"Suffering the Slings and Arrows of Outrageous Fortune"


As the hours countdown, I am getting more and more excited about the EDNF Learning Conference this weekend. I wasn’t able to go the last two years – in 2010, we had just realized that Em had EDS and were a long way from an official diagnosis. Last year, Em was way too sick and money too tight to even consider heading to Baltimore for the conference. So, I am beyond thrilled to be able to go this year. (Thanks Mom and Dad!)

Andrew and I will be heading out for Cincinnati tomorrow afternoon and returning Sunday. We are definitely looking forward to a weekend away together. To be honest, I don’t think that Andrew is really looking forward to the conference portion, in fact, he might even be dreading it. He is living in a certain degree of denial and the prospect of dealing with ‘feelings and stuff’ is not particularly pleasant. But, I am hoping he learns a lot that will help him deal with his own issues and better understand what Em is going through. There will be a lot of technical medical stuff thrown at us and, while emotions are not his forte, he is quite comfortable with the language of medicine, so that should make the weekend easier for him.

Em will join us for the day on Friday, so she can participate in the kids/teens program. My parents will bring her down, hang out in our hotel room and take Em home whenever she is ready to go. We are hoping that she is able to get there fairly early, can stay all afternoon and go to the pizza party that evening, but we will have to play that by ear. She has been dealing with bouts of low blood pressure recently and feels pretty rotten during them, so with a little bit of luck, she will feel ok on Friday. No doubt she will be utterly exhausted for several days afterwards, but I think it will be worth it. She is very excited about the presentation by the aquarium (Newport Aquarium, I assume) and about seeing the service dogs by Canines for Disabled Kids. (Did I mention she loves animals?) Personally, I am jealous that the kids get their own Q and A with Drs Pocinki, Levy and Tinkle. I think she is going to have fun and, hopefully, learn a lot as well.

She is a little anxious about it, but I think she is looking forward to it: she is just starting to understand that at the conference, she will not be unique. Her wheelchair will be one of many. No one will stare and everyone will be dealing with the same issues that she faces. She may even make some friends. I think she is at a great age and in the right place mentally right now to really benefit from going to the conference.

She is the most anxious about me leaving her home for the weekend and she is not the only one. The last time I left her for several days, she ended up with a severely sprained ankle and immediately developed RSD – we ended up rushing home from 8 hours away to take her to the ER. So, my mom is a little nervous to be responsible for her, Em is always anxious when I leave and, to tell the truth, so am I. But, I know she will be fine and we are only a couple hours away if she needs us. This will be good for all of us!

I am hoping for the best and looking forward to a great weekend. I have a lot of printing and packing and preparing to do today before we can leave tomorrow. I have no idea if I will be able to post while I am at the conference, but I will certainly try. If not, I am sure I will have lots to talk about when I get home!

Hope to see you this weekend – if you will be there, be sure to say hi!



Comments on: "Pre-conference Ramblings" (4)

  1. I am so looking forward to hearing all about the conference!! I wish I could have made it this year.

  2. shari E said:

    I’m so glad you and your family are going to make the conference! My husband and I will be there too, maybe we will have the chance to meet in person. Sharilynn5 from Inspire.

    • Sharilynn,
      It would be great to meet you in person! I am so looking forward to the conference. But, I haven’t started packing yet and have loads of laundry to do yet… Ack!! See you tomorrow or Friday!

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