Thursday, April 29, 2010

All Things PH

The first weekend of May will be mostly PH-related for me. Saturday will be my PH support group meeting, and we'll be discussing the benefits of pulmonary rehab. I'm happy that someone from the rehab center I go to will talk to my group, and even show us the gym because the meeting is in the same hospital I go for rehab, and the meeting room is right down the hall from it! The group should go well, and I'm happy to be seeing many of my regulars at the meeting. I only do them twice a year now, so it's always nice to see the familiar faces, although newbies are always more than welcome, too!

At some point Sunday, my parents and I will be driving to Cleveland. We usually need to stay the night since my appointments are never late enough for us to just drive there in the early morning. Unless we want to get up at 4am to leave by 4:30. Nooooooo thank you. Monday will be my tests and doctor visits. I'm not expecting any surprises. And yet I keep saying that, and watch, something will alarm them enough to either increase a med I'm on or add one. I'm hoping not! Despite the emotional roller coaster I've been on in the last year, and especially in the last couple months, I've physically been doing ok. I attribute so much of it to rehab. I'm very thankful that my doctors said to go for it, and I'm so glad it's close enough to my house that I'm able to go twice a week. I think it does wonders for my body, but also my mind. The people I workout with are just great, and the hour I spend there goes by pretty quick! So I feel all that has made a big impact on allowing my health and my PH be pretty stable in the last year and a half. I can only pray that it continues to go that way!

The only test I really despise is the 6 minute walk (6mw). I don't care how well I'm doing all year long, or while walking on the treadmill. That 6 minutes is the longest and the most tiring in the entire year!! lol I'm really happy my doctor doesn't base my entire health on that test, because it sure does not represent how I'm doing in my daily life. Of course, I'm going to do the best I can, but it's just not something I look forward to. I wish they'd let me listen to my headphones during that time. I'd find it a bit more tolerable if they could. lol

Tuesday, April 27, 2010

Passing Time and Starting Over

It's hard to believe that May is right around the corner. I'm not quite sure where this month went. It seemed to just zoom by. I had to glance at my calendar to see if there was anything significant I did in the past several weeks, and there were a few things listed. I seem to have a very short memory lately.

I went out to dinner on Saturday with a bunch of friends to celebrate Dee's 36th birthday. While it was a really fun time, I kinda got sad listening to a few of them talk about guys and dating. They were really frustrated with men, and the lack of decent ones out there. One of my friends was supposed to be married 4 years this month, but her ex-fiance broke it off a week before they were going to walk down the aisle. She knows now how much that was a blessing, but ever since then, the relationships she has had have been aggravating. And it seems no guy out there is willing to make the commitments anymore, or maybe it's just that she still hasn't found that one who is.

Talking about all this just got to me because I still really miss Euan. And even though I know he's never coming back, just the thought of starting over and trying to find someone to be with is upsetting. I didn't want to start over. I really wanted to be with him. I know that life doesn't always work the way we want it to. I keep wondering if we just really weren't never meant to be together anyway. Of course, I would have accepted that if he was still here. I just wanted to be a part of his life. I didn't want for him to pass away.

For the longest time I didn't mind being single. I fend for myself on my own, for the most part. I am happy with my friends and family, and just being able to do the things I want. But for the last several months, I've really been thinking about what my future holds. My parents aren't going to be around forever. Even if they continue to live for another several decades, eventually they aren't going to be able to help me the way they have been. I can't see my dad still trying to get buckets of litter for me when he's in his 80s. And my mom won't always be my grocery buddy. Then there are my sisters. Lisa lives in NC, so obviously she can't do anything for me (unless I move down there, and I don't think that's happening). Mandy is busy with her kids right now, even though I know if I asked, she would help me with something. But I know she eventually wants a job again when both kids are in school, and then there is the possibility of them moving out of the Falls. And Joan, well I don't know. She's getting married at some point, and none of us know where she'll be living yet. The thing is, they have families, and I don't expect them to be able to be there for me if I need something. I already feel guilty sometimes asking for help, even though I know that is what family is there for.

I love my friends all very much, and I know they'd help me out, but they also have busy lives. I guess maybe asking for help is the biggest issue I am having. But, this brings me to think about having a special someone in my life. I almost feel like I want that just to get help doing day-to-day things. Kinda silly. lol But I guess lately the thought of being by myself sort of scares me. And I guess, too, I admit to being a little lonely. I just wonder if there is a guy out there who could love me for me, and accept me with all my limitations. I mean, I do have phriends who are in relationships, and their significant other is supportive. It does happen! I have just never found that, except for with Euan. And I just don't know if I can ever find that again.

What I DO know is that I still need time. Euan is still in my heart, and he always will be. I'm still in the guilty stage, where I feel like I'm betraying him when I look at guys and think "Oh, he's cute," or "I wonder if that guy is single." I started signing up for one of those dating websites, got mostly through it, and then clicked off the site and started crying. I felt awful for even considering it, and I just wanted Euan back. So, I know that I'm totally not ready to consider trying to date right now. I realize that I have so many emotions and feelings to get through before that ever happens, if it ever does.

Thursday, April 22, 2010

Sinus Misery

The change of seasons usually brings me more shortness of breath and tiredness, but the change into spring especially is torture. Not only do I feel like I'm catching my breath doing simple things, but my face feels like someone has taken a hammer to it. I don't have allergies. Thank goodness! I don't have a runny nose or itchy eyes, I'm not sneezing or anything, and I've never been like that growing up. But the past several years have brought sinus headaches, and this week has been so crappy. I've had a sinus headache for 4 days now. A couple days they've felt like sinus migraines. This morning I took an Excedrin Migraine about 10 minutes after I woke up. I really hate taking it, and I usually try to wait as long as possible before taking Exedrin or Tylenol, but I knew I'd be in trouble if I didn't take it this morning. It really didn't work as well as I hoped, but I still went to pulmonary rehab, and then met my friend for lunch. I guess I'm glad I'm trying to function as much as possible with these stupid headaches! I can't wait until they start lightening up!!

Monday, April 19, 2010

A(n) (Re)Introduction

I have noticed that ever since I've become a part of the Wellsphere website, my blog has been getting many new visitors. I've received a couple new readers who have left kind comments (thank you so much), and I realize that I probably have many silent readers who either don't have anything to say, or just don't know how to say it. I figured since my blog is looooooooong, considering I've had it at least 5 years, that perhaps I'd do an introduction of myself. And for any of my long-term readers out there, here's a reintroduction!

I was diagnosed at 9 months old with congenital heart disease and pulmonary hypertension. Basically, my heart has 2 holes in it, and my lungs don't make it easy for me to breathe. My pulmonary artery is constricted, causing a lot of shortness of breath and fatigue when doing almost anything. Pulmonary hypertension (PH) was barely even known back when I was diagnosed, and my parents were told that it was too late to try closing the holes in my heart. They told my parents I might not make it to my first birthday, or that I could possibly live until I was 50. I honestly don't think they expected me to live as long as I have so far, 34 years. Ha, fooled them!

I grew up only taking one medicine for my heart to help it beat better, but there was absolutely nothing to treat the PH. So I was put on a lot of restrictions. No gym class, ever. No sports, ever. No dance classes, ever (although I did try a few dance classes when I was little and it was just too much for me to handle). I ran around the neighborhood with my sisters and all the other kids as much as I could, but I had an awful lot of time outs. I did participate in other things, such as organ lessons, Girl Scouts, Art Wheels. I grew up knowing that I couldn't do a lot of the physical things everyone else could, which sometimes bothered me, and sometimes didn't. I'm thankful that I accepted most limitations, because I really don't believe I'd still be here if I pushed them.

This doesn't mean I never had symptoms. Oooooh, I sure did. And looking back, I really wonder how I made it this long with how bad the symptoms were at some points. Sometimes my heart felt like it wanted to come right out of my chest when I'd do something simple as make the bed, or clean the bathroom, or sweep the floor. Even walking a distance would get me so exhausted. But naps always helped me (and they still do!), or just resting for a bit before continuing on. Somehow I made it. Somehow.

When I was in 8th grade, I used to go down to the 1st grade classroom to help the teacher while my classmates had gym class. All the times I helped out made me realize how much I liked being in the classroom, and my dream of being a teacher was born. So after high school, I went to college and got my BA in elementary education. After graduation, I subbed a little bit before getting a job at a daycare as a teacher. Two months later, I got a job as a teacher for Headstart. I fell in love with preschoolers! Well, mostly! lol I really liked the job for the first couple of years, but in my third year, I found myself a lot more tired. Of course, I was going back to grad school for my master's degree, and I was also dating someone and going out a lot on weekends. That third year at Headstart, I kept getting sick, and not just your average head cold. I had double pneumonia, bronchitis, and was on my third respiratory illness when my PCP told me that I must quit my job. That was 10 years ago today. Although I was so upset about it back then (what 24 year old decides to retire at that age??), I look back and consider it such a blessing. If my doctor hadn't told me to stop working, I would've kept pushing myself and been in worse shape than I was. I know how terrible she felt at first telling me to quit, but even she tells me today that if she hadn't, I might not be here.

I was at a loss when I stopped working, but I decided to finish my master's degree anyway, and I'm proud that I have it. After that, I didn't know what I was supposed to do with myself. I had started going to the Cleveland Clinic in Ohio to see specialists, originally for a lung transplant evaluation. My first trip there included a lot of tests, and I was told to start Coumadin (a blood thinner) and to wear oxygen 24/7. I bawled my eyes out most of the ride home. Oxygen all the time?? I couldn't bear that thought! But, there wasn't anything I could do about it, and it took a very very long time for me to accept wearing it out in public. Nowadays, though, I couldn't care less! I wear it and forget I have it on most of the time until someone (a curious old person, an inquisitive child, a rude busybody who just has to know if I smoked) reminds me that yes, plastic is running up my nose! But I know that it helps me, so I wear it, and that's that!

Subsequent trips to Cleveland started my discovery of exactly what pulmonary hypertension was, and everything that went along with it. I grew up going to my cardiologist just to make sure my heart was doing ok, but I had no idea what PH was all about. I only knew the name of it, something I couldn't always manage to say as a kid. So, I started a medicine called Tracleer (bosentan), a pill taken twice a day. I found out about the PH Association, went to their website, and spent over a week in tears while reading the message boards because there were other people like me out there! They knew exactly what I felt like growing up, all the symptoms, all the frustrations, all the feelings that I'd had a lot as I continued to survive this dratted disease. It was as if I'd found my 2nd home! This was in 2003, and I continue to be an active participant in the PH community, both on the boards and the chatrooms as a moderator. Facebook has currently become a huge boom for PHers not only around the country, but around the world. Being able to connect to others who completely understand what you're dealing with makes the disease a smidgen bit more tolerable. In 2007, I started Revatio (Viagra!), and the combination of Tracleer and Revatio have been working pretty good to keep me stable. Oh, I still have days that are bad, when all I want to do is just spend the day in bed and rest, but they aren't constant anymore. Adding pulmonary rehab to the mix in September 2008 really made a huge difference as well. Wait, exercising?? After not taking gym or playing sports all my life, I could exercise?? Yes!! I'm not running miles, I'm not doing hard core exercising. I'm doing what I am able to do at my own pace: walking on the treadmill, lifting 6lb weights (I started at 2lbs), going on the stationary bikes, and using the arm cycle machines (like a stationary bike for your arms!). I started out really slow, and I've been able to build up over all this time to actually have some pretty fabulous muscles! Whooo hoo! Rehab has really helped me with what I'm able to do, and I hope that I can continue doing it forever!

So, what exactly do I do with my time? Well, I make jewelry. That started out of necessity when I couldn't afford buying Christmas gifts for all of my friends one year. I made bracelets with beads I had from another project, and after that, I started making necklaces, then earrings. I've changed the way I've made things over the years, much better than when I was starting out! It keeps me busy, and I've acquired quite an addiction to glass beads! I also run a PH support group in my area, because the closest one to me at the time I started it was back in Cleveland. I didn't want to travel 4 hours just for a meeting that was a couple hours. I figured that there were other people in my area who had PH, and would probably like to meet people who they could relate to, so I began the group. It's been a blessing to me, and to the many people who have attended meetings. I am able to spend time with my family and my friends when I can, and I'm so thankful for that. I am also extremely glad that when I DO feel like I'm having a bad day, I can rest instead of working and making myself worse. I keep myself busy and I'm just happy that I am still here. My biggest goal right now is to turn 40. I want a huge party, and I'd like to raise awareness of PH with my celebration. I've got 5.5 years to go before this happens, but it's better to plan ahead of time!

So that, in a nutshell, is my story. At least my life so far with PH and congenital heart disease. There are so many more aspects to my life that make me who I am, but the biggest reason I write nowadays is to showcase what it's like living with a disease that knows no boundaries. If you would like to find out more about PH, please go to the PH Association. PH doesn't care who you are, if you're man or woman, a child or adult of any age, the color of your skin, it can strike anyone at any time and for any reason (and sometimes there isn't a reason). Awareness is the key to get this disease more well-known, because right now, many doctors don't even know what it is!

Thank you for reading to all of you who come across my blog. And please, feel free any time to say hi. :)

Saturday, April 17, 2010


Yesterday I spent much of the day thinking about Euan while doing things jewelry-related. I really wish that it would have been one month of celebrating having his new heart. Instead, I thought about the six years of friendship that we had. I thought about the first message I received from him, and how that message piqued my curiosity. I thought about the first time we had met in person, and how much we really had in common. I remembered when we first discovered that we actually had more feelings for each other than we thought, how it surprised both of us because neither of us thought the other had felt the same. I remembered how wonderful it was to fall in love with him, and to actually have him return the feelings. I remember the evening we spent together here, visiting and laughing, and sharing a kiss that both of us still recalled with much fondness a couple years later. I remember the last conversation we had over a month ago, knowing how much we both were hoping that we could spend so much time together after he had a new heart. My heart is still really sad that he is gone, and still in some disbelief, but I'm trying to think differently now. There is nothing, NOTHING, I can do to bring him back. No amount of wishes or hopes will make the fact that he is gone change. So the only thing I can do is just accept it and think about everything that Euan meant to me. He was a very dear person in my life, and I will never forget the words we shared, the laughs we had, and the love that will forever be in my heart.

Wednesday, April 14, 2010

Thankful Choices

A year ago yesterday, I wrote to Euan asking him how he was doing after we hadn't spoken or written in almost 8 months. We had gotten mad at each other for a few reasons, and made the decision to part ways. In the month before I had finally emailed him again, all I could do was think about how he was doing and if he was ok. I had never stopped caring about him. I had never stopped loving him. I remember writing the email to him with shaky hands, because I was so nervous that he would either be mad that I wrote, or that something might have happened in those lost months of communication to him, and I wouldn't hear from him at all. I pressed the send key, and just had to hope for something.

A year ago today, Euan wrote me back. He was happy to hear from me, and he apologized for what happened months ago. He had some ups and downs with his health in the months we didn't talk, but he was stable at the point when he had written. He said that he felt like he had lost his best friend, and that he had loved me more than he had ever loved anyone else. He still wanted to keep in touch with me, and hoped I wanted the same. And I did.

Today I am extremely thankful for going with my gut last year, and the courage to email Euan and find out how he was doing. If I hadn't, and found out that he had died without me even knowing how he was doing for all that time, I would be in worse agony than I already am. Because then I would've been so upset that we had left things horribly instead of becoming so close again this last year of his life.

Euan, thank you for being the kind person you were, the caring person you were. Of course, you and I were so much alike, that I know I would've done the same for you. I miss you terribly.

Monday, April 12, 2010

True Devotion

The area around the buildings where my dad works often brings about a collection of different wildlife. While I've never seen anything except for hawks flying about searching for lunch or dinner when I've gone there, my dad has seen deer, foxes, I think coyotes, rabbits, and various other critters. For the past few years at least, a pair of Canadian geese have come to visit quite often. I think they get treats when my dad has them, because I can't imagine they'd come back all the time for nothing.

Saturday, my dad heard honking, and turned to see a goose right near him. He looked around, but didn't see the goose's mate. The goose honked crazily at my dad, and turned around to walk toward one of the fences, as if it wanted my dad to follow it. Well, he did, and sadly found the other goose laying at the bottom of the fence. He isn't sure what happened, but thinks the goose must've hit the fence. He got some gloves and walked over to it, and realized that it had died. He actually got tears. Meanwhile, the other goose kept close by and kept honking. My dad picked up the poor dead goose, and placed it in another area to get it out of the way. The goose's partner just hung around it's deceased beloved, honking sadly. I find it amazing that this goose knew enough to get some help, and that it was sad that it's partner had passed. No one can tell me that animals don't have feelings. I don't believe it for a second.

Saturday, April 10, 2010

Baby Steps

Every day I seem to feel a tiny itsy bitsy better in the pain I've been feeling since Euan died. Very miniscule steps make me feel not so sad, although it's going to be a very long time until I'm just ok with it. There still isn't a moment I don't think about him, and I still have my crying spells, but it's not as bas as in the beginning. I almost feel guilty about it, but he would be proud of me. He'd want me to keep living, to keep helping others, to keep making jewelry, to just keep being me. So because of that, I try my best.

This weekend is a busy one. I went to a baby shower today that was rather entertaining. Kat's brothers, Joey and Phil, put on the shower for her, and it was a small gathering of friends. I went with Mandy and Joan. We got there, and as soon as we walked in the door, I could hear dance music. That's Joey's doing! I was thinking, whoo hoo! We said hi to Kat, and she took us to see the baby's room. It was beautiful, lovely colors, a beautiful crib, and all sorts of decorative things adorning the room. Her theme was Where The Wild Things Are, but all I could see representing that theme was a gorgeous blanket with the wild things dancing with Max. We went back downstairs after chatting for awhile, had some drinks, talked with some others, and then played a game. Joey had made a sheet of questions, some of them very hard, and after we all handed them back and he corrected them, 4 people were tied, including myself! So, he took a jar of candy on Kat's table, and the 4 of us had to guess how many were in the jar. I stared at it for a few seconds when it was my turn to guess, and I said 54. He went to count the candy pieces, and came back and said the number was 55. Yay, I won!! I got a basket that Joey said represented the young at heart, with a Scooby Doo DVD, a Cars-themed Bingo and Tic Tac Toe game, and boxes of candy. Mmmmmm!

We all ate some really good food and chatted a bit more before Kat opened up her gifts. Mine was last, and she kept wanting to know what the black fur stuff was that she saw peeking past the tissue paper. Well, she was so excited when she finally got to it because I had bought the Where The Wild Things Are book, along with a Max doll and one of the Wild Things dolls! She said they had been trying so hard to find the dolls, even on ebay, and she didn't have any luck. That made me so happy! I bought them back in January when I found them at Barnes & Noble on sale! She didn't have the book, either, so I was very glad that I got her that gift. :)

Kat finished opening her gifts, and then Joey had a surprise. Two of his friends came down the stairs in adult footy pajamas, and stripped down to the diapers they were wearing. LOL! We were like oh my gosh!! Joey said that since Kat didn't have a proper bachelorette with the strippers, that this was a combo. You have to know Joey to know that he's so crazy!! But funny! We were all cracking up, and the two guys zoomed back upstairs to get their clothes back on. I have to say I will never ever be at another baby shower like that. I think it's the best one ever!

I took a nap when I got home, which probably wasn't a good thing since I slept from about 6 to 7pm. I hope I won't be up all night. Tomorrow is a boutique night that Mandy and I will be participating in with our jewelry. It's not really at night, it's in the afternoon. I just hope it goes well, and we sell some stuff! I'm pretty much ready for it, but I'm going back now to see if I can whip up any quick bracelets. Break time is over!

Thursday, April 08, 2010

Organ Donation Awareness Month

April is the official month for Organ Donation Awareness. I never in my life thought I'd know so many people who've had a transplant, or are still in need of one. I guess that's what happens when you're living with an illness where a transplant could possibly be one of the last few resorts to treating the disease. While I have never undergone a transplant evaluation, it may one day be on the table for me if the meds I'm on stop being effective, and other possible meds don't work. When could that be? I'm not sure. It may be several years from now, and it may be never. I sure hope it would be never, but long ago, I did decide that I'd go through with a transplant if I needed one. I figured that God has gotten me this far along in life, I'm sure He'd see me through a life-changing surgery.

In the past 2 months alone, I can count on one hand the people I know who have gone through successful lung transplants. All of them continue to do well. A couple of them got out of the hospital only a couple weeks after surgery, which is just amazing. One of them is still in the hospital, but she's slowly recovering. They are all beyond grateful to the chance at a 2nd life, the chance to continue living their life with the ones they love. And, of course, they are tremendously grateful to the person who decided to be a donor. That person gave the gift of life to someone in need, and it is a wonderful gift to give.

Obviously, having a transplant doesn't not always succeed. Being slapped in the face with Euan's passing during his heart transplant has actually made me wonder if I really would go through with the surgery if I was faced with it one day. Yes, there are risks. There are complications, something could go terribly wrong, as in Euan's case. And yet, there are also successes. To know that a few of my friends are now breathing on their own, and able to do things they once could before illness struck them down, is just beyond amazing. I hope their new lease on life continues for so many more years to come. Having a transplant for me would be like a completely new life. I've never known what it's like to grow up being able to breathe normally without gasping for breathe doing simple tasks. So having new lungs would really be like a rebirth. I don't know, if I'm ever faced with the decision on needing new lungs, I think I will decide to do it, but things could change if I actually am facing it head on.

If you have not considered organ donation, I encourage you to talk about it with your loved ones. There really is no reason good organs should go to waste when someone dies, when they can be used to help another person live longer. It's the most wonderful gift anyone can give. To find out more information, please visit the Organ Donor website.

Saturday, April 03, 2010


I try to read our local newspaper online every night, mainly to see what's happening, but also to see who has died. Morbid? Maybe to some, but I just like to know. Last night, I found out a man who I grew up knowing a few doors down and across the street from my parents' house had died on Wednesday. It dawned on me that that must've been the reason why I had heard a fire truck roaring down my street Wednesday evening, slowing down near my parents' house (which got me a bit worried). An ambulance followed shortly after. They took him to the hospital, where he passed away a short time after.

According to the paper, Mr. S. was 96 years old. 96. I knew he was old, but didn't realize he was that old. And still driving!! I'd always see his car, and whenver I did, I would always think to myself, "Aww, the S's." His wife was usually in the passenger seat, and they'd be on their way somewhere. I adored the S's. I don't know why. I'd be worried if I saw Mr. S and not Mrs. S, and vice versa. Of course, I never saw Mrs. S. alone, simply because she never drove. But every time I saw them together, I saw the love they still had for each other after all those decades of being married. They were married 72 years. That's so hard to believe, especially this day and age when some people's marriages seem to end before the ceremony is over. The S's were obviously very much devoted to each other, and it always made me smile to see them together, whether it was at church, in Wegmans, or Walmart, or seeing them walking down the street. I admired them immensely. I'm sad that he is gone, and I wonder how much longer it'll be before she follows her true love to heaven.

Knowing how long the S's had been together, seeing them grow old together and still seeing them care for each other very much makes me wonder if I'll ever have that. I didn't want that for the longest time. I thought I didn't need someone else to make me happy. Well, I don't. But I feel I need someone to make me complete. I really wanted that with Euan. I thought I had found my better half in him. I really felt that we were meant for each other, and I keep wondering how and why that never worked out. Was I completely wrong? Why is it that there are some people who easily find their better half and stick with them for the rest of their lives, and there are other people who happen to have 2 or more loves throughout their lives, and I can't even get to be with the one person I truly wanted to spend the rest of my life with? Obviously no one can answer these questions. All I know right now is that I feel so alone, and I feel lost and as if I've been gyped. I guess I'm still on an emotional rollercoaster since Euan died. I sure hope the ride ends very soon.