Monday, July 21, 2008
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.
Thursday, July 17, 2008
The title may sound a little strange but if you knew me you would know that doesn't happen too often. I may go to see my doctor once every 3 or 4 months -- and that's if I'm lucky -- or I will do what I call my toilet paper run once a month -- ya know, when you run out of toilet paper you run, well for me it's a trip in the car, to Wal-Mart; my monthly support group meeting -- that's it, that's as often as I get out. Well, this wasn't a doctor's visit, it wasn't the toilet paper run, it wasn't for a support group meeting. It was too meet a friend and have lunch.
Me go out -- wow -- whoo hoo. An out of this house experience.... *;*
Norma and I have been friends for longer than I can remember -- I have PH you know -- she moved away about 20 years ago and is now living in FL. Last year she came back for a visit and it was the first time in 15 years that the 3 of us got together. Another friend who also lives in FL isn't up here just yet. So Norma toasted for the 3 of us.
They say you are lucky if you have one very good friend -- well, I am blessed with many now but these two are those special ones. The ones you cry with, laugh with and almost get into trouble with. *;* The ones who hold those secrets that no one else knows. Your best buddies, your pals and just life long friends no matter how far the distance is between you.
From now on each year we will try to get together for lunch -- this year it will be staggered. And I guess this means I might get to go out again!!! Whoo hoo.
I'm a happy camper..... *;*
Thursday, July 10, 2008
Just had to let you know. Well, a little background first. Every Sunday morning early, Tom goes golfing with a bunch of guys for a Sunday morning scramble. This morning (July 6, 2008) he got a HOLE IN ONE. He's so excited, some of the guys who have camera's on their cell phones took pictures of him picking up that golf ball from the hole and I hope to get the picture of him doing that.... By the time he finished the round, or whatever you call it, everyone knew what he had done. The owner of the course said no one has done this in 7 years....
A couple of years ago the grandkids bought him a hat that says "My Grandpa got a Hole in One" -- he has never worn it -- it's a golfers thing -- but next Sunday it will be his crown. He also has a T shirt that says "I'm the Man" and he plans on wearing that.... *;* He's too funny -- he's a keeper; maybe not here, but he's a keeper.
Well, I just had to share the good news. Hope you all enjoyed your 4th of July weekend -- ours was a hit. ;o)