Conference was A-M-A-Z-I-N-G....
This year conference was in Orange County which made it even better...no hotel rooms, no flying, no car rental...I finally saved lots of money on a PHA Conference! Whew! (Do they realize how expensive conference is for the typical PH patient (and most of the time their caregiver??)
Thursday
Conference activities started this year on Thursday and unfortunately I had to work but the real activities didn't start until that night. I walked in a went straight to registration. I ran into "Little Saggar" while in line. We chatted for a while and he said to look for Rajan (my doc) on Sunday (he was on call until then). I saw Noel and she checked me in and Sally Maddox was right there when I was checking in. We both said howdy and I was on my way. I picked up my volunteer and speaker badges at the walk-in table and was on my way. I saw the SoCal welcome table in the lobby with Chris Morres running the show. I chatted for a while and continued on. I found the Generation Hope table right in the beginning of the "Hallway of Hope". I helped setup the booth with Emma Bononami from PHA (she pretty much had the whole thing setup by the time I got there). The booth looked fantastic and went to the bar with Chris Morres and Tina Powney to start our drink extravaganza...as soon as I turned around Ornah Levy and Jonathan were there! We went to the secret PHA staff room and went to Ornah's fashion show fitting. There I ran into Kimberlee Ford with her mama and Liz Brigam with her daughter. I met Rynna and her sister who always plan out the most wonderful PH runway shows. About 2 hours later Ornah and I were out and went down to the meet and greet party at the pool. I saw all of my wonderful PHriends there and chatted for hours. We pretty much shut the place down. Then I decided it was time to go home. I had been up since 5 am at work...I was beat...and I needed lots of rest the next day because it was going to be a long day with the Generation Hope (GH) party and my patient led session I was leading. Whew! Day one done!
Friday
Seriously...why are we starting these conferences so early in the morning? Don't they know us PHers need our beauty sleep? Got there early in the morning, I dropped my things off at the GH table and decided to stick around the table for a while. I met some wonderful people, a couple whose daughter has PH. They were from Israel, and unfortunately their daughter was so sick she couldn't attend. her parents expressed how their daughter felt so lonely and sad because she had no one her age to relate to. We swapped our digits and I am hoping to get in contact with their daughter to introduce her to the GH team! :)
Soon Colleen Brunetti and Sean Wyman joined me at the table and we were fielding questions left and right. Lets just say we were so busy, we ran out of candy by noon! AHHHH! The most famous question was, "Where's the restroom?"...luckily I knew where it was at! Time for the 2nd meet and greet rolled around but we were so busy at the GH table I could leave. So I fielded the questions alone and caught up on my emails from work on the down periods.
One point I must make is that it was kinda disappointing not having lunch on Friday afternoon...a lot of PHers were looking for food to take with their meds, or to boost their insulin, or just to stay anti-grouchy. I think this why we ran out of candy...we became the living vending machine! I was glad we had the candy. It was a lifesaver. Literally. So Ornah, Jonathan, my mom and I decided to grab some grub at the bar in lobby. Food was a 7 on a 10 point scale. Amy Samuelson and Christine Kramer rolled up and we chatted for a while. We finished up and went the opening ceremony to here Carl Hicks start the conference off with some words of wisdom (I came with tissue in hand). I ran into Evan White while waiting for everything to start. She looked fantastic and was her perky self.
Next was my patient led session! I was ready to get this over! I found the room and everyone showed up, ready to go, as planned. Emily Mitchell, Sean, and Carson Smith were ready to go...bad thing was that our room assistant/moderator/whatever want to call her...had over slept and missed her training. Ugh. WTH. So we pretty much told her what to do and we started. Everything went well and lots of people got to ask questions. One father said it was nice to hear that the panelists seemed to be living successful and "normal" lives and that it inspiring to see that his young daughter has life to look forward to. It gave me the warm and fuzzes. Mission accomplished!
After that I ran over to the Flolan and Remodulin support group ran by my buddies Doug Taylor and Liz Brigham. After a wonder support group session it was time to do a little buzz around the exposition booths. I stopped and talked to Robyn at Crono5 pump station...she asked me if I would be willing to write a blurb about my PH story and how I got the original C5 pump. Just add it to my to-do list! I grabbed my conference t-shirt and some goodies from Accredo, Caremark, and Actelion.
Now for dinner! Ugh...I must admit...dinner was terrible the first night. Dried up chicken, polenta paste, and some hard veggies...no bueno. I scarfed up the salad and ate the inside of the tart dessert and was out the door.
Finally the Generation Hope After Dark party started. I jumped into my comfy jeans, t-shirt and scarf and was ready to party. I order a Miami Vice and was on my way to mingling. Cute boys were there from the research lab (I should have gotten the number of one of them...whew...he was a cutie). Stu generously bought my second drink and after hours of mingling it was time to leave. I didn't even get home till 12:30 AM. Mucho sleepy!
Saturday
I decided to skip the breakfast and sleep in. I met Ornah and Jonathan later that morning and we started going to our scientific sessions. We went to some fantastic sessions this year as well as some oldie but goodies (like Women, Sex, and PH). Lets just say...I am majorly fearing menopause now...lol...
The journey's luncheon is always interesting because you get hear not only the patient's view of their PH Journey, you also get to hear the story from their doctor's point of view. My fabulous friend Amy Samuelson whom I had met at the 2008 PH conference was one of the selected speakers and I was so proud to see her up there on the stage owning it, and I was proud to see how far she had come from her timid and shy 2008 personality to a happy, blossoming woman and mother. I was very proud to say the least. :)
I made my way to day two of the flolan/Remo support group and then went to dinner. Dinner tonight was steak and fish...much better than the previous night but my steak was still mooing while it was sitting in front of me. My pudding dessert wasn't set as well and literally poured out of the cup. I found a second one and scarfed it up. Ornah was participating in the fashion show during dinner...she looked fantastic all dolled up with her hair and makeup done. She worked that runway like a Pro! And I was proud to have my Five Cent Designed bag up on the stage. The runway show was a huge success and Jonathan and I got lots of photos for our Top Model!
Like usual...I had conference burnout and went home a little early. I needed that extra sleep if I was going to make it one more day!
Sunday
I skipped the breakfast again (the food was highly disappointing this year) and slept in for a little bit. I wanted to go to the liver session even though I don't have any problems with my liver but my doc was leading the panel and I wanted to support him as well as see him! I chatted with him before the session started and Jonathan was gracious enough to take a photo of us together before he left to go home. I took some final pictures with my PHriends and said my goodbyes to a lot of them. It's sooooo sad that I won't see most of them for another 2 years. Ugh.
I was soooo tired I went home and crashed. I needed to rest and not think for at least a few hours. I went home and napped my way to sweet dreams.
Monday
The next day I picked up Amy and Ornah and we went out for lunch. We did our usual girl chatting and eating by the beach. The weather was perfect for eating outside and the food was yummy. We hopped in the car and drove down PCH. We went through Huntington Beach, Newport Beach, and Laguna Beach...showing Amy special spots along the way. We stopped in Laguna Beach by Las Brisas and took Amy down to the shore. We collected shells for Amy's girls and watched the cute surfers do their thing. Time flew by so fast and I didn't even realize it! We took Amy up the steepest hill and down to Laguna Niguel and I took them to a fantastic lookout spot that I used to go to in high school. The view of northern OC was amazing and definitely worth the stop. We decided to go to my house because Ornah had yet to see my new house and we wanted to get some yummy Mexican food at Avila's El Ranchito by my house. :)
I gave them the 5 cent tour and everyone got to do a pee break. We munched our way through dinner...Chips and salsa, soup, tacos, nom nom nom....it was yummy. Jonathan came to take them home so I didn't have to make the huge trek back to northern OC for like the 8th time in 4 days. My poor little Lexus had a very long weekend. Whew.
Now conference has passed, pictures are popping up like crazy on Facebook and Flickr...we are planning for the next conference which is 2 years away which sounds like a long time but it will roll around sooner than later. I can't wait to go to Orlando. The hotel is a Marriott so I will be cashing in some of my Marriott points from work for my room which will hopefully save me some dough. Ornah and I are dead set on trying to go to another destination after conference...maybe the Bahamas...or Aruba...we will see. I know the Olympics will be going on in London...maybe I will continue on my journey after conference and Aruba. We will see. Good thing is that I have another 2 years to save up and plan!
Next stop....PH Forum in San Francisco in June...and the Stanford 5K PH Run/Walk with Ornah!
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