While the message boards provided a huge wealth of information and personal stories, the chat rooms provided an instant connection. The first few times I ventured into the rooms, I felt totally at home. For anyone who hasn't had the experience of being in a chat room, I highly recommend it, although it does take some getting used to! Conversations of all sorts happen within seconds. The more people in the room makes everything seem to go faster, but if you can get used to that, it's a terrific experience to be able to connect with people in real-time. The chat rooms became a part of my life, and that continues even today!
I became more involved with PHA by becoming a support group leader for the Buffalo/Niagara Falls area in 2005. I love being able to have meetings, even though I admit that before each one I get a little nervous. Why? It's just a part of my personality, I guess! The group is not as big as some of the other PH support groups around the country, but that's ok. A support group includes two or more people, so I am happy if I can help a couple people or even more than that. That part of my PH journey has been great as well!
I began hearing about the PHA's biannual conferences in 2004, when they had it in Miami, FL. It happened to be the same weekend my sister was getting married, so there was no way I could attend. In 2006, another sister was getting married that summer, so I wasn't planning on going to the next one, either. I was also very hesitant because of traveling. I knew there was no way I wanted to fly, and most of the places chosen for conference were way too far to travel by car, unless I took several days to do so. So I kept putting off going to conference for several years, wondering if I'd ever go at all!
When I found out that 2012's conference would be in Orlando, I thought long and hard about going. It was finally back on the East coast, a little bit easier for traveling. Of course, I still didn't want to fly there. I was trying to figure out how far of a drive it was, and who would go with me. I didn't settle any of that until I found out that the scholarship I applied for was approved. That would be the only way I could go, since I didn't have money to travel! After talking to my phriend, who told me they'd be flying there and staying at Disney a few days after, and talking to several other people, and also praying big time, I finally decided to attempt flying for the first time. Since we were going to be leaving the day before conference officially began, I figured I'd have some time to recover if I didn't feel well from the flight. I actually was a little shocked at myself for deciding on flying, but it was going to be so much easier to get there than driving over 20 hours!!
The Renaissance @SeaWorld Hotel
When I finally escaped to find my room, I sat on the bed for several minutes in shock. Do you know what it feels like to meet people you've been talking to for years but never met? I had only met a handful of people in a span of 15 minutes and it was just the beginning. It was so overwhelming that I started to tear up. Emotions were everywhere at the moment! I thanked God for letting me be there and have the opportunity to be a part of such an awesome experience! I composed myself and set off to find out where my phriend's room was (which happened to be on the opposite side of the hotel), and ran into more phriends on the way there. It was only a couple hours into the conference experience, and I was loving it already!!
The meeting of phriends left and right continued Thursday evening, and of course, pictures were being snapped everywhere. I was hoping to capture as many phriends as I possibly could on film! After meeting my roomie and her good friend, I hung out downstairs for awhile until people started saying they needed to eat dinner. I still wasn't feeling totally better from being on the plane, but I knew I needed to eat something! So I went with several phriends to a seafood restaurant a bit from the hotel. On the way I saw this crazy building, which was completely upside down! Later I found out it was called WonderWorks. Pretty cool!
After our meal, we got back to the Renaissance, and I was pretty beat. I got up to my room, where my two roomies were getting ready for bed, and I got changed and ready to hit the hay myself. We chatted for quite awhile until we were all pretty sleepy! I have to say, the beds were rather comfy, at least I thought so! And there was big square pillow that I truly wished I could jam back into my suitcase, but I'm sure that wouldn't have gone over well with hotel staff! lol
I could have slept in a little on Friday, but I got up at 7am for my Revatio, and then laid back down til about 8. I wanted to attend a morning session, even though conference didn't officially start until 1pm. I got ready in the dark because I didn't want to wake my roomies, but when I had to fill up Artie (my little o2 Helios), I wasn't sure what to do, since that makes a rather loud noise! One of my roomies happened to get up at that point to use the bathroom, and I asked if it would bother them to turn on a light and fill Artie, and she said not at all. Soooo, I did! Nobody really flinched! lol I finished getting stuff together and left the room for the first session of my first conference!
After the session was the support group leader breakfast/lunch. Well, it started at 10:30, but I don't think we really started getting food until 11, and since I didn't really have breakfast, I called it brunch. lol It was neat seeing so many support group leaders from all around the country in one room! Discussions were had, and also laughs, and pretty soon the brunch was over and it was time to move on to the keynote address to officially open the PHA conference of 2012!
I have to say that one of the most moving parts of conference for me was meeting one of the original co-founders of the PHA. She happened to be in one of the sessions I wanted to attend on Saturday afternoon, and when I saw her there, I mentioned to my phriend that I'd love to meet Dorothy. So my phriend took me over there and introduced us, and I talked to Dorothy, and ended up sitting next to her so we could get a picture together. What an incredibly inspiring woman, and so funny!! She is 87 years old and has had PH for 35 years (which shocked me knowing that I've had PH for one more year over her!), and she seemed to be doing pretty good! She made a comment about how she's had her picture taken so many times over the years with so many PHers at the conferences, and she doesn't have a single picture herself! So I asked if she had Facebook or anything, and she said to me, "Oh honey, I don't know if you know this, but I'm also blind!" Ooops!! She said it like it was no big deal, and we chatted for a few more minutes before the session began. I was just so happy to actually meet her!!
Another part of conference that I am hoping will come out alright is the filming I did on Saturday morning. PHA had sent out emails earlier this year looking for conference attendees willing to participate in an awareness video they were going to make about having PH with associated diseases, such as connected tissue disease, congenital heart disease, scleroderma, etc. As much as I was nervous of the thought of being in front of a camera, I thought, why not volunteer to talk about living with congenital heart disease?? So I wrote back saying I was interested in helping out, and I was picked! So my filming time was set for 11:15 on Saturday, and I got there a bit early. I had just missed my doctor, which was a bummer! But I started talking to the three people involved with the filming, and then we finally sat down so I could get hooked up to a microphone. The lights were on me, the green screen behind me, and then ACTION! I was asked some questions, and I just pretty much talked naturally about how I live my life with PH and two holes in my heart. Things went pretty smooth, although I did fumble on some words once and they had to redo that question. They have to cut down what I said into probably a minute, so hopefully I gave them enough information they can use!!
Getting together some of the PHA chat group members for a picture on Saturday night after the dinner was another fun aspect of conference for me. The chat group is almost like a second home for me. I've been going to chat most nights for almost 9 years. To be able to meet so many of the group in person for the first time ever was just so awesome!! These people are not just phriends, they are FRIENDS. I wish we were able to have all the regulars in the picture, but not everyone was able to come to conference. We did end up having a decent turnout, though!
My PHA Chat Phriends!
Sunday morning, I had a breakfast meeting for the PHA Mentor/Support Line leaders. We shared some great ideas of how to help others asking for advice. After that, I attended one more session before I needed to gather my luggage and leave the hotel for the next part of my adventure to Disney. I was really pretty bummed! The conference went by waaaay too fast, and I wanted to spend more time with my phriends! There were even people I knew who were attending that I never ran into and was able to meet. That made me rather sad!! So all I can hope is that I will be able to go to another conference, so that I can spend time with the phriends I've made in the last several years, and meet some new phriends as well. I've got to try saving my pennies for Indianapolis, which is where the next one will be held in 2014! This conference just meant so much to me, was completely inspiring, and to be able to go again would mean the world to me!! I hope anyone who has PH will be able to attend at least one conference in their lifetime! I'm really so very thankful for this experience!