OUR JOURNEYS

Patient story

Juliet Balubar

I’m 55 years old and life now was a long journey for me. Discovering my illness, it was PH which stirred me up.

Most people don't understand much about this disability/disease that affects me terribly, and to those who think they know and considering they are seeing me casually, believe it or not, they are actually misinformed.

In the spirit of enlightening those who wish to know my flight and getaway.

Come reach out and join me though. I'm so scared of what is really in store for me now knowing this PH has been awfully knocking me down.

Sometime am so sad and lonely thinking over the days of what will become of me. I'm so upset, but don't get me wrong, just that I am revealing myself to capture my own show to outcast this fear.

I am angry, for each day was strenuous, a hard situation. All I can do now is try to carry and ponder the question: why? PH has taken so much away from me.

Inside I cried out for help. Nothing I can do now to guard myself when sorely annoyed, trying to act simply now that I can no longer do many of the things I enjoyed doing. Even when times have difficulty adapting to changes, completing simple tasks. Now on countless days of my life the only thing I can do is face these unfavorable circumstances and leave the rest to the hands and grace of God.

If I appear angry, please understand it is PH I am angry with, NOT YOU. This doesn't mean I will act and must stay in this extreme situation for all time but no one has the right to mess up. It doesn't mean I can go against the power of God. Please understand me. I am still a human being with plans, ideas and dreams.

I still wanted to stand out and to keep moving on to catch up time and bring everyone my most suitable endeavors that I enjoy. To tell you the truth, it scares me now you might be confused of my notions and intentions for I might not appear to be cordial nor fun to be with you now. But I will just overshadow it all. I can't take off my worries now for I become more anxious that I can't sustain my strength to go on. For I value so much my work, my family who have given me unconditional love, the care of my immediate friends who assured me to become strong and in one way or another helps me to turn up to carry me to become so courageous.

To everyone, all I ask of you is to surround me with your love and care and those recounted lovely thoughts will be in my heart, my appreciations and heartfelt gratitude. The Lord will give me the spirit to do things, change things I can't do and to look into his loving arms to combat the serious dangers of life.

How often did I act like the story I read about, the “Two Squabbling Sparrows”. I failed to realize that in any fight no one ever wins. Both are losers. Really for now I carry many loads of irritations and if I get troubled I might be blown of proportion. Just understand me.

I remembered the story but I don't even know now what the sparrows were fighting over. And in my hasty glance now I promise to be building on my virtue of patience to welcome surrender or to believe it’s worth dying for. In a soft answer slip away my wrath whisper and to shout, “Still far oh Lord! Help me for now, guard me along my way my life.”

Please don't tell me I look good and alright. I am undergoing an invisible pain. I don't need your compassion. You’re not obligated to do so because I know am not cheating you. Please don't presume you know all that I feel. What I need and what I intend to do now is to look healthy and looks are deceiving. Just counting my good times and blessings, looking back to those good times and happy memories will all be remembered. Just asking the Lord for a room of grace....

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NORD

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.