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...

Friday, November 11, 2011

NHF11 - Day 1

Okay. So this is take two. I had a really hard time with my blog this morning so let's hope this works better. (It's a new iPad app).

Yesterday was such a fun day for NHF11! I woke up in the morning, after a beautiful nights sleep, to bluebirds pulling back my sheets and bunny rabbits bringing me my slippers. okay. So I didn't wake up like an animated princess, but it was still a great sleep.

After getting dressed, and I looked fabulous might I add, I headed down to the Biogen Idec Advisory Board and ate some delicious watermelon. Anywho, since it was a confidential meeting, there isn't too much that I can tell you, but I feel like I can discuss thongs that have been mentioned in the literature. Biogen Idec is working on a fantastic new factor product for both Hemophilia A and B that is longer lasting. Although data is still being collected, it really appears to be working. For information on the really smart important parts of the science, check out the Biogen Idec Website.

Since it was a super secret meeting and if I talk about it too much birds will come down and attack my jugular, I will now move on with my post...

Okay. So, after my fantastic meeting, I met up with some friends I haven't seen in a while, and I met some new friends as well as seeing Matt Stinger and meeting Ryan Rotenberry were huge highlights yesterday.

I then went to the Opening Meeting which was truly inspirational. Val D. Bias spoke with such eloquence and passion it was hard not to be moved by his words. He also brought up on stage Jeanne White-Ginder, the mother of Ryan White, and that brought tears to my eyes.

After Val left the stage, Alex Borstein, of Family Guy fame, spoke, or should I say performed. Not only does she have a history of Hemophilia in her family (who knew), but she also sang some selections from HEMOPHILIA! The Musical, which consisted of her changing lyrics to famous musical theatre pieces. Needless to say, I was rolling on the floor.

After the meeting I checked out the exhibits, but I will post pictures on next blog post so stay tuned.

After that came SOCIAL INFUSION! It was amazing to go to a random bar in Chicago (English) and finally meet face to face some of you that have been reading my blog and following me on twitter. We tossed back a couple beers and all talked and had a blast Search #SocialInfusion on Twitter for pics since I didn't take any. haha.

So much fun, I can't wait for Day 2!!!

Till we meet again...

Thursday, November 10, 2011

NHF11 Pre-Day 1

So here we are. I feel like I have been waiting for this week forever... MY FIRST NHF!

I remember being a little boy and wanting to go to a meeting and it just never happened. And now I'm here, reconnecting with old friends and meeting some new ones!

If you followed any of my Hemo Field Trip posts you know I write about the previous day, but please feel free to follow my twitter page @TheHemoHomo for live updates.

Yesterday was kind of boring. I got up early to take a flight here, and then got to the BEAUTIFUL hotel, the Hyatt Regency. Just look at this view!

After getting to the hotel I had a couple hours to nap and cry about everything happening at PSU. (I'm refusing to talk about it).

I called up my dear friend Vanessa Jones and we had cocktails at a bar that I never should have walked because the weather here in Chicago was FREEZING! (I dunno how Roxy did all those dances in so little clothes).

Anywho, after that I went to the welcome dinner for the Biogen Idec Advisory Board meeting which was really a lot of fun. Lee was there and I always love getting to chitchat with that boy.

I then went back to the hotel and went to bed.... Okay... So lots more tomorrow! Keep checking back in!

Till we meet again...

Location:E Wacker Dr,Chicago,United States

Monday, November 7, 2011

Why the hate on Kim?

Okay. So the Hemo comes out a lot on this blog and it's time for a little Homo.

Why the hate on Kim? I understand that as a 'mo I'm supposed to be angry that she's getting divorced and that her getting a divorce is a prime example of "the sanctity of marriage" being a ridiculous reason for the fight against marriage equality, but come on. KIM KARDASHIAN?!?! That's the best new argument you have?

I saw another article, now a couple of days old, on Advocate.com explaining about how Kim kind of apologized to the LGBT community, but my question is, why should she? Whether Kim Kardashian married for love, money, or publicity really doesn't matter. I have a hard time believing that the televised circus that was her wedding was just a slap in the face to the LGBT community; a "let's show them what they can't have" moment.

I think that by showing outrage in a negative manner to a marriage gone wrong is extremely catty and just paints the LGBT community in an extremely negative light. Instead of putting the straight community down for misusing the rights that we so desperately crave, we should just keep stating how it is our RIGHT to be able to get married and that we already have a working marital model so why not be able to get married?

I would like nothing more than to be able to marry my partner so that when I am having a bleeding episode in the hospital, I know that he can sit with me. Or so that we can join under the same insurance plan, or get a tax break on income when we finally move in together, but putting down a celebrity's private marital struggle doesn't help us get the rights that we deserve!

I guess I just don't understand how putting other people down is going to help us get what we want. Bullying has become a major issue for LGBT youth and what example are we, as a community, showing by putting down a person for a private situation, although it has been made public by her own accord.

I just think we should kill people with kindness, but that's just my opinion.

Till we meet again...

Friday, November 4, 2011

BOSTON... Well.. Almost.

So I never realized how dumb I really was until I landed in the world of the super smart. O. M. G. Staying at a hotel sandwiched between Harvard and MIT really made me realize how little I contribute to the world.... And then I spoke.

Okay. You're confused. Good. That was the point. I should probably start at the very beginning. (A very good place to start. The hiiiiiillllls..... Okay. I'm done).

So last night, after the show, I hopped in a Towncar and was driven to Cambridge, Massachusetts to speak at a corporate meeting for Biogen Idec, who is the oldest continuously running Biotech company in the world. Cool huh? Needless to say, my 2 am arrival at the hotel followed by a 6:15 am wakeup call was not at the top of my priority list, but I know people have to do it a lot more often than I do so I dealt with it.

But why me? Why would Biogen Idec go through this trouble to get me up to Cambridge to speak in front of them? Honestly, I have no idea. I would like to think it's my charming good looks and impeccable sense of style, but it was probably just because I'm loud.

Anyway, Biogen Idec is on the forefront of a new factor technology that I could NEVER understand, but their website does it really well. The things that they are working on are all extremely exciting.

So all I had to do was get up in front of, like, 100 executives at this company and talk about myself. Sounds easy because, let's be real, I like talking about myself (btw, I need a HemoHomo theme song to underscore moments like these).

And here I am, in front of some of the brightest minds in science today, and I'm talking about Naked Boys Singing and waiting tables. I felt so dumb, not in an overtly negative way, just in a "what they do is more important" way. And then came the feedback.

I had so much fun, and so did they. I met too many people today to even count, and I cannot wait to see some of them again on Chi-Town next week... I know... So many people... MY FIRST NHF!!!! Anywho. Everyone was so sweet to me and kept thanking me.

And then I got to see the lab. It was so cool. I wish I had taken pictures! (Bad Blogger! Bad!) But to watch where these scientists sit and do their work. It was mind-blowing.

And here I am. At my hotel, eating a lobster roll in Cambridge and not taking the 5 minute trip into Boston because I am exhausted.
Leaning on my corner window at the Marriott Cambridge

But I had a blast. And a bit of a confidence boost. It's easy to live our lives in our own world, not realizing the effect we have on other people, especially when we sing and dance naked and serve people food, but to hear the feedback from these people today was amazing.

And so I turn around and extend their thank you's to all of you. I am just one member of a community that is, well, small... but mighty (that's what she said).

I am probably going to be really busy and may not blog again until NHF '11, but I am so excited to meet so many of my readers and new friends, as well as check in with some old ones.

Here is to an amazing NHF '11, and, thanks to a bunch of people working very hard at Biogen Idec, I feel a huge change in the air? Breeze off the River? I See a River Flowing For Freedom? Okay. Enough musical theatre references. I'm out.

Till we meet again...

Thursday, November 3, 2011

Happy (Belated) Halloweeeeen

So here we are. Another All Hallow's Eve has passed us by. It has been a while since I have written a true Hemo Homo blog post, where it talks about BOTH h's in one post, but this one is defiantly a little bi-polar! (Where's my Lexipro...)

So last night I cater/waitered an even co-hosted by Mount Gay Rum and Swish. Now for those of you who haven't read my previous posts, Swish is a Gay-Straight Alliance that fights "for equal rights using talent, smarts, and a sense of style." One of the Co-Founders is my fabulous cousin Sue, and I always try to participate in events whenever I can.

Now even though I did a little eye makeup and wore fierce leather pants, we weren't allowed to dress in costume because I was working the event. Just black, so needless to say, at least the dress code was slimming. I had such a blast at this event. It was slammed with people and we debuted a new cocktail called the Boystown which was Mount Gay Rum, Elderflower Liquor (St. Germaine), Tonic, and Lime Juice. Muy delicioso. It was a fantastic beginning to a (hopefully) long lasting partnership between Mount Gay and Swish!

But not being about to wear a costume got me a little sad. I love dressing up for Halloween and it made me think about some of my favorite costumes from years past, and one jumps out.

I don't remember how old I was, I'm gonna say 5 or 6, and I had a knee bleed. I think I was going to be Donatello that Halloween, but how can you be a ninja turtle in a wheel chair?! So after much thinking between myself and my mother, I decided to be an Indian Chief(or should I say Native-American Leader? The 80's were SUCH a different time!) We decorated my helmet with feathers and I wore a sweat suit in which we attached fringe and drew designs in Sharpie. And, of course, the pièce de résistance were horse heads mounted on my wheelchair.

It's that silver lining thing that people talk about. It made me excited to be in a wheelchair for Halloween. And I got to be pushed around for Trick or Treating which was like a HUGE double bonus (that's what she said).

So here I am, 20 years older and still looking back on that one Halloween which could have easily been one of my worst Halloweens ever, but instead, turned into one of my favorites!

Moral of Story? Two Horse Heads are better than One ;-)

Till we meet again...