Friday, December 18, 2009

Almost Time

It's hard to believe that Christmas is one week away. I started buying gifts for friends and family over the summer, which is becoming sort of a tradition for me. Since I save money every month for Christmas, I have a good amount by summertime to start thinking and browsing for gifts. It makes things so much less stressful when the holidays do come around! Of course, I think I should really wrap the gifts as I get them over the summer and fall, too. I feel like I've been wrapping forever!

With Christmas approaching so quickly, I am also finding it hard to believe that we're about to start a new year. But what has astounded me even more is that we're about to start a whole new decade! Where in the world did the past 1o years go?? I started the year 2000 sick. I rang in that new decade with my boyfriend at the time, in my living room, and under blankets because I was battling a cold. It's hard to fathom that in 10 years, so much is different. But yet, there is so much also the same. For one thing, I am still living here all these years, about to celebrate 11 years on January 2nd in this apartment I call home. It's gone through many physical changes: new wall colors in the living room, computer room, and my bedroom (twice in there, actually). After years of dealing with carpeting throughout the entire place, except in the kitchen and bathroom, they were ripped out to show the beautiful hardwood underneath that I just love! I can only hope and pray that maybe in the next decade, the one change I want most will happen: a new kitchen floor!! I'll keep my fingers crossed on that one!!

Other changes this decade included having to quit my teaching job that I loved, and so far, never working again. I "retired" at the age of 24 in the spring of 2000. It was never something I had even considered doing. If my PCP hadn't told me to quit, I would've just run myself into the ground, getting sicker and sicker until something even worse would've happened. So she told me to quit my job, I did the day she told me to, and I felt a little lost for awhile. I took a good amount of time to get back on my feet and feeling someone decent after being sick all that year. In the meantime, I decided to finish my grad degree that I had started, and just figure out what the next step was supposed to be.

This decade finally brought me treatment for pulmonary hypertension! I started going to the Cleveland Clinic in 2002 after dealing with worsened PH symptoms that I actually thought might be asthma. Well, it wasn't. Even growing up with this disease didn't mean I really understood everything that went with it. Since I also have a congenital heart condition, we focused mainly on my heart growing up, spending years getting echoes and making sure it was functioning well. Yes, I had PH, but no one was doing much for that since my parents and eventually I didn't know about it all that much. So when I started going to Cleveland for a lung transplant evaluation, I began learning sooooo much more about PH! My journey with oxygen began in the summer of 2002, something I was extremely self-concious about, and now I could care less. I started Tracleer in October 2003, and it was the start of a whole new way of living for me. After a couple months, I could do something without feeling so short of breath that I'd have to spend hours recovering. Even if I did get SOB, it would be a matter of minutes for me to get my breath back after I began Tracleer. What a major difference! Tracleer worked for me for many years, but in August 2007, Revatio was added. It not only helped me with more energy for doing things, but I could also tell people that I was on Viagra! I think the last part of helping me to live with PH is adding pulmonary rehab to the mix last September (2008). It has helped me so much with my daily functioning. I feel as if I have a little more energy to get through most of my days. Sure, I still have some bad ones, but they don't seem to be as often as I remember. So all in all, this decade of living with PH and congenital heart disease seems to be quite a bit better than the rest of my years beforehand! I hope and pray that it continues for as long as possible!

They say that friends come and go throughout your life, and I do agree with that. I lost my best friend this past decade, someone I was best friends with for almost 25 years. When I started getting even more sick, and not always able to do the things we used to do all the time (especially going out), she seemed to withdraw. She also didn't seem to care. When I found out she did something I found was rather nasty, I stopped calling her. The most difficult part about all this was that she lived down the street at the time, and I'd see her almost every day driving by. It was like going through a death, but she wasn't dead. Our friendship was. I grieved for all the times we spent doing things, hanging out, the secrets we shared, the tears we cried. She only tried once to reconnect, but things just weren't the same. I didn't trust her. I didn't believe she was genuine. And I actually realized she had been like that the entire time we were friends. Who needs someone like that in their life?

What I did gain this decade were several very close friendships. I treasure my friends: Erin & Eve, my best friends from high school; Renee, who I met during grad school, even though I didn't like her at first (love her now, though!! lol); Monique and Jeannie, who are my coffee buddies and occasional movie buddies; Deidre, who I met through Monique, but our friendship seemed to blossom totally on it's own after she had her accident years ago; Michelle, who I don't see too often, but her words and friendship often lift me up; and Karen, my dear friend from college who I don't see for very long stretches of time, but who is so special. These lovely ladies mean so much to me in different ways, and I don't know what I'd do without them. They have been there for me during my darkest times, when I've been sick and unable to get out of the house, they either call to make sure I'm ok, stop by if they can, or send me cards to let me know they care. They make me laugh, they try to understand even if they possibly can't, and they are my rocks. I pray these wonderful friends stay with me forever!

I have also gained many phriends this decade, people with PH who know what it's like to live with this disease and share it's ups and downs. When I first found the Pulmonary Hypertension Association website, I was overwhelmed by the posts of people who were describing everything I grew up with. I spent days reading the boards before posting myself. I joined the chatrooms. I've learned so much from the people there. I started new phriendships. I lost many phriends, the worst one this year being Mason. But despite the losses, there is always hope on the boards and chats, and in the PH community in general. I started my own support group in Buffalo/Niagara Falls, and it has been one of the best things I've ever done, not only for me, but for the people who come to the meetings. I am so thankful for being able to help others living with this disease, from posting messages on the boards, to hosting 2 PH chats, to helping those who have found my number and call because they need questions answered. I hope I am able to help others for a long time to come, because I have found it really rewarding! I may not be able to teach in a classroom, but I have found a new way to teach about a topic really important to me!

Mandy and Lisa both got married during this decade, in 2004 and 2006, respectively. Since then, I've gained a niece and 2 nephews! I became an aunt for the first time in 2005, and it's been a wonderful experience. I love my niece and nephews so very much. They are just so adorable, and smart! I hope and pray that I get to see them grow up into awesome people. They are very special to all of us already in their short times here!

I had my own "kid" right at the end of the year 2000. My furry little man has made me so happy. I've always wanted a cat growing up, but could never have one because half my family's allergic to them. So Erin gave me Mittens as a Christmas gift in 2000, and I've raised him from a tiny 2lb little ball of fur to a huge 23lb ball of fur! I love him tremendously, and I don't think of him as just a pet. He hangs out with me when I'm sick or sad, and he makes me laugh. He also makes me a little pissed at times, too, but no kid is perfect! No mommy is, either. I know I've ticked him off plenty of times, too! But he's my baby, and I'm so thankful that I've had him all this time so far!

I'm not even going to get into relationships, because I had my heart broken twice during this decade. I'm at the point now where I just go with the flow. If I happen to find someone, wonderful! If I don't, big whoop! And that's that! lol

I feel I've personally grown this decade, in how I respond to things and how I handle things. I am so thankful I'm able to live on my own, and to lead a fairly good life, even if I have to take it slower than most. I push myself a lot of times, sometimes pay for it the next day (or days), but those are the decisions I make, and thank goodness I can make them! I really hope the next decade will help me continue to grow into a person who has the strength to deal with whatever is thrown her way. I'm sure there will be lots of surprises, probably sadness, but lots of joy and happiness, too. I'm ready for whatever comes my way in the next decade!!

Wednesday, December 02, 2009

Are You A Donor?

Many moons ago, after losing my teaching job, and trying to figure out how to make ends meet, a friend suggested I become a tutor for the AOL Ask-A-Tutor program. I thought about it, and decided to sign up. I had to go through training, and after that, I started helping in the English tutoring room. The incentive allowed me to get AOL for free each month, about a $21 savings. That was my initiative for joining. But after several months, I started becoming friends with some of the other teachers, and it became more of a social gathering besides just helping students. I tutored at least 4 hours a week, sometimes more, and it was a pretty good time!

A few years ago, AOL stupidly shut down the tutoring program. I soon become an ex-customer of AOL, and found out a bit later that some of the people from the tutoring program had created a new program that gave free tutoring to students from all over the world. I decided to continue to be a volunteer, and I've been doing it since. Not too many of the tutors I used to work with on AOL came to PATH, but I did keep in touch with several. One of them who is still working with us is Dave. He's a pretty funny guy! What I admire about him most is the passion he has for organ donation awareness. It began when he decided one day while renewing his license to sign his card for donation. Unfortunately, organ donation hit so close to home when he lost his daughter, Carrie, when she was 18. In his grief, he agreed to let the doctors use any organs they could to save others. What an incredible gift to give while trying to deal with such a sad loss. Dave has been able to meet the woman who received Carrie's lungs, and they've really become a part of each other's lives. Recently, Dave agreed to be interviewed about organ donation where he lives, in Maryland. If you'd like to see his interview, please click here.

Organ donation is such an important part of the cycle of life. Out of tragedies, another life can be saved. When someone dies, their organs can no longer be used. Instead of burying perfectly good organs, why not donate them to continue the life of someone who so desparately needs it? Even if someone can't donate certain organs because of disease, something can be used! Skin tissues, corneas, even bone sometimes, can be transplanted. Please consider organ donation if you haven't already become a donor. And make sure you discuss it with family. They need to know your wishes of being a donor, too!