Here Comes the Sun

By Marissa Barnes

As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to

“Always bring your own sunshine.”

 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).

Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!

Kristine and family at Detroit Zoo

Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.

We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day

Generation Hope Goes to Indianapolis

by Kiara Tatum

It's almost time... conference starts on Friday, June 20.  And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time.  I"m a bit nervous about flying again.  My family isn't able to attend with me to conference, so I'll be traveling alone.  So as we all check in to the conference over the next days, don't forget review your conference program book.  There are many sessions centered around young adults that we hope you will attend.  There's also a special meet up for Generation Hope.   Generation Hope After Dark will be held on Friday, June 20, 8:30pm.  I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun!  Brittany Riggins wrote about Generation Hope After 2012 in a previous posting.  This year we're adding a little game which you can win prizes, so you don't want to miss this one.  Join us for an evening of fun!!!

Safe travels to everyone!

Be Like a Kangaroo!

By Kiara Tatum

A few days ago, I was reading my daily devotional, and it was talking about how kangaroos -- due to their shape of bodies and large tails -- cannot walk or bounce backwards.  However, they bounce in forward movements very easily.  And I thought about how I move in my life, and how I can get stuck in certain places.  But the kangaroo can’t go backwards, and they move forward as part of their nature; I want to be like a kangaroo.  I want to always be moving forward.

This sounds easier for a kangaroo to do; since, it’s their animal nature, but it’s a lot harder for people, especially those with a chronic illness like PH to follow this concept.  To add this concept as part of our human nature; it seems almost unnatural.  As a PH patient, I’m always having thoughts about why did I get PH; what if I didn’t gain so much weight, would I have gotten PH; if my pediatrician saw the whole in my heart when I was younger, would I have PH now; if I didn’t decide to go back to work would I be dealing with Social Security complications; and so on and so on.  I don’t want to stay stuck on those things of the past because it's a lonely, dark, sad place to stay.  As I read in the devotional I can’t really live there, and I don’t want my PHriends to live in the past either.  I had to learn and I’m still learning these lessons in life:

1. Leave the past behind you
2. Reach for things ahead of you
3. Think positively 
4. Be hopeful
5. And know you’re never alone

I will be like a kangaroo; always moving forward.  I will learn from my past, but leave it behind me, so that I can live a more fulfilled, joyous life.

PH Goes To College: Part 2

By Becca Atherton

When I was just a few months old, my parents were told that I had only a 13% chance of living to the age of five. High school, Prom, getting my license and graduating high school were experienced my family never thought I’d get to experience – let alone college! But here I am today, twenty-one going to college, majoring in Psychology with a minor in Family/Marriage counseling. While going to college is an amazing experience that so many of us with PH thought we’d never get to have, there are some things about the experience that will be different for us than it would other college students.

The first PH conference I went to, I was just sixteen years old and I sat in on the ‘PH Goes to College’ panel, wanting to get some tips on how to deal with the stress of college and my disease at the same time. The students on that panel had some wonderful advice such as choosing classes later in the day so you’re not waking up super early, get in contact with disability services, e-mail your teachers before you meet them to tell them about yourself and not over-scheduling yourself when it comes to classes and after school activities. The only thing I wished had been different about the panel was their array of colleges. Everyone on that panel chose to go to a four year university – some even lived in dorms!

Seeing all these young adults up there, some going to Berkley and some even going to college out of state – it gave me unrealistic expectations for myself. I felt that if I went to community college that I wouldn’t be doing enough, that I wouldn’t be good enough. If they can go to a four year with PH, why can’t I?

PH and its symptoms are different from person to person. The amount of stress someone’s body can take is going to be different than yours. I had to remind myself that, and tell myself that at least I was going to college because there are some PH patients who can’t even get out of bed. So if you’re sitting there, thinking about going to college but not sure if you can handle the huge campus of a four year, I want you to know that community college is an option and it does not make you any less of a college student if you go.

Some of the best things about community colleges are its smaller campuses; so your classes won’t be too spread apart and the class sizes are smaller so your teacher will actually know you. When you get into a class of 500, the teacher isn’t going to know you or your health, which means, if you miss a day and need notes from that day, they probably won’t even realize you were gone. I was worried about dorm rooms in college. What if my roommates are up too late? Staying up late and not getting enough sleep has a tendency to put me in a tired mess when it comes to my PH.  What if my dorm mates got sick? I shouldn’t be around that. Staying at home was the option I chose and I don’t regret it for a minute. So I don’t get the ‘dorm experience’, I can just have my friends sleep over on the weekends if I want that.

One thing I noticed was how much cheaper it was than a four year. Sadly due to medical issues, I had to withdraw from classes last semester. Imagine paying all this money and then not even being able to finish the course? I lost money last semester, but not nearly as much as I could’ve.

Because my health was still a problem by the time this semester rolled around, I am taking this semester off and it kills me.  College makes me feel normal. I’d get up in the morning, get dressed and go to classes, hang out after school, come home and do homework. It gave me something to do and it made me feel like I was actually doing something with this life that my parents and I have fought so hard for. Sitting at home all day, not only is it boring but it makes me feel like I’m wasting the precious time that I have. I know that its not my fault and I know that it doesn’t make me some lazy person but I hate it when people ask me how classes are going because I have to answer with, “Oh I’m taking a semester off.” And I worry that I sound like one of those college kids who just got lazy or flunked out so they aren’t going to school this semester. If you are in this situation too, we have to remind ourselves that we are doing the best that we can. The standards for us are going to be a little different and there are going to be times when we have take breaks from college. Yes it means getting our degree later, but at least we are working towards it.

College can be a bit crazy and stressful, but it can also be so much fun. I’ve met a lot of great an amazing people through college and I’ve learned so much. I’ve had amazing experiences and gotten involved in a great club after school. (I did not do more than one club at a time due to stress and activity level). Just take it slow, remember that you don’t have to get everything done at once and that you’re on the right track.

Get Ready For Rare Disease Day!

By Kimberly Smith, PHA Intern

February 28^th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).

The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.

There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:

• Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.  
• Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!

How will you celebrate Rare Disease Day this year? Visit www.rarediseaseday.org to find events happening near you! 

Day of Love!

By Kiara Tatum

It’s Valentine’s Day and everyone, whether you are anti-Valentine’s Day or pro Valentine’s Day, will be celebrating somehow.  This can be hard time for those with PH and single because it’s not so easy to feel free to love someone when you are coping with PH.  And those who are in a relationship may not have enough money to afford a gift for their love one.  PH is a rather expensive illness to treat.  So have three tips for the singles and for the couples.

Single Phriends:

1. Go out with your single friends.  Maybe go bowling or catch a movie together.  Celebrate being single with other singles.
2. Stay home with your family.  Sometimes going out on Valentine’s Day is too much because there is red hearts, roses and chocolate everywhere you turn.  So just hang out with family or invite some single friends over to spend time with them.
3. Take a chance and go out on a blind date.  Use those newest dating apps and find someone who’s single and meet up.  You never know, the day of Love can be a great day to find your true match.

Valentine’s on a Budget:

1. Have a picnic dinner indoors.  Make a wonderful dinner for you and your love one.  Spread out that picnic blanket on the floor and sit on the blanket and share a cooked meal together.
2. Write a love poem or love letter to that special someone.  Sharing your thoughts and feelings this special day will make that someone special fall in love all over again with you.
3. Take your love one to McDonald’s.  Seriously, I hear that McDonald’s is setting up Valentine’s Day seating with candlelight dinners.  That’s sure to fit into anyone’s budget this Valentine’s Day.

These are just some of my thoughts to share with the singles and the couples this Valentine’s Day. You can find other ideas all over the Internet. Everyone have a wonderful day full of love from friends and family.

I Can't Believe They Said That!

I Can’t Believe They Said That!!!

From one patient to another, we have all had that moment when we think to ourselves, “I can’t believe they said that!”  Sometimes it is a stranger at the grocery store, a coworker or the naïve family member.  Normally the closer the person is to you the more it hurts and the longer it consumes your thoughts.  It is very difficult for others to understand what life is like living with a serious medical condition.  The purpose of this post is for you to share with those most involved in your life.  My hope is that it will be a gentle guide to help the communication between you and them.  The following guidelines pertain specifically to Pulmonary Arterial Hypertension (PAH).

What NOT to say…

• “You don’t look sick.”  Just because we do not look sick does not mean that we are not feeling poor.  This disease is a microscopic internal struggle between the heart and lungs.  PAH affects millions of tiny blood vessels that branch off from the larger pulmonary artery that is connected to the heart.  Every breath and heartbeat requires more energy for a PAH patient than for a healthy person. 

• “It’s not that bad.”  A patient struggles regularly to perform daily tasks that would otherwise be simple.  This is incredibly frustrating and an emotional battle.  We struggle with acceptance of the limitations that are placed on us by this disease.  We struggle with the social embarrassments of needing to take breaks because of lightheadedness or turning blue when performing a task that requires an increase in oxygen.  It is discouraging to be meet with non-sympathetic statements. 

• “I know how you feel.”  You do not know how we feel so please don’t say so.  Our high blood pressure feels very different than the more common type of high blood pressure.  We experience side effects from medications you have never taken.  Multiple hospital stays, doctor visits and medical tests are physically draining.  The way this disease affects us is individualized and it is impossible for you to know how we feel.

What to say…

•            “I believe that you are sick.”  Instead of telling someone that they don’t look sick, you should believe them.  The way PAH affects the individual fluctuates day to day.  On the worse days it is nicest to know that you’re believable.  Denial of the impact of this disease is only harmful.  Conveying that you believe the patient is sick allows us to feel that you are willing to fight this with us.
•            “I’m sorry this is something you are going through.”  Sympathy: the perception, understanding, and reaction to the distress or need of another human being.  Telling us “It’s not that bad” while meant to be encouraging is actually naive.  This disease is bad, life or death bad.  To be encouraging say, “I’m sorry this is something you are going through.”  It conveys sympathy to our situation.  It is encouraging to know that our pain saddens you. 
•          “Help me understand.”  While you may not know how the patient feels, you are able to be more supportive if you gain understanding of PAH.  Listen to us talk about how diagnosis changed our life.  Learn about the science of the disease.  And one of the best things you can do to understand is attend a patient support group meeting.  A few of my friends went with me in college and I clearly remember how enlightening it was for them and how supported I felt.

This is just the tip of the iceberg of what not to say and what to say to a PAH patient.  Please add your own in the comment section below.  Remember share this article with your family and friends!