Monday, July 21, 2008
I want my old life back
I just watched the PHA 2008 Conference Video. There was a newbie there who said "I want my old life back." Those words hit me like a ton of bricks. It's so very true, unless you grew up with PH, the adjustments you have to make are not fun and usually not too nice. The tears you shed when you do that stinkin thinkin. The woulda, shoulda, coulda life we use to live and the life we live now. I saw small children with the Flolan pack -- that just isn't right, no child should have to endure that. But look at them, look at how they get about. It's just awesome. I have heard that some children out grow Flolan and are able to go onto another less invasive treatment. Woulda, coulda.... I'm on Flolan.
I would like to be able to pick up my grandkids -- well the smallest one anyway -- he sometimes climbs up on my lap but he's getting to be a big boy now so that won't last much longer. Actually, I would like to be able to pick up a gallon of milk, but I can't, it's too heavy ~ I would like to dance, sing, all the things I could do before. I would still like to be able to do them. But I can't, as she can't do what she had been use to doing and she is learning to adjust as we all have. Now coping may be another story, that is not as easy. You know one of those easier said than done situations. With a lump in her throat this newbie said she is learning about this disease. I call it the dastardly disease and I have learned how devastating it is -- she will. And I don't want to imply how bad it is but it is bad and for some worse than for others. With the proper treatment, PH, PAH, IPAH is doable. You can live with it, you can survive. I am reminded of those who have had it all their lives -- they are survivors too; they had to learn to adjust and cope.
I am fortunate that I now have many phriends, those who also have this dastardly disease. Those who have learned how to adjust and how to cope. The caring that goes on in the ph community is unbelievable and awesome at the same time and it seems we are all at different levels of adjusting and coping.
And I loved those "I'm a little SOB" shirts. That kinda says it all.
The closing for the video stated: "Dedicated to the memory of those who have gone before, to the spirit of those who fight back today and to those yet to come." Don't ever forget those words. There is always hope.
Hugs to you all.