Things I Found on PHA's Website
Our Journeys
This week I found hope, inspiration, a wealth of experience and hauntingly familiar stories. I found "Our Journeys.”
These stories are written by members of our PH community who have shared the good and the bad, their journeys with PH, to raise awareness and offer hope and encouragement.
There are many stories. I decided to focus on the ones marked "added December 2008.” Reading these stories was like being in a support group meeting where each person had felt isolated and different, then one by one they heard familiar stories from the others and they realized they were no longer alone.
I cannot say it any better than Brenda did, so I will quote her story. Please visit "Our Journeys" for a little inspiration or even commiseration now and then, one story at a time.
From Brenda:
I just went to a support meeting. The first in my life. I didn't know what to expect but I listened, I didn't say anything, but I heard people saying the same things I was saying, feeling the same symptoms I was feeling and being frustrated as I was and I felt again, for the first time, I might just get help and I have hope. I didn't have to give up. I met Anita, who gave me her number and said call me and "don't get discouraged.” She knew first hand you can get overwhelmingly discouraged. Most people there were empathetic and very knowledgeable about medications and treatments. Everyone there loved Dr. Oudiz.
So anyone newly diagnosed: be concerned but do something, get help with PAH professionals, no other doctor is likely to understand your disease and may give you a prescription for depression. Get into a support group and don't be afraid of clinical trials. It might help us find a cure one day.
Even though it might be difficult figure out a way to donate your time, money and even your body, as I plan to.
Feel passion, instead of fear. And no matter what, even in a small way, we can make a difference and help someone not go through what many of us have already experienced.
Take care, know that help is on the way.
Resource Link: Our Journeys
Back to the Things I Found Index
I welcome suggestions! Please send them to me at pha@PHAssociation.org. If you have a particular interest or need for info on any PH-related topic, please suggest it to me and I'll locate the resources on the site. If I can't locate information for your topic, I'll know what to suggest for additions to the website. If you have found something on the website to be particularly helpful please suggest that as well.
Kathryn Frix
Online Community Liaison
Pulmonary Hypertension Association
