PH Awareness 2015

By Kiara Tatum

I can’t believe another year has passed by, and PH Awareness Month is here once again.  During the month of November, there are many events, fundraisers, support group meetings, advocacy action, and other activities to spread PH awareness.  This is also a great time for young adults diagnosed with PH to spread as much PH awareness as we can during the month.  I know it can be difficult getting involved in attending events or hosting a fundraiser, but I’m going to share some great ways to spread PH awareness using social media.  

One social media event that goes on until November 30 is #Heart2CurePH.  It's simply printing the "Please Co-Sponsor H.R. 3520 sign" and taking a selfie or a usie with friends and family and posting it on your Facebook or Twitter page with the #Heart2CurePH.  Don't forget to post on your Members of Congress pages as well to see if they have the #Heart2CurePH by sponsoring the Pulmonary Hypertension Diagnosis and Research Act.  For more information go to Heart2CurePH Photo Campaign on Facebook.  

#Heart2CurePH Campaign is part of the 2015 National PH Advocacy Day on Thursday, November 19.  There are three ways to get involved including the #Heart2CurePH, giving your Members of Congress a call, and visiting your local legislature office.  Find out more information of Periwinkle For A Cure: National Advocacy Day here.  We are coloring the world periwinkle this month.  So change your profile pics and cover pages on Facebook to PH Awareness themes.  Can find them on the Pulmonary Hypertension Association Facebook page.

Now ladies, and the fellas too, this one is a good one.  Get out your periwinkle color nail polish and paint your nails.  It's time for the #ManiUpForACure Campaign.  Take a pic of your nails and post on social media with the #ManiUpForACure.  No periwinkle nail polish, no problem.  When you donate $20 or more to PHAware, you will be sent a bottle of nail polish, so that you can participate in this campaign.

Now another idea which is just so inspiring and amazing, I can't wait to do create mine, is record a note card story.  It'll allow you to share your PH journey to others on social media.  You can post on YouTube Channel and/or your Facebook Page.  It's a great way to share your story and spread PH awareness. Check out Shannon O'donnell's PH story.

These are just a few ways you can get involved in spreading PH Awareness to family, friends, and your community.  Do one, two or try them all.  For more details and other ideas you can always visit PH Association Awareness page. Do something this month to spread PH Awareness!

Living With A Rare Disease

By Kiara Tatum

Another year has come, and Rare Disease Day is on Saturday, February 28.  And the facts still remain that there are 30,000 PHighters living with PH in the United States, and I'm one of those PHighters. I know that there are others all around that are living with PH and other rare diseases, and we need to spread the word about PH.  There are many ways to get involved and share your story.

"Rare Disease Day was first observed in Europe in 2008.  It was established by the European Rare Disease Organization (EURODIS).  In 2009, EURODIS asked NORD (National Organization of Rare Diseases to be its partner in this initiative and to sponsor Rare Disease Day in the United States.... In 2014, more than 80 countries participated and, through social media, the awareness, and participation has an even broader reach.  Each year, Rare Disease Day is observed on the last day of February.  The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored." History of Rare Disease Day

Having a rare disease can be a very lonely and scary place where you feel no one understands what you're going through and you don't know what your day will be like.  It doesn't only affect the person with the disease, but it affects their family and friends.  I was diagnosed with PH in March, 2006, and I have been PHighting ever since that day.  But I didn't do it alone.  I have my family there to support me and care for me when I can't care for myself.  I have PHriends that I can call upon for support and understanding.  I have my friends that remind me of who I was before I had PH and that I'm still that girl.  So this Rare Disease Day, I'm going to celebrate, share my story, and bring awareness of PH to the community via social network.

PHA participates in Rare Disease Day.  Will you join us? Find out what you can do to get involved.  Let's share our stories, let's bring PH awareness to all around the world this year for Rare Disease Day. Rare Disease Day 2015 - PH

Generation Hope #StillPHighting

by Generation Hope Advisory Board

November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to AngeliaD@phassociation.org, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:




For more details and a guided script for your selfie-video visit PHAssociation.org/stillphighting

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?

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.

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.

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.

Like Oil and Water - Work and PH

By Kiara Tatum

The academic school year has finally ended at the college, and my return to work after seven years has a summer break.  It felt great to be working, using my master’s degree in social work, teaching diverse students, having discussions on contemporary social problems, and actually getting paid to work.  I didn't know if I could actually do this, but I wanted to try it—failure or success didn't matter.  I didn't let my fears, anxiety, or self-doubt stop me from pursing this new journey in my life.  

Working and having PH can be a difficult especially if you don’t have an idea as how to start, what job you can physically and mentally do, or support on the job.   For those of you thinking about returning to work and those of you who are working, I have a few helpful tips to share with you that I learned from my own experience.

1. Know your rights as a disabled employee.  All employers have policies, and knowing what those rights are helps get through times when you do have to miss work because of your illness.  After my hospitalization at the being of the spring semester, I learned that I had the right to cancel classes, and it was based on how many classes and hours of each class that determined how many classes an adjunct instructor could cancel before it impacted your contract with the college for the semester.  And even before my return to work, I met with a disability advocate that helped me to understand my Social Security Disability Insurance when I start work.  I found that to be most beneficial to me because I didn't want to lose my Medicare insurance because I wanted to try work again.  Disability Law Handbook 2013
2. Don’t do it alone.  Each state has an organization to assist those with disabilities to return to work or assist with maintaining employment.  Find out what your organization is and go to them for help.  They have services from job readiness workshops to job coaches.  I met with an advocate to help me navigate the different systems that were involved if I decided to return to work.  I met with her almost a year before I actually decided to look for employment.  There are people who know these policies and advocate on the behalf of the disabled.  There is so much I have to do to maintain my Medicare medical insurance as well as my Social Security Disability Insurance, but I didn't lose those necessary benefits despite going back to work.  I even received information on transportation options for work since I don’t have a car and can’t rely on my family to chauffeur me to and from work. Social Security Administration and Work Site
3. Don’t hide your illness.  The whole company or in my case school doesn't have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH.  This will help you when you have an emergency at work, have to take a sick/personal day, or need support on the job.  I always feared that I wouldn't be able to find employment because of my oxygen tank travelling with me.  But I felt very comfortable interviewing for the job, and I obtained the job based on my knowledge, skills, and experience.  I couldn't hide my illness, but I didn't feel the need to hide it.  Slowly I shared my illness with a few colleagues once I felt comfortable, and some colleagues were curious and did ask.  I shared the PH diagnosis with my students on day one. I wanted them to be comfortable in the class and not staring at me during a lesson.  It especially helps when I’m having a not so good day or have to cancel or miss class.  
4. Give yourself a break.  Whether it’s a summer break, a week’s vacation, or a personal day, take that time.  I may not have a full-time job, but teaching is full-time work.  I have to create class lessons with attention grabbing activities, create and grade assignments, exams, and projects and be supportive to the students.  It’s a lot of work, so the summer break will be a great way to rejuvenate myself and spend leisure time with my family and friends.  You need to have “you time” every once in a while.  
5. Do it your way.  Sometimes how others do the job may not be the way that you can do the job, so do what works best for you.  Because I have a chance to be creative when teaching, I don’t lecture the entire time.  I have break-out sessions for students to participate in small group discussions.  This allows me a chance to breathe and relax if I need it.  Also a chance to blow my nose and drink some water—I use oxygen supplement, so my nasal passages aren't the best and I’m always dry and thirsty.  Sometimes employers are able to assist you with the right equipment needed for you to do your job efficiently for you.  Just ask your supervisor, which is also a reason you don’t want to hide your PH diagnosis.  This gives you opportunity to be creative and persevere despite having PH.  
6. BYOL – Bring Your Own Lunch.  I did notice that I was retaining fluid more during my work days because I was eating at the college rather than preparing food at home.  I tended to eat more unhealthy foods such as bacon, egg, and cheese breakfast sandwich and for lunch turkey sandwich with mayo, lettuce and tomato and a side bag of chips.  To a healthy person this would be okay, but for someone on a low sodium diet bacon, cheese, and turkey cold cuts are on the list of foods not to eat.  So by preparing healthier meals at home and bringing them with me, I was able to control my fluid retention easier.  It’s not fun working and being short of breath and lightheaded because you’re eating the wrong foods.  
   
7. Prepare ahead of time.  With PH, you can wake up have a bad PH day.  So by preparing the night before or preparing Plan B and even Plan C or D; you can still work despite not feeling so good.  Lay out your clothes out the night before, utilize a planner for your schedule for the day in advance, and give yourself at least two hours in the morning before you have to leave for work.  You would have plenty of time to shower and dress for work, to eat a healthy breakfast, to prepare a healthy lunch and a couple of healthy snacks, and to relax and not rush in the morning before having to leave for work.  I like to watch the news in the morning before I leave for work, so I leave myself about three hours before work.  And when I get to the college I have an additional two hours to review my lesson plan and make copies.  If I’m having a not so good PH day, I can change my teaching style for the day.  I may have more break-out sessions as opposed to me lecturing for class.  I can also incorporate an activity to go along with the lesson, so I have a lot less work to do.  I also may sit rather than stand during lecture if I'm not feeling so well.  But I allow myself to have options.  Maybe at your job, you can do a day of paperwork from home or something less strenuous on the job that wouldn't require you to lose a day of work if you’re having a bad PH day.  
8. Don’t be so hard on yourself.  I know sometimes you want to push through and be like every employee or even go beyond what’s expected of every employee, but your body won’t always allow you to do it.  And that’s okay.  I know that if I can’t come to the school because I’m in the hospital, there’s nothing I can do.  I also know that it’s okay that I can’t come to the school on a different day from what’s scheduled with the bus company, but I won’t let it keep me from supporting my students any way I can.  If I can’t grade an assignment because I needed to take care of me; then I have to just do that.  I think this was the hardest lesson for me to learn through my work experience, but I’m always ready to relearn this lesson as new challenges comes my way, and I have to let go of my issues because it is my issue.  Everyone else was okay with me having to say no, but I just wasn't okay.  I have students who said I was an inspiration to them; I had students that wanted to know what other classes I would be teaching, so they could register for those classes.  I even had students tell me that I was their favorite teacher this semester.  So sometimes by being different, being more creative, and being honest have a way of benefiting others just not yourself.  

This academic year has been exhausting and stressful but fantastic and exciting.  I can't wait to do it all over again fall semester.  I met so many new people with different personalities, and I had so many different conversations on various topics, and I just socialized with regular people.  Going back to work a rewarding experience for me because I felt like I was productive.  I haven’t felt so good in a long time.  And it is possible to work and have PH!

Spring Into Action!

By Kiara Tatum

With warmer temps here, it finally feels like spring in the air.  Keeping that in mind, it’s time to get outside and spring into action.  It’s not easy for young adults with pulmonary hypertension to do a lot of outdoor activities because of the limitations that our bodies have.  We can’t run or jog 10 miles a day or swim laps.  Here are some tips that might help you get started to getting active this spring.

1. Before you start any exercise or activity program, consult with your pulmonary hypertension specialist.
2. Start slow.  Begin with a short distance and short sessions.  Start walking, riding a bike, or whatever chosen outdoor activity for about 10 minutes per day, at least three times a week, and close to home.  Once you notice that you are able to endure that without becoming too short of breathe for you, then increase your days and distance or time you do that activity.  Then maybe by the end of the summer, you will be able to take a nice long hike or ride on a bike trail.
3. Be prepared.  Make sure that you have bottled water with you or access to clean water, wear sport socks and appropriate sneakers, and lightweight clothing.
4. Don’t be ashamed to rest.  If you are doing an outdoor activity, and you feel yourself becoming short of breathe, dizzy, heart palpitations; then just stop and rest.  It’s nothing that you should be ashamed, embarrassed, or afraid to do.  Your body has limitations, and because of your PH diagnosis can’t always push yourself on.
   
5. Pay attention to the temperature and humidity.  Don’t do an outdoor activity if the temperature and/or humidity is too high.  It’s harder to breathe in the humid weather for those with pulmonary hypertension or other lung illnesses.  
6. Don’t do it alone.  Sometimes what’s great is to have a friend, family member, or even your dog tag along with you.  Just remember that you need to set the pace for the walk, hike, bike ride, or whatever chosen outdoor activity.

Whatever outdoor activity you choose—walking, bike riding, etc., enjoy it and have fun!  It feels so good to be able to be outdoors and enjoy the warm fresh air.

Get Up and Get Moving!

By Kiara Tatum

February is Heart Month, and it’s time to get active.  Having PH slows us down, but don’t let it prevent you from physical activity. There are plenty of ways to move your body throughout the day.  Here are six helpers to get you moving:

1. Complete 30 minutes of physical activity a day.  This 30 minutes can be two or three segments of 10-15 minutes if you can’t do 30 minutes at one session.  Chair Yoga and Pilates are great workouts for people with PH.  But talk to your PH doctor before starting any exercise regimen.
2. Go for a walk.  I know it may be cold out now for some, so wait until the warmer temperatures.  You can take a 30 minute walk around your neighborhood.  If you have a dog, take him/her on the walk with you. If capable, go on a nice nature walk or hike with family and/or friends.  The inclines and not smooth paths are challenging, but are a great workout. 
3. Plan physical outings.  Trips to the mall for window shopping can be great exercise for you, your family and/or friends.  It keeps you walking and talking, and not sitting on the couch watching television.  A couple of weekends ago my friends and I went bowling. It was a great physical workout for me, and I spent quality time with my friends laughing and attempting to bowl.
4. Do housework.  Vacuuming the floor, dusting, sweeping, taking out the garbage, doing your laundry are great physical activities to keep your body moving for a while. Cleaning can be hard work, so go at your own pace.
5. Turn up the music and dance.  If you love listening to music, try music that makes you want to get up and dance.  I love to listen to Taylor Swift’s Red album because it makes me want to move.  I have great fun dancing and singing along to my favorite songs.  Whether you’re good or bad at it, dancing means your body is moving and grooving to the beat.
6. Play.  Play video games with the Kinect or Wii for movement.  Playing jump rope, hop scotch, or just playing uses energy, and you don’t even realize because you are having fun.  Playing with my nephews and nieces always takes lots of energy, and afterwards I’m always ready for a long nap. It also gives me a chance to behave like a kid again and have some fun and laughs with my family.

Remember that doing something each day and keeping yourself moving is better than doing nothing and staying sedentary.  It can help your heart get stronger, especially for those with PH.  Do what you can, do something you enjoy, have fun, but more importantly get moving!

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!

 

 

 

 

 

I Am What I Am Because of PH

By Kiara Tatum

The Latin proverb says, “Sickness shows us what we are.”  Like the proverb, pulmonary hypertension has taught me exactly who and what I am.  My life drastically changed since the onset of PH symptoms 7 years ago.  I graduated from college and started my career, and then my losses began: financial stability, friends, my home, my car, control and independence.  However, my diagnosis of PH has many positive outcomes as well as negative.

I’ve been on this rollercoaster ride of loops and upward and downward slopes.  Before my diagnosis, I thought I knew what and who I was: a licensed social worker, a daughter, a sister, an aunt and a friend.  I exercised regularly with a trainer and ate healthy food.  My plan in life was to open a private practice and focus on psychotherapy for adolescents with emotional and learning disabilities.  After my diagnosis, I had to overcome many challenges and obstacles.  I slept on a futon in my mother’s living room.  We moved to a bigger apartment, but then I shared a bedroom with my little sister and later-on, with my sister and nephew.  My income went from a good salary to less than half that, and then I had no income for months.  But I still had to pay medical bills, an electric bill, car insurance and other bills.  I was depressed, angry and felt like I was nothing.  What I didn’t expect was that this PH journey would be good for me.  

I learned what I am from PH,  I am strong;  I have the strength I need to get up every day and take medication, to deal with the not so good PH days, and to be okay with having PH.  The strength I gained from rebuilding my life, a different life.  No more sleeping on a futon or sharing a bedroom; because I moved to my own apartment and I sleep in my own room.  I receive Social Security Disability Insurance with Medicare and supplemental health insurance.  I also teach as an adjunct instructor at my local community college.  I may not be able to climb Mt. Everest, but I have enough strength to hike to Stone Church in Dover, New York.  This strength I have allows me to overcome any obstacle such as heart failure that PH puts in my path.

Kiara with mom, niece, and nephews

My faith deepened.  I learned to rely more on God for my strength and guidance.  His strength and power gives me strength and provides hope when I’m weak, tired, depressed and angry.  My priorities in life have changed from self-focused to other-focused.  I share my free time in service for others such as volunteering in my community, being a support group leader for PH patients, etc.  I also realized that I have more support than I thought, and I formed stronger bonds with family and friends.  My mom, sisters, nieces and nephews have been there for me through the hospital visits, doctor’s appointments, but also through the fun days of family outings.   My nephews and nieces carry those heavy oxygen tanks for me, attend my PH support group meetings, and we spend quality time together.  Staying in contact with close friends is important to me no matter how far away those friends live; Facebook and texting help.  I created new friendships, “phriendships.”  I met and talk to people with PH from all over the world, through PHA conferences, support group meetings, Facebook and even focus groups.  My “phriends” and I go through similar experiences, so we empathize with one another and don’t have to explain PH. 

A chronic illness changed my life, negatively and positively.  What about you?  What are some positive changes PH has brought to your life? Comment below.

Sometimes Plans Have to Change

By Kiara Tatum

Life doesn’t always go according to the plans, especially when you have PH.  You can plan for a great outing with your friends; maybe see a movie and have a nice lunch with your friends.  But with a chronic illness like PH, you may wake up that morning and feel not so good and have to cancel the planned outing with your friends.  Sometimes your plans just have to change.

I was recently hospitalized for five days, but I had lots of plans made.  I had a doctor’s appointment, meetings to attend, a meet and greet to prepare for at my church, prepare for the upcoming spring 2013 semester, a blog to write for PHA, and had to….  I had plans!  So of course when I started to notice that something was wrong, I ignored it.  I denied that something was wrong.  However, I needed at least one more day to get some things completed because I couldn’t stop just right yet.  But then my body knew it was time to go to the hospital, it was not letting me do anything.  I could barely walk from the living room to the bathroom without hugging the wall and feeling short of breath.  Well then I thought, I’ll go into the emergency room, get stabilize, and be out in and out.  That was doable.  So true because of these plans I had, I had certain things that had to get done before I could call ambulance.  So here I am ready to go to the hospital, and I’m calling around to people to ask if someone could come get the display board to finish it for me.  I figure if I couldn’t finish it; someone else could finish it.  I had everything laid out, so it would be real easy.  Well no one was able to do it for me.  And after an hour, more than an hour, I decided to call the ambulance.

I get to the hospital, and things don’t go according to my plans either.  I get put on fluids since I was dehydrated, and I get all the testing like blood work, chest x-ray, EKG, etc. completed.  The on duty doctor reviewed my results and says I need to be admitted.  Well that didn’t work with my plans.  So now I’m a little frustrated.  Okay so re-strategize.  I’m in the hospital a day or two which gives me plenty of time to be ready to teach for the spring 2013 semester, which is still doable.  After hours of waiting for a bed, I get admitted.  The ICU experience didn’t go according to plan either.  While in the ICU, what could go wrong at that moment did go wrong, so this prompted my PH specialist to have me transferred to his hospital as soon as a CCU bed became available.  So now I’m angry and furious.  I know I need to go, but this just really changed the plan. 

I have PH that drastically changed my life almost seven years ago, and now the one thing that has been keeping me afloat the last few months was going to be taken away from me.  I couldn’t teach if I was in the hospital.  Now my plans have to change again because of PH.  I couldn’t stand for it again.  These plans made were needed to make myself feel like I was productive and that I was like everyone else that worked and earned an income, and it was something that I loved to do.  I was angry, hurt and sad.  I started to panic, and I knew that I had to at least try to hold on to my teaching position.  I contacted the school and was informed that I could have someone cover the classes for me while I was in the hospital and the whole semester if necessary.  I also received a telephone call from a newly appointed dean, and he reassured me that whatever happened I would have a position at the school. 

So what can we do when PH disrupts the plans we have?  We can’t do anything.  Hardest lesson to learn, but it must be learned.  We have to just be okay with the fact that plans change.  If I wasn’t going to be able to teach this semester, then it was just going to have to be that I couldn’t teach this semester.  We must eventually accept and let go of the anger, the frustration, the let down, and accept that sometimes plans have to change.  Having PH means were going to have a lot, more than those without a chronic illness, of changes to our plans.  Those changes to our plans at first may seem to anger you, make you feel sad and hurt, but it will make you stronger and more creative.  It’ll all be okay.

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!!!

What Are You Eating?

By Kiara Tatum

One of the many hardships when dealing with Pulmonary Hypertension is the diet and nutrition.  As young adults, we tend to be on the go and just grab something that's quick and easy.  However, as you are aware, most of us have to restrict our diets to either low carb diets, low sodium diets, and we have to watch our vitamin K intake.  It's uncomfortable to be at out with friends knowing that you can't eat and enjoy majority of the foods listed on the menu.  Since the holidays are upon us and many of us have been eating since Thanksgiving, I would like to share some tips to eating that have helped me to watch my sodium levels during this holiday season.

1. Limit your fast food.  As I have been doing my holiday shopping, I have been out for hours.  I try to eat before I go out and bring a granola bar with me.  This way I'm not eating at fast food restaurants while out and about.  Although if you do have to eat out, look at the nutrition menu for the restaurant.  I find that a hamburger and small fry no salt is high in sodium; however, not as bad as Chinese food or a cold cut sandwich.  If you can eat one slice of pizza, then you can also do that as well.  As a drink for each meal out, get a bottled water.  No extra sodium to worry about counting with water.

2. Don't add salt.  Don't use the salt shaker after a meal has been already cooked.  And if your cooking your own meal just don't add salt.  In fact, I stopped buying salt years ago.  I only use Mrs. Dash to add flavor to my foods, and I don' miss the salt. Also cooking with onions and peppers as well as different fresh herbs adds flavor to your food instead of salt.

3.  Say no to processed foods.  This means no mac and cheese, flavored noodled soups, flavored rice, etc.  And don't put cheese on your burger or your sandwich.  It will save you a lot of sodium. A slice of cheese can be almost 340mg of sodium alone.  There are some snacks you can find that have no or little sodium.  I found potato chips that have 15mg per serving of sodium and with a sandwich and a bottled water, I have very filling and tasty meal.

4.  Do your own cooking.  It's hard to cook especially if you're only cooking for one person, but leftovers are good if probably stored.  Using meat that isn't already seasoned or meat that isn't already cooked is best since most of those meats will have higher levels of sodium.  I've also found ways to make a low sodium pizza meal that isn't too bad.  Cooking my own meals allows me to be creative and learn more about cooking healthy meals that my eyes, taste buds, and stomach will all find savory.

5. Read food labels.  It's very important to read food labels for the amount of sodium that's listed.  This will help you in all areas of nutrition and eating healthier not just with sodium levels.  I found a spaghetti sauce that's 40mg of sodium per serving.  So with whole wheat spaghetti, ground beef and spaghetti sauce, I have a meal that's about 120mg of sodium.

6. Use a smaller plate.  If you are going to a holiday party or dinner at family's home, then ask for a smaller plate.  Especially since you won't be sure what was added to the meal for flavor.  Most plastic plates are smaller than a dinner plate, so if they are plastic plates, then you should be okay.  And don't pile up your plate with lots of food.  If you put food all over the smaller plate, then your eyes will think you have a lot of food.  Either way your stomach will get nutrients and be full.  And don't go back for seconds.  Wait 2-3 hours before eating again, which means no dessert right after you eat dinner.

These are just some of the tips that I have learned over the last years about eating healthier and keeping low sodium levels in mind.  For more information about pulmonary hypertension and diet and nutrition visit PHA website.

Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!