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Wednesday, July 31, 2013

A PHighting Disease Turned Into a PHenomenal Diagnosis

Haley Ann Lynn
When asked to do a guest blog of course, I excitingly agreed, then sat back and pondered on what the hell that exactly meant. Guest blogging? What was I supposed to be writing about or HOW was I supposed to be writing all this? Well, these lovely folks sent a list of writing ideas that I scanned over and after spending a day at the pool in the Texas heat, my idea came over me like a wave.

Who would I be without Pulmonary Hypertension? I tell people all the time, “Don’t let this disease define you, don’t let it consume you,” blah blah blah. But I ended up swallowing my own words because I've let nothing but this disease define me, for the good. Pulmonary Hypertension in a way rescued me, letting not only myself know, but skeptical others around me that in fact something WAS wrong. I was not normal; I was never meant to be normal. I've always been PHenomenal!

Rewinding far back into my life, the day I had my first episode, I was eleven years old in a 6th grade gym class. We were expected to run these laps, and I just rolled my eyes—being the pre-teen I was—because for some reason I never enjoyed gym. This particular gym class was crowded with athletic girls who participated in track and basketball.  It made this this task just so uneasy. That day during my laps, I felt an extraordinarily strong pain come over my body, my vision was gone and I began gasping for air. I threw my hands behind my head and stumbled to the line where girls were finished, and I pretended nothing was wrong with me. From that day on these “episodes” were a constant companion. I had to make room for them in my life when I walked up stairs, in dance class… everywhere. I hated them, but I learned to work around them. My friends, however, not so much.

Moving into high school the episodes grew just like my body. They were not only everywhere, but they were all the time. Stairs? Impossible. PE class? Hell no. How was I supposed to function like a normal high school kid if I couldn't even walk around like one? Sports, walking to class, climbing bleachers for football games and just keeping up with friends in the hallway…these were all hard work. My physical body began to wear down, and my mental state began to fade as well. Friends and people in general were horrific. I was an outcast, a girl who faked breathing problems, a girl who was gaining weight, a girl who wasn't cool and eventually a girl who had no friends. People had fallen victim to this invisible disease not believing a word or a thing I did. It was easier to distance myself from normal life and exist in my own private world than to deal with the cruel people who broke my world every day. I was a loser at this normal life thing and extremely broken, inside and out. Graduation Day was like being let out of a damn cage, and it felt so good! I turned 18 a month later, and then quickly after I had my first appointment with a cardiologist. The minute Dr. Ray looked me in the eyes and said, “Something is very wrong with you!” I smiled the biggest I had in years. He turned me toward a mirror and exposed me for exactly what I was, showing me the invisible monster growing on the inside of my body. It wasn't always the easiest thing to accept, wake up to and deal with on a day to day basis, but after a while this monster went from a disease to a PHenomenal diagnosis.

Overall, who would I be without Pulmonary Hypertension? I would still be a loser, so called liar, pudgy, overdramatic, very alone and depressed outcast that I was. I would still be this “different” person that people use to make fun of, push away and call names. I would still be a non-normal person trying to live a very normal life. I never fit into that, and I wasn't supposed to, so thank you to all of those high school jerks that told me that! Turns out you were right! Pulmonary Hypertension showed me how strong, capable and simply PHenomenal I always have been and always will be.

-haley.


Haley Ann is a blog not centered on a disease, but a lifestyle change with having a disease. Covering issues from doctors, treatments, mental struggles, tattoos and even fashion. This blog is not to remind you of your flaw but how to live PHenomenally with your diagnosis.

Monday, July 22, 2013

Celebrate Your Friends the Right Way This National Girlfriends Day

August 1st is National Girlfriends Day!  National Girlfriends Day is the celebration of friendships between women. It is a time to recognize all of the girlfriends that you have in your life. Positive relationships with friends and family are especially important to young adults living with pulmonary hypertension (PH). Good friends are there to help when you need it most; whether it is to help you run errands, raise awareness, be there for support or talk to you when you are feeling down.

National Girlfriends Day is a special day for women all around the country. It is a great time to reflect on your friendships and how much they mean to you. In honor National Girlfriends Day, let’s learn more about the importance of friendship and what having good girlfriends can do for you.

What are you celebrating?
Through celebrating your girlfriends this National Girlfriends Day, you are recognizing your appreciation for the women in your life and celebrating the benefits of these relationships. Having good girlfriends can benefit you in ways you may not even know about. The benefits of having good friends include:

  • Helping you live a healthier lifestyle - Friends can encourage each other to be active, eat healthier and overall live a healthier life style.
  • Increased happiness – Having good girlfriends can make you happier.
  • Better coping skills – Friends can help you cope with difficult situations.
  • Other possible health benefits
Learn more about the importance of good friendships online through the Mayo Clinic.

PH and Girlfriends
Colleen Brunetti expresses the importance of her girlfriends and some of the things they have done for her since being diagnosed with PH. Colleen says that her friends are always there to support her. From her best friend to people she knows from around the community, she has found that she can depend on her girlfriends when she needs it most.

According to Colleen,  “My girlfriends get me through - whether helping me to cope as a mom with a major illness, supporting fundraising efforts, listening to my fears, or cheering me on, I know I can count on them for a supportive shoulder, a listening ear, and sometimes a much needed laugh.

My best friend Rachel is the one I turn to when I not only need to talk, but when I need a kick. I told her right at diagnosis, "There will be plenty of people to hold my hand and let me cry about this. YOUR job is to tell me to buck up and move on if I get too self-indulgent and mopey."

My friend Jen and I knew each other from the dance studio where I work out but hadn't done much more than say hello in passing. When I held my Zumbathon fundraiser last year she TOTALLY stepped up to the plate and helped create these amazing t-shirts that were a huge hit. I now count her amongst my dearest friends.”


How to Celebrate Friendship This August
If you have girlfriends that mean a lot to you, make sure to honor them on this year’s National Girlfriends Day.  Here are a few ideas of what you can do this August 1st to celebrate your girlfriends:
  • Recognize your girlfriends through social media by posting pictures of you together, writing on their Facebook wall or giving your friend a shout out through a tweet on Twitter.
  • Send your girlfriends a small gift, like a friendship bracelet.
  • Write your friend a letter (or send an e-card).
  • Have a girls day doing your favorite thing.
  • Be a good friend all year long, not just today!
For more ideas, check out this list of 20 Healthy Ways to Celebrate your girlfriends this National Girlfriends Day! To learn more about girlfriends and friendship in general, check out Girlfriendology. This website focuses on helping women build and maintain positive relationships with each other.  It also encourages women to celebrate their friendships and voice their appreciation for the women in their lives year round.  This website provides lots of good information and tips that will help you continue to have successful relationships with your girlfriends. Enjoy celebrating your girlfriends and all the benefits of friendship on this year’s National Girlfriends Day!


By Laura Johns, Patient & Caregiver Services Intern 

Tuesday, July 9, 2013

"I Breathe; Therefore, I live." A Life Lesson From My Grandmother

By Kevin Paskawych


I know we all have heroes. We look up to athletes, celebrities, politicians; the list goes on. Patients are no different, though our heroes include spouses, children, parents, doctors, and even other patients often make the list. I have to say that my biggest “PH Hero” is someone who taught me how to deal with a “new normal” and life in general, years before I ever knew I would need the lessons. Charlotte Mayhood lived her life completely, raising five children, and centering herself in the lives of her grandchildren. She was a published poet, a cornerstone of her community, and above all taught her grandchildren to use our imaginations. My Grandmother taught me so much, but perhaps her biggest gift to me I didn’t realize until just this last year. Sadly, it was 6 years too late to thank her for the lesson, so I figure the best way I can thank her is to pass on these teachings... are you ready for it? “I’m still breathing, so I guess I can’t complain.”

It seems like an odd lesson, if you can call it one at all, and it has been my standard response to greetings for years. I picked it up from my Grandmother Charlotte, who used it as her standard response, although that is precisely why I find it special. My grandmother was diagnosed with severe Rheumatoid arthritis at an early age, doctors predicted she would be crippled by 40... and they were, more or less, right. When her first grandchildren started arriving she was beginning to stiffen, and by the time her last grandchildren were born the bones and joints in her hands and feet were fused, as she had had several surgeries to replace her ailing joints. Despite her limitations she would still play as well as she could with all 12 of her grandchildren, write her poetry (with a pen for the longest time until finally she began using a typewriter.. using her middle finger on each hand to type) and try to make herself as involved in our lives as she could. Through all of it, and the 24 years that I knew her, she never complained. If you ever asked her if she needed something, or if you simply wanted to ask her how her day was, the response was almost always “I can’t complain, I’m still breathing.” 

My Grandmother wasn’t that stubborn, don’t get me wrong. If she really needed help with something, she would ask... it just wasn’t incredibly often. After my Grandfather passed away, our family openly worried about how to take care of her, and she answered our concerns with remodeling her house with chair lifts and special furniture that made her life easier. She spent the next twelve years living mostly on her own, still insisting that most family Thanksgivings be held at her big blue house, even though it meant more work for her overall. Ok... she was a little stubborn... but her light heart made up for it. Even though she could barely walk, she loved being outside. Despite not being able to use her hands, she loved to write; and although she was in nearly constant pain for much of her life, she loved living. It’s why I admire her so much even to this day, and when a friend asked me several months ago how I was dealing with PH and my “new life” so well, I knew how to answer him. My Grandmother taught me how.

The Author with his Grandmother Charlotte, circa 1986.
 I realized that as long as I was still breathing, things could be worse, and that I needed to stop fretting over what was wrong with me, and start enjoying the world around me. It’s not easy, as I am sure all of you know, and I still have my bad days, but every time I hear myself say “I’m still breathing” I have to smile a little, and realize that in fact, I am still breathing, which means I am still here. My Grandmother was the first person who taught me to use my mind, and it lead me to study the philosophical concepts of Descarte and his “I think, therefore I am” idea. I guess now I should say “I breathe, therefore I live.” It is something I think that everyone, no matter who you are or what you do, needs to contemplate; but for us, for patients, this is something that can really help us on our down days, and make the good days even more enjoyable. We all have things we can complain about, and we do. But they are trivial when you look at the big picture. I like looking at that big picture, and even though I can’t make a friend’s wedding because of a doctor’s appointment, or my Adcirca gave me a wicked headache today; I was still here to have the headache, to see the doctor and find out how I’m doing. I am still here, I am still breathing. I can’t complain about that.

I know it’s not an easy lesson, and some patients may think that it is just hot air, but I am telling you, it works. Take a few minutes every day, and just breathe. It doesn’t matter if you are having an up day or a down day. Just breathe. Contemplate your day, think about the world around you, and when someone asks you how you are doing, I dare you to try it. Answer them with “I can’t complain. I’m still breathing.”, and see how you feel. Try it once.... I triple-dog dare you.... and remember that “I breath, therefore I live.”.... and when you crack that little smile, and the next breath you take smells a little sweeter... say a Thank You to Charlotte Mayhood somewhere in your mind, I always do.