Sunday, September 30, 2007

Going To Cleveland

I'm leaving for Cleveland in a couple hours. I have appts tomorrow with my PH doctor, including an echo and 6 minute walk (blah! lol). I'm still feeling short of breath, although it's starting to calm down a bit. I've been tired the past week, but I've also been doing alot, too. I've got so much on my mind for October, that I'm starting to stress. I have felt a few heart palpitations, especially yesterday. Today's been good so far. So I'm glad I'm going to Cleveland. Hopefully Dr. Gildea will finally put me on the full dose of Revatio. And then I can really see if it'll help me!

The ice cream truck just drove by. I'm sorry, but I think it's time to give it up for the season!!! Sorry, had to vent. lol

Well I must get something to eat, and maybe take a little nap before leaving soon. I'll post results of my appointment soon!

Monday, September 24, 2007

This and That

My weekend went by quick, and it wasn't all that exciting. It was basically relaxing, and not doing much. I mean really, I don't think I did anything truly productive. I talked to a few friends for awhile. On my NEW PHONE. hehe I added almost 300 songs to my phone yesterday, and that took me quite awhile! So I guess I did do something! lol

Today I've been pretty busy, and it's such a difference from over the weekend. I am preparing for an upcoming PH support group meeting next month. I'm having a couple student speakers talk about diet and nutrition, and I think it'll be a good turnout. So this morning, I called a representative for Gilead, a pharmaceutical company that distributes the newest FDA approved treatment for PH, which is Letairis. He is actually a local person! And he knows so many of the doctors and hospitals in this area who are diagnosing and treating PH patients. I had a great conversation with him. He is willing to attend my meeting, and also provide lunch. Yay!! All I need now is the girl's last name who is coming to speak, so I can have it on my invitations. I hope she calls me soon, or else I'll just forget it, and I'll introduce her the day of the meeting. lol

I also called a number my mom gave me yesterday to ask about an upcoming flea market that is very close by. It's on October 6th, at the site of a former school. I have put my name down for a table. I hope to sell alot of my jewelry and lamps, but we'll see what happens! I also hope it won't be too cold, since it's an outdoor event. I'm glad my mom saw the number in the paper a couple times. I'm also glad she remembered to tell me!

Let's see, oh I also walked on the treadmill earlier! I got a 1/2 mile in, and it wasn't too terrible. My legs didn't feel like lead like they did a week ago when I tried walking. I did stretches and some weights, too. I hope I can do it a few more times this week. I go back to Cleveland for tests on Monday, and I have a feeling my walk won't be any better than last time. But, we shall see!

I have to babysit shortly for my friend, Jeannie. Her little baby is so cute. I've watched him a few times already, and all he's done is sleep! I hope he keeps that up. lol I'm happy that I can help her out for an hour a few times a week. She's relieved because it's someone she knows. I'm relieved because it's a little extra money! So far it's been going towards bills! Bleck!!

I'm going to Mandy's tomorrow morning. I haven't seen her in almost 2 weeks! I miss my sistore! I miss her kids! Her hubby is leaving tonight for a business trip, so she definitely needs some reinforcements to keep her sane. I'm not sure sending me in is the best choice, but hey, better than nothing!! hehe

Guess that's it for now! Gotta go take Revatio! :)

Friday, September 21, 2007

Patiently Waiting

My week has been ok. Not the best PH-wise, but I'm hanging in there. I'm still very short of breath, which has been driving me nuts. I seriously hate this time of year. I keep thinking that maybe I'm really getting worse, but I go through this EVERY fall!! I can't understand it. I'm trying to patiently wait it out, but it's so frustrating. I go back to Cleveland on October 1st, and I can tell you right now that I won't be doing well on my 6mw. I've been trying to exercise, just doing 6 minutes on the treadmill, and it hasn't been going well. At least I know that if I don't do well, my doctor will most likely just say to increase my Revatio to the full dose, and see what happens after that. So that's my only consolation about that. I really just want things to calm down with the sob!!

Other than the PH crap, I bought some new things this week that I'm just excited about!! I got a lovely new lamp for my bedroom, and the shade goes perfectly with the red accents in the room!! I had to return the base of the lamp yesterday, since the shade wasn't fitting on it for some reason. I realized when I got a different one, that the base had a missing piece on it! So when I got back home last night with the new base, I put the shade on it, put the bulb in, and voila! There was my fabulous new lamp! I just LOVE it!! I also bought a new, comfy white bra. I know you really wanted to know that. LOL

Tuesday, I went to Verizon Wireless to compare 2 cellphones I had my eye on for the past couple weeks. My 2 year contract is up next week, which allows me to get $100 toward a new phone! I wanted to see the phones up close and personal, before I made my decision. I finally decided on the new dark cherry chocolate phone from LG. I'll be able to play mp3's on it!! I went back home after looking at the phones, and ordered it online. So the phone should be arriving via FedEx at any moment today!! I'm patiently waiting for it!! I can't wait to play around with my new toy. Of course, I'll have to charge it up first, so I'll have to patiently wait on that, too!! lol

Monday, September 17, 2007

32 Years

Today is my 32nd birthday. While some people like to blow off their birthdays when they get older, and try to deny their age, I celebrate every year I get! Living with PH all these years hasn't been an easy thing, and yet, somehow I've made it this far. I thank the Good Lord for all the days He has given me so far. Even when I've had some tough periods, He has always given me strength to get through them, even when I didn't feel all that strong. I also thank God for my family, who has been there for me in everything I've gone through. I love them tremendously, and feel blessed to have them in my life. I also feel the same with my dear friends. They are also a huge support system, in so many ways. And then there is my PHamily. I am so thankful for finding the PHA website, and realizing that there were other people who are, unfortunately, dealing with PH like I have been since birth. These people have truly been comforting and supportive, in a much different way than my family and friends. My PHamily truly understand where I'm coming from when I say I have no energy, or I feel so short of breath, or am worried about a side effect, etc. It's not that my family and friends don't understand, it's just that my PHamily completely gets it. So I love them just as much!!

So I thank everyone in my life for being who they are. I love you all so dearly, more than words can express. I hope you all know how much you mean to me! Thank you for being there for me, and I hope to have at least another 32 years here with you all! :)

Thursday, September 13, 2007

So Far, So Good!

It's been 2 nights so far that I've taken Revatio in a 20mg dose. So far, no headaches, no yucky metal taste in my mouth. My blood pressure has dropped within half an hour of the dose, but it's still in the normal range, so it hasn't been a problem. Yay!!! I'm going to call Svetlana tomorrow afternoon, to keep her updated. But so far, I'm glad that I've decided to up the dose, even though it's slight!

I am going to clean the kitchen table. I'm having friends over tomorrow night, and I guess the table should be cleared so we won't accidentally eat some beads. lol

Tuesday, September 11, 2007


I've been on Revatio for almost a month now. I started it August 16th, at a half a dose (meaning 30mg a day, not 60mg). My PH doc wanted to ease me onto it slowly, since a drop in blood pressure and headaches can be quite common when a patient starts it. I know that my body still needs time to adjust to it, and get used to it being in my system daily. I had some pretty horrendous headaches a couple weeks ago, but they are gone now. I really haven't noticed a change at all yet, though. However, the change of seasons always bothers me, and I also have not been on it all that long. Not to mention, I'm only on half of what I should be!

Today I called Svetlana, Dr. Gildea's nurse practitioner. I've been calling her weekly, to let her know how I've been feeling, how my blood pressure is, if I have headaches or any other weird symptoms, etc. I told her I haven't had a headache in awhile, and I've also been feeling short of breath lately. I told her I knew that was because of the weather. It's been getting cooler, and today was humid, and I could just feel it in my lungs. She asked if I wanted to just stick with half the dose until I see Dr. Gildea again on October 1st, or if I wanted to try taking 20mg for my last dose of the day. I decided to give the 20mg a go! I really didn't feel like waiting another 2 1/2 weeks before I got to increase the dose. So tonight I will be taking the first 20 mg dose. Actually, I will be taking it in about 10 minutes. lol I'm hoping I won't get a headache from it, but if I do, at least it's not that long before I get to go to bed. I'll make sure I take my blood pressure reading a couple times, too. I'll be calling Svetlana back again on Friday to let her know how it's going, and if it's causing issues, I can just decrease it again. But I'm keeping my fingers crossed that there won't be any! So wish me luck!! lol

Sunday, September 09, 2007

Fall Time!

I think it's quite obvious that I made some decoration changes to my blog! I'm all ready for Fall. Being that Fall isn't exactly one of my favorite seasons, I've surprised myself that I don't seem to mind it this year. Well, at least not yet, anyway. Technically, it's still Summer. But once we get past Labor Day, and the first day of school starts, I no longer see it as Summer! Fall signifies the start of changing weather patterns, which usually is a relief to many people with PH. Not to me, really. When the cooler weather starts, I usually feel more crappy and short of breath. Even despite being on two medicines now to help control those symptoms. Fall also means that Winter is on the way, and I HATE being cold!! I will also find out if getting rid of my carpets and having the hardwood floors was a good idea this summer. I hope the heat won't escape so easily when it's time to turn it on!

But this Fall, I also see a lot of promise and change. My Dad will have prostate cancer surgery in October. A friend of mine will be getting married in October, as well. I'm assuming at some point, my little nephew will be baptized. And I'm crossing my fingers that I will be able to attend Cleveland Clinic's symposium for PH in November. I'm hoping that suddenly, Revatio kicks in for me, and I can start exercising so much more again. So Fall is a little exciting, and a little apprehensive for me, too, this year. I just hope to see everything in a positive light, which I've been able to do alot lately!


It's a little hard to believe that a week has already passed by since I was in Horseheads for my aunt and uncle's surprise 50th birthday party! The week certainly has flown. But last weekend was definitely alot of fun, and a great way to end the busy summer I had this year!

Last Sunday was the day of the actual surprise party, but the whole weekend was a game of trying to get my uncle to simmer down before it happened. He found out Friday that almost all his sisters were in town (he has 9 sisters, and 1 brother!). When he found out his sister from Georgia was flying in, he was even more upset. He couldn't understand why everyone was there, and no one had really informed him until the last minute!! His daughter gave him the excuse that it was Labor Day weekend, and everyone happened to be free to come to Grandma's for a visit before the busy school year began. Well, ok. He kind of accepted that.

So the plan to get Bob and Jane to the surprise party was as follows:

My cousin, Ryhan (Bob and Jane's daughter), has a daycare. One of the kids in her daycare is her best friend Denise's daughter. Ryhan asked her parents to babysit Aubry (the daughter) while Ryhan helped Denise set up for her family's "Labor Day party." Aka The Surprise party. Then Bob and Jane were supposed to bring Aubry to the party around 5:15pm, and hang out for a little bit. What they were really supposed to be doing is coming their own party and hanging out alot more than just half an hour!

So, the plan was working for the most part. Besides the fact that Bob was perturbed. He came over to Grandma's house with Jane and Aubry on Sunday morning, and was talking about the fact that they had to show up to this "Labor Day party" later, and how they wanted to just skip it altogether, and let Denise pick up Aubry later. Of course, we couldn't say anything to them! We made the excuse that Beverly (one of Bob's sisters) was going to have all of us at her house for dinner around 6:30. So he thought, oh good, at least I'll get to see everyone! Needless to say, he would be seeing everyone, just at a different venue!

So later on, around 5pm, when most of the people are supposed to be at the surprise party location, Denise calls Bob to tell them to bring Aubry around 5:30. Well, 5:30 turned into 5:45. And then they ended up reluctantly showing up around 6pm. We all gathered around the closed doors until Bob opened up one of them, and we all yelled "Surprise!!" Jane immediately burst into tears, and called everyone jerks when she hugged them! They really had NO clue that they were going to their own surprise party! And it was just alot of fun to be involved in it!!

I was very happy to see so many of my family on my mom's side. She has a huge family! And I have a ton of cousins, 3 of which showed up at the party! One of them, I don't think I've seen in about 15 years, at least! So it was a great get-together! Of course, I don't think Ryhan will plan anything like this again. Poor girl, I think she was going to have a heart attack by the time the surprise day came! She had been planning this since last September!! So like I said before, it was really a wonderful way to end my very hectic summer!!