Monday, July 13, 2009


The day started early. It was so nice to sleep, virtually uninterrupted. The hotel room stayed cool and dark and I slept sound and deep.
Our first stop was to get some breakfast, that was provided by the hotel. Orange juice and a bagel for me....Mike chose to just have orange juice...since they didn't have anything he liked.
We caught the shuttle from the hotel to NIH....It was a bit confusing, with all the security measures, but we made it.
Mikey needed his diet coke, so we found a vending machine –
We stopped in at the admissions desk, then the voucher desk. Everyone we spoke to, was polite and took the time to explain things.
They checked us checked in, and gave us a folder for our medical records. It was nice to have a copy of our schedule, so we knew what to expect, and what time everything was going to happen.
Blood draws---Mikey joked about his blood coming out carbonated and carmel color, because of all the diet coke he drinks.

I have to add something really our hotel, there is a Diet Coke vending charges $1.75 for each diet coke....Mikey had to go to the hotel desk to tell them that they were OUT of diet coke.....he was sad to hear that they fill it up once a week. OUT OF DIET COKE?!!?!?! NOOOOOOOOOOOOOOOOoooooooooooooooooooooooooooooo!! For a guy who drinks at LEAST 4 a day, this was NOT happy news. Lucky for him, the 7-11 was just one block away!

I met Sarah Coombes, who was just as wonderful in person, as she had been in email, and on the phone. Mike and I went over a brief family history, and talked about any symptoms we've been experiencing. Things like pain, vision problems, depression, head aches etc. There seems to be a connection with Neurofibromatosis and depression....(really?......No Kidding!?)
I also saw a very nice lady, who is a pain specialist. After talking with her....It seems like my back pain has a lot to do with stress. When a person is stressed, or has a very stressful life.....they “tense” up their muscles....and you can do this, and not even be aware of it. Anyway.....she suggested that I look into acupuncture. I have read about the benefits of acupuncture, and I'd love to have this done. She was so friendly, and I appreciate the time she took out of her day to meet with me.
After meeting with the pain specialist, I went back upstairs. Mike had met with Dr Stewart to have his physical exam and some photos of his skin....and now it was MY turn!
This was the exam I was so nervous about.... I don't even let my own husband see me THIS exposed. If I could make just one suggestion to make this a easier process, it would be for the Dr. nix the gown altogether. I would rather of been standing there in my “skivvies”, then to have to deal with how much or how little the gown was covering.
This exam was both uncomfortable and comfortable at the same time. Even an “average” person would feel creepy if every inch of their body looked at with a black light and a magnifying glass. But, I also felt an overwhelming sense that these Drs. Realy truly cared about me. They weren't to clinical, and took the time to explain to me, exactly what they were doing.
Sarah Coombes drew out a family tree, and we dove into the complicated NF web. The “who's who”...and “what's what” of this painful devastating disease. Genes and cells and chromosomes....and what exactly the study that we are doing is all about. Basically....NF is so variable. Even in the same family. Why? Why is that NF gene so large and complicated? Why are there people like Reggie Bibbs.....then people where the NF is near impossible to see. That is the whole point of out visit to NIH. I am so blessed to be a part of this blessed to live in a country, where the specialists, are looking so hard for answers.
Tomorrow, will be another fun filled day! On the agenda....Echocardiograms, MRI's, dental consultation....then the wrap up session for the last 2 days. WHEW.


  1. What a full day. l really hope that it will be worth all the effort to someone someday....Good luck today

  2. That is awesome you are in that study! I think that is the same one that I tried for. Though since I only have one living parent they were unsure. Even more unsure when they found out my only siblings were half, as were my Mom's. LOL. Sounds like a lot of test though. Which after the "lung fibroma" of '07-'08 I think I have had enough for Hope it all went well for you!