Long-Term Survivors Share Words of Hope and Encouragement

As long-term survivors, we have navigated the seas of emotion and change in the wake of a PH diagnosis. We have found our “new normal” and embrace it as best we can. We have made lifelong PHriends and found strength in numbers. Every day that we beat the odds is a day to rejoice, but it is also one more day we are out of breath, juggling medications and trying to make the most of our good days. These challenges never go away. We can’t change the chronic and progressive nature of this disease. What we CAN do is support and lift each other up.

PHA has formed the suPer Heroes group on Facebook for PH patients living long term with PH. We offer these insights, experiences and words of encouragement written by suPer Heroes for suPer Heroes:

Take Back Control

“Ask for help. PH is a shock to the system. I thought I could conquer it by just doing the same things I had been doing. I was embarrassed to ask for help carrying heavy groceries or ask friends to slow down when walking a block. But I suffered because of my embarrassment and felt sick and more tired. I started asking for help, and people helped. I didn’t play the victim. It’s just a fact that I have to slow down to survive longer.” — Priya Balachandran

"Embrace your new normal."
-Ellen Harris

“Don’t let PH control your life. You need to stay positive and keep moving forward. Live everyday with love, happiness and don’t let anyone stop you. It is your life! You control it. You are either going to sit and cry or pick yourself up and decide to make your life count. That’s what matters! Do what makes you happy. Even with oxygen tanks, we live! I find really big, cute purses to carry my Helios tank. I don’t let the oxygen stop me. I call my tank, ‘Prince Charming.’ With a name like that, I can deal with it better!” — Stephanie Layer

Take Care of Yourself.

“Don’t take things for granted. Take the time to enjoy all of the little things in life. I try to spread my energy (an exercise that doesn’t end). When I feel good, spacing out the things I would like to get done helps me to maintain that energy level and not burn out. This takes practice!” — Diane Ramirez

“I have to maintain a healthy life style — eating right, exercising, and staying positive. If I gain five pounds, I start getting S.O.B. It happens to be the greatest motivator I’ve ever had! Medications and doctors can do so much, but we have to take care of ourselves every day to prevent something minor from becoming life-threatening.” — Marilyn Clements

Deal with Fear.

“I’ve had this disease my entire life. I honestly don’t think I’ve really thought about dying with it. I can die at any time, whether it be health-related, accident-related, or who knows what? I don’t plan things according to my health. I plan things according to what I’d like to do. If something happens along the way, well, then it happens. But I didn’t stop my life just because of PH and wondering, ‘What if I won’t be here?’ That is just a question NONE of us can answer.” — Colleen Schnell

Stand Strong with Every Breath.

“PH is not who you are. Take time for yourself. Learn something new; walk where you haven’t walked before. Eat light. Do your best for yourself. Your numbers aren’t everything. They will change; you will change. Even embrace your down days. I once told a friend, the reason I got PH was that God wanted me to, ‘shut up and sit down.’ Life is a journey. Learn to say no gracefully, and give eternal thanks to those who help you. Despite this disease, you have grace and hidden talents within you. Breathe as deeply as you can every day. Be grateful for every little bit of air that makes it to your heart, to your lungs. We are the survivors; we are the lucky ones.” — Dale Rankin-Mack

"Having a positive attitude is huge. We all know down days are inevitable. Every single person in the world has them. The thing is overcoming those bad days and finding positivity on the other side. Know that whatever you want to do, there's always a way to make it happen. It's all about adaptation and perseverance. If someone thinks you can't do something just because you have PH, go out and do it. Don't do it to prove those people wrong, though. Do it for yourself. It will give you the confidence boost you need to keep fighting!"
-Sandye Corcoran

"My Motto: Get up. Dress up. Show up!  Everday. No matter what. No matter how you feel - do something, anything!  Never let PH have you. You need to have PH. You need to own it."
-Mark Arellano

"Every breath I take is a divine gift. I feel related to the Universe."
-Pierre Nachbaur

"You aren't promised tomorrow so live life to the fullest and never leave anything unsaid!!"
-Shelly Paxton Carder

"Never give up, it's ok to cry and don't let PH define who you are."
-Aleksandra Ivanko-Deel

"Remember to thank your caregivers and friends that have stuck it out with us through our journey. It hasn't been easy on them, either."
-Stacey Gausling

You know your body better than anyone. Don’t lose your voice. If you don’t feel well, don’t give up until your concerns are addressed. There will always be people who don’t understand our struggles and the true significance of our victories. Keep in mind that confusion can be cleared up and often stems from fear, while ignorance is a choice and all the awareness in the world won’t change that.

We all have good days and bad days. Do what makes you happy and know that it's ok to cry. Also know it's ok to ask for help - life with PH is an uphill battle both physically and emotionally. Our ability to cope can wear out just as easily as our bodies. Surround yourself with people you love and people who truly love you. Our caregivers, families and friends are along for the ride, through the highs and lows. We need to thank them for absolutely everything. We also need to remember, though PH is attacking our bodies, there is no need to carry this burden alone.

Surround yourself with people you love and people who truly love you.  It's important to recognize that adding a chronic, life-threatening condition to the mix can take its toll on any relationship. Keep the lines of communication open and do your best not to shut anyone out. When that does happen, apologize. Let them know what was really going on at the time. Always tell them you love them. Our caregivers, family and friends are along for the ride, through the highs and lows. They laugh with us and cry with us. They love us as much as we love them. We need to thank them, for absolutely everything.

One of my favorite quotes goes like this, “When you feel like giving up, remember why you held on for so long in the first place” (author unknown).

written by Katie Tobias, PH Patient and Long-Term Survivor

This article first appeared in the Summer 2014 Pathlight.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.