Well, I’ve finally decided to create a blog! I was receiving lots of emails and messages from people about their PH and journey with it. Its very inspiring to be a person who wants to be contacted and it made me want to start my own blog on my fight with this disease. I am new at this, so don’t judge.
Pulmonary Hypertension is a rare, incurable lung disease. A lot of people have no idea what this is, unfortunately. If you would like to know more please visit http://www.phassociation.org
This disease is not only a hard diagnosis to deal with physically, but mentally. Many people think that being diagnosed with something is about finding whats wrong, receiving your treatment then going on your way. Wrong. Yes we need to pick up and go on with life but there is much more to a “recovery” than that. You’re now embarking on a journey of accepting yourself physically and the new challenges you must meet with medication changes, surgeries and therapies. You’re also dealing with yourself mentally, and this is highly over looked. Mental is the killer part and takes a lot more work than popping a pill to make that pain go away. For me mentally, my PH is a roller coaster. Some days I’m very positive about my disease and feel good about fighting it, and other days are very negative and disappointing. And I know I’m not the only one that has this issue. I was mad at the world when I was first diagnosed and in fact stopped my treatment with intentions to die, because I thought that death was my fate. I was put in a body that couldn’t function, and was numb emotionally. One day I met my brother for lunch on his work break and saw him with an awareness ribbon pinned to his work vest, as well as a “PHenomenal Hope” bracelet wrapped around his wrist. I realized how much support I had, and how much everyone else wanted me to fight. So I picked my negative self up and started treatment a week later.
The point of this blog is to discuss these issues PH patients deal with, as well as families, friends or just readers in general. I also want this to be a place where I can share tips and things I do to help live a healthy life style as a PH patient. I want you all to feel PHenomenal, just how I’ve been teaching myself to lately, because you are.