NIH Round 3

I am again at NIH and I am excited to again do some blogging about the experience. I see a lot of discussion in the LAM community, but like to have a public forum for it to share as well.

 

National Institute of Health Adventures - Part 1

I got so busy doing photography, I forgot to blog the big adventure. I want to share about the National Institute of Health for anyone interested in it. I have some abdominal complications that make my disease process a bit different, and I don't have a pulmonologist in my town right now (mine moved) and the nearest Lam Clinic is over 300 miles away. So free trip to the DC area sounded like the next best thing. According to Dr. Moss folks have very low risk flying, so if that is your worst fear, he made a statement that no one has had a collapse flying to NIH, which to my knowledge may be true. I normally de-sat at 10,000 feet driving in the mountains, but I did not on the plane. I know everyone of us is different though, but it's worth getting the research data pool larger, so we can help them help us. I am combining these blogs because I didn't take many lammie pictures on this trip yet. I hope that's ok. I will post this a few about the travel & clinical experience, and post another few about access to sightseeing spots.
First step, call Mary and have your med records sent it, yes it's a pain to do it one more time, but this is in exchange for professional advise from the folks researching the disease, and it's free (that doesn't happen to often for us.)  When you get scheduled (Mine took a couple of weeks once they got my records, Mary called) with a time that works for you, Mary has Omega travel contact you to arrange transport. It never fails I miss their call and have to call back. They will do lots to accommodate you as far as if you are coming alone or with family. They book much of the government travel, but they also will book for family members at some of the best rates for the time. They have access to hotel info, they also have numbers for folks who live nearby who have rooms for let for families. they have family friendly places on campus too, just make sure Mary knows what your plans are.  
So when you fly in, they can set you up to fly into one of three airports. There is a link on the NIH website that has the airports and the shuttle times. They send a shuttle for you,

The stops are clearly marked with either NIH or with a number/letter combo at Dulles. It's a hike to get around the airports, I won't lie, but I am stubborn and insisted on doing it myself, but no one has to do that, they are very accommodating to folks who just simply can't walk that far or fast. The shuttles come like every 2 hours or so, so there may be a wait. There are always taxi's waiting, but I do hear from personal experience, they can be costly. There is a major security checkpoint (government grade) coming into the campus the first time.
Another positive point about air travel is that they reimburse you the cost of your checked bag both ways, you have to go downstairs to the gated desk next to admissions to get your monies though. They can also reimburse taxi/shuttle fairs on a case by case basis, especially if their shuttles aren't running, like after hours.

Arrival, Once you have your baggage gone through with a fine tooth comb, reminded me of international travel, and get past security,  head on in to admissions. It's straight back by the big fish tank on the right. After that, they will set you up with an escort your first time to take you everywhere. It's pretty cool if you get lost easily like me or are anxious about new places. One thing for me was a wee bit of culture shock. I am originally from Southern California, so this shouldn't have happened to me, but I have been in a smaller town in Colorado for over 20 years. There are caregivers and staff from all over the world doing their education and work in this facility, add to that the variety of people coming from all over the world to visit with tourism being what it is here. I have not found many that will not simply respond to a welcome smile if you smile at them though. And several have really been so wonderful, but I digress.

Once on the unit, they don't wait long to start getting your pee. If you aren't asked if you have a chance of being pregnant at least 5 times I would not be surprised. But first things first, you must do a pregnancy test before they will do your admission chest x-ray which comes next (even if you are post hysterectomy or post menopausal). If you arrive the day before your tests, they will show you around and tell you where stuff is, then snuggle in for an adventure.

Doesn't really matter what time you get in, they call up the x-ray guy and send you down right away. Not really sure why it's so urgent, I think most of us want to make sure when didn't get a pneumo in flight, but I am sure there is a legitimate reason to start off with this, after and only after this will you get some rest...lol. I discovered this would be the same for the next visit as well. I have not had a uterus for over 7 years, but the same story either way. I am making this a series post, because I don't have all my pictures here on this computer. And I gotta get up and explore tomorrow. Hope this helps out all the newbys, and gives some memories and laughs to the seasoned professionals.

Royal Gorge - September 2011 (catch up)

Just a quick catch up so I can blog about NIH. Finishing up the trip to the Springs - Lammie & I, and our Buddy Heather went on an adventure to the Royal Gorge. I believe I heard them say it is the highest bridge in North America or something like that. They have a full blown adventure park there, worth a trip with the kids if you are taking the scenic route through Colorado sometime. Here's a bit of Lammie's pics.

 This is from our Journey to the bottom of the Gorge.

 View from the top, just about to cross the nail biting Cable tram across the Gorge

The old fashion water clock at the entrance.

7 Falls...Milestone Stairs! September 23, 2011

I have climbed 2 sets of stairs in my lifetime that were exhausting. The first was at Morrow Point near Gunnison, I couldn't tell you where it was if I had to, but this of course was before my LAM diagnosis. After investing in my new camera, I find myself going above and beyond to get "that" photo. This time I was actually drawn up the stairs, by not just my love of heights (and Heather's fear). She never said it, but she didn't come up with me. The cool part is that she did photograph me, but I forgot to ask for the photo. My primary goal was to take my LAMmie up the stairs and photograph it at the top, oh and secondarily get a spectacular view of the waterfalls. While this photograph does not feature Lammie, I felt it was important for a visible reason why, paying entry and shooting from this wonderful platform with elevator accessibility was not where I wanted to limit myself. this staircase stood there and beckoned me to try. I must add the disclaimer that I did not climb the entire staircase. But I want you to take note, about midway through the lower half of the staircase, there is a blue speck....that my friends is a person.

Garden of the Gods September 23, 2011

Garden of the Gods is by far the best for handicap accessibility, as well as awesome for rappelling, which LAMmie didn't partake in. It is also a very short drive. I had thought for a while that the main roads in Canyonlands made the park smaller, but Garden of the Gods is only around a 15-20 min. drive straight through. It has many areas to stop, and enjoy just a short trip from town, which is good and bad. If you live there, it's close enough to head there during a lunch break, if you aren't from there, there are local's hurrying to get back to work after a quick lunch break. That's only an assumption, since I would do it, if I lived there, and it seemed so many people were hurrying through it. We didn't stop too many times, but it was beautiful!

 

The good news is that LAMmie wasn't mauled by a bear. But the sights were certainly breathtaking.

September 22, 2011 Road Trip to Colorado Springs

For September LAMmie made some great strides. For our traveling excitement, we were invited to Colorado Spring's, more specifically Manitoux Springs to join friends & photograph a wedding. There were several Lamworthy events, that netting photographing.
For starters, this starts with scaling the Rocky Mountains, as with most adventures East. Which is a feat all on it's own for a LAM. Folks without LAM are often treated to respiratory distress when met with a 10,000 foot summit, but for LAMmies, it's an extra challenge. Again I point out that I am blessed to still be able to cross them, as well as stop at the top for a picture our two.

After visiting the Big Horn Sheep Area, only to ask the same question, Where are the Sheep.... Not a one in sight.

 

Once in Manitou, we decided to stop in an ask about the sights. The ladies here ant the Chamber made their suggestions to not miss the 7-Falls, Garden of the Gods and the Royal Gorge. Before tackling these, it was time to hit the hotel, and it's hot tub. With our luck, our hotel also had a full waterslide! Can't pass that up.

Lam Luncheon Denver Roadtrip

August - 2011 - My first Regional LAM Luncheon. After flying to Cinci and meeting & spending time with my Colorado LAM ladies, I had been looking forward to keeping in touch. From where I live near Utah, that meant driving over 200 miles over the Rocky Mountains to get to visit. So I invited my mom to drive like we used to for a little road trip along I-70 to see the girls.

 

I loved this sign, I had to take a photo with LAMmie waiting outside. These were from the rest area in Glenwood Canyon. It's pretty much where the Mountain Terrain starts on the way to Denver. As you can See from the Photo below.

 Once through Glenwood Canyon, it's Mountain Pass after Mountain Pass. It's the best highway view of the Rocky Mountains in my opinion. It tops out around 11,200 feet just before the Eisenhour/Johnson Tunnel. I checked my O2 and I was creeping down into the low 90's but doing well. The way home sat's fell into the 80's when trying to run around and take pictures. But we made it back down in one piece.

 Once we arrived, it was like we were home again, among friends. I found out so much about my Colorado and Wyoming LAM sisters. They are nothing short of amazing. Runners and Skiers, some of these ladies wore me out just hearing what they are accomplishing in the face of their diagnosis. Quite motivational and so worth the drive.

 

After Lunch we were treated like royalty. First a hike up on Davidson Mesa, a much smaller Mesa compared to ours, yet a breathtakingly beautiful view. 

 

Just a short hike down the trail led us to a magnificent view of the Rocky Mountain Range and the Town of Boulder Colorado. 

After our hike, we were introduced to the beautiful town of Louiseville, Colorado. Recently voted one of the safest towns to live, in the U.S. It was a great small town atmosphere, we were treated to some great town culture and view of the downtown area. Karyn was an excellent host. Here's hoping to get to visit again soon.

 On our way back we stopped near the Summit, near Dillon Lake, We had to wait in line for our photo opportunity here, as there were two garden gnomes in our spot, then after we were done, and alien and a rubber ducky were waiting for their shot in front of this scenic vista. They however didn't have time for a group photo.

 Then it was back to Glenwood for a dip in the Hot Springs Pool, I didn't tackle the waterslide this time, but did take a jump off the diving board. Then of course, the highlight of any trip to Glenwood, the Slurpee Stop at 7-11.

  

 

Then it was back Home Sweet Home, well rested after a short vacation weekend. 

Thanks to all the Ladies who made this trip so much fun. Thanks to Mom for Spending the weekend with me, and to Mrs Karyn and her family for making us feel so welcome. As well as Mrs. Ann for hosting the luncheon at her place. Can't wait to get another opportunity to visit again.