A bubbly blog about boys, bleeding, and the basics between.

Saturday, November 12, 2011

NHF11 - The Rest

So, Life grabbed me by the ba... I mean my bootstraps and spun me around for about a week so I apologize for the EXTREME lateness in this post. I am going to separate it into two posts, this one finalizing the actual meeting and than another explain my CRAZY trip home followed by this week of craziness consisting of a casino trip, meeting Tyler's Cousin, and a trip to see my sis in Conn to see my bestie Melissa in CABARET! (She's fierce y'all!)

Okay. So lets start with Day 2 of the meeting. I don't even know where to begin on this amazing day! I was originally planning on waking up extra early and attending the Pfizer Symposium on Champions in Hemophilia, but I over slept... Me?!?!? Oversleep?!?!? Never... So after a delicious breakfast of coffee and a bagel, I attended the seminar on The Legacy of Ryan White led by his mother Jeanne White-Ginder. For those of you who don't know who Ryan White is, I highly recommend reading about him online. Just search Ryan White on Wikipedia. You'll find a lot. Anywho, it has been a long time since Mrs. White-Ginder has been involved in the Hemophilia Community, and I know that I am happy she she is back... Plus she's besties with Elton John so that makes her awesome!

Sorry for the awful pic.
I was far back :-(

It was really inspirational to hear her talk about the trials that not only her son went through, but that she went through as well. It was a no holds barred look at not only the way her own community in Illinois looked at her, but also the way the Hemophilia community looked at her. Jeanne stated that when she spoke for the first time in public with Senator Kennedy that "for the first time (she) had a voice too." This dark time in hemophilia history is awful, and it was amazing to get some insight from the woman whose son became the unlikely face of a disease that has effected so many people worldwide.

Okay, so after I stood under one of those bathroom blowers to dry my eyes off from all the crying (What. Me? Cry?!?!), I headed over to an advocacy meeting. Now, here's the funny part. I thought it was going to be about advocating for ourselves. WRONG. It's about advocating on a national level. So heathcare reform and government things that flew so far over my head I think they made it back to NY before I did. I wish I had something to write, but I didn't understand any of it. Hopefully Washington Days will help me with that. HAHA

Then after lunch, there was a really interesting session called Lessons Learned From the Decades. We heard from an older hemophiliac, a middle aged hemophiliac, and then one around my age... It was interesting hearing from these three gentlemen (Robert Edrington, Ken Hitcher, and Matt Brei) and about how differently they all grew up. From Robert having an appendectomy at age 10 in 1951 to hearing the 5 rules that Ken set up for himself after a harsh battle with Hep C, and hearing Matt discussing his caution on disclosing Hemophilia and hitting his insurance cap. It makes me lucking that I grew up when I did, but at the same time, these little whipper-snappers younger than I am have it EASY with all their prophylactic treatments. ;-) 

I then walked around and saw a bunch of the exhibits.

Baxter had a cool exhibit.

Pfizer showed videos and I made a medic alert!

Biogen Idec has an AWESOME exhibit with virtual reality games and awesome water bottles ;-)
WOOT! Affinity Biotech!

Who is that sexy beast at the Pfizer booth?

I got a lot of cool trinkets and had a blast checking out all the new technologies. I'm even thinking of switching medications! (Thanks Pfizer...) I'll let you know how that goes in a later post...

But the COOOOOOLEST part of the whole exhibit was getting to meet....

No. That's her on the RIGHT! Duh... Anywho, she's an awesome chick and I think she's uber talented. And I can now die happy because I have hugged Ms. Swan and she has assured me that I "look a like aman." I've been stressing about looking like a man for years so.... thank God for that. ( I SAID I'M ON THE LEFT! Ugh...)

So, that evening I was invited to another dinner with Biogen Idec, which although a lot of fun, is kinda boring to write about because it was just getting to know a bunch of cool peeps and talking about PSU. (Still not blogging about it... nope.)

But BEFORE dinner, we went to SPARK. This awesome event hosted by Michael Shultz and Affinity Biotech. It was kind of like sketch comedy at its finest and I wish I could have stayed longer so I had more to talk about. They were all just awesome.

We then went back to the hotel bar where I drank a beer that was, literally, larger than my head and passed out in a chair in the lobby and Lee had to bring me to bed... Another typical Friday night....

So I actually woke up relatively refreshed and embarked on another day of learning and loving. Yeah, the two most important L's. Except maybe Lindt. As in Lindt chocolate. That shit is GOOOOD. Anywho, day three consisted of an awesome event about Aging and Hemophilia. It was fascinating hearing about all of the new information that doctors have discovered about Hemophilia later in life now that life expectancy has gone up... Medical professionals are speculating that by 2050 over 20% of hemophiliacs will be over age 60, compared to 2% of today's hemophiliacs being over 65. A STAGGERING statistic. Dr. Anne Greist also discussed the misdiagnosis of things such as kidney and liver disease since hematuria (blood in the urine) can happen normally as a hemophiliac and we sometimes just push it under the carpet. This session made me realize that it is never to young to start working about your aging health.

After that I attended the advocacy meeting I WANTED to attend with Ryan and Sara. It was the last session I attended in the conference so I think we all were a little punchy and giggly. It was fun. So this meeting was awesome because we learned how to really speak to our doctors and what our rights are and aren't. Danna Merritt, MSW was probably my favorite speaking of the entire meeting.

After the conferences it was time for martinis with Matt, Sara, and Ryan and then off to get sexy for the final dance. It was a BLAST. There was a DJ, the Blues Brothers, and we could even get a flipbook made! 

A Still Shot from the FlipBook. I love my hat ;-)
The rest of the night was a big blur. I drank a lot, went to the BEAUTIFUL hotel where my boyfriend's best friend from high school is a mixologist and had an AMAZING Vesper (shaken.... not stirred). I then met up with my dear friend Wesley from High School (he was class president), and a bar called Epic? Maybe? And then back to the hotel where we raided a mini bar and passed out.

So that was NHF11! WOO-HOO! I made some amazing friends and some lasting connections. I also got to reconnect with some people that I haven't seen in a while. This meeting really gave me a new outlook on embracing my illness in a way I never thought was possible. I can't wait until next year! And keep your eyes peeled for my next post where I discuss how it took my almost 2 days to get home from Chicago. Yes... it's a doozy!

Till we meet again...

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