Saturday, May 8, 2010

Amazing Experience #2- meeting other lupies

OK, I wrote about me and Jill spending the day helping out at the Emergency Shelter for Families which was at one end of the spectrum as far as the enviroment and situation people were in. Today I am going to tell you just a little about the amazing experience I had the following weekend which was completely at the other end of the spectrum as far as the people and enviroment but was equally as inspiring to me.

I had the oppurtunity to meet and spend the weekend with several of the most inspiring lupus fighters there could ever be. We spent the weekend in Washington DC at the Mandarin Oriental which is one of the most amazing hotels I have ever spent the night in. I think it may be the only hotel I have ever seen that was even nicer than my favorite place to stay- The Walt Disney World Swan and Dolphin.

The Mandarin Oriental is truly a five star hotel and was a perfect choice for a bunch of lupies to spend a couple nights. A common thing for us lupies seems to be sleep issues- either we can't sleep or all we feel like doing is sleep. I know I have had even more trouble sleeping in alot of hotels than I do at home because for years hotels didn't exactly have the most comftorable beds. Well, the Mandarin is an exception to that rule. I have talked about how much tme and money I have invested in making my bed as comfy as possible and I have to say the hotel bed was at least as comfortable as my bed at home. Another thing we deal with is pain and I have mentioned before that one of my favorite things to help is a hot bath. Well, the Mandarin had what may be my dream bathroom- a deep well tub that was so amazing I literally spent 45 minutes in it the second night. The water came up over my shoulders and the ends of the tub were angled so that you could stretch out and relax in the tub quite comfortably. There was also a seperate stand-alone glass shower w/ the rainfall shower head. I could have lived in there!

But, as wonderful as the hotel was, there was something even more amazing that weekend. The people. It was so inspiring listening to everybody's different story about their journey with lupus and how they deal with it. There were ladies of every shape and size, every age group, and every ethnicity and evryone had a unique and inspiring story to tell. We spent the weekend talking, eating (& we ate well), and really connecting over both our similarities and our differences. It was so great to be surrounded by people who understood and who didn't ever say "but you don't look sick" and who didn't get upset if you needed to relax or rest a bit instead of going out. It was especially nice to put faces to some of the names of people who I had talked with and who I "knew" but only from online. There were alot of ideas shared with each other about what works for each of us and alot of debate about what we need to do to help increase awareness and education about lupus and I think we all came away even more inspired to do what we can to help. It was one of the most inspiring things I have ever been part of and I really hope to keep that motivation and inspiration as I fight my fight against this disease and I also hope that the connections we made in DC carry forward so that together we can share our struggles and trumphs while knowing we have people who understand.