Walk Across America Continues...Pacing Parson

Have you heard the story of Don Stevenson aka Pacing Parson.  Don Stevenson, who is 79 years old retired minister and former U.S. Marine, is walking across America to raise awareness and money for Pulmonary Hypertension (PHA).  Stevenson walks 25-30 miles each day, from Auburn, Washington to Silver Spring, Maryland.  He takes Sundays off to rest.

Stevenson was compelled to support PHA after visiting Betty Mayfield, a fellow church member in the hospital before she died of this disease.  This walk honors Betty Mayfield, along with Dorothy Fitch, a close friend who is struggling with PH, and a 14-year-old Cullen Steele, a local (Kent, Wash.) PH patient who recently underwent a heart and lung transplant.

Stevenson's walk is one of PHA's Team O2 breathe events, where communities and individuals raise money for PHA.  PHA is chronicling Stevenson's journey on social media and inviting people to walk with him and capture the experience via photos and short video clips.

Don Stevenson

It's time for Gen Hope to get behind Pacing Parson and help raise funds for PHA.  Go to Generation Hope's Fundraising Page and make a donation.  Generation Hope is trying to reach a goal of $1,000.  A contribution of $5 or more can go a long way.  It's the goal to reach this amount by Mid-September when Stevenson will reach PHA's Maryland headquarters.  Let's join the cause!!!

Learn more about #PacingParsonPHA at The Pacing Parson Walks Across America for PHA

A PH Story Continued

Part 2 by Eye Shaa Malik

A PH Story Part I

My story continues...

I normally visit my doc once in two weeks for regular checkup but my last worst hospitalization was on 6 April 2014. It left a mark on my mind and it brings tears in my eyes when I recall that day. I've got severe heart arrest at 3 am I was at hostel nobody was there to take me to hospital I was extremely breathless with hell pain in my heart. I was brought to heart center at 8 am next morning (that added to the severity of stretch of heart hole's muscles with insufficient O2 supply) by my roomie, I am thankful to God and then to her for saving my life. I was swooned afterwards and undergoing various treatments like O2, nebulization and injections repeatedly...

I don't know what happened then & when I revived my senses I found myself half-dead still ongoing spate of treatments. My family arrived near 4 pm I evoked my will-power and didn't heed to anyone , my doc said you are not in condition to go ,I insisted but I got breathless again and was brought to another hospital the same evening .... It was a severe jerk that I wasn't able to get up for approx. a 'month' but thanks to some good medical attention & I took my rehab seriously, brought myself to the level of fitness... It was spring and undoubtedly in these 12 years this "Crop-cutting" season aggravates my symptoms. During this turmoil I've written a poem "My scattered breath" that justify how my condition fully cox when you can't breathe nothing else matters!

              

            “My Scattered Breath"

        Night prevails to bring some rest...

        Even the birds flew to their nest...

       To sleep soundly is my quest...

       But being valetudinarian I am arrest...

       Spring's brutal to me ever, yet!

       Can't blame the crops that harvest...

       Once again I'll have to pass it like a test...

        Cox having "PH" is not a jest...

         Lots of fears, if it’s last spring lest!

          Dear lord! Waiting for you to manifest...

          The eternal heal that reveal the zest!

 My focus is to keep myself psychologically healthy. My parents have always told me that you are "RARE" not "SPECIAL" so my "expectation level" for care and affection from others is very low .......I cordially thanks my caregivers and try to return something to them (that can be a smile :)). I think when we are ill we can waste too much energy being mad or being glad about how people are caring for us, when we should be really there caring for others, our illness doesn't exempt from reaching out in fact, I think we are more accountable because we can understand journey better than those who have not yet taken it. I feel like now that I have PH I am aware of every my single breath to thank.  Never in my entire life anyone sympathized me because I never painted a sorry picture of mine and I feel that’s my success . Everyone and I mean each and everyone says this " You don't look like a patient " until unless I tell them that there is something wrong inside , my nails and lips give them a ill bit of clue rarely but I often hide it with some lip and nail colors..

                                                 

One thing for newly diagnosed patients with PH or any other chronic disease... Look! You are a higher, plight till last breathe, yes you are bearing up, but who isn't? In one way or other everyone is the part of any struggle. Never ever give up & keep marching forward. Everyone has to go one day, take your medication & rehab-process seriously, smile for your love ones and get out of dismal outlook and prove the world that you are a "WARRIOR”. Once you adopt things turn easy for you, HAVE A COMPLETE FAITH IN GOD. Keep your mind spiritually positive & patiently wait HE is the best healer, you all definitely be rewarded for this pain. He is aware of your struggle and the midnight sky and the silent stars have been witness of your devotion to freedom and of your heroism.

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"

I Am Not My Disease!

By Kiara Tatum

Kiara and niece being silly

I was reading a youth worker journal article, and the topic was identity.  I haven’t seen it yet, but the article was referring to the movie, “Fault in Our Stars.” The movie follows the growing friendship of Hazel, who is diagnosed with cancer, who meets Augustus, also diagnosed with cancer, at a support group meeting.  Augustus asks Hazel, “So what’s your story?”  She proceeds to tell him about when she was diagnose with her cancer.  But he interrupts her and says, “No, not your cancer story, but your real story.” 

That statement made me think about how I defined myself since diagnosed with PH eight years ago.  I was someone before I was sick, and I built friendships, had hobbies, and participated in activities that didn’t revolve around PH.  Sometimes we are so focused on our PH diagnosis and that PH journey that we forget that we are much more than that.  How I identify myself is important when sharing my story with others.  Do I start with I was diagnosed with PH in March 2006 after years of knowing that something was wrong with me.  Or do I start with: My name is Kiara, and I like to be silly and have fun.  I love to watch the ID Channel, sing songs out of nowhere, laugh and smile a lot.  I love the Lord because He loves me and He has brought me through such hard times such as these that I want to show that love to others, so they too will know who the Lord is through my actions which is easier said than done. 

So you see I’m more than just a girl diagnosed with PH at the age of 26 who had to leave her job because she wasn’t able to continue to work.  I’m more than that, and so are you.  You are more than a diagnosis that your doctor gave you, and you are more than this disease that wants to destroy every part of you.  We are PHighters, we are survivors, we are warriors, and we are strong.  And we should not let ourselves be defined by our disease any more. 

I love to listen to music from alternative to country to pop to r&b; I love to laugh and smile; I love to spend time with my family; I’m an aunt, I’m a sister, and I’m a daughter.  I sometimes get mad for no other reason than I woke up that way and will probably stay that way for a few hours; don’t take it personal.  I’m terrified of spiders, and I love to work with youth.  So that’s a little bit about me. So what’s your story? Not your PH story, but your real story?

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!!!

Need A Pick-Me-Up

By Kiara Tatum

I don’t know about you, but I have been having an extra hard time these last few weeks.  And all of sudden last week it hit me that it was my good friend’s birthday.  She died from PH last year in October.  She was my first friend that I had gotten to know, and we became good friends and had more in common than just PH.  We talked about everything and even cried together.  It just been sad to not be able to do that with her anymore.  I have been in a fog for almost an entire year and not really coping well with her death because I tried to cover it up.  So I think I just needed to let the hurt, the anger and sadness out.  I needed a pick-me-up.

But I think as we are ending another year with holidays and celebrations, we are all going to be cycling with feelings of sadness and anger which we are going to need some fast acting pick me ups to get us through these months ahead.  I have been finding that journaling is my go to pick me up, but sometimes even journaling is hard for me to be honest with my words.  So I've been allowing music to do my feeling for me.  Let music—Pop, Country, R&B, Rap, Jazz, Classical, Rock, and any genre—be your voice and just let go!

Music heals the soul.  One of my favorite songs on my playlist that always helps me fight another day against PH and have hope is Roar by Katy Perry.  It came in handy when I was just feeling down about the unknown.

I got the eye of the tiger, the fire

Dancing through the fire

'Cause I am a champion

And you're gonna hear me roar

Louder, louder than a lion

'Cause I am champion

And you're gonna hear me roar

You have to fight this illness with faith, hope, and music.  Because this illness has a way of bringing you to places you don't want to go to, it can be difficult to find your way back. So let the music play on!

PH Goes to College

Part I by Kiara Tatum

It’s August, which means its back to school time for students.  But when you have Pulmonary Hypertension, it can change the flow of the college experience.  Whether you are a commuter or live on campus, having PH and going to college is rough.  I had symptoms of PH while enrolled in college; however, I wasn't diagnosed until two years after graduation.  However, I know how difficult it was for me to get around the college campus and to balance the shortness of breath, fatigue, chest pains, and stress of the college course load as well as a social life with friends.  Here’s some helpful advice that might be helpful to you during your college days.

1. For those living on campus or away from home, find a PH specialist that is near your college campus that you can turn to during a medical emergency.  However, you should be keeping in contact with your PH specialist from home since you will be returning home for doctor appointments and care while not in school.
2. Go to the campus disability office or office of accommodations right away.  By going to the disability office you can find out what services are offered to students with disabilities and what your rights as a disabled student are, especially if you have to be hospitalized and will miss classes as well as need to make up exams, labs, or special assignments.  Make sure that the disability office has a copy of your necessary medical documentation on file.
3. Let your professors know that you have Pulmonary Hypertension.  Explain to them that you may miss classes due to your illness.  However, you will inform them via email or voice mail, so that you can continue to keep up with your studies and assignments.  But you may need extra time to complete assignments if become hospitalized or have bad PH days.  
4. Whether you live on campus or commute, be prepared for a medical emergency.  Keep the emergency documentation on the room refrigerator, keep in backpack, or even put on your cell phone.  And make sure the campus medical office has a copy of your medical records as well as wear a medical alert ID bracelet.
5. Use your academic planner to keep track of not only of all your assignments and due dates, but of your medical appointments, medication reorders, and medical contact information.  This will help you be less stressed when trying to balance the college life with your medical world.
   
6. Get email and cell phone number of at least one person from each of your classes that you contact and obtain a copy of notes and/or class assignments if you have to miss class. This will help you to stay caught up if you have to miss classes due to bad PH days or hospitalization.
7. Stay in contact with your parents or caregiver.  This is especially important for those who will be attending college for away from home.  Those who love you should hear from you each and every day.  It can be a quick text if you’re busy, but they should know how you are feeling in regards to your PH and well being at school.  If you’re not doing well, then be honest and let them know that today wasn't such a good day and explain to them why. 
8. Oxygen can be an asset when walking on a large college campus.  Getting around on the college campus can be difficult, so adding oxygen or using medical equipment like a scooter or motorized wheelchair can help you get around the campus with ease.
9. Take good care of your physical and emotional needs especially if you live on campus and are away from home.  Always make sure that you take your medication as prescribed and use your coping tools to get through stressful times.  It’s great to have a social life, but keeping a good balance will help with the course workload and keep your body and mind less stressed.
10. Know that it’s okay to say that you have to go home or that you have to drop a course.  Sometimes you will miss too much class due to hospitalizations or bad PH days and need to drop courses during the semester.  You may not always be able to keep caught up during that semester, so taking a leave may be necessary.  Just be okay with that decision and know that you can always go back next semester.  Even though you may feel angry and disappointed, stay motivated and positive.  You will get your degree, no matter if it takes you a little longer than someone without PH or a chronic illness.

Stay tune for PH Goes to College Part II.  Hear from the voices of current college students that are diagnosed with Pulmonary Hypertension.

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.

"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.

Depression and PH

Depression is a battle many people with Pulmonary Hypertension and other chronic illnesses have to face from time to time.  Living with chronic medical conditions puts strain on a person not only physically, but emotionally, spiritually, socially, financially, and cognitively. This can be very overwhelming if not addressed.

Find the Source

First, we must step back and as clearly as possible examine what could be causing our depression.  What is the root of our emotional pain?  Medications and their side effects can cause depression.  There are some medicines that cause pain that could be making the depression set in or the medication itself causing emotional imbalances.  I like to not only read the side effects of new medications from the pharmacy, but also look up the medicine online.  My favorite website is www.webmd.com , but keep in mind everything you read online (even a reputable source) may have misleading/scary information.  Also, discuss what you are feeling to your doctor.  He/She may know the source and can help you better cope with the cause of your depression, whether it is medication side effects, pain management or another source.

Reach Out and Talk It Out

When I was depressed I wanted to just stay in bed with my head covered and block the whole world out.  Some days I cry very easily.  At first it was hard to open up about how I was feeling, but after I started to talk about it I started feeling better.  There are different ways and people you can reach out and talk to about your feelings:  close family and friends, PH support groups and mentors, and counselors.  I have my husband to talk to, but my mom lives far from me so I call and email her.  I have also attended support groups and counseling.  Often, I communicate with my mentors about certain issues that may arise or just to talk to a friend.  That constant communication helps me cope and provide clarity about what is stirring on inside my mind.  A couple links to PH mentors are http://www.phassociation.org/Mentors and http://peernetwork.net/.

In Addition…

There are other ways to help with depression or even preventing from getting depressed although it does sneak up on you sometimes:

• Get involved with volunteering, clubs/organizations (like a book club), or use your special talents to help others
• Meditate on positive messages, such as Bible verses, quotes, or proverbs
• Journal-- writing it out is another way I found of releasing my feelings
• Relieve stress by making lists, delegating responsibilities, using planners and alarms
• Talk to your doctor about medication for depression
• Get out, not just seeing the doctor, getting your labs done, or going to work, but to have fun!

Living with PH and other chronic illnesses can be overpowering at times.  I don’t want it to rule my life and I don’t want it to rule yours.  If you have any other ways you cope with depression please share so we may help and uplift each other.

May peace be with you,

Shawna