Tuesday, July 24, 2012

Yet Another New Experience

I just keep racking up the new experiences this summer! Flying on a plane, going to Florida, attending my first PHA conference, wandering Disney World, and also dealing with my first tropical storm was just the beginning! This past Sunday, I added another new thing to the list: jet skiing!!!
No, that is not me, or K. above. lol I do have a picture with me on the jet ski, but K. hasn't sent it to me yet! When I get it, I'll share! 

Anyway, it was such an awesome feeling!! We got the jet ski into the water, and I held onto it while K. parked the truck. When he got back, we climbed onto the jet ski, and before I knew it, we were taking off! I wasn't prepared for it! I wasn't sure how to feel at first, either. I thought maybe I felt a little seasick, but that lasted 2 seconds (THANK GOODNESS!!)! Then I felt like I was getting too winded, but nope! It was just WINDY! lol Then I realized I was just feeling a rushing experience! I was on the water, with a lot of other people, enjoying the beautiful day! WHOOO HOOO! I totally loved it!! We went around different areas of the lake, rode up right against a giant naval ship, past a rowing team (that was getting pictures done, and hopefully we'll be photoshopped out lol), and under the Peace Bridge. Then we went all the way back where we had started. It took around 2 hours, I think! It sure felt like it wasn't that long, though. I can't wait to go again!!! 

Before we got on the jet ski, I had debated whether to wear my oxygen or not. I think I've mentioned before, but it bears repeating, that I CAN go without oxygen for awhile and not feel any different. This is due to the holes in my heart, and the fact that my saturation levels don't get any better with or without oxygen. I finally decided to take my o2 with me, but we put it in a backpack, and put it in the front compartment of the jet ski. It was there if I felt like I needed it, and K. asked me a couple times if I wanted to have it. I didn't, though! I joked that there was enough wind from riding around that I think I was getting enough o2 just feeling the rush in my face!! lol  I definitely had a great time!!

Thursday, July 19, 2012

Disney Adventure!

Sooo, after the PHA conference last month, my phriend and her daughters and grand-daughter and I ventured on to Disney World! We were picked up at the Renaissance around 11am that Sunday, and off we went. It was a rather warm day, but wet and gloomy. I sat behind the driver, and soon we approached the Disney site. I took a picture of the entrance sign, which scared the poor driver because my flash went off and he thought it was lightning. Oops!!

Soon we were at our hotel, All Disney Sports. There was a bit of an issue with checking in, and I also couldn't find out where my oxygen concentrator was located. After what seemed like forever, we were told where our rooms were, but only one of them was ready. So we headed to that one, and I was able to rest for awhile. Eventually the other room was ready, and I went down to it with my luggage. Then I had to go find the concentrator. I walked back to the main building, past the pool area. Which was flooded. I had worn my jeans and sneakers, and those got completely soaked. Argh! So after finding the concentrator in the luggage storage area, and asking someone to bring it to my room, I thought I'd better get something to eat. Soup sounded pretty good right about then!! I got some, some water, and sat down for awhile just watching people. I had to make it back to the room after, which meant another walk through the biiiiiig puddle, but my phriend came over with her scooter and told me to use it. So, I did, but I have to say I felt like I was going to mow someone over! lol 

Awhile after that, we decided to take the bus to see a movie before going to dinner. It was my first adventure taking out the Respironics Evergo that I had rented. We got off the bus, walked to the AMC theater, and found out the movie we wanted to see was sold out. UGH. I was already tired by that point from the walking, and the dampness and rain. We couldn't find another movie to go to, so we just decided to go back to the bus stop to take it to the hotel where we were having dinner. 
At the AMC theater, where we didn't see a movie. lol

Since we were quite early for dinner, we found some couches to hang out at. We were also meeting another phriend for dinner, and they weren't there yet. I was trying to take a picture of the restaurant, but I couldn't quite get it, so I gave my camera to M. so she could get some close ups. We ate here!

This was my first experience eating at a Disney buffet. I didn't know we'd be eating with characters! One by one, Mickey, Minnie, Goofy, Donald, and Pluto went around to all the tables. They signed autograph books if the kids had them, and took pictures. I made sure I got my picture with all of them!





The next day, Monday, I just plain didn't feel good. I had already decided that I'd hang around the hotel for most of the day, trying to catch up on some rest, maybe hang out by the pool. Unfortunately, my stomach was a mess, and all it kept doing was raining off and on!! So I took several naps, ate a little here and there, and watched tv. I finally felt better in the early evening, about the time we were getting ready to leave for dinner at an African-themed buffet. We took a cab there, instead of the bus, and it was rather nice. The food was really good, with some items I've never heard before. Peanut soup?? It tasted like warm peanut butter! Watermelon rind salad? I actually do like eating the rind, but this salad was a bit weird, and I didn't end up liking it. Oh well, I tried it! The best part was a dessert called zebra cakes. They were filled with alcohol, and soooooo delicious!! After we ate, I browsed in the shop where the restaurant was located, and bought a few things. We got home, and I got to bed so I felt rested for the next day, when we were venturing to the Magic Kingdom!

Tuesday's weather wasn't quite as gloomy as Monday's. It rained in the early morning, but wasn't rainy when we left for the bus to take us to Magic Kingdom. When we got there, I went on the train that went around the entire park. It was neat to be able to see almost everything! After that, we had to hurry to get to the restaurant where we had reservations for lunch. We were dining with Winnie the Pooh, Tigger, Piglet, and my personal favorite, Eeyore! 




(By the way, for anyone looking at these pictures wondering where my oxygen is, it was right at the table! I just didn't want to keep dragging Bob around trying to get pics. Don't worry, I was fine! lol)

During our lunch, it would downpour, and then the sun would come out, and then it would rain again. When we finally left, it was ok for the moment! I went to the Small World ride with my phriend, since I HAD to go on that ride!! It's one of the oldest in the park! We had about a half an hour wait, but it was worth it. At least we were in a dry area waiting, because it downpoured again! Finally we boarded a boat, and slowly the ride went around. I think I had It's A Small World After All stuck in my head for the entire week after. LOL! 









I have about a million more pics from this ride, but I didn't want to bore people by posting them all!! After it was over, I went with my phriend to one of the stores, bought a mug for K., and then went back to the entrance of the Magic Kingdom so I could go back to the hotel. The humidity was just so bad that I couldn't imagine trying to walk around the park all day. At one point, I even felt a bit faint, and I never feel faint! So I went back to the hotel and rested, showered, went to the gift shop to browse, and eventually took a cab to the hotel where we were having our last buffet dinner. That night, we were eating with Cinderella, Prince Charming, Lady Tremaine (Cinderella's evil stepmother), and Anastasia and Drizella, the evil stepsisters! Oh, and before I forget, here's a couple pictures, too, of the castle!!








Dinner was fun, and we were all tired from the day, so we waited for a cab to take us back to All Star Sports. I wish I could've taken this back instead! 

I packed much of my belongings into my suitcases since we were leaving the next day for home. Home! I couldn't believe it was almost a week of not being home. The weather cooperated at least for us to get back!  I decided to try taking half a dramamine pill before the flight left. I'm not sure if it actually helped me, but I did feel much better during our takeoff than the one when we left Buffalo! I was able to enjoy the clouds more, they were just amazing to look at from above!!



We got into Buffalo around 5:30, and had to sit in the plane for a bit since there wasn't any room at the gates. Finally, things got moving, and soon we were heading toward luggage. My parents met me there! We got my suitcase, and then I was saying goodbye to my travel buddies. My adventure was at an end, and I'm just so very thankful that I got to experience so much in a week that I never thought I would before! The PH conference was amazing and so emotional, and the Disney trip, although a bit wet, was definitely something I'd never done before! I'm very glad to have had the chance to add a whole bunch of new things to my life!! 

Sunday, July 15, 2012

Hoping For Better

Last week was a rough week for me healthwise, and it didn't even have to do with PH (thank goodness!)! I started out on Sunday/Monday and even into Tuesday feel run down, tired, and as if I was going to get a cold. I certainly didn't want to deal with a cold in July when it's hot out! Wednesday around 5:30 in the morning, I woke up suddenly and started to see a tiny bunch of stars. CARP. A migraine. I really didn't want to take an Excedrin Migraine, and I ended up laying back down. An hour later I woke up again and saw a ton more stars. Sooo I got up to take the Excedrin. I also got an ice pack. Since I started treating the migraine pretty much from the beginning, I never really got the headache, but I felt like crap for the rest of the day. All I did was take it easy and work on a necklace for my sister, Joan. Early in the morning on Thursday, I woke up with a terrible sinus headache. I actually couldn't determine which was worse, the migraine or the sinus headache. I think the last one won, though!! I spent most of the morning/early afternoon trying to treat that, and finally it was almost gone by the time my family went on a picnic. I was happy about that, since it was a lot of fun! Sooo, Friday morning I got up and....whoa, no headache! My neck was bugging me a little, though, so I went to massage it like I sometimes do. Two seconds later, omg. I don't know what I did, but somehow I got a pulled muscle in my upper neck/shoulder area on the right side!!! NOOOOO!!! I couldn't even move for like two minutes because it hurt so bad. I ended up spending the day icing the area often, and not doing too much else because I couldn't turn my head much! I was just so frustrated!! I was able to go out to dinner with my sistores and friend, but I wish I could've spent more time doing something else more productive than nursing a pulled muscle!

Saturday I woke up with nothing extra wrong! lol  The neck still hurt quite a bit, the ice packs were helping slightly, and I also tried some heat. I took an Advil from my mom to see if that would help the pain (Tylenol and Excedrin didn't so anything for it), and it seemed to help a little bit. My family and I crossed into Canada for Joan's 30th birthday party, and so I was happy not to be in so much pain during that event! It turned out to be very nice, and Joan enjoyed herself!

Today I was still in some pain, but it hasn't been as much. I took one more Advil, but I think I'm done with taking the pain meds for my neck. I'll keep icing and heating if I need to do so, though. I'm going to try my best to be headache-free, pain-free, and pulled muscle-free this week!!! I hope I can just go back to my normal routine!!

Sunday, July 08, 2012

PHA's 10th International Conference

I have been a part of the PH community since October 2003, when I started my first medicine to treat PH symptoms, called Tracleer. Included with the first shipment of that med was a flyer for the PHA, so I sat down one morning and typed in the url in the search bar. I spent that day, and most of the week, in total awe. It was an emotional time, reading so many stories of other people who had PH and felt exactly how I felt my entire life. The shortness of breath, the extreme fatigue, the not being able to do anything strenuous without feeling terrible afterward. I cried much of the time. It was an entire new world to me, a world which I actually felt I belonged. I was no longer alone.

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







So finally, after the flight to Orlando (which I wrote about in my last post), we got to the absolutely gorgeous hotel. My luggage was put on a cart with my phriend's luggage, and I went to check in. As soon as I got into the lobby, someone recognized me right away! Her daughter has PH, and I met them both, and the bombardment continued from there. I had to figure out where my room was before I figured out what happened to my luggage (which ended up in my phriend's room!), and as I walked to the elevators, I recognized two people I've known for awhile. And then I met another phriend, who introduced me to the President of PHA! It was a whirlwind!!

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!

Sunday, July 01, 2012

My Adventure's Beginnings

I've been home from my trip to Florida since Wednesday night, and I'm still trying to recover from the time I spent there. I think I'm also still in shock. The trip included so many firsts for me: flying, going to a conference, going to Disney, actually being in Florida itself! Oh, and let's not forget my first tropical storm (thanks to Debby)! It was such a wonderful experience, most of it anyway. I wish it hadn't ended!

On the Thursday that I left, I was all set to go. I actually had everything packed, and thanks to making a list and crossing things off as I threw things into the suitcase, I didn't forget anything. Whew! My parents brought me to the airport, dropped me off at the entrance, and I began the first part of my adventure checking my suitcase and getting the wheelchair assistance. I made it through security with only one issue: not taking the backup batteries out of my carry on that were for my Evergo oxygen portable I was using. Oops, I didn't know! Then I was wheeled to the gate, and that's where I saw my phriend and her daughters and granddaughter! We were traveling together for this trip, and it was a relief to see them! So the next step was to just wait for the plane!

I was pretty calm about going on the airplane. Considering I've never been on one before, I was surprised that I wasn't freaking out. I was worried about how I was actually going to feel during the ride, but I wasn't afraid of being on the plane itself. Since my phriend and I were in wheelchairs, we were one of the first to be boarded on the plane, which was nice since we had more access of where we wanted to sit. Since we were going Southwest, we didn't have assigned seating. We picked seats within the first 2 rows near the front. I had no choice but to sit near a window because of my oxygen, but that was ok. I thought looking outside would be neat!

Me, before we took off!

The plane started down the runway, and I watched out the window with anticipation and some shaky nerves.  And then we started ascending. And then I got completely dizzy, and it felt so horrendous! Two thoughts came to my mind immediately: how was I going to get home?? And I guess I'll never go to Hawaii!! My phriend did say that she thought the pilot took off way too fast and ascending too sharply, so I was hoping it was just him. Needless to say, I felt crappy during the entire flight and even after. Descending wasn't so terrible at least! The one very good thing was that my oxygen sats during the flight weren't anything different than what I'm usually at while on the ground. That was a relief!

I did try sneaking peeks outside the window as we ascended and once in awhile during flight. I mean, I HAD to try to enjoy the experience even though I felt awful! I have to say, it was so awesome to be in the clouds, and to see everything from above. That part was definitely worthwhile!!



After arriving in Orlando, we got off the plane, back into wheelchairs, and were whisked off to the baggage claim area. My phriend texted her driver, a guy she uses every time she goes to Disney, to let him know we had made it. He was waiting for us outside the terminal, and loaded our belongings into the van. We drove to the Renaissance at SeaWorld hotel, after making a couple stops (I got some dramamine for the plane ride home lol), and very shortly after, the magic of my first PHA conference began!!