Alexis has a boyfriend

I'm ready to talk about it.  I have a boyfriend.  This is the man I met online from Idaho and have been meeting in Snowville.  He came to Salt Lake last week for his daughter Kelli's wedding at La Caille. We decided to take advantage of the fact he was in Salt Lake to have him stay in town and spend more time together.

He invited me to go to the wedding and reception with him.  I love La Caille so it wasn't a tough choice.  I decided to join for just the reception though so I met him there.  I got there just in time for the couple to come out and do their first dance and champagne toast.  Then we found a seat and enjoyed dinner and drinks.  We visited and I met his daughter, son, and daughter in law.  There were about 200 people there.

We eventually moved outside and sat on the patio enjoying the shade and the beauty.  You could smell the fragrant flowers.  People kept coming up and telling him how beautiful his daughter was and how much they were enjoying the wedding.  It really was pretty. The couple was stunning.

At 9:30, they did a sparkler send off.  I've never seen one of those before but it was fantastic and very fun.

Me and Fritz

Kelli and Scott, the Bride and Groom

Fritz has been feeling guilty that we've been meeting in Snowville and having average (cheap) food.  He is a big foodie like I am.  He also wanted to take me out somewhere really nice for my birthday.   We ended up going to Valter's for dinner.  It was fantastic!  Fritz asked Valter to take a photo with us.  I love it!

We also spent lots of time talking and telling stories.  We went out for fresh seafood.  We drove around Salt Lake to introduce him to the city from my perspective.  It was fun to share the city and act as tour guide.

We discovered we really like each other (wasn't a huge surprise but confirmed what we suspected).  So we will keep spending time together as we can.  Probably next visit will either be in Snowville for another dinner or I will venture up to Buhl and Twin Falls to see what his world is about.  Pretty fun and exciting considering I had decided dating was highly over rated and I was ready to be a bachelorette for the rest of my life. Funny how life takes twists and turns.



 

 

Johns Hopkins Part 2

As part of our trip to DC, I had a follow up appointment at Johns Hopkins.  Philip and I drove up to Baltimore.  I wasn't sure how long it would take so we took our time and got there with plenty of time to drive around a bit, have a great lunch, and  check into our hotel.

We were starving so we used Yelp to find a restaurant for us for lunch.  We ended up at the Capital Grille which is a fancy steak house. We were in shorts and T-shirts but they seated us and we had the best burgers ever!!  It was a real treat.  We were shocked that it cost $17 to park the car for 1.5 hours.  No wonder people don't drive much!  After that, we headed to our  hotel to check in.  Much to our surprise, we were 1.5 blocks from the Oriole's stadium and there was a game with the Yankees that night.

 

Phillip's.  Philip recognized this building from searching for concerts in the past. 

We headed over to Johns Hopkins Myositis Center.  We got there about 30 minutes early but that did not result in us getting seen early.  In fact, Dr. CS was running about 2 hours late.  That is a bummer but I had a book to read and Philip had his tablet.

When she came in, you would never know she had been running all day.  She was very impressed with my weight loss.  She was also amazed I was able to get that special test.  I was the first person she had seen or heard of that was able to get it done.  She commented on my tenacity.

We agreed I do have IBM (as I already knew) but also she thinks I have PM and that is why I am responding to the Methotrexate.  She said she had another patient in the past that was similar to me. We talked about how we don't know everything about Myositis but there are others like me and we are still learning.  I probably have some different form of Myositis or IBM that hasn't been discovered yet.  She had just returned from a  symposium in Sweden on Myositis.  She said others are seeing people like me.

She also explained that IBM seems to impact women different than Men.  Women don't seem to get it as severe.  She said also you see people with IBM that plateau and then have a steady and steep decline only to plateau at that level and then a rapid decline again and again.  But then there are others that don't decline that way and while they decline, it is a slow yet steady decline.  A decline over years and  years.  I want to be that second track.

We also talked about work and how working can have a huge impact on stress and ability to cope and deal with this nasty disease.  She encouraged me to give it some thought.  That IBM is not difficult to prove permanent disability.  I agreed to consider it but I wasn't ready yet.

She also asked if I was going to the Myositis conference in Orlando in September.  I haven't given it much thought.  But she stated I should give a session on being your own advocate.  I hadn't thought about that but I probably do have something to share about that.  If I am offered a scholarship from the Myositis Association, I will offer.   It might be fun.

She asked if I would come back in 6 months to see how I am doing and do some work with their PT and OT.  They are doing some work on special exercises for people with Myositis that help with stamina without wearing out muscles.  She thought they could help me fine tune my gym routine and help me feel better.  So I am headed back in November on my way to visit Nola for the scrap book retreat at the beach.

It was a good visit.  Very optimistic.  Philip got to finally see what it is all about. Dr. CS was very friendly with Philip and wished him great luck in his educational pursuits.

The Washington DC trip

I finally have a few minutes to write about our DC trip.  Life has been a whirl wind since we got home. 

Let me start by saying we had a fantastic time.  As you know, we left for DC 2 days after Philip graduated High School.  We flew in and out of Baltimore. We got lucky and found a great deal on First Class tickets so we felt extremely spoiled.  It was great because we got dinner, spacious seats, and excellent service for the 4.5 hour flight.  The first night, we stayed by the Baltimore airport since we got in so late at night.  We stayed at the Westin which is always a treat for Philip and I.  We love Westin.  We slept in, had brunch at the hotel and then took the Super Shuttle down to Washington DC.

We were able to check into our DC hotel early which was great while we waited for Nola and Gregg to arrive by train.  Their train was delayed so Philip and I relaxed and talked.  We also went and got a quick dinner and brought it back to the hotel for Nola and Gregg.  We stayed at a really cute boutique hotel right on Dupont Circle.  It was called....yes...The Dupont Circle Hotel.

 



 Luckily Nola and Gregg finally made it, checked in quickly, ate their sandwich and we dashed down to Union Station to catch our night tour we had booked in advance.  We boarded a trolley bus and took off.  It is really tough to not get overwhelmed by all the things to see in DC.  But the tours help you get around and see lots in a short period of time.

Philip at Union Station getting ready to board the trolley.  He refused to smile or look at me.

On the trolley.  Gregg has the best photo faces!!

The capital is being repaired.  It will be covered with scaffolding until the next inaugural.

Washington Monument.  Amazing.  Check out those rain clouds!!

Philip at Lincoln Memorial looking back over to the Washington Memorial

The Lincoln Memorial

Looking back again.  The clouds are really looking ominous.

Lincoln Memorial from the distance.  It started raining
 very hard as soon as we got back on the trolley. 
We are glad we made it back in time.



One of the reasons we did the trolley tour is because it went to Iwo Jima. 
The rain stopped just as we got there.  The clouds made this photo just amazing!

Philip by the White House.  We couldn't get any closer on the bus due to security. 
You can see Philip still wasn't interested in photos.

Philip went over and got a better photo of the White House.

Inside Union Station.  It was beautiful.

 Our tour dropped us off at Union Station.  It was pouring rain and we all needed a bio break so we went inside.  Nola and Gregg had just been through there earlier that evening but at 10:30 at night, it was quiet and deserted.

The next morning, the plan was that Nola and Gregg went to breakfast without us since they rise earlier than we do.  But much to my surprise, we jumped out of bed and joined them.  The hotel had a restaurant that had a fantastic breakfast.  They had normal breakfast stuff but a really fun selection of European breakfasts too that we really enjoyed.  After breakfast, we caught a cab down to catch our electric cart tour.

This tour did some of the same things we did during the trolley tour but it was in a small open air cart that holds 5 people plus the tour guide.  I have to say we really enjoyed the electric cart.  Our tour guide, Amy was fun and we liked feeling the air and being able to get super close to things.  It was great for taking photos too.  At one point, we were driving by the White House and got stopped in traffic while we waited for the Presidential Motorcade to go.  It was a ton of cars and the car with the flags. We assume an Obama was in that car.  How exciting is that???

Gregg and Nola in the cart getting ready to go!

Nola, Me and Philip in the cart.

Jefferson Memorial.  We couldn't stop but we got a great photo op!

Martin Luther King Memorial

Our selfie in the shade

What a fun group!

We had the electric cart drop us off at the Holocaust Museum, which was our planned activity for the afternoon.  Philip has spent many years in school learning about the Holocaust so it was high on his list of things he wanted to see.  First we went to the restaurant there for some lunch.  Philip was the only one brave enough to try Jewish food there.  He had a potato knish for lunch.  It was....potatoey.  After we were rested and fed, we headed into the Holocaust Museum.  Much to our surprise, you had to get tickets far in advance and there were none available  but we read online that you could check with the information desk for tickets and we were lucky to get tickets to use within the hour.  So we visited the children's portion of the museum.  It was the story of the Holocaust from a child's perspective.  There is no upbeat way to experience the Holocaust Museum.  It is  dark part of history and they didn't do much to spare the emotions you feel when put into that sort of environment.  The elevator was big and designed to be like the gas chamber inside.  The sound was deafening silent and the air was stale.

The lobby area of the Holocaust Museum

Auschwitz sign

 We started on the 4th floor and worked our way down, learning the timeline of the Holocaust.  Seeing displays and memorabilia from that time. They had an actual prisoner's uniform, a room of shoes (that were luckily gone while we were there), a replica of the barracks the prisoners stayed, a diorama of the gas chamber, tons of stories of the people and events, and maps and such of the time period.  There were video screens hidden behind 1/2 walls with warnings to not look if you are sensitive.  I didn't look.  The walls were gray.  The rooms were fairly silent even though there were tons of people in there.  There was a replica of the sign over Auschwitz.  It was honestly sickening.  The main theme of the museum was to learn and never forget....don't let it happen again.  As we left, I was certainly impacted by what I saw.  I am glad I did it but it left me feeling sick to my stomach.  We went back to the hotel to rest our feet and I took a long nap.

That night for dinner, we went to Central which was a James Beard award winning restaurant.  They had a fixed price menu which Nola and I enjoyed.  Philip and Gregg ordered off the menu.  Everyone loved their food and it was fun.  It was a miss on me but shortly after we sat down, two men in suits sat at the table next to us.  Gregg immediately recognized one of the men as Chuck Schumer, a New York Senator.  He might have thought Gregg was a zealous observer because they changed tables shortly after sitting down.  Haha.

The kitchen in the restaurant

The "hanging meat"

The next day, we went to the Smithsonian Zoo.  I wasn't going to go because it was too much walking and I thought I would be tired from the other activities.  But I was feeling good so I joined the gang.  When I got there, I was pleased to learn they had scooters you could rent.  So I jumped on one and enjoyed the zoo.  Our  main goal was to see the pandas.  We went along the trail and saw a bear, sloth, zebra, cougar, and even otters.  We got to the panda exhibit and didn't see any.  We figured we would come back but we found a zoo employee and asked where the pandas were.  Much to our surprise, they were inside.  So we circled back and went into the exhibit.  Good thing we did because there they were!  They were all pretty lazy and sleeping but we got to see them and that is what counts.  The only bad part is the zoo was getting crowded and there were tons and tons of kids on school tours.  After that, everyone was hot and tired we decided to call it a day.  We went to eat at a funny little bar place across the street.  The food was delicious and we enjoyed it.  Then we headed back to the hotel to rest.

The next day, we headed over to the Smithsonian for the Natural History Museum and the American History Museum.  We had learned that the Natural History Museum is the most crowded so we decided to get there early and it was a good thing we did.  Our main goal was to see the gem exhibit.  So when the doors opened, we went in and bee lined to the Hope diamond.  Then we went through the gems and rocks exhibit.  We also went through the space portion and saw meteors and moon rocks.  We breezed through the Africa section and breezed over to the butterfly exhibit (much to my disagreement) but we couldn't get a decent timed ticket to go through....thank god!

Necklace of Emeralds

Red Beryl from Utah.  One of Philip's desired finds.

Weird crystal formations.

The Hope Diamond

Me and Nola

The guys by the Tyrannosaurus

A view out the window at the other buildings

Philip and I

After that, we walked over to the American History Museum.  The line was long and it was so hot.  But we made it in and went to find the things on our list.  We saw The Wizard of Oz ruby slippers, Julia Child's kitchen, clothes from the show Soul Train, the First Lady dresses, The Star Spangled Banner flag, and various other interesting things.

Philip melting in the the heat

American History Museum

Dorothy's Ruby Slippers

All in the Family Chairs

The Count Muppet.  Philip used to love his videos

Soul Train outfits

Julia Child's kitchen

Ice Cream break

My Fair Lady outfits

I have to say I was pretty disappointed with the museum though.  I know it has been many years since I was there last but 1/2 of each floor were closed for remodeling and the displayed were brief and seemed disorganized.  When I was there before, there were tons of stuff to see.  Here you had to walk to each individual piece and often they weren't explained to their significance of the item to American History.  But we enjoyed it and ended our visit with ice cream!  I also stopped in the gift shop and got a pair of mercury glass ruby slipper Christmas ornament.  I can't wait to hang them on my tree.

We went back for feet up time.  Then we went to a fantastic family Italian place for dinner that was by the hotel.  We shared appetizers and then fantastic authentic Italian food.  It reminded me of my dining delights in Italy.  We even shared a bottle of wine.  Much to our surprise, they poured Philip a glass too without a blink of and eye.  He was thrilled.  He loves wine.  And he was excited to think people thought he was legal age to drink.  It was Nola and Gregg's 17th Anniversary which was pretty fun to celebrate with them.

My yummy pasta dinner.

The next morning, we met for breakfast again and then bid farewell to Nola and Gregg.  They headed to the train for the ride home.  Philip and I picked up a rental car to head back to Baltimore.

We had so much fun and each of us agreed the trip was fantastic.  We dined using Yelp and had fantastic food.  We had tons of laughs and enjoyed sharing this much anticipated trip together.  It is trips like this that have me looking at maps and deciding which is next.  Nola and Gregg suggested San Francisco.  I am in!