Thursday, December 29, 2011


I have to rant for a bit. If you don't like ranting just skip this entry. I have posted on my FB that I have pulmonary hypertension. Anyone who has any interest in knowing what is going on with me could look it up through google. You quickly learn a few things. #1 It is incurable. #2 There are nine drugs used to treat it. (Some require a central line put in to use as they can only be given intravenously. Most of those also require you have a pump to push the medicine through 24/7) #3 You have good days and bad days. Now, having said those simple things why do people either a. act like you are dying soon or b. act like there is nothing wrong with you or c. act like you will overcome it completely. I am a realist. I don't plan to die in the immediate future. I plan to try drugs, I have started the first one nearly three weeks ago. There are days I feel like I have an incurable disease. There are days I feel okay enough to do some things. I will never feel healthy or energetic as a normal person would. This week one friend (who I believed was having some wine early in the day) called and cried about what a loss she would suffer as I was the greatest friend. To be honest, this annoyed me but didn't upset me in any other way. It annoyed me more when a friend I sent a letter to just ignored it. No phone call but yet another FB message wishing me well, in a generic sense. One of my friends I have made who also has PH (so cute they call each other PHriends) advised me I need some new friends. She said you need support and the people who can't offer you that don't really care about you. I think she was right.

1 comment:


There's no accounting for a friend's behavior. You just have to excuse it, irritating as it may be. I remember when my daughter was born in critical condition many years ago, how insensitive people were. They would ask me, if she died yet? Or how much longer it would be until she did. I was DEVASTATED by their comments. But I learned to just let it roll off my shoulders. You have ENOUGH to deal with, without letting people bring you down Nelle. I hope the support of new PHriends will make the difference in your life. Take care.