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.
9 comments:
I can tell your post must have been hard to write. I know I've been living with PH all my life, but I do have times where I have the "I wish I could" moments. There are some things that I just never could do, some things I tried to do, but wasn't successful. I can't imagine living a life fairly well, and then not being able to do much of anything. It's no wonder she said in the video "I want my old life back."
You do so much for the PH community, my phriend. I know it's tough on us physically, and alot of times emotionally, but what you do for people who are just sadly discovering the world of PH is nothing short of remarkable. I do believe you are making a difference in people's lives! And I hope that will continue for a long time to come. :)
HUGS,
Colleen :)
Oh Merlie,
That is so true..I am sure this was a tear jerker day...I had one myself this past week, not sure why?? At times like that I get mad at myself and feel so selfish, It could be worse..It hurts to see all those little ones with this awful PH, and yes, they are such fighters!! We can learn so much from them..We all have those thoughts.
You are such a great asset in the PH world and please know we are all in this together and YES, there is Hope:))
Have a wonderful weekend my Phriend...
Hugs,
Jen
This reminds me of a conversation I had with my husband last week...he has never known me to be healthy. I was telling him how active I was and how beautiful I used to be and how I was so much fun to be around all the time...he was like, "At least you are still alive." I know that is true, but I said to him, "I want more than to just exist!" People just do not get it. Our minds are still wanting and desiring all the things we used to want and desire out of life, but our bodies will not let us attain them...it is like being teased constantly...a carrot being waved over us just within reach, but never attainable. It is torture for me somedays...not to sound too dramatic...but it is. I am glad ot be alive, but there are moments when I just hate it.
First of all I think you are absolutely fantastic. You give so much without asking for anything. Some people don't realize the half that you do for the PH Community, if they only knew. Your friendship and loving concern for each and everyone, your tireless efforts within the political arena, the PH Support Groups, theres just too much to list. Your old life may have been great, but in your so-called "new life" you have been given a gift, a gift to give hope, encouragement and loving support to everyone. I myself am so glad to have you in my life, you have been an inspiration to me and everyone else. So do not think of what you should've, would've, could've.....its the things that you have done, are doing, and can do.
Hugs
TW
Merle,
I too have many "I want my old life back days". That video was very moving. Your post is spot on and I am lucky to have you as a phriend. Keep up the good fight - you make a difference in so many lives...ali
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