Starting the Research Study Meds

Today is my ninth day on the study meds with the Chronic Fatigue Syndrome research study I signed up for.  (For details on the study see: http://thesynergytrial.org/)

The first day I couldn't tell much difference. The next four days I had a background headache of a different kind than I usually have. It went away a little bit when I napped but sometimes got quite bad in the evening and I really couldn't do much of anything those days. (At least the Olympics were on). 

In the afternoon of the 6th day (Tuesday) the headache went away and I suddenly felt pretty good. Not like I had more energy necessarily, but I had a lot less "malaise" or less of the "I feel like I have the flu" feeling that I otherwise have had all the time.

The next day (Wednesday this week) I had three things scheduled -- Elyse and the boys coming by (I had that scheduled for awhile and could have cancelled but didn't want to), visiting teachers (only day they could come) and the annual mammogram (I just didn't want to have to reschedule it). I usually try to avoid having more than one thing on a given day, and the instructions for the research study say not to increase your level of activity significantly until you have been on them a couple months, but since I was feeling a slight improvement, I thought it would be interesting to see how I did on, and after, a day with multiple things scheduled. 

I did okay during the day Wednesday, but the real test for me is how I do the following days. Yesterday (Thursday) I was very tired and not up to doing anything but I wasn't as bad as I would have expected. Today (Friday) I'm not back to where I was Tuesday afternoon, but I am, again, I'm better than I would have expected.

So that is a very good sign. This is the first time I have taken a medication for CFS that seemed like it made me feel better and not worse, so I am really encouraged.

Now that I have tested the limits I will try to be good and not increase my activity level too much. But at least maybe I will get eventually to where I can do useful things on the computer instead of watching PBS kids :)

A Visit to Club 33 - An Unexpected Christmas Gift

Preface: Pato and I just got back from a short weekend trip to Disneyland.  We had decided to go for two reasons - (1) we had never been during the Christmas season and (2) the first weekend in December is when Disneyland sponsors a special "Candlelight Processional."  It includes an orchestra, lots of choirs and a telling of the Nativity story from the scriptures.  It sounded like a nice thing to do before Christmas.

The Story:  So, on the plane from Salt Lake to Orange County, I was sitting by a man from southern California.  When he heard we were going to Disneyland, he mentioned he was a member of Club 33.  For those of you who don't know, Club 33 is a very exclusive private restaurant located at 33 Royal Street in the New Orleans Square part of Disneyland.  Walt Disney planned it as a place he could have a quiet dinner with his sponsors inside the park.  Memberships to Club 33 are expensive and hard to get and are often passed down in families for generations. 
After Jon mentioned about Club 33 and asked where I was from he figured out that I must be a Mormon.  We spent the rest of the flight in conversation about the church.  He knows quite a few members of the church and has certain questions he likes to get their opinions on.  It was an . . . interesting conversation.  Mostly, he's not a fan of Utah liquor laws.  But he was very interesting to talk to.   At the end of the flight he found his cell phone was out of battery, so he borrowed mine to call his ride.  After we got off the plane he said "Well, maybe I'll call tomorrow and see if Club 33 has any cancellations."  He gave us his card.  Honestly, I really didn't expect to hear from him. 
The next morning we got a call on my cell phone.  It was Jon.  He asked if we would like reservations at Club 33 at 2:00 - they had had a cancellation.  We were both blown away!  We hurried back to the hotel to change into slightly nicer clothes and at 1:57 were at the door of Club 33, right next to the exit for the Pirates of the Caribbean ride.  The receptionist asked our name and what time our reservation was for and let us in.   We waited maybe 10-15 minutes in the lobby before taking the antique French elevator to the upper floor.  We were escorted to a table in the Dining Room overlooking the Rivers of America and Tom Sawyer Island.  We were there a total of two and a half hours and the food was amazing.  There were appetizers, seafood, salads, soup and dessert available on a buffet and a menu from which to order the main course.  After appetizers we walked out on the balcony and took pictures while waiting for the main course.  Everything was leisurely in a very nice way. 
After the main course and a trip to the dessert buffet, we got talking to our waitress.  Her name was Carolyn and she had been working there for forty years.  She said she was the second "oldest" employee in the Disney company (oldest in the sense of consecutive years working there.)  She gave us a pen with the Club 33 logo on it.
All day - before lunch and after - we would just start chuckling randomly at the thought that we were going to eat/had just eaten at Club 33.  Really, it is the most exclusive public area that I know of in any of the Disney Parks. And it was just so unexpected - like Santa Claus came down a chimney out of nowhere and put a gift-wrapped surprise under our tree. 
The rest of the weekend was also wonderful - the Candlelight Processional program and music were wonderful, the snow on Main Street, the other live entertainment . . . but the highlight remains the totally unexpected surprise lunch at Club 33. 

Us at our table after dessert

On the balcony (just outside from where our table was) between courses.  Rivers of America in the background.

A view of the dessert bar.  Notice the Club 33 logo cookies in the background.

Paul at the table just after we were seated.  Behind him is the table Lillian Disney used to sit at every Mother's Day. 

Me at the door on 33 Royal Street.

The Mickey Mouse hat I bought there.

The Happy Ending - continuation of the flood story

In my last post, I told you all about the flood Pato and I got to be a part of.  I left off where we had gotten evacuated to an elementary school. 

We had been aimlessly wandering around the cafeteria for a little bit when the janitor came.  He said he would be opening up the gym  and getting out basketballs (several men in the room cheered) and also that he had opened the library and turned on the TV in the library with news from the area – something we were all hungry for.  He also introduced a lady from the community who said they would do whatever they could for us.  Pato and I went into the library for a few minutes.  I was just checking out what young adult fiction I would want to read to pass the time when they announced over the PA system for everyone to come back to the cafeteria.  We went back and they announced that the Red Cross would not be able to set up at that school and so we would be moved.  They would move us by school bus to a sports arena on the campus of the university in Binghamton.  Around this time some of the friends we had made were starting to leave.  There were two couples on vacation to the Finger Lakes area who were being picked up by one of their daughters who lived in the area.  Also I had gotten to know a lady who worked at the Wendy’s across from the hotel and around this time a friend or relative came to get her. 

As I was walking around saying goodbye to people I knew, a lady walked by who I thought must be from the community.  The community people had meanwhile brought in PB sandwiches and snacks that they were handing out.  I stopped her briefly to say “Thank you so much for coming and helping us!”  Pato was there too while I was talking to her.  She asked where we were from and I briefly told her our story.  Then she said “Would you like to come stay at our house?  We live nearby.”  Pato and I were struck dumb.  My first thought was “Wow, what a kind offer, but why us?”  She noticed both of us didn’t know what to say and repeated the offer, saying her sons had just moved out to go to college and that they had room.  We still hadn’t got our voices back and she said “Oh, I can let the two of you think about it.”  Pato and I looked at each other.  There was no question as to whether this was a wonderful, amazing offer.  We said, no, we don’t need time to think about it, we just were so caught off guard by your generosity that at first we didn’t know what to say.  A few minutes later the announcement was made that the busses had arrived.  I think she could see that we might get pressured into getting on the busses, so she talked to her husband who was there and he said he would walk us to their house.  It was cloudy and damp, but wasn’t raining.  We walked through the school yard and about half a block through a nice neighborhood and were at their house.  I think Pato and I were a little dazed and didn’t even really realize it for awhile.  Kevin – that was the husband’s name- said when he had arrived at the school and looked through the windows of the cafeteria he thought that everyone in the room “looked like their dog had just died.” 

Kim stayed at the school to help out for awhile since right before we left they found out another group of evacuees was going to be brought there before being taken to BU sports arena.  Kim was a teacher at the school, so she thought she ought to stay and help. 

We talked with Kevin out on their patio when we got to their home.  Since it wasn’t raining it was nice to be outside.  It was also the only place we could get any cell phone coverage.  The coverage was intermittent, but we started being able to  make some calls and sending some emails. 

It was funny, we felt like we were holding up well through everything:  just kind of watching the flooding and just going along with the experience.  After a few hours at their house though a sense of normalcy started to return and we realized that we really had felt somewhat displaced.  But the overarching feeling was one of wonder and gratitude that we had been taken home by these lovely people and that we had been so protected and taken care of throughout the day.  When I thought of all the people who had just lost their homes, or large amounts of property, or who had been without power completely we were just amazed that we had passed through all of this with so little problem or hardship and now these kind people had given us a place to stay.  

I was due to fly out the next day, Friday, so the most important thing we found out as we talked to Kevin was that the Binghamton airport wasn’t far from there and that there would be a way to drive there without going through flooded areas.  I started to say “I could get a taxi” but then realized that would probably not be possible and anyway, they said they would be happy to take me. 

Pato’s plan was to have stayed at least until Monday since the equipment from work was supposed to arrive sometime, but in talking to Kim we realized that it would be a few days until things got back to any kind of normal operations in the area.  We found that there was room on my flight, and so Friday afternoon, after spending a delightful 24 hours with Kim and Kevin, we were both on our way to the airport.  Kim and Kevin didn’t mind the chance to go for a drive and also wanted to drive out a little further to see if they could find a grocery store that still had some groceries. 

At the airport Kim stayed until we made sure our flight was going to leave (most of the flights Wed and Thurs had been cancelled). 

We flew out two hours less than exactly a week from when we had flown in. 

The whole week was filled with wonderful and amazing experiences.  The thing Pato and I pondered as we waited at the airport was how much harder it would have been for us to leave and fly home if we had ended up in that stadium.  There were thousands of people there, and by Wednesday or so of the next week, we heard there were still displaced people there.  Pato had a work colleague in the area who offered to come get us, but his area was flooded too and it might have taken some time.  As it was, instead of spending Thursday night in cots with thousands of people in an arena, we stayed in Kim and Kevin’s comfortable basement apartment.  Although staying in the arena would have been an experience too, we were grateful for the chance to get to know these kind, gracious people.

The quote I left in the note for Kim and Kevin expressed our thanks:  “God does notice us, and he watches over us.  But it is usually through another person that he meets our needs.” 

 

A map of Palmyra - more about that in the next blogSo just under two weeks ago Pato found out that he needed to go back to Owego, New York again for work. He had been out there several times this year. He was scheduled to fly out the Tuesday after Labor Day. We didn't have plans for Labor Day weekend, and so I had been thinking it would be fun to plan a trip together. When we found out he would be going back to Owego, we decided to change his flight to the Friday before Labor Day and see if we could find a flight for me. That all worked out. Our plan was to fly into the airport (Binghamton) where Paul would be flying for work anyway, rent a car and then drive to Palmyra and see the church history sites since I had never been to them. (Palmyra is about a two hour drive from Binghamton. Binghamton is in the southern part of upstate New York, near the Pennsylvania border.) After we had the flights booked and a bed and breakfast in Palmyra to stay in, I thought I ought to let T-man and S know we were going to be in their general area, even though we weren't planning on enough time to visit them. I sent them an email. A little later S called me and said that they were already planning on being in Palmyra that weekend, along with K-Rae! What a great surprise! We had a wonderful time in Palmyra, part of the time with them and Letty and Gracie and Baby A and part of the time on our own. My next blog entry will be about that. But this entry is about what happened after we left Palmyra.

On Tuesday afternoon we left the Palmyra area and headed towards Owego, driving along one of the finger Lakes. We had a nice dinner together and then headed to our hotel, the Hampton Inn in Owego New York. We were on the third floor, so when it started to rain during the night we could hear it. It rained hard all day Wednesday - harder and faster than I have ever seen except in the worst thunderstorm. But, it was very nice hotel and in the morning there was a great view from the breakfast room of the Susquehanna river. Paul had stayed there before, but I had forgotten it was right on the Susquehanna. We did some laundry and emails and in the afternoon decided to go to the Corning Glass Museum in Corning, about a half hour drive from Owego. As we drove we turned on the radio. We found out that all the schools in the area had been closed and flooding was expected. They said they thought the flooding would be the same or a little higher than a big historic flood they had had in 2006. They said a storm had stalled in the area and the heavy rain had not been expected, but that, coming right on the heels of Hurricane Irene, the ground was already saturated, thus, the expected flooding. On our way back to Owego from the Corning Museum (which by the way was awesome) it was still raining hard and we started to notice flooded fields and farms as we drove along the 17, parallel to the Susquehanna. We did pause to question whether we should even be going back, but it seemed like the right thing to do so we kept going. Besides, all our things were in the hotel. By the time we were getting back to Owego, a state of emergency for the county had been declared. They said to get what you need and get inside by dark.

We went and got gas and went to the grocery store across the street, then went back to the hotel for the evening. By then the water was creeping from the river up into a field at the west end of the hotel.

That night the power went out about 4 am. It was pitch dark in the room - the power was out throughout the whole village of Owego. A little while later the hotel generator came on with lights illuminating the parking lot below our window. Suddenly we could see that nearly the whole parking lot was flooded, at least somewhat. Our rental car, right below our bedroom window was still on dry ground, but most of the rest of our lot was flooded, along with the neighboring parking lots (there were two other hotels next to us along the river) and the street and the parking lot of the grocery store across the street. Although the water was creeping toward our car, there was nothing to do about it since the way out of the lot was too deep to drive through. But anyway, we weren't too worried because we had seen some photos the night before of where the water had gotten to in 2006, so we thought the water would probably reach its peak soon. For the next hour or so we just sat by our window and watched the water rise as it gradually got light.

Eventually we went downstairs and got some breakfast. They had put out all the cold food, so we had cereal and fruit and yogurt and hard boiled eggs. All the hotel guests were very chatty, so that was kind of fun. We heard from someone then that the water wasn't supposed to crest for quite some time - several hours at least. Everyone sort of wandered around and watched the water rise. The Hampton was built in 2007 and so it was built on struts, elevating it higher than the flood levels had been in 2006. Although the parking lot was flooded and we couldnt leave, we had at least lights in the halls at at the front desk and could see that it would be quite some time before the water would get up to the first floor of the hotel.

Hotel guests sitting under the Hotel entrance portico, watching the water rise.

Pato by the windo in the breakfast room looking over the Susquehanna RiverPika standing in the hotel front portico area. The photo shows where part of their driveway was washed out (weakened from below) earlier this spring.

A couple people in a canoe paddling down what had been the street in front of the hotel. The Arby's in the background was a little higher and the cars there stayed dry until late in the day.

As the water kept rising it eventually started to get into our car. We watched random electrical failures happen on other cars in the lot - windshield wipers coming on, parking lights fading on and off, even a truck popping open. The light blue car in the middle of the photo below is our rental car. It was parked by the ramp leading up the the hotel entrance on the side of the building away from the river.

This photo shows the village of Owego when the flooding was at its height. Some people told us later they had never seen flooding go beyond Front Street, the first street parallelling the river. As you can see, this flooding went through almost the whole village. Here is an aerial shot of our hotel and the neighboring Treadway Hotel. Our car is parked below the red arrow. The front entrance portico of the hotel is at the left end of the hotel in this shot. The water at this point was quite a ways up the first floor of the Treadway hotel, but was just to the first floor of the Hampton Inn we were staying in. The generator for the hotel can be seen at the bottom right hand corner of the hotel. It was starting to be threatened by the rising water.

A view of the end door of the Treadway hotel from the portico/front door of the Hampton Inn.

Eventually the hotel let us know that the National Guard would be coming to get us. We packed up our room and packed small bags to take with us. Some friends we had made who had rooms on the first floor left some of their luggage in our room for safekeeping. We waited a couple hours, still watching out the windows until the trucks arrived. They had big wheels and were able to drive through the deep water.

Below - a view out of our hotel room window of where the trucks parked. You can see part of our car in the lower right hand corner of the picture.

We had to walk through just an inch or so of water to climb into the trucks, twenty people per truck. Below - a shot out the back of the truck as we drive away from the Hampton Inn. Treadway Hotel is to the left of the photo.

We rode through water and uphill in the trucks. They eventually brought us to an elementary school. We had not had cell phone service all day, and we didn't here either, although some others had some reception. We all went to the Cafeteria of the school and hung out. Well, I need to tell you the happy ending of this adventure, but I'm out of time for the moment. Oh, by the way, Thursday the 8th of September, the day we were evacuated, was our wedding anniversary. Quite the memorable one!

This Week

Hello everyone!
Yes, I am still "stuck" in Germany :) Of course that is no great hardship! I feel very blessed that I have friends to stay with, yummy German food to eat and a train pass so I can get around. And now I even have a return flight scheduled. I scheduled it for Monday because I wasn't sure when the planes would start flying again and I figured it might be better not to fly the very first day. So to summarize, I think the Hamburg airport was closed six days, the Frankfurt airport for five days. As far as I know, as of today (Thursday) things are -relatively speaking -back to normal. Because I left one of my suitcases at a luggage storage place in the Frankfurt airport, I have to fly out of Frankfurt (even though I'm currently staying in Hamburg.) So Sunday night late I will get on the train back to Frankfurt, arrive early Monday morning and then fly out a few hours later, arriving back in Salt Lake at 7 in the evening, otherwise know as 3 am German time :) When you fly west it makes for a very long day.

Yet another adventure

Well I was all ready and excited to come home today but it was not to be. Despite the volcano in iceland and the fact that other airports in germany were closed, as of last night it seemed that some flights might leave Frankfurt today. My flight was cancelled just after I got to the airport. I knew it probably would be but still it seemed like it made sense to go to the airport and find out what was going on and leave one bag in long term storage there. In the delta area things were relatively quiet since they weren't doing any rebooking there - just handing out a flyer with a number to call and other information. I had already emailed with paul about options In case it was canceled. It seemed like it would be best for me to wait a few days before trying to fly out and I have friends to stay with so its not hard to do. I used the scale at a deserted check in counter to check the weight of the bag I had packed yesterday. I moved a few things around then checked that bag at long term storage. I took a train back to frankfurt main station and am now on a very full train heading for hamburg. I didn't think about the fact that all flights are cancelled - not just internatiol ones - so the trains are packed. Still everyone seems to be in a bit of a holiday spirit or at least are taking things sanguinely. I had a good spot on the floor for awhile and now have snagged a seat When I get there I will try calling delta again. (I wasn't able to get through earlier when I tried ).
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Short Update

I spent Easter and the eight days after Easter in Hamburg or in Pinneberg (a small town outside of Hamburg. Tuesday morning ( April 13th) I left Pinneberg for Goettingen. I spent one full day in Goettingen and am now on the train heading to Nuernberg. I will have dinner with some friends there, stay overnight and tomorrow head for Frankfurt where I will do my final shopping and packing. Friday morning I will then be flying home. The weather is still mostly cool here, and sometime near freezing overnight, but the forcythia are all blooming and some fruit trees and flowing trees are starting to bloom. The various kinds of willow trees are starting to turn light green. Acually, it looks like things are a little further along here in southern Germany as I approach Nuernberg and some othe other trees are getting leaves. I think I just saw an apricot in bloom.
I will try to post some photos from Hamburg and from Goettingen.