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.

I went out yesterday

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..... *;*

Hole In One

Hi Pholks,

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)

HAPPY FATHER'S DAY

When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much the old man had learned in seven years.
- Mark Twain

Saga of the Ground Hog

Today's the day. Tom got that darn ol' ground hog. It's a critter that's been pestering him for over a year now. A big fat ugly one too boot.
It invaded the back yard over a year ago and Tom did what he could to send it to the neighbors but he really liked his back yard. There is a deck off the family room to the back yard and that's where this awesome but ugly ground hog decided to winter... He dug a hole under the deck and would slip in and out as he pleased. Tom put up some boards to block off the hole but that little critter -- well, really not so little, dug a hole right beside it.
Tom got some cinder blocks, that didn't work. He (Tom *;*) told me how he thought about putting a flare under the deck but he figured with his luck it would start the house on fire... Well, our friends say if we didn't have bad luck we wouldn't have any at all.... enough said on that one. So the flare idea was out. Then he thought about using a shot gun and figured that would just put holes in the deck floor and he still wouldn't get that critter. Didn't want to take that chance either. So as a last resort he got out the 22.... it was kept by the back door, you know, just in case.
Well, that critter had a summer resort toward the front yard on the side of the hill. Wouldn't surprise me one little bit if he didn't have a connecting tunnel. So depending upon the day, the rifle was either at the front door or the deck door.
I would picture in my mind the part about the flare and the house going up in flames and not just little flames but one of the whoosh flames all over the place or him with the shot gun and going pow, pow pow and no more deck to sit on to watch the leaves on the tress as they grow -- I so miss being out there in the country but I do enjoy intown living too so I shouldn't complain. Each week Tom would tell me something new about how he missed that ground hog. (I'm a better shot than he is and he said I should come out and do it LOL) I was the one the guys would ask to site in their rifles before hunting season started -- having two older brothers who were avid hunters might have had something to do with that. Anyway, each week would be a story to tell of the "one that got away".
Tom called just a little bit ago and said he got that critter. It was a bigun -- as the saying goes. So fat it hung over the shovel that he used to remove it from the premises... I told him he should have made possum soup and he said it wasn't a possum and I said well, it's a cousin....
Now we'll just have to see what the latest adventure will be out at the "ranch".... probably just cutting the grass. That has always been an adventure for Tom...
As TW would say "laffin"
Later....

Whew ~ What a weekend

Early Friday morning my daughter called and had that tone in her voice -- you know the one. Mom, have I got a deal for you -- only this time she didn't say that. And that's a saying that gets used often in our family and when used, a BIG smile comes to my face. Anyway, she asked if I could watch the kids after school. I said no problem. Then she said Kevin, her husband, my son-in-law had been in an accident. SAY WHAT!!! I knew he had gone to TN on a business trip and asked if he was o.k., then I asked what had happened. He had a broken bone, I'm thinking maybe his arm or leg something sort or minor and that he was o.k..... he was alive.... hmmmmm I'm thinking. He's alive, I could hear the concern and worry in her voice.
Kevin and his brother were riding their motorcycles (they drove them to TN from PA) and Kevin hit some gravel on a sharp curve, skidded and went down--head first into a guard rail. The guard rail saved his life as the cliff was over a 500' drop. He broke his hip in two places and his ribs were badly bruised. Elizabeth, my daughter was going to fly to TN and help Eric (her brother-in-law) drive Kevin et al, back. The plan was to rent a van to carry Kevin and a trailer to carry the bikes. Of course, I didn't learn all this in that initial conversation but during the day, the call backs and calls from her sister-in-law. I tried calling Kevin on his cell phone but got his answering service. Bummer. Through these many back and forth calls, and I did manage to find which hospital he was in (hunted and searched on the www) I learned they would be leaving Saturday morning to drive back. Whew.
Annette walked over to my house after school, Jerod was staying with a friend and I picked up Nolan around 5ish from day care. During all this rush and fuss, Jerod picked up Nolan's clothes sooo Nolan had Jerod's. Had to drive Annette home where she got the proper outfits for a day or two and some more "items" of interest for herself. Her plans were to go to the church that night for "dinner and popcorn and pizza". A monthly event and she would be staying overnight with a friend after. So that left me and Nolan, the 5 year old. We had a great time. I think I was a 5 year old in my former life ;o) We watched Jurassic Park for probably the 20th time, I made popcorn and he could tell me what the actors were about to say for almost every scene -- he's just too much. A couple of times he had to sit close to Grandma but most of the time he was right on top of the TV screen.
Saturday comes and he helps me with some chores, watches some TV (he's not allowed to watch too much TV at home -- but I find it almost the perfect babysitter...) we colored and his pictures were put on the refrigerator and mine were put on the coffee table WHOA... We called his Mom and Dad who were en route to heading for home and I heard Nolan tell his Dad -- "I have everything under control" and gave him (Kevin) a thumbs up. I just love the way their minds work. Tom came over towards the end of Spy Kids (another favorite) and then we -- Tom and I had to make plans to pick up my brother at the Pittsburgh Airport. Ken (my brother) would be coming for a week long visit. I haven't seen him in almost 5 years as he lives in CA so with all that was going on my mind was in a whirl. More back and forth calling. Do I take Nolan with me to the airport... or should he be brought to the Jerod's friends house. The final decision (without winning any money) was to have Teena (Eric's wife) take him home and just wait until the TN 3 would be home. Tom and I had to leave by 10 p.m. and they, the TN 3 thought they would be back by 10:30 or 11 p.m. Close but no weo. So Teena came and got Nolan about 7:30 so he would be in bed by 8 and have a good nights rest. Sounds like a plan to me.
Tom and I get "things" ready, you know my just in case stuff. Medicine packed and in it's cooler with extra ice. Fill up my portable oxygen tank, take along a spare "just in case". The usual things I need when I walk out the door. I'm just glad we weren't going on a trip -- then imagine all the extras... Anyway, we load up the car and off we go. Stopped for gas "just in case" and hit the highway in style. It's take about an hour and a half to get to the airport from my house and there is always some kind of construction going on on I-79 so it was decided we would leave about 20 minutes early. We're heading down the highway and the moon is full, yet the sky is clear and there were large puffs of clouds here and there, the silhouette of the mountains on either side. It was an awesome site. The dark sky in the background, the man in the moon looking down on us; the bottom side of the clouds being dark... I don't ever remember seeing such a site. As my Mother would have said, "A site for sore eyes"... Something that make you go, whew... A Hallmark moment if you will. Tom and I chit chatted on the way down, something we don't usually do and the time just flew by. We got to the airport, not really too early but there was no construction going on so no hold ups. Now coming back may be a different story as we noticed there was more traffic heading north than south.
The plan was (via phone calls with my brother) that Tom and I would drive around the terminal until my brother came out. His plane was to arrive at 11:55 p.m. such a wonderful hour and we got there at 11:20... Oops, just a little bit of a wait. Now you have to realize that before 911 you could park on the berm of the road and watch the planes take off and land -- not any more, so we drive around and around and around. There is this one "stop" sign so I told Tom if no one is behind us, just 'stop' there until someone does come behind us... that worked only twice. Finally, the car ahead of us stopped so we had to stop, there was the Highway Patrol and local Police everywhere to make sure the traffic kept flowing. I asked this one lady who wasn't waiting with our previous drive by if she was coming in from Denver -- she said YES. Yippee, the plane was in on time. Down the ramp a way I saw this "guy" with a beard.... hmmmm.... so what the hay, I yelled out Ken and he waved back... We only drove around the terminal 5 times, that must be a record... Ken only had a carry on and one suitcase. We put those in the trunk and off we were, headed for home. That's when the fun began, I tell ya, brothers.... my oh my. We got home about 2 ish and we were in bed by 2:30 a.m.
I'll write about the visit but my fingers are getting wore out about now so: TO BE CONTINUED....

Just Not Sure

Well, a little bit ago I received a phone call about doing a brief survey. I usually listen to their spiel to see if I'm interested or not before I hang up. :o) I was asked if I was a registered voter at this address. Ahhh a political one, my cup of tea. I replied, yes I was a registered voter. I'm thinking with all I have been through in the political realm over the past several years, I may be able to put in my two cents worth somewhere in this conversation. He asked if the man of the house was home, I said no -- I didn't lie -- just because he's not allowed to live here... and besides, what does that have to do with the price of peas in China? Then he asked if there was a man who lived here or did I live alone. Hmmm. I answered I lived alone, he said something I couldn't quite understand and I don't think it was thank you and hung up...

Oh bother, did I make a mistake, should I have lied and said "he" was at work. Tom would be here tomorrow, I could have told a little lie, maybe. But then again, I have PH and my thinker wasn't working that fast. You know, lack of 02 to the brain -- the thinker doesn't work as fast as it should sometimes and today is one of those days.

Well, now my brain is working overtime. Am I getting paranoid, do I have something to worry about. Will bad guys come in a rob me or whatever... and I'm thinking the whatever. Get a grip girl. The 02 is kicking in and I'm thinking. So I called the local police -- it's after hours and I got a recording -- if this is an emergency, please call 911. Dah Of course, there were extention numbers for reporting this and extention numbers for that and to call between the hours of... Give me a break.

I remembered years ago there was this guy who would call and ask you to do a survey and then it ended up being an obscene phone call. Does this give you any indication of my thoughts. I got that call and he really scared me -- I am so guliable, I fell right into that trap and that time I called the State Police because then I lived out of town and the number was listed in the phone book. So I looked up the number of the State Police -- would you believe they aren't listed unless you want to report a Homeland Security or Terrorism tip, Missing Person, Wanted Person etc... again it would be a 911 call and I don't think this call would qualify.

The thinker is still working overtime and I looked at my phone -- I now have caller ID (remember I gave up my cell phone so I could get long distance and caller ID) and guess what -- it says unknown name and unknown number. Hmmm, paranoia kicking in again. What's that saying about luck -- what did my doctor say about Murphy's Law and me...

My State Rep lives a couple of blocks from here and I've known him for over 20 years -- actually we use to work in the same "field" before he went into politics. Anyway, I look up his number and call him... got his recording and left a message. I thought maybe he would know if there are any political surveys going on right now. That would help ease my mind. The primary is in WVA tonight, just south of here and PA has already had its primary so why this call, why tonight. I guess I'll have to be patient and do all my calling tomorrow. Bummer

Surprise, surprise, my son-in-law stopped with my grandson, they were out getting ice cream. So I told him my story of woe and he said with most surveys they ask for the man of the house because men are more open. They will give their salary, rent or mortagae info. All kinds of "stuff" that women won't pass out freely. Was he trying to calm me down. It helped some but not much.

I've done all I can for now and I'm not going to worry about it any more tonight and right now I'm not even sure if I'll do any calling tomorrow. This is a very political year and with all that is going on with Obama and Clinton, maybe it was a legit thing.... but maybe not. Just not sure.