still, it was interesting being around so many people who understand that kind of loss. This guy, Austin, and I both have memorial tattoos for a parent so we had a cool conversation about that.
I also got to meet someone else with Gastroparesis! Katie was there with her friend Andy and we got to chatting about it. We even went grocery shopping together and both bought items in the baby food aisle! We were both like “You too?! ME TOO!” It was great. Also, thanks to Katie, I now have a new GP friendly snack food for days when my stomach is extra cranky but I want something to munch on. They are called Baby Mum Mums and they are meant to be teething wafers for little kids, but the banana flavored ones are quite good. It’s nice to have something to chew on, but it breaks down pretty quickly in your mouth so your stomach doesn’t really have to do any work to process it. Katie and Andy were both super fun to hang out with and I hope I can see them again soon.
I love you all, my many new friends! I can’t list out all the names here because the list would be a mile long, but you all know who you are and thank you for making my first conference such an amazing experience!
I hope everyone is getting home safe and sound, and without too many pain flare ups. Also, I hope the new friends I dropped off at the Marfan clinic for appointments before I headed home got good news. May they all have a good year with as much good health as possible and may I see everyone again in Houston in 2019 for the next Marfan Conference!
[photos sourced from other conference attendees, I am the one in the green wheelchair]
[ID: Four group photos from conference. Two at a restaurant, one in the hotel hot tub, and one in the main conference hall]
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