Well... that was interesting

Have you ever thought to yourself, "Oh it would be so wonderful to just have a night to myself with nothing to do!"? Well, I'm livin' the dream and honestly, I'm bored out of my mind! The grass is always greener on the other side of the fence, I guess.

The above was a comment I wrote last Wednesday while I was staying at the National Institute of Health Hospital. I literally felt like a caged animal. I tried to blog but it was killing me. Luckily, the hospital had a wonderful library full of all sorts of books, DVD's, and magazines.  I wandered in there and found Fellowship of the Ring (book one of Lord of the Rings). It's one of my favorites and I knew if I didn't get it finished up, it wouldn't be a big deal. Nothing like a trip to Middle Earth to help you forget where you are in real life. I wish I could get my kids to realize how wonderful reading is... but that's a whole 'nother story....

As you have already figured out, last week I flew back to Maryland. I took part in numerous studies while I was back there. The basic underlying objective of the studies was to further understand how the mind and brain work to cause the symptoms of functional movement disorders. I don't know what they found out, but it was an interesting experience.

Me at the National Institute of Health!  Whoohoo!

Me and my magnet. Very uptown! I could wear this to an opera, thump someone over the head AND do some transcranial magnetic stimulation.

Getting the magnet treatment

Tuesday I had a most "electrifying" day.  I was in a little room sitting in a desk-like chair with little electrodes on my right hand... those things they put on you when you have an EKG, but these ones were newborn size. There were four other doctors in there with me, along with my dear hubby. They also outfitted me with a very stylish nylon cap. Unfortunately, it was a bit large and tended to slide around on my little pin head. They ended up taping it up under my chin and then attaching it to my forehead with another piece of medical tape. They needed the cap to hold still so that they would have a marker to line up where they were going to put the big magnet. :)  This magnet looked like a cross between a very large club and those silly opera glasses on the end of a stick. It was circular and had two holes like a pair of eyes. This is what they stuck on the left side of my head. I would instantly know if they lined it up in the right spot because I could feel electricity start on my left temple, go around my eye socket and then off the left side of my nose.  It didn't hurt. When they first hooked me up I asked them if this was going to be like an electric fence kind of shock or what? They assured me it wasn't even going to be close.  For that I was very thankful!  They asked if I had an electric fence for my dog. I said, No, my cows.  One of the doctors asked me if everyone in Idaho had cows. Uh, no....I thought that was a really weird question.


So here I am with a big magnet being held to the side of my head while I can feel different intensities of electricity flowing in my face and my right hand.  At one point, one of the doctors asked me how I felt. I laughed and replied... "Like there's lightening shooting out my nose."  They didn't quite know what to say. They had never heard that comment before.  Well, what did they think I was going to say? "I feel wonderful. Can we keep doing this?"  It was rather comical.  Wayne sent Jesse a text and told her he didn't think the doctors quite knew what to do with me. It's true, I was unlike any other research participant they've had before. :) The were a good bunch of folks though. They came from all over the world...Thailand, the Middle East, Russia and other countries. One thing I noticed while being out there was that the research doctors are a pretty intense bunch. Not much in the way of laughter. When they smiled after I said something it was like it was a new experience for them. They weren't sure if they should do that or not. It was like they hadn't used those muscles in awhile. I figured maybe I'd do my own little experiment while I was out there and test their sense of humor and reaction times.  I'll try and post my findings at a later date. :)

The testing lasted for four hours. No, I wasn't subjected to constant zapping for four hours! The zapping only lasted about 5 - 10 minutes of each hour. It took the computer a long time to process the information it was gathering. It was measuring my nerve pathways from my head to my hand and vis versa, I believe. It was pretty intriguing. It's called Transcranial magnetic stimulation.

I managed to live through my magnetic torture. Wayne and I didn't have to be back at the hospital until 9am the next morning so we walked back to our hotel. It was about a half hour walk, most of which was getting from the main hospital building to the exit gate. That campus is huge! We took a suggestion from our friends who live in the area and rode the metro to DC. (Wayne and I were Metro wizards by the end of the week!)

We went to an area called Chinatown. Which, in my opinion was a bit of a misnomer. The only thing Chinese were the few characters a FedEx sign.  If that doesn't put it into perspective, maybe the fact that we ate at an Irish Pub in Chinatown will. It was really good though. Wayne ordered corned beef and cabbage and I had some yummy fish tacos.  I told Wayne that if I could get corned beef like that, I'd eat it a whole lot more. It was delicious!  We finished off with a most excellent mini rhubarb pie. That was the pinnacle of tastiness!

Arch in Chinatown - Downtown DC

We decided we'd wander 'round town for something to do. We walked all over. We saw where the Verizon Center was where the Wizards play.Rod Stewart was performing there that night. The city was just alive with people. It was a beautiful evening. A bit humid, but it felt so good to be outside. We walked down by the US Naval Museum and were treated with a free concert by the Naval Band. They were playing the National Anthem as we walked up. That was awesome. It meant a little more as I looked up at the historic buildings surrounding us. We were just down the street from the Capitol building. The Naval Cadets were all carrying flags of the states. It was really neat. After the anthem they started playing the "Happy" song by a guy who's name escapes me. It's popular right now. They had a guy singing it. It was really good. I was instantly wishing Justin was with me.  He'd appreciate it. That kid understands music. :)

Looking down Pennsylvania Avenue toward
our Nation's Capitol.

Wayne and I walked on after awhile and took in the sights of downtown Washington DC. We walked clear over to near the White House. It was amazing to me the extreme differences between the social standings of people we saw. One glance you'd see folks eating at high end restaurant with their Gucci stuff and Porsche parked nearby. But in that same glance there was an older gentleman in tattered clothes curled up along the base of a stairwell who looked like he hadn't bathed in a week.  DC is a very interesting place, to say the least. A city of extremes.

Wednesday morning found Wayne and I trekking back to the hospital. We met with the main doctor of the studies. She told me what I would be doing for the next couple days. Wayne went back to the hotel and worked while I had my interview with the psychologist.  The reason for the psychologist was sometimes functional movement disorders are caused by some thing that may have affected us in our past, such as abuse, a traumatic event of some sort, things like that.  The doctor had a stack of paper almost two inches thick that had questions that she needed to ask me. I was in there with her for about an hour. Based on my answers she only had to fill out about an inch worth.  :)  Yay!  I'm not as messed up as I thought.

After my "interview" I was escorted to another area in the hospital to be fitted with a heart monitor. I was to wear it overnight along with keeping a log of my activities. After that I called Wayne to have him meet me for lunch. The NIH is a labyrinth. There are so many hallways connected to other hallways connected to adjacent buildings and what not. It's quite the place. And I only was in one area. There are tons of other buildings dealing with all sorts of specialties of medicine. Wayne and I got lost trying to find our way back to the admissions office so I could get checked in for a couple days. We were lucky and ran into a nice nurse. She must have noticed the look of confusion and wonder on our faces.

My hospital room was on the 7th floor of the main building. It looks just like a hospital room, complete with nurse call button and adjustable bed. Haha! Wayne went back to his hotel room to work so I could have some relaxing time. When he left I was about to go stir crazy. Hence the comment at the beginning of this. I was so full of nervous energy. I was wishing I had some crochet project with me. I can only imagine what my heart monitor was recording. :) Thank goodness for the library! My doctor did give me a stack of questionnaires asking about my childhood, my current life, my mood for the past week, month, year...etc. It was quite the stack of homework!

Wayne came up for dinner.  I ordered him some food along with mine and we had a most "romantic" dinner in my hospital room.  It really was quite peaceful and enjoyable. Afterwards we both sat on my bed and watched a movie on NetFlix. Wayne gave me a kiss goodnight and then he walked back to his hotel. I was hoping that he would see some lightening bugs on his way through the grounds, but he didn't. He did hear some interesting bug noises though. That place comes alive at night!

Thursday morning brought my nurse and saliva tests. I had to suck on this roll of cotton for a minute. I don't know what they were looking for but I had it do it 5 times at different times of the day. It was like sucking on those little cotton things the dentist puts in your mouth when he's working on your teeth.  Not pleasant, just so you know.  They took my blood to look for certain genomes that may be present for folks with this disorder. I would have really liked to get the results from that test, but they told me they weren't going to share that one with me. :(  I was bummed.... come on, they are MY genes.

Wayne and I had lunch together again. That was nice. I really enjoyed having Wayne all to myself. Later that day I was asked to participate in one more study. This one involved being hooked up to some monitors and sitting at a computer. They had little EKG things on my shoulders and neck and also underneath my eyes on both sides. While at the computer I was asked to listen to some phrases and I had to rate what how it made me feel on a scale of 1 to 9. One being very sad and nine being very happy.  This test involved about 3 doctors. They sat there and watched the monitor displaying my movements while I was in my chair with my eyes closed and headphones on.  Some of the phrases were:  You come out of a concert and run into a drunk man. He vomits all over your jacket.      Gee, I can't imagine how that one made me feel. Another was You are driving on the road when a rabbit runs out in front of you. There's nothing you can do to avoid hitting it.  That one made me smile because Joe had tagged a couple of squirrels in a small town in Nebraska. He gunned it to get them. I felt bad, but that phrase made me think of it.  I'm sure my doctor thinks I'm some sort of kill happy nut.  There were numerous other phrases. I had to go through it three times.  I'm not entirely sure what they were trying to find out, but I was happy to help them out.

The hospital let me have a "pass" that night so I could go home with Wayne. We went out and wandered around downtown Bethesda. It was a nice night. Summer rain showers but it didn't cool off too much. We got lost a couple times, but we finally found a spot to eat.

Wayne and I on the roof of the hotel overlooking downtown Bethesda

Friday morning I had to be up at the hospital at 7:30am for my MRI.  This MRI apparently maps the functional areas of your brain. It can detect areas that other MRIs can't.  I don't exactly know how it works, but I believe it's the only one like in the US. I was in the MRI for an hour or so. At one point I had to clear my head of all thoughts while it ran.  That was hard!  Especially when I'm laying in there listening to the magnets fire up before it started it's scan. It sounded so much like the start up to AC/DC's Back In Black. Who knows what they saw on my scan. I wonder what AC/DC looks like on an MRI slice?  :)  It was also really hard NOT to fall asleep with all that constant humming and clunking.  I hope they saw something that interested them.  My doctor did call me the other day to let me know my MRI showed up fine. No abnormalities. She did say I had a couple white spots that were on the MRI that I had done last November. She told me they were inconsequential... kind of like brain freckles.  I was so tickled to know I have brain freckles!  :)

Wayne met up with a friend of ours Friday morning for a tour of the AeroSpace museum out at Dulles Airport. He got to see the Space Shuttle in person along with a bunch of other sort of things. He said it was really neat.  I was glad that he got to go do something fun while I was waiting for my last appointment Friday.

After my MRI I thought I would kill some time and go give blood. What else was I supposed to do for 3 or 4 hours? That turned out to be an adventure. First, just FINDING the blood bank was an epic trek through the bowels of the hospital. Lucky for me I had a guide.  I had no idea how I would get back, but I thought I'd worry about that later.  Once I got there they interviewed me and noticed I had a hospital bracelet on. I told them why I was there. They tried to look up functional movement disorders on their list of ailments. The nurse said, "Hmmm... it's not here."  I replied, "Yeah, I know. It's kind of a new thing." They weren't sure they wanted me to donate because they were afraid I would have some sort of seizure and hurt myself. They finally consented to strapping my arm down so I wouldn't "seize up".  I assured them I wasn't going anywhere.  So what I was hoping to be an hour diversion turned into almost a 3 hour adventure. I guess that worked. I was glad they let me give.

My last appointment was with a psychologist from Georgetown University. Again, this was part of the study to see if maybe something in my past had triggered my movements.  I figured he was about 10 or 15 years older than me. He asked me what I thought of the diagnosis of having a psychogenic movement disorder. I told him it kind of made me feel like it was all in my head.  I knew it wasn't and that I have kind of figured out how to deal with it. I was in there for an hour with him. It wasn't too bad. He suggested maybe exercising more since I seemed to have not been doing that as consistently as I once did. That maybe that would help my stress and therefore help with my movement disorder.  I'm not convinced it's a result of stress, but I thought the idea sounded reasonable.  My favorite moment was at the end when he asked if I had any questions for him.  I asked him if he liked his job.  It kind of threw him for a loop. He asked me why I asked that.  :)  Well.... because it seemed like a good question to ask.  He did tell me he liked his job.  So that's good.  I found out later his conclusion was I don't need any more counselling, I'm just fine.  Duh! :)

At long last I was free!  I felt like a kid on the last day of school.  It was wonderful to be out of there.  I don't know if I learned anything new, but I am hopeful that the doctors found something in the data they gathered from my stay there to help others dealing with this sort of thing.  I know there are a lot more folks worse off than me.  It was kind of fun to be part of something bigger than myself. I hope that it helps.

The rest of the weekend Wayne and I spent with some dear friends, Monte and Carol Beth. We went to Utah State with Monte. He now works at the Washington Office and lives in Falls Church, Virginia. He and his wife had concert tickets that night so Wayne and I decided we'd go tourist-ing. We went to Arlington Cemetery Friday night.  That was amazing! There was such a peacefulness there. It reminded me of the feeling I felt out at Rock Creek in Wyoming where some of the handcart pioneers died on their way to the Salt Lake Valley. It was a very sacred place. It felt a lot like being at the temple. The tears were very close to the surface while I was there. So many rows of those who fought for our country and gave so much. It was a beautiful experience. Wayne and I were able to witness the changing of the guard at the Tomb of the Unknown Soldier. That was amazing!  As we wandered around the grounds I couldn't help but noticing the view from the hill we were on. It looked right down onto the National Mall....right on the White House. It made me wonder if those in Washington ever thought about that. Made me wonder what the soldiers buried there thought of the state of our country. It really hit home when I read excerpts from some of President Kennedy's speeches that surrounded his tomb. It made me think that our leaders in Washington really need to come up there more often and read those statements. I think they have forgotten why they're there.Those statements were powerful and made me reflect on how blessed I am to live in a country such as this.

Looking down at the Pentagon

Arlington

We wandered around historic downtown Alexandria after our visit to Arlington. What a neat spot. We had a fantastic dinner at an Italian place called "Pines of Florence". We thought we'd have an appetizer of calamari and zucchini. Delicious!

We rode the metro back to Falls Church. Wayne and I were becoming quite the pros. We got to our stop and had to walk a mile to our friend's house. It was almost 11pm by the time we got to the house. We weren't sure if we were going to be able to find it since Wayne's phone was dead and mine was on 10%. We were using the Maps app to help guide us to our friend's house. Luckily we found it. We only had one incident where Wayne walked between some sign posts and right into a HUGE spider web. Better him than me!

Saturday was a rainy day, but we didn't mind. We started the day with a delicious breakfast. It's a bonus that our friend's wife is a Nutritionist and a dang good cook. :)  We decided to go to Mt. Vernon and see where George Washington spent his time. Joe told me that this was one of his favorite spots on his trip back East in June.  I could see why.  It was a beautiful spot on the Potomac River. The trees were amazing and the grounds were gorgeous. I loved the old buildings. Definitely a lot of history in that area. Oh if the walls could talk!

Garden at Mt. Vernon. This was the slave quarters and the greenhouse

Lebanese Cedar near Washington's tomb.  Gorgeous tree!

Wayne, Monte and I at Mt. Vernon.

After our wet adventure at Mt. Vernon we jumped on the metro and headed for Rosslyn. From there we walked across the Potomac River into Georgetown. We got to see the Watergate Hotel and the Kennedy Center from there. The buildings in the DC area are just amazing.  So cool and so much history there.

We ate at a most interesting place while we were there. It was an Ethiopian restaurant. Wayne and I figured we were out there, we just as well try something new. This was definitely something different!! We ordered a sampler upon recommendation of our friends. The restaurant didn't have silverware. You get a plate of these gray tortilla/crepe/ace bandage things that you tear off a chunk of and scoop up the food into. The sampler had "piles" of different types of food. There were curry flavored piles, garlic flavored piles, green bean piles, chick pea piles, collard green piles.  It was all very interesting! I was so full!  It was neat to try something different.  You most certainly won't find anything like that in Bear Lake!

Carol Beth and Monte with our "Piles and band-aids"

Wayne showing me how you eat this stuff

After dinner we wandered over to the White House and then over past the Washington Monument and the Forest Service Washington Office. That was fun. It was a beautiful night! The rain had stopped and it was just pleasant! We topped off the night with a bowl of gelato.  I think that is just a fancy name for ice cream, but either way, it was delicious!

Wayne trying out my crab sandwich. I think I need a bigger piece of bread.

Sunday Carol Beth treated us to another amazing breakfast and then we went out to Annapolis, Maryland before we had to catch our flight. What a blue bird day! The sky was the most crisp blue and it looked beautiful against the boats down at the wharf in Chesapeake Bay. We had a fantastic lunch there at a local pub. I ordered the soft-shell crab sandwich. And that was exactly what it was! The entire crab looked like it was just caught and dipped in batter then deep fried and put on a piece of toast. Wasn't sure how to eat it with the legs hanging out the sides. But now I can say I've had one. :) Wayne had a fried oyster sandwich. When in Rome....

State house in Annapolis, Maryland

We had the chance to tour the State Capitol building there. This was the building where George Washington resigned his presidency. It was a beautiful place.  The entire town was just cool with it's cobblestone roads and narrow streets. It was like walking back in time.  I was just waiting to hear the sounds of horses clopping along. So much history! Wayne and I were so excited...(ok, maybe I was the only one excited).  I got to stick my piggies in the Atlantic Ocean. Now that just leaves me with the Gulf of Mexico. :)  

Inside the State house

Looking down the street toward the bay in Annapolis.

We had such an amazing week filled with research, the sites and American History. I had told Wayne once that there was no way I'd be hip on the idea of him doing a detail in DC when the kids graduate.... but I told him while we were out there, that I don't think I'd mind it much at all. I sure as heck wouldn't want to be there more than two or three years! But I think I could handle a stint in DC just as long as we had our house in Bear Lake still. There's just something about this little valley we live in that makes you so glad to come home.  And I am SO VERY glad to be home!!!

My appointment and an afternoon in DC

This was a marathon day, for sure. We got up at 7 which was really like 5am. Got ready and went downstairs to find some breakfast. The buffet was delicious.  Just what we needed to get our day started off right. We hopped on the shuttle to the hospital and ran into our friend from last night, Lehi was his name. It was good to see him. After miscellaneous stops to the different hotels in the area we finally made it to our destination. We had to go through security again.... The man doing the scanning was a jovial Jamaican man. I really enjoyed his company. Just a big teddy bear kind of guy. He was a hoot. He told us that if we come back that we should get one of those NIH security cards so we wouldn't have to get searched every time.  I told him I'd still come in there so I could visit with him. He had the coolest accent. We have met some of the nicest people out here. Everyone we've come into contact with whether at the hospital or out on the street have just been so pleasant and fun to talk to. I have been pleasantly surprised.

I didn't have to wait long for my appointment. I was in a room and talking with a nurse within 5 minutes of being there. They took my vitals, made me walk here, do all sorts of strength tests, cognitive tests....which I embarrassed to say I sucked at. Trying to remember 5 words and then repeat them back at a later time. That was horrible.  I got 3 of the 5. Then she asked me to start at 100 and count back by 7 as far as I could. Oh my, what an epic fail that was. Somehow I came up with 103? Hello?! I can't believe they let me out in public. Needless to say I didn't do so good on that one. Then what killed me was coming up with words that started with F and they couldn't be proper nouns. I came up with flat, flamingo, foot (Wayne gave me a clue by waving his foot), there were some other totally random ones, but I just drew a complete blank. Looking back I had the most opportune time to use the word "farfle"! A true Bear Lake-ism.... dang it!

We were in there with the doctor for about an hour doing these tests and answering questions. She then told me she was going to go discuss her findings with a board of other doctors who deal with movement disorders. It consisted of her boss and others...then she'd come back with me and we'd go up there with the group and they would ask me questions and "study" me. Let me tell ya, THAT was not my favorite.  I felt like an idiot, self conscious,  and way embarrassed. The Big Cheese doctor looked like President Henry B Eyring. He asked me to walk this way, walk that way, how do you feel, do you do this all the time, show me how you can make yourself stop the movements....it went on and on.  It was quite stressful.  After we met with the group, then they sent us away and told us they were going to discuss a little more about me and they would have their answer in a bit. We went back to the waiting room. I just wanted to cry. That stressed me out. It wasn't very long though and the original doctor came in and took us back to our room. She told me that they decided I would be an excellent candidate for their study if I was willing to participate.  She said they agreed with the doc in SLC's diagnosis of a functional movement disorder. They were intrigued with my ability to make it stop when I thought about it hard enough. She felt that there may be an underlying stressor that may have caused this to flair up, such as my step dad's passing last year.....but I'm not convinced on that one. They are going to look at a lot of biological factors that might be the cause such as genetics, chemical stuff, etc.  So it should be interesting.  I'll be coming back out here again in July or August for a few days, this time staying in the hospital itself but will be free to go as I please. They are going to be contacting me the end of the week. So, it wasn't the miracle answer I was looking for, but I think we are on the right track.

After our appointment we decided to eat lunch at the cafeteria.  We got on the elevator with this guy. He was very friendly. He was heading to lunch himself so invited us along to find the good place to eat. Oh my! We went on an adventure trailing all over halls and strange corridors.  I was wishing we had left some bread crumbs so we could find our way back. Lunch was tasty, as promised.  And by some miracle we found our way back to the lobby. But we did get lost trying to find a bathroom. :)

The hospital has a shuttle bus that drives around their HUGE campus.  So we took the bus to the place where we could catch the Metro. It was like a deep dark abyss with an escalator. Rather scary!  So we get down there and try to make sense of the purchasing of the tickets. We asked the attendants for some direction and he explained it to me, but I didn't quite get what he was saying. So we went back over to the payment machine.... about this time Wayne's phone rings. It was our friend, Monte. It was like Divine intervention. Just the person we needed to talk to since he lives out here and knows these things. I know Heavenly Father was watching over us. How else would Monte know we needed him? :) I just love those tender mercies. Anyway, Monte lined us out and we were golden.  We figured out what stop we wanted on the map and jumped on. It was a whole different world. We were brave and jumped on another train and ended up at the Smithsonian stop. As we climbed out of the abyss to the daylight we were greeted with an amazing view. The Smithsonian Museum, the US Capitol, the National Archives, etc.... The Washington Monument stood so high and proud. It was just amazing.

The National Mall was just incredible! I felt so honored and humbled to be able to go see these beautiful structures and pieces of history. The buildings were so huge! We kind of did the Cliff Notes version of the Natural History and American History Museums. We just didn't have enough time. But I'm so glad we got to take a peek. Just amazing! Wayne and I walked from the Smithsonian to the White House, to the Lincoln Memorial to the Washington Monument to the US Capitol. We walked a long, long ways. I am bushed. I guess today was the first day the Washington Memorial was opened back up. I walked up and touched it. Some folks there suggested the best way to see it is to lay on your back with your bum against the Monument and put your feet in the air. So, of course, I did. It felt wonderful and the view was pretty cool. A whole new perspective. We noticed as we were walking around the Mall that in areas it smelled like a dirty horse stall, at times it was quite powerful.  Wayne explained that it was due to all the politicians there in DC....I think he may be on to something since it was the most fragrant over by the White House.

We headed back to our hotel around 8pm. We navigated the metro like we were pros. We even brached out and took a different station down by the US Capitol. We were proud of ourselves.  We got back to Bethesda and were walking back to our hotel looking for a place to eat dinner. Nearby was a place called the Tastee Diner. It was an old converted rail car made into a restaurant.  The food was excellent.  I had 2 pork chops, mashed potatoes, and apple sauce. Wayne had ham, with steamed cabbage, carrots and potatoes.  It was delicious too. They had homemade rolls too. Our waiter was on the spot and did great. It was a neat place with a lot of character and a lot of characters there too. ;) Oh my!

All in all it was just an amazing day. How blessed I am to have such an amazing opportunity as this. What an incredible country we live in!  So glad I was able to see such a historical place. Today will be a day I will cherish always. So glad I got to spend it with my love. I will go to sleep tonight with a smile on my face. Thank you, Heavenly Father!  :) 

The trip to Maryland

Well, I am as far east as I have ever been. Wayne and I started out our Mother's Day Sunday by making breakfast for my mom. It was nice. I was glad I got to be here for that. Mom was super swell and drove Wayne and I to the airport. It was cold and rainy. We got through security and waited for our flight. I was wishing wayne and I could have been at church today to listen to Justin's talk. I tried to send him good vibes. I hope he forgives me for ditching him.

The flight was just over 4 hours. It was pretty uneventful.  It was cloudy until we got over Iowa somewhere.  We hit some pretty good turbulance from the Tstorms. We were flying at 39,000ft and there were clouds still above us. Dandy Tstorms....  Thankfully it didn't last too long.  At long last we flew into Baltimore. It was so cool. We saw the bay, no idea what its called, but I knew it was part of the Atlantic Ocean.  So cool! It really put into perspective the book I'm reading about the American Revolution. I couldn't get over how green it was and how many trees there were. Incredible!  I also thought of my heritage.  Somewhere on my dad's side we're related to Lord Baltimore,  the guy who the city was named after. Pretty dang cool, I thought.

So we land at 6pm but we missed the NIH shuttle. It left at 5:30. The next one was at 8:00pm. We enjoyed a nice seafood dinner. It was very pleasant. It took ua a little while to figure out where the shuttle was supposed to pick us up. We thought it was downstairs then we find out its upstairs. The sun was shining and it was 85. It felt sooooo wonderful since it was only 40 at home when we left!

Eventually the shuttle showed up. The young man driving was very nice.  He did awesome driving us to Bethesda where the National Institute of Health is. He drove like a race car driver.  It was fun! I was glad he was driving as the traffic got a little hairy at times. It took us about 45 minutes to get to the hospital.  As we were driving we looked ahead and right in front of us was the Washington DC temple a brilliant white glowing in the light of dusk. It was amazing. My heart just smiled and I felt such a peace come over me. It was so cool! I tried to take a picture but it was not so grand. That was such a neat thing to see. I had no idea we were so close!

We got dropped off at the front gate. We had to go throgh security, much like the airport security.  Wayne and I were issued passes with our pictures.  We got back on the shuttle and were dropped off at the main doors.  The place was like a morge. There was no one in sight. The foyer of this place was incredible.  I was just impressed with the architecture.  We finally found admissions.  There was another gentleman with us in a wheelchair.  He had came in on the same flight as us. Turns out he was staying at the same hotel as we were. As we got checked in the hospital called the hotel and had a shuttle sent to pick the three of us up. They hurried us through check in so we could catch the shuttle with this guy.  I received my snazzy hospital bracelet and we went out in the front to meet the shuttle. The guy from our flight was there still so we knew we hadn't missed our ride. It was 9pm.

  It was a beautiful night. Reminded me of summers nights. It felt so good. The NIH is like this fortress on a hill. There is a 10 foot rod iron fence clear around this 400 acre campus. We were about 1/8 mile in from the main road. Pretty soon it was 9:15 and no shuttle.  A taxi came by asked if any of us called a taxi...nope, not us. We kept waiting for that shuttle to come through the security gates. The trees lining the road had these really cool LED lights that flashed in a dripping motion. They were about 12 inches in length and they were randomly hung through the branches. They looked like lightning bugs. It was so cool. Finally at 9:30 we look up the number to the hotel and called them. They said they had already came but no one was there.  Yeah, right. So wayne told him where we were. He said he'd meet us there at the front entrance. Time passed, still no shuttle so we decided to go down to the front security gate to wait for the guy. So Wayne and I and our new friend in the wheelchair start walking to the gate. We get there and they are starting to close up for the night. It was 10 pm. As we walked to the iron gate we passed a security guy we asked if we would be able to get through okay. He said yes. We got there only to find you need a magnetic key to pass out of the locked double gate. We didn't have one of those. I ran back and tracked down the security guy. He said you dont have an NIH card?  Uh....no we just got here. :) so he was super nice and let us out. We had to go one by one. He swiped then you'd go through the first gate, then you had to close the door and it would open the next gate. Crazy insane! What sort of place did I volunteer to come to?

Meanwhile, we finally escape the jaws of the NIH campus and we still don't see the hotel shuttle. Pretty soon Wayne's cell rings.... its the driver asking where we are. He said he was there. Hmmmm, don't think so. After 15 minutes and 2 phone calls he FINALLY finds us. Come to find out he went to the Walter Reed Military hospital which was nearby. Oops... Ai yi yi! We thought about just walking but we didn't want to make our new friend go through that. It was only a 1 1/2 miles away. The other thing was we really had no idea where we were going. There are no mountains for landmarks out here. It's crazy! I'm so lost.

By the time we got to the hotel it was 10:30pm. The hotel staff were wonderful. They greeted us with a warm walnut chocolate chip cookie. Delicious!  So now I go back over there tomorrow for my appointment at 9am. This two hour time difference is killing me. I'm not tired yet!  I'm excited to see what tomorrow brings and curious too. Hopefully Wayne and I will have time to go explore tomorrow after my appointment.  We'll get to experience the Metro! ;)

A new door opening

I received a call last Tuesday while I was in Missoula, MT for a work meeting. It was from the National Institute of Health asking if I would still like to participate in their Movement Disorder study.  I was floored.  I had all but given up hope that they'd call. I mean, it's been like five months since the neurologist submitted my name for the study... They wanted me to come May 12th, just 13 days away at the time.  I couldn't believe it...could I make it work? Could Wayne come with me? What were they going to do? Would this help? So many questions...

After a quick call to Wayne I told them that I was available. They asked if I wanted anyone to come with me. Of course I said my husband, please! We fly out this Sunday and will back Tuesday.  Whirlwind trip, for certain.  I admit I am scared to death.  Wayne summed it up best... he'd rather be dropped off in the wilderness with just the clothes on his back then go back East. I totally agree. I just keep telling myself it's going to be an adventure. :)

I was just excited I was "normal" enough to drive myself to Missoula last week!  Now this??! It has been a long time since I drove myself anywhere that sort of distance. I was really worried, but I did fine and didn't seem to have any problems.  I was a bit twitchy in the afternoons and evenings while I was there, but I think I hid it well from my coworkers. All in all my trip last week gave me confidence that I can do it.  I will admit that I was pretty dang worn out when I got back home on Friday night.  I'm sure I over-did it....ok, I KNOW I did. :)   

Now I get to fly somewhere I've never been. SO thankful I won't be alone. I don't think I could do it otherwise. I told Wayne what if they decide I don't fit their requirements for their study? I would feel so guilty having NIH invest in airline and hotel accommodations and not be able to help them.  Wayne, of course, had the perfect reply..."It's science. You're part of a random sample. That's just how science works."  Leave it to my left brain.  :)  

Well, whatever they find I hope it helps....not only me but also helps others that are going through this bizarre disorder.  I'm not sure if they're going to do an MRI with their fancy MRI machine that looks at the functional areas or what.  Guess that's part of the adventure.
I'll try and keep up with the haps over the next couple days on my blog. 
Stay tuned!  :)

Mountains to climb

It's been almost three months to the day since I had that migraine that changed my life. I can't believe it's been that long already. Am I better? No, not exactly.  But I am better than I was. I've learned to take each day as it comes. Some days are better than others, no doubt, but I keep going forward. 

I've learned that you have to keep looking up.....it's got me thinking alot about backpacking lately.

Last summer we hiked into a place called Elbow Lake in the Wind River Range in Wyoming.  It was about 8 - 9 miles from where we had our base camp.  We decided we would do a day hike there and go fishing. It would be a tough and long pull to get there and back in one day, but we decided to go for it. I can't recall what the elevation climb was, but I think the lake was just under 11k. 

Anyway, it was a beautiful hike. There were times when the trail would go up and up in what seemed like forever then it would drop down into a valley only to follow another upward climb. Yeah, it was disheartening at times. The kids felt we'd never get there. And that when and if we did it would be too late to turn back. We'd be stranded for the night.  I kept my eye on the prize. I tried not to focus on the fact that we just climbed a hill only to climb yet another... I kept focused on my destination.

So, I'm sure you're wondering where I'm going with this.... I've been thinking that life is kind of like that. Especially with the challenges that I've been given at the moment. If I focus on each day, yeah, some days are not so great...I'm tired with no energy; I have no strength, I can't walk without shuffling or dragging my right foot...my mouth is in a permanent frown or is stuck wide open..... Or I can't stop tensing every muscle in my body. Those days are my valleys. Those days are when I feel like I can't possibly get through this. BUT if I look up, I can see that mountain that I'm climbing. I can see where I want to be, where I NEED to be. And then I look behind me. I realize how far I have come. How much I have improved.  Look at what I've gone through. I'm not near as bad as I was in November.  I'm getting better. Yeah, there are days like today where I feel like I am taking a step backward and I'm sure there will be more.... but the overall trend is upward. I am climbing that mountain and I AM going to to continue to climb and reach that summit.

I just need to look at the big picture. There is an amazing song by Hilary Weeks called Beautiful Heartbeak. It is one of my favorites. The lyrics have touched me and have helped me to realize how blessed I am. How our trials help us to grow and become stronger.  Here are the lyrics:

I had it all mapped out in front of me,
Knew just where I wanted to go;
But life decided to change my plans,
And I found a mountain in the middle of my road. 

I knew there was no way over it,
So I searched for a way around;
Brokenhearted I started climbin',
And at the top I found... 

Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
 And now that I'm here I would never trade... 

The grace that I feel,
 And the faith that I find;
 Through the bitter-sweet tears,
 And the sleepless nights;
I used to pray he'd take it all away,
But instead it became a beautiful heartbreak. 

I never dreamed my heart would make it,
I thought about turning around;
But heaven has shown me miracles,
I never would have seen from the ground. 

Now I take the rain with the sunshine,
Cause there's one thing that I know;
He picks up the pieces,
Along each broken road. 

Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
 And now that I'm here I would never trade... 

The grace that I feel,
 And the faith that I find;
 Through the bitter-sweet tears,
 And the sleepless nights;
I used to pray he'd take it all away,
But instead it became a beautiful heartbreak. 

This "mountain" in my life has given me a much better view of the world. Of what is important,  of what truly matters. I have been so blessed. This ain't no big deal. I'm going to be just fine no matter what comes my way. I'm on the up and up and when I get to the top it is going to be absolutely amazing.

Nature is in a state of change

One of my Facebook friends posted something that really struck home with me. She said:

"Here's to making 2014 the year we spend outside!"

I couldn't agree more. I've said many times that our youth are losing touch with Nature. They don't get it.... It's not digital and they have to physically move to get there. Granted not all feel that way, but I think it's a higher number than we think. 

I've tried to instill the love of nature in my kids and with those Young Women in our stake in my callings.  I hope I've made a difference.  I love the outdoors. It's an amazing place, whether it's your backyard or out in the middle of nowhere.  Let's get out and take it all in!

The whole reason for my ramblings today?.....because I heard this on Music and the Spoken Word at lunch and thought I would share:

Few things invite reflection like a walk in the woods or a night under the stars.  In these natural settings, we reflect on our origin, our purpose, and our connection with all of creation.  We feel closer to the Divine.  And, like the Psalmist, we rejoice:  “The heavens declare the glory of God; and the firmament sheweth his handy work” (Psalm 19:1).

But then we go back to our homes, offices, and cars—so airtight and climate controlled that we might shut out the sound of a bird, the ripple of a brook, or the mountain breeze.  Or worse yet, maybe we’re so preoccupied with work and things that when we go outside we no longer notice the dew on the grass, the smell of the lilacs, or hear the song of a meadowlark.

Ralph Waldo Emerson believed that even in city streets, nature’s wonders can be appreciated.  He urged all who would be refreshed to pause and appreciate nature’s gifts, wherever they might be found, and cautioned against taking natural wonders for granted.  Emerson wrote:  “If the stars should appear one night in a thousand years, how would men believe and adore; and preserve for many generations the remembrance of the city of God which had been shown!  But every night come out these envoys of beauty, and light the universe with their admonishing smile.”

Each night, each day, has its own offering of beauty.  No matter how many times we’ve seen the stars light up the sky, or the sun settle into the ocean, or felt the wind against our cheeks, or smelled the rain awaken a sun-parched world, we still can be awe inspired. 

Nature is in a state of change; one day—or night—is never just like the next.  And neither are the people who inhabit it.  So before the moment passes, step outside, take a few deep breaths, and let your thoughts turn heavenward.  Watch for the spark of divinity in the world and in the people who surround you.  See them for the “envoys of beauty” they are, and come to know the Creator of heaven and earth.  ( Program #3865  Music and the Spoken Word)

I am not defective!

I've always found that those Sunday mornings when I'm too tired and don't really want to go to church, those are the days that I need to go most. This morning was one such morning.
I woke up with my eyes burning and just plain exhausted, mentally and physically. It would have been so easy to just stay in bed and sleep but I got up. We were about 5 minutes late for church but I made it!

For Sunday school our bishopric prepared a beautiful lesson on adversity and how to deal with it. I felt that it was just for me. I needed to hear this. I needed this boost. Let me explain....

Last night I had been looking at the website the doctor gave me on Functional Neurological Disorders (fndhope.org) and began to feel so sorry for myself. I felt like I was some psycho mess and that everthing I've been going through lately was all in my head. It was so discouraging.  I told Wayne I was sorry I was defective and just cried. He held me and said,  "Oh no, you're not defective. Not even close!" Then he asked me if I thought his mom was defective because she had only one arm. I whole heartedly said No! She is one of the most amazing people I have ever met and an inspiration to me! Then Wayne told me that God puts big hills in front of those He thinks can overcome them. I told him that I supposed that was true, but I was really hoping that God thought I was a wimp. :)  Wayne always knows how to make me smile and look at things from a different angle.

Back to Sunday school... they shared a video of a lady who had been burned on over 90% of her body due to a plane crash. She survived and had struggled with depression and pain, but she overcame her trial. It's on youtube, but here's the link.  My new life  I highly recommend it.
What an amazing story of inspiration!  I felt that I really had no room for complaint after watching that. I can only hope that I can be as resilient. 

In Relief society we discussed one of the conference talks from October by Jeffery R. Holland.  I love that guy. It was about the same topic. In fact, he mentioned that woman from that video. He spoke on How do you best respond when mental or emotional challenges confront you or those you love? I remembered this talk and just loved it. Hearing it again has helped me so much.  It hit very close to home.

Like a broken vessel by Jeffery R Holland

Let me share a few quotes from that talk that touched me and why.

"Though we may feel we are “like a broken vessel,” as the Psalmist says, we must remember, that vessel is in the hands of the divine potter. Broken minds can be healed just the way broken bones and broken hearts are healed.  "

I felt I was defective in some way and I still do a little, but hearing that helps me to realize that I am going through a refining process. I'm not done yet. I am in my maker's hands and when He is done molding me I will be a magnificent and  beautiful piece of art.  We must go through the fire to become what we were meant to be.

"We are infinitely more than our limitations or afflictions."
Our teacher in Relief society held up a banana that was covered with Brown spots and looked a little rough. She said her kids look at bananas like that one and say I'm not eating that it looks terrible.  But when she unpeeled it, it was in perfect condition. A sweet, ripe and tasty treat. We can't judge others or ourselves by what we look like or lack. I need to keep that in mind more.

"So how do you best respond when mental or emotional challenges confront you or those you love? Above all, never lose faith in your Father in Heaven, who loves you more than you can comprehend.....“That love never changes. … It is there for you when you are sad or happy, discouraged or hopeful. God’s love is there for you whether or not you feel you deserve [it]. It is simply always there.” 

I think sometimes I forget this most important fact. That is why I go to church every Sunday, because I need to be reminded.  :)

"Believe in miracles." 
I do :) 

 "Hope is never lost. If those miracles do not come soon or fully or seemingly at all, remember the Savior’s own anguished example: if the bitter cup does not pass, drink it and be strong, trusting in happier days ahead."
We must be strong and know that He is with us, always.

"Patiently enduring some things is part of our mortal education."
This goes back to the refiners fire I talked about. I just need to be patient. Rome wasn't built in a day.... But sometimes it is hard to patiently endure. So I take deep breaths.....lots of deep breaths.

I'm glad I dragged myself out of bed this morning.  I needed these reminders. I needed to hear the things that were shared today. How thankful I am for my faith and my Savior.  I know He lives and hears my prayers. I know He is with me always. I'm so glad I have Wayne in my life to help me through this and to remind me that I am stronger than I think I am.  I'm a lucky wife and mother. :)