National Poetry Month!

April is National Poetry Month! Poetry is a great way to express every emotion a person is feeling or has dealt with for any type of situation. Whether it be a poem about falling in love, describing nature's beauty, or how hard it is to deal with the death of a loved one, poetry can be a therapeutic and creative way of expressing oneself.

In this blog are a few poems by some phriends who were willing to share their words about living with pulmonary hypertension. I can certainly relate to their creative expression. Can you?

The Dastardly Disease ~ by Merle R. November 2010

I used to be healthy; I used to be strong,
I used to work most all the day long.
And then it hit me without even a clue
I wasn't quite sure just what I could do.
I saw many doctors and then all those tests
I was diagnosed with IPAH and you know the rest.

Pulmonary Hypertension the dastardly disease
It’s rare with no cure and progression will be
It affects the right side of heart – the lungs big time too
Those arteries get constricted and give out on you.
It’s so complicated; makes it so hard to breathe
With having this dastardly pulmonary hypertension disease.

Shortness of breath are symptoms at first
And sometimes it feels like your heart just may burst.
That weight in your chest, fast heart beats oh my
And walking too fast may just make you cry.

Some may get dizzy, or maybe pass out
Some are so tired - what’s that all about?
Some cannot work and don’t understand why
With little exertion they falter not fly.

Some have edema, that swelling so bad
Retaining that fluid just makes one so sad
Some may have chest pain and may have blue lips
This disease is too serious and needs to be nipped.

Some may have Scleroderma, Sleep Apnea or HIV
Lupus, Raynaud’s Phenomenon or maybe COPD.
There can be some causes or no cause at all
That’s when our ph doctors need to make the right call.

We cut back on salt, smaller portions for meals,
Nutrition’s important and helps us to deal,
We deal with life changes a whole new life style
Remember it’s doable – we'll be here awhile.

Many will ask when not feeling too well
How do I cope, how do I dwell?
Do not despair and let me just say
There are treatments out now – with more on the way
With hope and with faith we have a good chance,
To fight this disease and maybe then dance.

Too many doctors; some specialist too
Do not understand what this ph disease can do
Luckily though and I praise God on high
There are ph doctors and nurses who do know the why
They treat us with wisdom and caring that shows
I thank them so much and I just hope they know.

They schedule those testings they start off real slow
An echo and blood work and others you know
A six minute walk, many PFT’s, oh gee
We scurry, we’re dazzled, we come then they see.

You may have a CAT scan, a bron-chos-co-py too
And there could be several others they may ask of you.
And then the right heart cath the gold standard of all
This proves the diagnosis is proper – they made the right call.

Some take an oral an inhaled or such
Some with IV’s and more, oh, oh so much.
Revatio, Adcirca, Letaris, Tracleer,
Ventavis, Tyvaso are a few that are here.
Then Veletri, Remodulin or Flolan may do
And some of these meds are almost brand new.

A hose in the nose; a tube in the chest
We struggle; we strive and hope for the best.
It is very doable this dastardly disease
With research abounding, there’s hope – so let’s breathe

Those researchers out there, those researching now
How can we help you, with what and the how
We’re counting on you to brighten our life
You give us more hope to end all this strife.
We’ll give you some blood or whatever you need
And hope for a cure of this dastardly disease.

The cost of these meds is abhorrently high,
We suffer, we struggle, oh my how we sigh.
Some insurance companies won’t give us a dime
The government too in their wisdom declines
Then say they will help – but they have special rules
Most are careless and thoughtless and actually cruel.

There are specialty pharmacies and pharma reps too
With guided persistence they know what to do,
They tell all those doctors those specialists out there
About the ph meds; how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, what and how.
They treat us so special it’s learning one on one
They do have support for us, their work’s never done.

There’s a ph community it spreads far and wide
We meet in some chat rooms and support groups with pride.
I've made many phriends and I value them well
Unfortunately though, and I do have to tell
I've lost ooh too many, that hurts thru and thru
This dastardly disease can do that to you.

With our phamily support system we’re able to cope
We share with each other, there is always hope.
Hope for a future, hope for a life
Hope we’ll endure without too much strife

Although it’s not cancer the symptoms may be
As bad, sometimes worse than that horrid disease.
PH is progressive and can cause us much pain
We must not let fear grip us, there’s still much to gain
As mentioned before and remember this now
Pulmonary Hypertension is doable – we’ll be here a while.

Let’s take a deep breath; so slow if you please
It can strengthen those lungs with this dastardly disease
In through your nose and out through your lips
Slow is the key – please remember that tip.

And last but not least, remember to smile
As smiles are contagious you see
And when you feel down; and bring on a frown
Turn that frown upside down just for me
Smiles make us happy and will help us cope
With having this dastardly pulmonary hypertension disease. :o)

PH Poem ~ by Catalina L. 2006

~To all of us who are dealing with this terrible disease, may there soon be a cure~

You came into  our lives when we least expected it.

Because of you we are weak.

Sometimes unable to speak.

You are such a threat. 

Our hearts throb and we even sigh.

But it doesn't mean we love you!

We are just trying to catch up with our breath.

We think of  you night and day.

We wish you would go away.

We're stuck with you no matter what.

If you only knew the pain you have brought

You're not innocent or pure.

And right now there is no cure.

But we will not give up hope you see.

One day a cure there will be.

Just as easy as you came into our lives.

You will always come

But will not stay.

And we all hope and pray for that day!

"Breathe" ~ by Laura G., September 2013

Pumped full of life and this is true

The only breaths I have are few

The medicine runs through my viens

The best days I have are when it rains

If it's too cold outside my lungs are tight

If it's hot they just dont feel right 

It's so scary when you lose your breath

I just wonder how many these lungs have left

I'm few of the lucky ones who can walk around

Without an airtank dragging them down

I'm still really lucky if I haven't already mentioned

But it really sucks to have pulmonary hypertension

Double Jeopardy -Rare disease x2

In 1973, at age sixteen, while living in Jamaica, WI, I noticed strange things happening to my body. My athletic, lithe self was slowly becoming tight, stiff and painful and I was tired all the time. This phenomenon could not be seen by anyone, but I definitely felt it. Over the next few months, my lack of speed was obvious in my track and field competitions and in my basketball practices. The pain and fatigue became overwhelming and as a result I had to drop out of high school my senior year.

A diagnosis of scleroderma (rare disease #1) was made about a year after my initial symptoms and the doctor told my parents I had two years to live. This time frame was kept secret from me for about 10 years. I spent 4 months in the hospital and my dramatic physical decline coupled with what I now realize was a deep depression kept me in a downward spiral to the point where I essentially became an invalid. During a period of about 8-10 years after my initial diagnosis, for no apparent reason, I began feeling better. The darkness cleared and I slowly began to regain my independence. With family support and by the grace of God, I was able to finish high school (at 26), get my driver’s license (a big deal at the time), graduate from college (at 34) get my master’s degree (at 35), travel extensively over Europe and the Caribbean, purchase my own house, mentor numerous children, and work in a career as an accountant for 25 years before being hit by PAH in 2009 (rare disease #2).

My house is right around the corner from the bus stop and one cool March day, as I left my home to run an errand, I heard the familiar diesel engine sound of a bus slowing down. So, like I had so easily done countless times before, I ran to catch the bus. But this time even though I caught the bus, I was completely and almost totally out of breath the point of near fainting. Luckily there were available seats on the bus. After a few minutes the palpitations slowed and I was able to relax. At my next doctor’s appointment I mentioned the incident to my rheumatologist who immediately knew that it could probably be pulmonary arterial hypertension (PAH) and referred me to a PH specialist.

Dr. Roxanna Sulica from Beth Israel Hospital in NYC did a right-heart catherization and determined that I indeed had PAH. Since then my life has taken a different turn. I retired a year after my diagnosis and, after repeated allergic reactions to Letairis and Tracleer, I am now stable on Adcirca, and I get tremendous benefit from pulmonary rehab, support groups and the educational conferences and forums.

To everyone with PAH and/or scleroderma, realize that there are going to be stages to your life and you will have to keep making adjustments to your “normal” every time you experience a setback or a disappointment. However, your life can still be rewarding and full even with 2 rare autoimmune diseases.

Somebody once said, “If you choose to sing, you will always find a song,” and I choose to sing.

MY BIO

I was born and raised in Jamaica, WI.  I moved to the United States in 1983.

I retired in 2010 at 55 years old from a 25-year public service career as an accountant with NYC government.

I now volunteer with an organization called New York Cares and support community service projects close to my heart, especially those that benefit the well-being of the disabled and other disadvantaged groups.

My PAH is secondary to scleroderma. I have experienced practically all the manifestations of both diseases. I do not travel out of the country as extensively as I used to, primarily because of the many adjustments needed for air travel with PAH. There are times I cannot get out of bed, but when I can I make sure I get out of the house. I am determined to keep a song in my heart because it makes me feel better and reinforces my usual positive, hopeful outlook on life.

I live in Brooklyn, New York and I have a host of family members and friends close by for support.

PH and Travel: Fun Travel Destinations

Part 1: Fun Travel Destinations
Travel is always a topic of interest in the pulmonary hypertension (PH) community, as having PH or an associated condition may affect one's travel plans. Summer is one of the most popular times for travel and often brings up a lot of PH and travel-related questions. This two-part PH and Travel blog will feature vacation stories and travel tips from people in the PH community. Part 1 is about travel destinations and vacation stories. Here is a look at what Evette and Carol have been up to this year.

Road Trip Summer 2013
Evette is living with PH and scleroderma. In July, Evette took an eight-day road trip with her husband. She started in her hometown in Tennessee and ended at the Scleroderma Conference in Atlanta. Along the way, she visited state parks and other attractions in Florida, Georgia and South Carolina.

During the trip, Evette climbed to the top of the staircase of the Tybee Lighthouse in Georgia, which has 178 steps. Evette demonstrates that having PH or an associated condition should not stop you from your summer plans. She has climbed the lighthouse staircase on Simon Island, which has 129 steps, as well as the St. Augustine lighthouse in Florida, which has 219 steps!

To reach the top of the stairs, Evette took small breaks along the way. There were landings with windows every few flights where she could take a break and get some fresh air. At the top, she observed that other people climbing the lighthouse were just as out of breath as she was!

Evette stresses that before traveling, you should talk to your doctor about your plans. Before her first lighthouse climb, her doctor approved her plans and recommended that she take oxygen with her while climbing, but Evette made it to the top of the lighthouses without having to use oxygen! Evette is excited about her accomplishment and says, “It feels good to do things that you don’t think you can do!” Way to go Evette!

Disney Vacations: An All-Time Favorite

Carol at Disney with her granddaughter, Lexi. 

Carol Bowling is quite the experienced traveler! She has been to Disneyland and Disney World multiple times. Her favorite Disney Park is Epcot, where she can meet cast members from all over the world and sample food from different countries. France is her favorite country in Epcot because of the French accents and delicious baked goods! 

In the park, Carol uses her scooter to get around. She has found Disney as a company to be very helpful and accommodating of her PH-related needs. “Each park has a First Aid Station. I have left oxygen bottles there so that I didn't have to carry them all day. I have left medicine that needed to be refrigerated. The medical staff will even let you take a nap or simply cool down. They have always been very friendly and helpful to me.” You can go to Disney's website to learn more about their accommodations for guests with disabilities.

Carol with her husband, Michael, visiting Disney World.

“My favorite part of traveling is creating the memories with my family. The moments when we are all laughing, being silly and enjoying each other. It is almost like we don't have a care in the world and we are all living in the moment. We are just focused on experiencing an adventure together and creating a lifetime memory.”

If you want to learn more about travel, make sure to check out Part 2 of the PH and Travel blog on PH Plus with valuable information about flying and cruising.

By Laura Johns, Patient & Caregiver Services Intern 

Tweeting About Scleroderma Is Not Just About Scleroderma

By Karen Vasquez, www.themightyturtle.com

June 3rd, we’re going to get #Scleroderma to trend world wide.  I did not say, “might”, or “we are going to try”.  We will do this.  Scleroderma will trend.  Because as Yoda said, “Do or donot.  There is no try.”

Oh my God, WE’RE ALL GOING TO DIE!!!!

When I was diagnosed with scleroderma in 1994, I was told by doctors I could drink and shop all I wanted, because I was most likely gong to die. For a few years, that’s exactly what I did.
 I figured out that what the doctors said was partially true:  I was going to die.  What I forgot was, someday, we’re all going to die.  I know.  You’re shocked.  Someday, we are all going to die.  We are not going to live forever.  I know you just placed the back of your hand on your forehead, gasped and retreated to the fainting couch.  That’s okay.  I can wait…
Welcome back.  So, scleroderma and Sarcoidosis, along with God knows what else has been progressively killing me, for 20 years, so far.  Surprise!   I’m still here.   And it might not kill me.  I could have a total meltdown and cry that my life is over because my body is slowly hardening like the fiberglass epoxy and lead based paint I worked with while I was in the Navy.  I could have a melt down, wander in the street blinded by my own tears and get hit by a bus.  Living every day like it is your last is stupid.  I hate that song by the way.   I learned from my grandfather, never say goodbye.  It’s always so-long, because we will always meet again.  Here on this plane of existence or another.  Bite me Tim McGraw.   (Seriously, if you ever divorce Faith, give me a call and bite me.  I would totally be your rebound FWB.  Sorry Tim,  I can’t be in a committed relationship with someone who lives like they are dying.)

So I reached out and touched some people, and not on OkCupid.  Well, mostly…
In 2009, I finally started writing and reaching out to others.  Since that time I have become exponentially healthier mentally.  For years, I felt like my diagnoses had taken away my life.  scleroderma and sarcoidosis took away many things, but it did not take away my life.  Yes, I missed many things because of too many things medical to list here.  I have had pain and damage to my body that at times sends me to a quiet place to cry.  So, I learned to feel those feelings, express them, get up and get on with it.  We all have challenges in life and experience pain in many ways.  No condition is less valid than another.  And the past 20 years of my 42 (Yes, I do give my age.  I am proud of every year & every wrinkle.)  I have the greatest gift of all, my son.  It was a huge risk, I almost died, but what I had, could have happened without scleroderma.   A rheumatologist I had at the time was also pregnant.  She told me to watch my blood pressure because of my age.  I had a one in a million chance of complications.  So, of course, I had HELLP syndrome. I should really consider playing the Lottery.  Living a full life does not happen without risks.  We don’t have to have kids to live a full life.  We need to live our life in the now take step out of our comfort zone with some risks.

We have a lot in common, but we are not the same.Through the magic of the interwebs, I met fellow patients with different diagnoses, but shared experiences. No. I don’t think we should all fall under the same umbrella.  We need to maintain our identity to raise awareness about specific diagnoses and new symptoms.

Why June 3rd is not just about scleroderma.
Scleroderma is a classified by a group of specific symptoms occurring at the same time.  

    PulmonaryHypertension
    Esophageal Reflux 
    Interstial Lung Disease 
    Dyspnea
    Vasculitis

You know what?  You and I don’t have time for all of this.  Go to SclerodermaResearch.org, SclerodermaCare.org FESCA.org or SclerodermaCareFoundation.org.  Just google it.

Get to the point already.
Not everyone is on Twitter, but what happens on Twitter, makes the news.  And because all 7 billion of earth’s population is not on Twitter, that makes our goal of getting #scleroderma to trend, a possibility.  On June 3rd, getting #scleroderma to trend will be a reality and we need your help.

June 3rd is Monday.  Don’t people have to work?
Yes, a majority of people will be working.  The odds of one being in front of a computer are high.  Why not use this  noble cause to mask that Monday visit to I canHaz  Cheeseburger?

You can’t Tweet from you computer at work , you say?  You don’t have to break the rules, use your phone!
I know that all of you reading this post right now, would never dream of using work time to play around on Twitter, but I do know you could squeeze it into a break.  So ,when you step away from the hustle and bustle, and tweet from your phone. Download the app to your phone.   Follow the prompts.  Ask a friend.  Call tech support.  It’s FREE to tweet!  Use that alarm app you never use to remind yourself to tweet.

You can set up automated tweets, free!
If you would really like to get into the spirit, download Tweetdeck app to your computer.  Yes, it does work on a Mac.  I use it on mine, and unlike Hootsuite, it’s free.

Short on time or don’t know what to say?  No worries!  Retweet!
You can go to @TurtleMighty, @Short_of_Breath, @pixiecd13, @srfcure, @bouncetoacure, @TreatmentDiaries @sclerodermatt, or any Twitter person in this list: Let’s Set The Trend https://twitter.com/TurtleMighty/set-the-trend/members and Retweet anything with only the tag #scleroderma in it.  Stay away from anything that says miracle cures.  There will be snake oil.  But if snake oil sneaks in, it will only improve our numbers, so don’t sweat it if you accidentally RT some snake oil.  They try to look legit, but they are not fooling anyone.  (Yes, I am talking to you @Trips to Jordan!)

Why ONLY #scleroderma?
The goal of a tweet is to get the most info in the least amount of characters.  We can do that.  Our goal June 3rd is to get #scleroderma to trend. There is no second place, no runners up and no one organization or foundation directly benefits financially from this.  Make no mistake, non-profits have everything to gain by participating. We will ALL be a part of #scleroderma breaking through the confines of Twitter into the mainstream media.   Foundations who do tweet about #scleroderma get the bragging rights to say they participated.  They can get their name out there before World Scleroderma Day, June 29, so people know what scleroderma is, who they are ad what they do.  Non-profits can tell patients, caregivers and the world that they know that we are all in this together, understand that we all stand on the shoulders of giants.  Research of just one disease helps patients with different diagnoses.  One great example:  Beneylysta, the first FDA approved treatment for Lupus, EVER, is now being researched to treat Vasculitis:  a condition where the body's immune system attacks blood vessels. Sound familiar?  Yeah, it’s a condition of patients with scleroderma.  Like I said:  Different names, same team.  You are already on the team.  Play in the giant sandbox that is Twitter with us, June 3rd and set the trend.-
KarenVasquez