A PH Story

Part I

By Eye Shaa Malik

Everyone has a story.  Here's mine...

How long you have been with PH? What medication are you on?

It’s been more than a decade, approx. 12 years, I am 21 and I was diagnosed with ''severe'' pulmonary hypertension in June 2003 due to large VSD (ventricular septum defect) with bidirectional shunt after angiography. Prior to that I have had a "small" congenital VSD (a small hole in heart) but when I was 3 it was “filled” naturally, and I was alright without “surgery”. I lived a healthy life until I was 9.

I found myself breathless, exhausted and fatigued even after little exertion. We thought it was asthma and went to many physicians and ENT specialists. Finally a doctor noticed my hands were blue and questioned if I had any heart problems in past. He suggested going back to my cardiologist as he thought there might be something wrong with my heart.

My cardiologist asked for an immediate angiography after which there was a meeting of various cardiologist and my family.  They (doctors) predicted my longevity to be 2.5 years.  The repeated what was written on my reports, '' ITS TOO LATE, NO ELEMENT OF RECOVERY COULD BE FOUND.'' This very line literally reshaped the perception of my entire life.

                            

I went to every possible place where the best doctors were available, but because there were and are no medications approved for children, I have been continually referred.  I have undergone various treatments, trials & experiments. Finally they found a medication regimen that worked, I was put on tracleer (Boonton), sildenafil (penegra), warfarin and lesoride (my current treatment, as well). While they said I would never survive without oxygen, I only use it at night.

My life was forever changed after diagnosis.  Since that day, I have always been treated as "Regina" by my loved ones, nobody ever dared to scold me. My parents and siblings were always gentle with me. I used to tell my friends I had asthma, as  I thought it would make sense to them.  I actually thought PH was another name for ''Heart asthma.'' However, my cardiologist scolded me and said, "If you knew the severity of what you have you would never call it asthma again! I can expect only an illiterate person to compare it to asthma."

What are you able to do that doctors said you couldn't? 

For the first five years, I was completely unaware of the fact that I had PH and that the doctors had thought I wouldn't live longer than 5 years. My doctors asked me to quit my studies after 11th grade.  I was doing pre-medical which they thought was too demanding and stressful. I argued and promised them I would avoid stress and I somehow passed it with A+. I was a good student and never ever thought, "Oh! I'm chronically ill.  I am about to die, why am I studying?"

However, I fell more severely ill and this time as the hole in my heart enlarged, it was decided my pre-med studies were a no-go. It was suggested I choose an easier course of study to have less impact on my health. I used to think about it for the days and nights and cry the whole night because I felt I wanted to do so much, to be so infused with all the energy to put into my work, but I was not able to, and that was really frustrating....

I had nothing else to do and an empty mind is a devils workshop. Pessimism started creeping up on me, and it felt there was no way to cast off melancholy. But, my parents helped me to choose a course of study, honors in English literature & linguistics. There have been many days of exacerbation, but I think to "give up" is accepting your defeat and that being a PHighter or warrior you are not supposed to give up.

They told me to avoid stairs and sports, I was actually supposed to limit my activities that demands more physical exertion... but, I am good at aerobics (an amazing choreographer, or so everyone says). My cardiologist says it’s not good for me, but whenever I listen to my favorite music I cannot help it, I consider it my exciting pulmonary rehab.

I am studying at a place far away far from home and living in hostel.  I have to do everything on my own and that's a big deal for me. I am able to do everything, but I need  "little breaks,” my friends call it "pause time". I think PH doesn't hinder you from living a normal life, we may just need to do it a little more "carefully." 

What is your dating life or marriage like with PH/Oxygen?

I was in 11th grade when I was being told by my doctor that "you are not supposed to get married." It was a great shock for me, I have never  considered myself as a patient, so I argued with my doctor and asked why.  He said "You cannot take care of yourself,  how can you manage a home of your own?”

After 2 years my cardiologist said the same thing but in a condescending way, he remarked "NO ONE ACCEPT AN OPEN HEART WITH OPEN HEART " ... a brutal statement indeed.  It served as an eye-opener for me, I couldn't argue this time because everything was so clear, tears blurred my vision because the initial acceptance of some facts is really a hard pill to swallow but once you make up your mind everything becomes easy.

It still resonates in my mind and hits me hard emotionally, but I am not convinced by this idea. My parents wanted to me to grow-up an independent and brave girl. People will definitely not be calling me a "Spinster." 

I am not saying a PHighter should or shouldn't get married, I am just trying to say this world is so cruel and being patient there is a possibility that you can be rejected or considered as a big "responsibility,” by a potential partner. Nearly all of the PH patients I know do marry, have kids (biological or adopted) and are living their lives happily because they are lucky ones to get their "rainbow" after the hurricane. But not everyone is lucky enough, I am an eternal optimist, I do believe in soul-mate theory.

But my focus and priority is my health so my ''BIG DAY'' would be the day I’ll get perfectly alright, yes that miracle day! I have seen many people posting in PH groups they are so anxious, perplexed & concerned about it (finding a partner), I would say "HAVE A FIRM FAITH" stay "STRONG" , KEEP YOUR SPIRITS HIGH , if luck favors you ! Great! If it doesn't that's not end of life...

One thing that my mother says when pessimism lapses on me "DON'T WORRY WHO KNOWS WHERE THE WIND MAY BLOW FOR MY GIRL."

Hardest part of life with PH?

The hardest part was the "acceptance" that I have a chronically terminal illness and I've a short time to live and being a kid this acceptance-phase prolonged  ... my doctor told me that only "will power '' will keep me alive. I've conceded to PH and every reality related to it with dignity....

Another hard part was when I couldn't study what I wanted to or I grew up dreaming of, because a person with right heart failure was not eligible.

I've had my days when I was really down and losing hope, but this was a greatest "learning-journey”. That pain must have taught me about the life, people & myself. It’s been a massive learning curve, so much about everything .I've experienced good things and bad things myself and that has taught me that the world is not all flowery, everybody doesn't want good for you ,friendship's changing equations, dynamics .I've also started to " grow-up" after fiercely resisting for many years.

Besides PH I have vigorously swollen "tonsils” for approx. 14 years and it hurts, in extreme condition it becomes red  ... My ENT specialist says I have needed surgery for the past 13 years, but due to anesthesia risk, they call me a HIGH RISK PATIENT and no one is ready to take that risk. That's why I am desperately waiting for a “miracle", seemingly all doors are closed for me but I have a blind faith in God that he’ll open all the doors at right time.

So, this was some of my story. In nutshell, I think my disease has helped me focus on what's important and let go of little things. I've made peace with the fact that there is a possibility I’ll die young, but HOPE is everything. Even healthy people aren't promised tomorrow. Respect the fact that you're a PHighter, it demands bravery as each day is fight and adventure,  pain demands to be felt, life isn't about how to survive the storm, but how to dance in rain so be thankful for what you have and you'll end up having more.

I literally count my own blessing and think that if the pain is so damn bigger, reward would be colossal. 

Stay tune for Part II of "A PH Story"

Dealing with changes in your health

Guest Blog Post! By Sara Hunt 

Like sufferers of most chronic illnesses, PH patients have to deal not only with the symptoms and impact of PH itself but also with sudden changes in our health and lifestyles. Booking a holiday a year in advance feels like tempting fate. Life is suddenly so much more unpredictable and fragile than it was pre-diagnosis.

My health has been particularly unpredictable. Changes in my health have happened practically overnight on more than one occasion. Three years ago a lung haemorrhage caused a dramatic increase in my pulmonary pressures and I went from perusing a promising career as a dancer to using a wheelchair for any kind of outing. Then, February this year, I simply woke up with worsening breathlessness that never got better. I'm now on the transplant list.

There's something about breathlessness and fatigue that once you settle into a routine of avoiding the amount of exercise that makes you feel unwell, you don't really notice improvements in your health until you're forced to do something you don't usually do and find to your surprise that you can do it without extreme breathlessness or dizziness. Worsening breathlessness is easier to notice and you suddenly have to make changes to the way you live to deal with them. Of course it's always important to do as much as you can but PH symptoms are so unpleasant it becomes impossible to push beyond a certain point. You have to make changes and this can feel like your disease is controlling your life.

Given the increasing unpredictability of my life I feel I might be able to offer some advice here.

1. Stop comparing your life to the lives of those around you.
Everyone is guilty of doing this. We crave constant reassurance that our lives are good. Imagine a healthy person exactly how they are now, but everyone else in the world is Ussain Bolt. Their health and lifestyle would be exactly the same as it is now, it's only in comparison to all the Ussain Bolts that makes it seem mediocre. It's the old the grass is always greener on the other side. But if you constantly compare your life to others you'll forget to enjoy it. Do what you can, there are always things you can do, no matter how ill you are. 

2. Don't compare your health now to your health in the past.
On a similar note, it's important not to lament the past. Treasure the good memories rather than becoming bitter about them. Make good memories for the future, you'll probably need them!

3. Find ways of making things feel normal.
Although your life is going to be affected by your health, it doesn't have to control it. Making small changes and making an effort to go out and do the things you used to is important. From simply having a evening meal with your friends instead of a late night out to going to see a show instead of performing in one yourself.

4. Learn to adapt. It's easier said than done but humans are designed to adapt to change. It's much more nurture that gets us stuck in our ways rather than nature. We are designed to survive and do it to the best of our ability. It's not easy but it's completely possible and your mind and body is designed to do it well.

5. Help yourself feel in control.
We are all in control of our own lives and having a disease doesn't mean you're not. Making the effort to change the way you do things rather than cutting them out of your life completely is how I maintain some kind of control over my life. There are things you can't change but there are lots of things you can, concentrate on those. 

6. Get out and try something new!
So you can't do some of the things you used to but there are plenty of new things to enjoy. Go to a food festival, check out the local book stores and go to a reading of an author you've never heard of, go to a comedy show, visit the local zoo, do something you'd never have thought of doing before and take a good friend along with you. It's easy to get stuck in a routine but new things and regular outings are brilliant for maintaining your sanity. And spending time with people you love is an extra special bonus.

Hopefully these were useful. You're probably doing all these things already but this post should give you fresh drive to this summer and you can never have too much of that!

Feel free to post any advice you have for dealing with changes in your health or even dealing with a new diagnosis. 

For more blog post by Sara visit her site at http://thegirlwithheartdisease.blogspot.com/2014/03/big-decisions.html

The Unpredictable Road Ahead

By Kiara Tatum

It’s the New Year 2014, and we made it through the obstacles of 2013.  However, it doesn't mean that 2014 is guaranteed to be easier than the previous year.  Life is a journey or perhaps it is more like a cross country road trip with family and/or friends, and you will have great moments and memories along the trip. However, you will also run into bumps on the road. Whether it’s a flat tire, running out of gas, overheating of the car, disagreements along the way, it’s definitely not an easy trip. Having PH makes our journey a little bumpier than others.

2013 was a very difficult year for me. I was grieving a loss of my good friend, who died from PH complications.  I had built up anger, and I was feeling very depressed and hopeless.  Also, my family grew with a brother-in-law and his family as well as a new baby nephew.   I started teaching two classes a semester at the local community college, so I had stress from work.  I started dating which is another posting in itself.  I was even hospitalized at the beginning of the year.  And I was involved in some conflicts that I was getting into throughout the year because of my anger and being on that emotional rollercoaster.

But I learned a few lessons in 2013 that will help me get through 2014.  I would like to share some of those things with you which you may already know or practice now.  

1. Let go of the anger.  I’m so tired of being angry about having PH.  I want a life that is not controlled by PH, a PH free life, but I know that doesn't exist for me at the moment, so I have to learn to live within the bounds of PH.  By giving up PH’s control over my life, I see that I have accomplished more this year than I thought would have been possible.  I've taught two classes each semester, spring 2013 and fall 2013 despite being hospitalized in January 2013 just before my first time teaching two classes a semester. I spent lots quality time with my family; I went to Boston for PHA on the Road; I spent time with friends near; and talked to friends afar.  I think I have spent enough time being angry about PH.
2. Be content in every situation.  I was reading a devotional one day, and it talked about being content in every state. It's a hard lesson to learn, but I'm learning it. Whether I'm spending time with my family or lying in a hospital bed, I will be content.  No matter what the circumstance is, I have to learn to be content.  No more wanting something different, no more anger, and no more hopelessness.
3. Know you’re never alone.  As a patient or even as a caregiver, family or friend of a PH patient, we take on a lot of the burden all by ourselves.  Situations become more difficult for anyone to handle all by yourself.  There was a moment when I was so low that I didn't know what to do, so I prayed and then called a friend.  She talked to me, and then after work she came to my house and stayed with me for a while.  We had dinner out and talked about what I was going through. Through my faith, my family, and friends, I knew I wasn't alone and that I was loved by a lot of people.
4. Have ME time.  I realized that I need on a daily basis at least 15 minutes to just be with myself.  I take that time to get away from others, my cell phone, Facebook, and television.  I take that time to either write in my journal or read a devotional. Make time to be with yourself.  This can be a time for meditation, a hot bath, or whatever you need to do for yourself to relax, renew yourself, and refresh from the day.
5. Be hopeful.  Stop faking being hopeful; just be it. Throughout the year, I was trying so hard to be hopeful, but I couldn't feel it inside.  I was so hopeless about my situation of having PH, not being able to have a child of my own, and feeling lonely.  But as I said before, I'm never really alone. I'm seeing that my family is growing, I have so much love in my life from others who care so deeply about me.  I let the hope of a cure, finding love, and so much more fill me up, so that I can make it through each and every day.  

These may help you get through 2014 when you come across those speed bumps on the road.  I have been able to get through those challenges, troubles, storms, obstacles along my journey to make it through 2013, and I am going to try to make it through 2014 despite PH.  Have a wonderful New Year!!!

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 6^th 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.

www.phenomenalhaley.wordpress.com

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.

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

Calling All GenHope!

The weather is not quite the spring weather that we expected on the Northeast region, but spring is definitely here.  This means that World Pulmonary Hypertension Day is just around the corner on May 5.  I’m calling all young adults to take action this year and participate in this worldwide event.

Pulmonary Hypertension can affect anyone.  It doesn’t care about your age, sex, race, or even your social class.  That’s why we need to show the world what PH really looks like on World PH Day.  PH Association is organizing an online awareness event via Twitter, Facebook, email, blogs, etc.  So all you have to do is share a photo of yourself with the World Pulmonary Hypertension Day logo and a message you want everyone to hear about the impact of PH in your life.   Share information about PH and your own experience with it for the Online Awareness Day Event.

Let’s put a real face to an invisible disease this year!

Another Love Story

By Kiara Tatum

 

February is American Heart Month, and it’s almost Valentine’s Day.  I don’t have a sweetheart for Valentine’s Day, but this year I do have someone in mind that I would like to show my love.  That would be me, myself, and I.  I’m always hoping that each year I will find someone to love me for me despite my illness, but I haven’t found that one yet.  Which doesn’t surprise me because how can I love someone when I can’t even love myself with PH.  So this year, I’m going to love myself. Sounds easy enough; however, with PH, I don’t always love this life.  How can I love myself when I don’t like my circumstances?  How can I love myself when I have to take medication throughout the day?  How can I love myself when I have to drag around supplemental oxygen?  How can I love myself when I have to change my medication pump every 3 days?  How can I love myself when I…?  So sometimes life can be hard and I just don’t want this life and I can’t love the person that is going through this journey.  But this year, I’m making it my goal to learn to love myself more.  Not just on Valentine’s Day, but each and every day.
To help I refer to the love experts… romantic movies.  The formula usually is boy meets girl; boy loses girl; boy gets girl back.  Within this scenario, there is always some conflict why the boy and girl can’t be together.  Sometimes the girl doesn’t even know the boy exists, or the boy is only a best friend to the girl, and the girl dreams of someone else that she is supposed to be in love with.  Well in this PH journey, the boy is actually yourself, and when you were diagnosed with PH you lost yourself, maybe you lost friends, your job, control, and your lifestyle.  PH is the conflict standing in your way to loving yourself.  So we have to find a way to get yourself back and that is the journey of love we are going on with ourselves.  The journey to win yourselves back and fall in love with yourself.  Here are 5 simple ways to love yourself.

1. Get to know yourself.  The best way to do this is to start journaling.  You are more honest with yourself when you know no one else is listening.  Using guided statements, quotes or questions such as what’s on my mind?; what’s missing?; what keeps me fulfilled?; what are my favorite things?; what is my life like now?; what makes me happy, smile, laugh?; who am I now?; list how you a wonderful person, list things you love, have a conversation with your 99 year old self, etc.  You can find more examples of guided journaling statements and questions online, CreateWriteNow or in journaling or books.
2. Spend time with yourself. It’s great to just have alone time.  I like to listen to music and dance, go for a short walk, watch a good movie on Netflix or On Demand, do something creative, or just think.  It’s great to know what makes you smile, laugh, and happy.
3. Create a personal visual board.  This is a collage of images or words from magazines, books, photos, or from any other materials that resonate with you.  Cut those images and words out and paste on a big poster board.  When finished, look at the board and see what it reveals about your personality and preferences.
4. Do something different.  If you are always doing the same thing, you might lose interest in yourself.  So try a unique or a different activity: take a yoga class, try a new hobby, etc.  You will start to reconnect with yourself and discover more strengths.
5. Redefine your life.  You have been diagnosed with a chronic illness, and it caused you to lose your past lifestyle.  You may not be able to work or attend college classes, but that doesn’t mean you’re not productive, not successful, or not valuable.  You have to redefine those words for yourself according to what your life looks like now.  You have to show yourself some compassion and not criticize yourself for your life not looking like it once did since your PH diagnosis.

I met me and knew me, but then I lost that old me when I was diagnosed with Pulmonary Hypertension.  By getting to know me and spending time with me the way I am now, it’s helped me to fall more and more in love with me and build my self-esteem.  That girl I stare at in the mirror is more than just a girl with Pulmonary Hypertension and a congenital heart disease.  Sure she has thin hair from the medication, and dark spots all over her belly from injection sites and tape marks.  Lips are dry and a bluish color, and she has to wear a nasal cannula that connects to oxygen concentrator.  That won’t change.  But she’s more beautiful than ever before because she’s got beauty that can’t be seen but shines from within.  She’s got strength, hope, faith and love.  She’s got strength that can climb the highest mountains.  She’s got hope that soars with the birds, she’s got faith that can conquer any battle on the field, and she’s got a love that dwells deep in her heart for herself and others.  She always has a smile and a positive presence despite the hardships of her life.  That’s who I love and I’m falling in love with me.

So sometimes it’s not about finding another person that you can love and fall in love with.  Falling in love with yourself and loving yourself more can be more empowering to you than you know.  This Valentine’s Day love yourself and spend more time with yourself.  Enjoy American Heart Month and Happy Valentine’s Day!

 

 

 

 

 

A New Year, Let's Reflect!

By Kiara Tatum

It's a new year, and what usually happens at the beginning of the year is that people start to make new year's resolutions.  We feel that it's a time for new beginning, a time to start over, and a chance to make things better.  However, we still have Pulmonary Hypertension, and we still have a not so smooth journey ahead of us.  And a typical problem for everyone, regardless of chronic illness is that after a couple of months,--four months if your a little more dedicated--you stop working on your resolutions.  Going to the gym 3-4 times a week turns into paying for a membership that you never use.  I would tell you to throw away those resolutions; however, I know that they are important to us all and give us guidance over the next year.  What I would suggest is to look at some of these tips that may help you to accomplish those resolutions this year.

1. Reflect on last year.  Look at those resolutions that you developed last year, and give some positive and negative feedback to yourself: what worked well and what didn't work; did you learn or discover anything new about yourself?  Review the one's that you accomplished, and think about why those resolutions were accomplished.  Sometimes it's because they were realistic, clear, concise and rewarding.  Maybe those resolutions challenged and pushed you, but were within your limits to complete.  Then look at the resolutions that you didn't accomplish.  Were they unrealistic and too complex?  Were they too far beyond outside limits?
2. Know your strengths, weaknesses and limits.  I'm good putting together a lesson plan; however, I can't seem to keep my apartment organize.  I can walk two blocks without stopping; however, I can't do an hour Zumba workout. I can design a great calendar/schedule; however, I'm such a procrastinator that the schedule doesn't really help.  I'm sure over the years that you have discovered what your strengths are and what your weaknesses are as will as your limits.  So don't forget about them when creating resolutions.
3. Let go.  Sometimes we hold on to the past and that feeling we have no control over.  It's time to let go of it and move on.  If I'm holding on to the anger of having of PH, then I'm never going to be able to find out how much stronger I have become since my diagnosis.  Whatever has been said to you or done to you in the past; learn to forgive and let go.  Sometimes journaling about it the situation, writing a letter that you won't mail out, talking to person in an empty chair, or even crying it out can help you to release the feeling and finally let go of it.
4. Pick a word for the year.  It's a creative way to do New Year's resolutions, but with just one word.  This chosen word will be your focal point throughout the year, and it will guide you on your not so smooth journey. Read more at Create Write Now.  If my chosen word was Hope, then Hope will guide me throughout the year.  Whenever something seems to hard or challenging; I will remember to have hope and will get through it.

I hope this tips will help you through your New Year's Resolutions.  And remember just because it's a new year, and you have a fresh start; it doesn't mean that it will be an easy and smooth journey.  Throughout every year, we have our ups and downs, so just don't be too hard on yourself.  Learn from it and let go!  If you have tips you would like to share with others, please post in the comments.  Happy New Year!!!

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.