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I just found out about a bill that being snuck through in Harrisburg to EXPAND Estate Recovery in a pathetic effort to balance the state's budget. I'm livid about this.

Basically if you are a caregiver taking care of someone (even your spouse) and they need to receive assistance from Medicare or Medicaid (almost everyone who needs nursing home care these days...unless you are related to Donald Trump or the Rockefellers), the Commonwealth of Pennsylvania is trying to pass a law saying that even if your home was previously "protected" from Medicare, they will put a lien on it to recover the expenses that were paid. It's known as HB1351.

It used to be the surviving spouse/family/caregivers could still keep the family home/farm under most circumstances, but the thugs in Harrisburg want to change that and make a couple million to help balance the state budget on the backs of the elderly poor and their families.

And yes...you HAVE to be poor before you can even qualify for Medicaid, spending almost every dime you have before the Government will help with long term care. And your family home, forget about leaving it to your children, they can't inherit it, they can't finance it and why should you even keep it maintained if there's a Government lien on it?

Together with my husband, I have formed a Political Action Committee and put up a website & blog to start to get the word out. Check it out! spread the word!
http://www.caregiversagainsthb1351.com
4th-Jun-2009 07:15 pm - Soggy sailing
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Tuesday was a great sailing day. The winds were coming from the South and we tacked our way to the Bay bridge for a couple hours. By then we were getting a bit of sun and heat so as we reached the bridge we turned on the engine and powered the rest of the way into Annapolis, MD. We spent the night downtown at the City Docks. Very nice location.

We walked around downtown and had dinner and some ice cream.

Beth had to leave to get back to PA on Wednesday so we headed back to Rock Hall at about 9:30. The forecast called for some really nasty thunderstorms all day.The nasty kind with damaging winds and hail. Yuck. We didn't see any and there wasn't even enough wind to power sail so we powered up the bay.

We got back to the slip in Rock Hall and decided to stay there for the night at least due to the forecast. Wendy and I tried out the pool after Beth left and went out to dinner.
But the forecast for Thursday (today) and tomorrow is kind of wet. This morning had the best outlook for getting some sail time in, so Wendy and I had some breakfast and pulled out of the slip about 9:30 with no destination planned.

I was very proud that we were able to get the boat under full sail, just the two of us. Wendy does very well doing these things even with only a minimal of actual practice and instruction.

We got out into the bay (which takes about an hour under power) and sailed for about 3 hours and headed back towards the Eastern shore. We thought about heading up the Chester River to anchor for the night, but the boat has to be back at noon tomorrow and if the weather in the morning is bad, we could have a miserable couple of hours, followed by a 2 and a half hour drive home. We decided to declare a chartering victory and anchor near the marina again so we can head back early tomorrow. I think it was a good decision because the rain has been pretty heavy since it was made..

So now we are relaxing and straightening up the boat to get ready to leave.

It's been a very interesting experience for me. It's been over 4 years since I was even on a sailboat and it was in early 2000 that we pretty much stopped cruising altogether. I really expected to struggle more than I have, with remembering how to maneuver, the points of sail, using a chart, the names of things, etc.
But it all came back quickly and I feel like I've really been able to impart a lot of practical knowledge in Wendy's direction. It's been a great time, weather and all. I can remember what I liked about cruising and see myself doing it again.
Nah, I don't want to own a boat again, but this business of renting OPB (other people's boats) is something I see myself doing on a regular basis in the future. Dollar for dollar, it's cheaper for the same amount of sailing and no unexpected expenses in between the pleasure of being out on the water.

Vanya Sulie!

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2nd-Jun-2009 07:03 am - On a boat again
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I'm reminded of the song from the Muppet Movie: "This looks familiar, Vaguely familiar"

We arrived in Rock Hall early yesterday afternoon, checked out the boat, motored out to the bay and sailed around for a little while. We came back into where we came from to anchor in Swan Creek for the night.

It was a little windy, I had to tie off the halyard with a bungee to get to sleep, but it worked and now it's light. Wendy was up first. She's got LOTS of enthusiasm for this and is having a ball. I guess those years in infancy spent doing this all the time somehow got into her blood.

Guess I'll start some breakfast. The plan for today is to sail to Annapolis and tie up somewhere for the night.

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27th-May-2009 09:33 pm - The rest of the story
still waters
So Sunday we got Jack up and let him go out on his own with plans to meet us at the Mirage to see Cirque Du Soleil's Beatles "Love" at 7pm. Patty and I took the kids to breakfast at Paris (I think that's the name, it's the hotel with the Eiffel Tower) by the time we got back it was time to head to the car rental place. We grabbed a car and got outta Dodge...I mean Vegas.

Patty had been staring out the hotel windows since we arrived thinking how cool the mountains looked (cool as in really interesting...not cool as in temperature- this is the desert.) We were all so happy to leave the city behind that we were thrilled to see the desert. How pathetic is that?

We headed to Hoover Dam. Got in a little bit of a traffic jam on the way and arrived about 3:45. Not a lot of time before we had to head back, but we had time to take the power plant tour. It was really awesome and we had a great view of the new bridge they are building to cross over the dam to help with the traffic bottlenecks.

We headed straight to the Mirage, parked at Treasure Island and took the tram between them. We planned to watch the sea battle after the Cirque show later so it seems good to park the rental there for now.

Jack doesn't show up for the show. Great. I looked him up on the AT&T familymap website and he's still in the downtown area. So as the time got closer we left his ticket at will call and went in.

As underwhelmed as I was by Zumanity, I was blown away by this one. It was better than I had even expected and I've heard many good things about Cirque shows in general. Plus the music was really good. It was Beatles but remixed in places, reworked in others and completely original as well. (I read later that Paul McCartney and Ringo Starr helped with this and it won a grammy for compilation for other media.)

We came out and still no sign of Jack. I'm still checking the AT&T site, but there seems to be problems accessing it through the iphone. So we watched the volcano erupt at the Mirage and headed back to the car and our Hotel. (New York, NY)

Back at the room we had internet access and it wasn't looking any better. It appears that he was somewhere in or around the Mirage. Possibly looking for us? So we waited for a while, but as the time got on, I knew I was going to have to make sure he was ok. I called the Mirage, gave his description and tried to get them to find him.

Meanwhile Cami was supposed to be helping him to bed and he needed to sleep. It was very late. We let him just go to bed. The box office at Cirque was closed so I couldn't find out if Jack showed up for his ticket.

Finally Pat and I decided to have the girls man the computer and we would go try to find him. No luck, we walked down the strip and wandered the area where he was "showing" and looked at crowds at the Bellagio Fountain and then at the battle at Treasure Island. Finally it was after midnight and we bagged it, hopped on a bus that moved up the strip as fast we could have walked, but at least we were off our feet and out of the crowds.

I fell asleep trying to refresh the computer and his position, but it appeared to have conked out. I had a dream that Jack was back and covered in poop. I woke up and it was about 2:30. I went down to his room and found him in bed. He was bewildered that I was angry. He showed up too late to be seated so they let him in the next show. (which started at 9:30 and over at 11) then he went wandering around the strip to see the sea battle at Treasure Island.

He got himself into bed, but of course didn't do anything about his soaking wet stinking diaper except throw it on the floor with his soiled pants. No meds, he was in crooked, the underpads to keep the sheet clean were all messed up. And he was in the chair for 14 hours. about 3-4 hours more than planned. (and that 10 hours was going to be a long day) Too much time in the chair and Jack cannot support his own weight in transferring. Which means two people have to lift him. More work for the people taking care of him, but Jack never seems to think of that.

Grrr. what the dream must have meant was that Jack was in deep shit.

So Monday morning, we let Lorie take care of Jack and we drove out to Red Rock Canyon. It was very nice, we all got some things from their gift shop and had a great time getting away from the stench of Vegas.

The all of us went to a buffet at the Luxor. It was just OK, I liked the one at Mandalay Bay better. Jack, Patty and the kids then went into the Bodies exhibit. I saw the one in Philadelphia 2 years ago and really wanted to rest and start packing so Lorie and I skipped it.

We were up bright and early the next morning to catch our plane. Lorie, Pat and Jack took the handicapped shuttle to the airport and I took the kids in the rental car. Between my almost getting lost finding the car return and Jack's chair being stuck on a broken lift in the shuttle bus, we made it to the gate just was we started the preboarding. Most of us had not even had breakfast.

But we had a great salad/sandwichs we bought on the plane. Everything would have been fine except for the hour and a half delay in a holding pattern over Harrisburg. We arrived in at 6pm, the chair came up from the cargo just fine, we changed Jack in a companion bathroom and we were on our way home.

My overall impressions of the trip is that this is an amazing country and the things I enjoyed the most were not made by man, but by nature. I think spotting the mountain lion was my highlight and it only lasted about a minute and a half. Custer Park, Red Rock Canyon and the Badlands were just breathtaking in their weird beauty.

It's good to be home.
24th-May-2009 06:36 am - Vegas so far...
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We arrived Friday via Allegiant Air. On the plane the flight attendents ran a pool for a bag of money and of all things, Jack won! Then it took nearly two hours to get to our hotel, waiting for a handicapped acccessible shuttle bus.

Dinner downstairs at the hotel and then we got Jack to bed. He was so much more comfortable in a hospital bed. I rode the roller coaster twice with the girls and then hung out downstairs with Lorie.

Saturday we headed out to a buffet for breakfast at Mandalay Bay. It was huge! The we headed to the Luxor and saw the Titanic exhibit, which was really awesome, very interactive.
By then it was time to put Jack into bed for a break in the middle of the day. While Cami did that, Wendy and I got together with Fran and Shirley, who are staying on the other side of the mountains. Because they drove in, they offered to drive us out to Red Rock Canyon, which was gorgeous and a welcome break from the intensity that is this particular city.

When we got back it was time to get Jack out to dinner and Zumanity. This was my first cirque du soleil show and I must say, I was underwhelmed. I had already see the best parts on YouTube and frankly some of the bawdiness was just plain stupid. I guess I expected more.
Then Jack to bed and Patty and I started plan to rent a car to take the kids out of town today instead of trying to see any more of the strip. I think another loop through Red Rock Canyon and a drive to Hoover Dam is just what we need.

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23rd-May-2009 07:08 am - South Dakota part 3
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So the plan on Thursday was to head out reasonably early. I was up by 6:30 am, wrote my pages and was looking out the sliding glass doors to the deck from the room Pat and I share. The owner had cleared some trees to expose a beautiful vista of the Black Hills. As remote as this house is and as inconvenient as it is not to have cell service, I loved just staring at this incredible view. On this morning, I was thinking "Gee I can stand here and get dressed and there is no one to see me except perhaps the widlife."
At that moment, a mountain lion walked into view about 30 yards from the house!
I said loudly to Pat, who was just stirring "Oh my god! A mountain lion!" she leaped out of bed saying "Camera!"
I dashed upstairs half dressed and ran for the camera, Lorie was up and in the kitchen.
I told her there was a mountain lion and we both ran for the living room window as it was walking through the clearing. I managed to snap two pictures as it entered the trees again down the hill.
After reading the warning about mountain lions in the house book when we arrived, we were a little freaked, but realized over the next few days that it really wasn't likely we were going to encounter, let alone actually see, one. We felt really lucky. Funny thing was it wasn't scary at all. It moved like a giant housecat and was obviously just passing through.
On our way out to the Badlands we stopped at the office. I asked the young man "So exactly how prevalant are mountain lions really?" His eyebrows flew up.
"You didn't see one, did you?" I told him all about it and he was as excited as we were. I told him I got a couple picture and had to run out to the car to show him. Apparantly many of the homeowners on the mountain had never seen one. He lived in the area two years before he saw one.
With all of the mountain lion excitement, our drive out to Wall Drug through the Badlands was fun. The scenery is astounding, almost otherworldy in places, and we saw plenty of prairie dogs, buffalo, mule tale deer, I even had to avoid hitting a turkey in the road.
Wall Drug was kitschy but fun. When we were almost back to the house, we encountered a herd of bighorn sheep grazing by the side of the road.
Then it was time to pack up and head out the next morning. Next stop: Las Vegas

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23rd-May-2009 06:31 am - More South Dakota
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So after a hectic Monday, first thing Tuesday we headed to Mount Rushmore, the reason for the visit to the Black Hills. It was a more interesting place than I thought it would be. We walked the Presidential trail around and in front of the monument, done without Jack because of many steps. Had lunch and headed off to drive through Custer State Park via Needles highway. It was absolutely breathtaking. We stopped at one point to take pictures. Just wow. Another mountain being carved in the Black Hills is the Crazy Horse Memorial. It's going slower there. They've been at it for 50 yrs, but they are a non profit that refuses to get involved with the Government, can't say I blame them there.
The Native American museum was really amazing.
On our way home Jack told us that he was having a but of pain on his bottom from so much sitting, so plans had to be changed. We also decided to have David ship out Jack's air mattess next day. Then we scrapped the drive to Devil's tower off the schedule andsplit up on Wednesday. Jack Lorie and I for a trip to Deadwood, and Pat and the kids headed to Custer Park again.

Deadwood was much more interesting than I thought. I stopped to check out a jewelry store (looking for stones actually) and ended up with a pair exquisite earrings, courtesy of Jack. This was really unusual because I will hardly ever buy, let alone wear any jewelry but my own, but these earring were a gorgeous design made in Bali.

The as we went to watch a reenactment of the murder of Wild Bill Hickock, Lorie and I became part of the "story", she as Agnes Thatcher, Wild Bill's wife and I as Calamity Jane, Bill's friend. Later on as we had lunch in the Double D saloon down the street, Wild Bill showed up and chatted with all three of us. We got Jack's picture with Wild Bill, after all, he posed with Goofy in Walt Disney World, might as well get Deadwood main character.

Jack had a better night Weds, so the plan to head to Wall drug and the Badlands on Thursday was back on.

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23rd-May-2009 12:23 am - South Dakota
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The whole point of this trip was to get Jack out to see Mount Rushmore. So we flew from Minneapolis on Monday. Jack and I landed first, got the rental van and when the others arrived about an hour later packed up the van and headed to the rental house.

The folks in the office were out. So I took the note and directions taped to the door and started up the mountain. Take the first left. Oops, the first left was a dirt road, but hey this is a cabin on mountain, so it's a dirt road. Well except the dirt road got worse and there was no where to turn around once I realized that there was no way this was the road. The van caught some kid of branch underneath and then it came loose. Fortunately the dirt road ran into the "right" road, but not before I damaged some trim on the van.

Then it seemed to take forever to get up to the house. It was somewhere on the side of the mountain we realized there was no cell phone service. Nada.

This really dumped my spirits which were already tired from a day of travel complete with some of Jack's more socially unacceptable antics The house was very remote.

While looking through the binder that contained info about the house, we found three pages of information about how to understand mountain lion actions to protect yourself. Great! mountain lions, too!

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15th-May-2009 07:15 pm - JGBA Day two
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Well the trip to Minneapolis yesterday went smoothly. The flight was on time, the US Air personnel were friendly and able to follow instructions. The transportation system from the airport to the downtown area via light rail was very easy to navigate. This is a very bicycle public transit friendly city.

Today we headed to an all you eat buffet for an early lunch. We stopped at the main branch of the post office to mail some post cards (which looked familiar- probably built around the same time as 30th Street in Philadelphia) and then wandered the downtown shopping district for a while until "walking with dinosaurs" started at 3pm.
The show was quite interesting, if a little hocky. It was fascinating to watch the dinosaurs move, but it never seemed to cross that threshold into feeling they were anything but very realistic puppets.

We walked back via the skyway which I'd an entire system of raised walkways in the downtown area. We were a little beat and ordered in pizza for Jack and the kids. The kids are now headed to the waterpark (part of the hotel) and Jack is on his way to bed.

Once Jack is safely tucked in, Lorie, Patty and I are going to head out to have a quiet dinner just the three of us.

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10th-May-2009 10:18 pm - Jack's Great Big Adventure
Butterfly
aka...JGBA

Well we leave on Thursday. I need to write this down as much for myself as for some others who are traveling vicariously through us.

Cast of characters: Me, Jack, Lorie, Pat, Cami, Cori & Wendy. (& Flat Stanley...more about him later)
rough details of JGBA )

Then 5 days to do laundry, catch up on paperwork. Wendy and I are chartering a sailboat in the Chesapeake June 1-5. Beth Baur is coming along for the first part of that adventure. I've been itching to get sailing for a few years now. No itinerary on that trip, it will all depend on the wind.
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