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Showing posts with label bloggers. Show all posts
Showing posts with label bloggers. Show all posts

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.

Tuesday, May 15, 2012

A PH Patient Fights Back Through Blogging

By Leigh McGowan, PH Patient

Leigh McGowan
In September 2008, I was diagnosed with pulmonary hypertension.  I had just given birth to my first child, and by the summer I was out of breath with very minimal exertion.  Being a new mom, I figured I was just tired and out of shape.  A couple weeks later I couldn't push my son's stroller or walk up a slight incline without being winded.  In August, when I couldn't dance through a song at a friend's wedding, I thought I must have asthma.  But when I couldn't walk up the flight of stairs to our apartment without collapsing at the top, I knew something was really wrong.

I was in a dark, little, cell block of a room at the hospital when the doctors told me I had PH.  Having never heard of it, I said, "OK, but I'm not going to die from it, right?"  And the whole room went quiet.  A doctor I had never met before said, "Well, everybody dies...."  I freaked out.  I was a new mother, an athlete, I'd never smoked or done drugs, so how could I have a lung disease?  Two or three years was what they gave me.  Two to three years?!  My son was 6 months old!

It wasn't until I met my wonderful pulmonologist and my PH specialist that I heard any good news.  The truth of the matter was, they had no idea when I'd be gone.  The problem was, despite the fact that my PH drugs allowed me to feel almost normal most days, two to three years was still in my head.  When September 2011 rolled around, I thought I'd feel like, "Well, they were wrong.  I'm not dead.  I can do anything!"  But it actually felt more like, "Well, that's it, three years.  I could go at anytime."  And that feeling was unacceptable.  I wasn't ready.  How could I leave my child without a mother?

Having been an actress and a writer pre-baby, I decided to write a book of letters to my son.  I wanted to fill it with advice and guidance so, if I did have to leave his life early, he would would still have a version of me to help navigate his way through life.  Then some media savvy friends convinced me to take that book idea and turn it into a blog.  It would still allow me to share my feelings and advice, but on a larger scale.  I had little familiarity with the blogosphere, but I liked the idea of making my writing public.  It made me accountable.  For getting it done.  For doing it right.  And publishing it every week made it real.  I also liked the idea of having something to show for my efforts.  And, if I could create a built in audience for a future book, then all the better.

Since I wasn't currently a blogger, nor did I read blogs, I had no idea where to start.  I took an 'Introduction to Blogging' course online with the New York Times.  It was a three-week course with two live feed tutorials.  It laid down the basics and helped me navigate the world of the web.  I spent hours on WordPress.com -- a common blogging site -- picking the best "look" for my blog, and I wrote.  I wrote as much as I could.  I learned to hone my "voice" and figure out what I wanted to say.  What was my tone?  My message?  My point?  I decided I would post once a week.  Enough that I was accountable for working on a new post but not so much that people got tired of me.  It was helpful to have some posts "banked" because once I launched, I found that some posts were better for some weeks than others.  Being able to pick and choose which came next was better than scrambling to get something up. Some of my earliest stuff never saw the light of day.

The response to www.incaseimgone.com has been unbelievable.  Not only has it given me a purpose beyond my day-to-day existence as a mother, wife and PHer, it's allowed me to connect with so many others with similar emotions, struggles and realizations.  I feel lifted by the process.  I feel proactive in my battle with this disease and that I am doing something tangible for my son.

Please feel free to check out the blog.  If blogging is something that appeals to you, my advice would be to do your research.  Know what it is you want to say and how you want to say it.  Be honest and truthful about who you are and how you feel, and people will respond.  Finally proofread.  Nothing turns off people quicker than typos.

Wednesday, December 7, 2011

What is the Generation Hope blog?

A blog can be many things … a diary, a rant, a means of promotion. It can be the voice that lets you know you are not alone. It can provide a chronicle of experiences that mirror your own. It can inspire...

The Generation Hope blog seeks to bring a voice to young adults facing Pulmonary Hypertension. It addresses those issues most applicable to people in their twenties, thirties and forties such as college, work, children and dating; all accompanied by a chronic illness.

Our blog is written by patients who are going through these experiences or who have gone through them in the past. They come from across the country and around the world! Each offers positive viewpoints on the realities of life with PH.

A blog should also be a conversation between its bloggers and readers and we want to open up a dialogue with the community. Check out some of our past posts:

Finding Your Voice

We Are Hope

Who would I be without illness?

As we prepare for the coming year, we would like to invite you to join our blogging team. Why not write one post (or more) in the coming year! If writing isn’t your thing, is there anything you would like to see addressed on the blog? Any issues or problems that you feel could be tackled? If so, we want to hear from you. Simply email: ChandaC@phassociation.org

As new posts arrive why not share your own experiences on what you’ve read? Doing so will ensure that other patients who read it will gain a well-rounded view on the topic. Use the comment box below to share your thoughts.

With regular new material and an engaged and active readership we can continue to inspire each other to live our lives with enthusiasm and optimism … and that’s what Generation Hope is all about.