Saturday, October 31, 2015

NC Lupus Summit 2015

A phone call from my mom asking me to go with her to Charlotte, NC started an adventure.  We took off on Friday and drove the three hours to the hotel.  My mom had been asked to be a panelist for the Lupus Summit.  She would talk about her experiences in Lupus clinical trials.  My mom has been involved in trials for close to 15 years.  She believes her involvement now will help her kids, grandkids and beyond.  

We had no idea what to expect.  We were informed that mom had to show up before registration to film a one on one interview.  After registration we were off to listen to an amazing keynote speaker. After that, her panel, lunch and a class in communication.  A full day for sure.

For the two of us being such homebodies, we did well.  I got mom all dressed up, did her hair and make-up, and got myself ready.  Mom was terrified of the filming, and even more about the panel.  We were downstairs early and they did her interview early.  At least that was out of the way.  

So after a quick trip to McDonald's for coffee, we sat down to listen to the opening of the summit.  The NC president of the Lupus Foundation had some lovely words to say, but the key note speaker stole the show. The theme “Aim High” was taken from her CD.  Shanelle Gabriel proceeded to tell her story of how she came to her diagnosis. As we all nodded and smiled at the familiar themes, It was comforting to see I was not alone, but I have to admit a bit of sadness knowing all of the people were touched in some way by this autoimmune nightmare.   

She performed her song “Aim High” and I saw a room full of people, no matter race, creed or gender, feel her pain.  I was moved and of course I cried. This is a strong woman who is not letting her diagnosis stop her from living and is sharing with the world what Lupus is.  As an artist and an advocate she is an amazing woman.

Mom and I headed to the clinical trial panel and the room was packed.  It was standing room only.  There was a camera there to film this event. It will be used to help inform people who are thinking about clinical trials.  The experience of the three panelists will be used to educate, inform and support.  I am so proud my mom was a part of this.  

We got to meet some amazing people, hear some incredible stories and learn we are not alone. My mom and I learned a lot of new information.  We talked to people who have similar stories, some who have taken a different path, and even more who have managed to hold on to hope no matter how bad a flare is.  

In the end I am glad we went.  I was excited to hear that next year this will probably be held here in the Raleigh area.  I am actually looking forward to attending again.  This was an amazing experience.  One I am so glad I was able to have.  

Thursday, October 1, 2015

Row Row Row Your Boat

Grey.  That is the best way to describe the recent weather.  Oh and wet.  Grey, wet and humid.  I am beginning to think that bright orb in the sky will never return. An entire weekend of plans have been scrapped and suddenly I am left at odds.  

I enjoy weather and I love a good storm but there is a limit to my enjoyment of rain.  I think I have now found it. I don’t remember when we had our last sunny day.  My indoor plants are crying for some sun.  

My poor indoor/outdoor cats are climbing the walls, they miss their time outside.  Hell even my son and I (both lovers of the indoors) miss the ability to go outside and enjoy the fall.  80 and humid is not fall weather.  It’s just not.  Where are my crisp fall days?  Where are my chilly fall evenings?  I am sure they are somewhere.  Just not here.

Today is at least cooler.  I think it might call for a pot of chili to celebrate.  Today I will clean up the house so I can be ready to be gone all day tomorrow.  First I think I need another cup of coffee.