Wednesday, August 29, 2007

I'm Hitting The Road!

My mom and I are leaving tomorrow for a mini-vacation! We are going to Horseheads, NY, where my mom grew up. It's going to be a great time, since many of my aunts and uncles are going to be there as well. My Aunt Jane and Uncle Bob are both turning 50 this year, and their daughter, Ryhan, is throwing them a surprise party on Sunday! She's been planning this for over a year, and apparently they have NO CLUE!! So that's the biggest reason my mom and I are going. My mom comes from a family of 11 children, eight sisters and two brothers. All of them are going to be there except for two sisters. One lives in Arizona, and that's just a bit much to go for a weekend. And one just isn't really involved with the family anymore. But I'm so excited to see everyone else, and my grandma!! She is 84, and still kicking pretty good! You wouldn't even know she's 84, she looks like she's in her late 60s! That is why I look like I'm 12! I get my young genes from my mom's side of the family for sure! hehe

So I'm off to bed soon, so I get enough rest for the trip. It's not that long a drive (about 3 hours), but I stress out sometimes when driving with my mom (making it a 4 hour trip with her). lol I'll be back some time on Monday!! :) :)

Wednesday, August 22, 2007


I am incredibly angry right now. More like livid. In the PH chat rooms tonight, a person named Sarah came into the chat room. She started out ok, saying she was in the room because she wanted to find out more about PH. She didn't have PH, but a friend did, and she wanted to know what it was really like with PH because she thought her friend was faking it.

I'm sorry, faking it????

How do you fake being so out of breath after walking up a flight of stairs?

How do you fake being a little blue after just walking down your hallway?

How do you fake blowing up with fluid because your heart is starting to go into failure?

How do you fake being tired when you do something simple like making your bed?

How do you fake a disease with tests and doctor visits that cost an incredible amount of money?

How do you fake an illness with treatments that can cost thousands of dollars a month?

I can't begin to tell you how angry I was to hear this woman spew all of the things she thinks her friend is faking!! This woman obviously has no clue what it's like to have a serious and life threatening disease. I mean, most people don't know what it's like, but at least they have some sort of compassion and caring in them. This Sarah kept telling us that she wanted to take over and control our PHriend (yes, we figured out that she was talking about a PHriend on the boards!!), and that she has been trying to get our PHriend's medical records, and trying to contact her doctors. She kept saying her friend was unstable and mentally not all there. I just couldn't believe it!! What kind of a friend are you when you say that about someone you supposedly care about?? It was all so very upsetting! And when we finally called her out on who she was, she shut up for a very long time. Then someone started saying something to her again, and eventually all of us were telling her to leave the room and never come back! No one can sit there and tell a room full of PHers that they think someone they know is FAKING THIS ILLNESS!!! She got an earful from us, and I sure hope she never comes back again!!

By the way, our PHriend this Sarah was talking about got into the chat room about 15 minutes after Sarah left. We all told her the story, and apparently Sarah has been trying to find out alot of crap about our PHriend today. So the advice given to our PHriend was to try to get some sort of order of protection against Sarah, which our PHriend is working on!!!! She is definitely in my prayers, that this Sarah person will be out of her life soon, because she is just a toxic person!!

And if Sarah ever comes back into the chat room, she will definitely get an earful from a large group of angry PHers!!!

Sunday, August 19, 2007

Crazy Days!

I've had such a busy several days! Wednesday I was out all day visiting. First I went to Mandy's house for most of the morning and early afternoon. I played with my cute little niece for awhile, and she just cracks me up! And I got to see my cute little nephew, too, but he was sleeping most of the time. It was nice to just sit and chat with Mandy after both kids were sleeping. I still miss having her upstairs sometimes, but there is definitely no room for them there now. After I got home from visiting them, I got a call from a friend I used to work with at Headstart. She had had surgery, so she is off for 6 weeks, and she wanted to know if I wanted to come visit. So I did! We just sat on her back porch for a few hours, chatting away. I find it funny that I really didn't like her at first when I started working at Headstart, and now she is one of the only people I still talk to after I left there! I'll probably visit her again since she'll have alot of time off work!

Thursday was the day trip to Cleveland Clinic for my first dose of Revatio! My dad and I left at 7am (ewwww), and got to Cleveland right at 11am. We were called in by Svetlana, my doctor's nurse practitioner about 20 minutes later. She told us that Dr. Gildea wanted me to start a half dose of Revatio. So my dad had to go down to the pharmacy to buy a pill splitter! Revatio is not scored, since it's not really meant to be taken in halves, so it was necessary to get that splitter! Anyway, at noon, I said "Cheers!" and swallowed the first half dose! After that, Svetlana took my blood pressure, oxygen saturation levels, and heart rate every 15 minutes for the first hour. She also asked me if I had a headache, any vision problems, but each time I said nope! So after the first hour, I was allowed to get up and walk around a bit. I took a trip to the little girl's room, and then Svetlana weighed me. After that, I just sat in the chair in the room, and she checked me only twice that hour. I still wasn't feeling anything unusual, and my blood pressure was fine and dandy! So after 2 hours, we were allowed to go back home! I have to call Svetlana on Monday and Friday this week, to let her know how things are going. After talking to her on Friday, hopefully she'll find out if I can start on the full dose, or wait another week. We'll see what happens!

So far, I haven't felt a difference with being on Revatio. Of course, it's only been 4 days, and not even the full dose. I've had slight headaches for 3 days after the afternoon dose (I take it 3x a day, 8 hours apart). Today I didn't, and I think it was because I was pretty full after having lunch. So I think that's the key, to have a bit of food in my stomach! I am hoping maybe I'll notice a difference with just half the dose, so I wouldn't have to take a full one, but I don't know about that. I've been very short of breath the past few days, and that is because the weather changed drastically here. I don't think it even got to 70 today, and it's supposed to be like that tomorrow, too. It's driving me nuts!! So anyway, it's a wait and see process!!

Friday, I took it easy during the day. I really didn't do too much, except take away more stuff in the living room for Saturday's rug removal! Friday evening, my family had a nice dinner at Mandy's house. When we got there, my cute little nephew just began fussing and crying again, so I told Mandy I'd hold him! And hold him I did! I had him for about 40 minutes, while everyone else was trying to get dinner ready. He finally fell asleep for me, and I just held him on the couch for awhile. I almost felt like falling asleep myself! lol Eventually, Mandy took him into their room, and we all went to eat. Very yummy food, and nice conversation! It was great to all get together, since we hadn't done that since my cute little niece's 2nd birthday party in June!!

Saturday was rug removal day!! I was feeling a little blah-like in the morning with the dumb weather, and sort of testy. But Erin arrived with her cute little daughter, and after a bit, she started pulling out some rug while we waited for Eve and Jody. It was rather entertaining to watch her do it! lol Eventually Eve and Jody got there and started helping Erin. They moved furniture around the living room, they moved some out of there, got up the rug and padding, and started taking out staples. I kept going in and out of the room, helping with things here and there. Eventually Erin had to leave because her cute little daughter was going over the edge of sanity because it was past her naptime!! So Eve and Jody finished working on the floor. They washed it, had it dry, put the special hardwood floor stuff on it, let that dry, and moved to a different section. While they waited for the floor to dry, they also washed my kitchen floor and bathroom floor. I just couldn't believe they were willing to do all that for me!! In the meantime, Erin's husband came over with the area rug they bought me for babysitting their cute little daughter, which had just arrived that day!! What perfect timing!! They got the rug down, and helped me move all the boxes back into the living room with all my stuff I had in there. Eventually they took off, and I got to put most of my stuff away, and just sit in my living room, in awe of the changes that had happened!! See my post below for pictures!!

Saturday night, nine of us went out to dinner! We went to The Brickyard in Lewiston, NY. It was a fun time! I haven't laughed that much in a long time, and I think it wore me out a little. I was soooo tired by the time I got home from everything that had happened on Saturday. I didn't go to bed right away, but when I finally did, I went out like a light!

Now I must go to bed. Even though all I did today was relax and watch tv (in my new living room!!!), I didn't get a nap. So, sleep is much needed!! Good night!

A Brand New Living Room



Monday, August 13, 2007

Oh The Possibilities!

I know, it's been awhile since I wrote. I was reminded of this by a good friend! lol

It seems so much has beeg going on, and the summer is just sliding away so fast. This week will be pretty busy come Thursday. I am leaving in the early morning with my dad to go to Cleveland, so I can finally take the first dose of my new medicine, Revatio!! I'm so happy about this, because lately I've been feeling a little more short of breath. And I've gotten back into exercising again, and I know I'm not doing as well as I was before. So I truly hope Revatio works for me, and gives me more energy to get through things! I have heard some of my PHriends say it's worked right away, so that is good to know! Wish me luck!!

My living room rug is being ripped out this weekend by my wonderful friends!! I've slowly been packing things in boxes so it's easier to move the furniture out of there. I just cannot wait for it to be gone!! I really am going to feel like I have a modern living room when it's out of there. And my friend bought me an awesome area rug that I saw, and it will look so good in the room. So by the end of this weekend, I will be out of the 70s in the living room!!! lol