Wednesday, April 24, 2013
Wednesday, June 6, 2012
A-Ro. The Dancing Hemo
Hey guys. So during a Tittersation (is that a real word?) I was asked by Affinity Biotech how hemophilia affects my dancing after commenting on a link to this video, and I thought, "PERFECT BLOG POST!" But before I write my story I want to let you know that I do not consider myself a "dancer dancer." I consider myself an Actor/Singer/Dancer. There are people out there who make a living out there dancing, and I am not one of them. What I am is a performer who can also dance and that movement ability has helped me book jobs, but is not my main focus. Okay. That being said....
My mother is a dance teacher, so I have grown up around dancing since I was a wee tyke, and much like the shoemaker's kids who go with holes in their soles, I may have "danced," but never really trained heavily.
Age 2 at my very first dance recital. I had the whole world in my hands!
I would sometimes take class as I got older, but since I was the only boy at the studio for a while I would usually just learn choreography for certain performances. I have to say I love(d) to dance and still do today.
When I ended up going to Penn State, I really started to realize how intense dance training could affect my bleeding disorder. I distinctly remember my first day of beginner ballet. There I am, looking so Ballet-Chic in my black tights and white t-shirt, my dance belt riding up like no other, and I went to my dance instructor to inform her of my "situation." She very politely told me that I should just be as careful as possible and that until she looked into this further I should be aware that my status of staying in the program was in jeopardy. (Side note: Once Spence and my other professors understood Hemophilia more thoroughly I was told everything was fine). But it was at this moment that I was like, oh. Maybe I CAN'T do this. I had always believed that I could.
Throughout college, taking hours of dance a day which consisted of ballet, tap, jazz, and musical theatre styles, I would find that I would have random bleeds, especially in my target joints, my hips and ankles.
Even though I was told my status was safe, I didn't believe them, so off I would go to class, instant ice pack in tow, and wince my way through class without saying a word.
Now, I have to say I do use the excuse of my bleeding disorder as a reason for not being a better dancer. And if I was a LITTLE less
lazy I could be doing Yoga and Pilates to help my flexibility (Hey! My past readers know I will call myself out when I am in the wrong), but it is really discouraging when you've been working really hard and gaining some progress, and then get injured, pretty badly.
It was my junior year of college and I was in my musical theatre styles class, and for the first time I really felt like I could compete with the "dancers" in my class, and we were working on the opening combination to A Chorus Line. I wish I had a video to show you, but I'm sure you can find SOMEONE doing original choreo for A Chorus Line SOMEWHERE on YouTube (just don't watch the movie choreo. It was different and horrible). Anyway, I was dancing my little heart out and I kicked my right leg up, and I just felt it. Searing pain run through my right hip. But, as I had been doing for about 3 years by this point, I grinned and pressed on. I actually took the bus back to my dorm that day, I remember. Anywho, when I got to my room I could barely move my hip. It had gotten that bad, so I called my hematologists and of course they said treat RIGHT away. So I did (this is when I was infusing more often so I DID feel comfortable self-infusing), but ended up in bed for about two weeks, and when I started dancing again, it was like I had never danced before and I was so disheartened.
Of course I kept dancing, continued to take class, and have been fortunate enough to book performing work, and yes, some that requires dancing. And you better believe that when I had twisted my ankle during a show of Naked Boys, that I kept going, wrapped it, infused, and was ready for my next show! But in the back of my mind I always wonder how GREAT I could have become if bleeding episodes hadn't gotten in my way. But I am not complaining. I am active. I am performing, and I am loving my life right now.
Photo Credit: Wire Images. A photo taken during the 3,000 performance of Naked Boys Singing!
So this post was not meant to be a sad story, or an uplifting story. Just a story; a small part of my story. What I get out of my past as a dancer is that it has made me a better performer and a more well rounded person. I enjoy teaching the art of dance, because although I may not be able to kick my face, I know how to explain to other people how THEY should. Any physical activity is risky. You can hurt yourself swimming, or running, or even playing golf, but why put yourself at MORE risk by doing a more contact heavy sport? I'm not saying don't try it, or quit, I'm just saying that I think it is wise to make smart decisions when choosing what physical activity to undertake.
Yes. We strive to let every individual with a bleeding disorder live a normal life, but I cannot stress enough that even while treating prophylacticly (is that a word) breakthrough bleeds occur. Smart choices are just that. Smart. And hope everyone out there is making them. I know sometimes I haven't...
Till we meet again...
My mother is a dance teacher, so I have grown up around dancing since I was a wee tyke, and much like the shoemaker's kids who go with holes in their soles, I may have "danced," but never really trained heavily.
Age 2 at my very first dance recital. I had the whole world in my hands!
I would sometimes take class as I got older, but since I was the only boy at the studio for a while I would usually just learn choreography for certain performances. I have to say I love(d) to dance and still do today.
When I ended up going to Penn State, I really started to realize how intense dance training could affect my bleeding disorder. I distinctly remember my first day of beginner ballet. There I am, looking so Ballet-Chic in my black tights and white t-shirt, my dance belt riding up like no other, and I went to my dance instructor to inform her of my "situation." She very politely told me that I should just be as careful as possible and that until she looked into this further I should be aware that my status of staying in the program was in jeopardy. (Side note: Once Spence and my other professors understood Hemophilia more thoroughly I was told everything was fine). But it was at this moment that I was like, oh. Maybe I CAN'T do this. I had always believed that I could.
Throughout college, taking hours of dance a day which consisted of ballet, tap, jazz, and musical theatre styles, I would find that I would have random bleeds, especially in my target joints, my hips and ankles.
Even though I was told my status was safe, I didn't believe them, so off I would go to class, instant ice pack in tow, and wince my way through class without saying a word.
Now, I have to say I do use the excuse of my bleeding disorder as a reason for not being a better dancer. And if I was a LITTLE less
lazy I could be doing Yoga and Pilates to help my flexibility (Hey! My past readers know I will call myself out when I am in the wrong), but it is really discouraging when you've been working really hard and gaining some progress, and then get injured, pretty badly.
It was my junior year of college and I was in my musical theatre styles class, and for the first time I really felt like I could compete with the "dancers" in my class, and we were working on the opening combination to A Chorus Line. I wish I had a video to show you, but I'm sure you can find SOMEONE doing original choreo for A Chorus Line SOMEWHERE on YouTube (just don't watch the movie choreo. It was different and horrible). Anyway, I was dancing my little heart out and I kicked my right leg up, and I just felt it. Searing pain run through my right hip. But, as I had been doing for about 3 years by this point, I grinned and pressed on. I actually took the bus back to my dorm that day, I remember. Anywho, when I got to my room I could barely move my hip. It had gotten that bad, so I called my hematologists and of course they said treat RIGHT away. So I did (this is when I was infusing more often so I DID feel comfortable self-infusing), but ended up in bed for about two weeks, and when I started dancing again, it was like I had never danced before and I was so disheartened.
Of course I kept dancing, continued to take class, and have been fortunate enough to book performing work, and yes, some that requires dancing. And you better believe that when I had twisted my ankle during a show of Naked Boys, that I kept going, wrapped it, infused, and was ready for my next show! But in the back of my mind I always wonder how GREAT I could have become if bleeding episodes hadn't gotten in my way. But I am not complaining. I am active. I am performing, and I am loving my life right now.
Photo Credit: Wire Images. A photo taken during the 3,000 performance of Naked Boys Singing!
So this post was not meant to be a sad story, or an uplifting story. Just a story; a small part of my story. What I get out of my past as a dancer is that it has made me a better performer and a more well rounded person. I enjoy teaching the art of dance, because although I may not be able to kick my face, I know how to explain to other people how THEY should. Any physical activity is risky. You can hurt yourself swimming, or running, or even playing golf, but why put yourself at MORE risk by doing a more contact heavy sport? I'm not saying don't try it, or quit, I'm just saying that I think it is wise to make smart decisions when choosing what physical activity to undertake.
Yes. We strive to let every individual with a bleeding disorder live a normal life, but I cannot stress enough that even while treating prophylacticly (is that a word) breakthrough bleeds occur. Smart choices are just that. Smart. And hope everyone out there is making them. I know sometimes I haven't...
Till we meet again...
Monday, June 4, 2012
Walk it out...
So here I am. Sitting on a bus heading back to PA after attending the NYC Hemophilia Walk for the second year, and already I'm looking forward to 2013!
This story goes back a long, long time ago........ to February. Glenn Mones asked me if I would be interested in talking about my first walk experience (which was just the previous year) at a Kick-Ofd Brunch that was taking place at Barebuger (which btw [shameless plug], if you have never eaten at you should because it is AMAZING).
Anywho... Of course I said yes, because, in all reality, when would I NOT want to talk in front of people, and my journey for the 2012 walk began.
This was my first year as a team captain and I had big dreams for how I was going to do this! I was gonna have like 30 people on my team (never happened), we were going to have a huge cabaret with original songs written by composing teams to raise money (never happened), and I was going to have these awesome Hemo Homo t-shirts made that were going to rock everyone's socks! (Never happened).
But what did happen is I ended up with an amazing team of 5 people where we raised $365. I know it wasn't the most raised, barely 1% of what the team with the most money raised, but we did it. Our small but mighty team helped to contribute, and I do believe that every dollar helps.
When we arrived at the walk it was, as it was last year, overwhelming to see the amount of people supporting the Bleeding Disorders community. The main difference, personally, between last year and this year, is that attending the walk last year was one of my first events with the community. I met a lot of amazing people and new friends. Whereas THIS YEAR, I got to reconnect with people I hadn't seen in months, and get to hang out, talk, and chit-chat (yes. Talking and chit-chatting is different. I use WAY more "hey girl"s when chit-chatting).
Photo Credit: Ryan Seeley
It was really wonderful to get to see my dear friend Ryan again after not seeing him since Albany Days. The little trouper walked the ENTIRE 5K and is really an inspiration.
My team consisted of Tyler (the bf), my good friends Matt and Chris (who is also a Hemo), and my dear, dear friend Melissa (who has been mentioned previously in the blog before).
Melissa and I posing during the walk. Apparently this section was used in You've Got Mail? I almost lost my gay card over not knowing that one...
The Walk raised over 237,000 dollars total and really is an inspiration. I learned that I really need to plan ahead for next year so that Team Hemo Homo can really add a significant chunk o' change to the pot next year.
There are other walks still going on across the country all summer long, so I am asking my readers to make a donation to your local chapter's walk. Every penny helps, and pretty soon, we will walk all the way to a cure!
Till we meet again...
This story goes back a long, long time ago........ to February. Glenn Mones asked me if I would be interested in talking about my first walk experience (which was just the previous year) at a Kick-Ofd Brunch that was taking place at Barebuger (which btw [shameless plug], if you have never eaten at you should because it is AMAZING).
Anywho... Of course I said yes, because, in all reality, when would I NOT want to talk in front of people, and my journey for the 2012 walk began.
This was my first year as a team captain and I had big dreams for how I was going to do this! I was gonna have like 30 people on my team (never happened), we were going to have a huge cabaret with original songs written by composing teams to raise money (never happened), and I was going to have these awesome Hemo Homo t-shirts made that were going to rock everyone's socks! (Never happened).
But what did happen is I ended up with an amazing team of 5 people where we raised $365. I know it wasn't the most raised, barely 1% of what the team with the most money raised, but we did it. Our small but mighty team helped to contribute, and I do believe that every dollar helps.
When we arrived at the walk it was, as it was last year, overwhelming to see the amount of people supporting the Bleeding Disorders community. The main difference, personally, between last year and this year, is that attending the walk last year was one of my first events with the community. I met a lot of amazing people and new friends. Whereas THIS YEAR, I got to reconnect with people I hadn't seen in months, and get to hang out, talk, and chit-chat (yes. Talking and chit-chatting is different. I use WAY more "hey girl"s when chit-chatting).
It was really wonderful to get to see my dear friend Ryan again after not seeing him since Albany Days. The little trouper walked the ENTIRE 5K and is really an inspiration.
My team consisted of Tyler (the bf), my good friends Matt and Chris (who is also a Hemo), and my dear, dear friend Melissa (who has been mentioned previously in the blog before).
The Walk raised over 237,000 dollars total and really is an inspiration. I learned that I really need to plan ahead for next year so that Team Hemo Homo can really add a significant chunk o' change to the pot next year.
There are other walks still going on across the country all summer long, so I am asking my readers to make a donation to your local chapter's walk. Every penny helps, and pretty soon, we will walk all the way to a cure!
Till we meet again...
Friday, May 18, 2012
Hemophilia Walk 2012
Hey y'all! Follow the link below to join my team in the 2012 NYC Hemophilia Walk in Riverside Park! More details to follow!
http://my.e2rm.com/personalPage.aspx?registrationID=1363040&langPref=en-CA
http://my.e2rm.com/personalPage.aspx?registrationID=1363040&langPref=en-CA
Wednesday, February 29, 2012
Guess Who's Back?!
No. Not Tony Danza, he's the boss remember? Anywho, IT'S ME! Your good ol' bleeder buddy. SO much has happened over the past couple of months and unfortunately the blog has fallen a bit behind, but it's time for me to put it at the top of my priority list again, so here I am!
I don't wanna tell you EVERYTHING that's been happening because then I won't have anything to write for the next couple weeks, but my life has taken a huge flip-flop.
Topics you will be hearing more about... A-chem (I'm clearing my throat, I'm sick)...
1) Naked Boys Singing has closed... and reopened with a new cast (shady).
2) I am traveling back and forth between NYC and Pennsylvania to help my mother out in PA.
3) Tyler and I have officially moved in together. Yeah!
4) I don't have health insurance...
5) I had a bad bleed in my shoulder and have a whole blog planned (with pics, of course).
6) I choreographed a high school production of Seussical the Musical in PA.
So lots has been going on. Like, lots. And I can't wait to tell you all about it. Again, PLEASE send me some ideas for posts, bleeder related or not, because I love new ideas.
When I am in PA I don't have Internet so some of these posts may be formatted weird as I am using my iPhone. Just saying.
It feels good to be back, I've missed you all! I hope you missed me... :-)
Till we meet again...
I don't wanna tell you EVERYTHING that's been happening because then I won't have anything to write for the next couple weeks, but my life has taken a huge flip-flop.
Topics you will be hearing more about... A-chem (I'm clearing my throat, I'm sick)...
1) Naked Boys Singing has closed... and reopened with a new cast (shady).
2) I am traveling back and forth between NYC and Pennsylvania to help my mother out in PA.
3) Tyler and I have officially moved in together. Yeah!
4) I don't have health insurance...
5) I had a bad bleed in my shoulder and have a whole blog planned (with pics, of course).
6) I choreographed a high school production of Seussical the Musical in PA.
So lots has been going on. Like, lots. And I can't wait to tell you all about it. Again, PLEASE send me some ideas for posts, bleeder related or not, because I love new ideas.
When I am in PA I don't have Internet so some of these posts may be formatted weird as I am using my iPhone. Just saying.
It feels good to be back, I've missed you all! I hope you missed me... :-)
Till we meet again...
Location:Old Gravity Rd,Hawley,United States
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!)
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...
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...
DAY 2
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.
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| Baxter had a cool exhibit. |
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| Pfizer showed videos and I made a medic alert! |
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| Biogen Idec has an AWESOME exhibit with virtual reality games and awesome water bottles ;-) |
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| WOOT! Affinity Biotech! |
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| 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....
ALEX BORSTEIN!
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....
DAY 3
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!
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| A Still Shot from the FlipBook. I love my hat ;-) |
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 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...
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