Update: Late May 09
May 22, 2009 at 10:10am
May 21, 2009
I flew to PA for my Monday testing appointments this past Saturday. I was also notified that I was chosen for American Idol finale tickets. Last year I was unable to attend due to a visit w/ my lawyers and I really wanted to find a way to attend.
Sunday, I rested in PA at the hotel w/ my husband, to recover from the flight. Monday morning I reported to Dr. S’s office and met with two Neuro-psychology doctors. The first 1.5 hours I was run through my medical history, how I feel about my situation and then some cognitive testing. It all went great. Then I spent time discussing w/ the Doctor the results and the upcoming Ketamine procedure and Ken got to come in for this part. I then went in the waiting room for about 1.5 hours. I completed a personality type test. By this time, I my pain levels were through the roof and I was on the verge of vomiting, so Ken did all the writing for me (he is the greatest). The Neuro-psych doc said that I was cleared and that I was in normal range for what I was going through. Ken ran and got us lunch from the Quizno’s across the street from the hospital/doc’s office, as soon as we were done with the testing (there were like 300 questions we had to get through). As I was finishing my lunch, the next doctor came to get me for Autonomic Sensory Testing (QST-AST).
The room was like a closet, very small. There was so much equipment in there the doctor had trouble moving it in place at times. I was nervous about how much pain these test would be, but it went fine. First test was hot/cold test. It was done on both of my hands and feet. This devise was about 2x1x1 black box, I think made out of metal. It is put on two places on each extremity. The test was cool. The doc heated and cooled the box and it could instantly turn back to room temperature. On my right hand, one of the cold times, I could not hold back from yelling from the pain. I started to tear up. He said, I was very sensitive to touch and cold, which I already knew. This test was used instead of a nerve biopsy, the doc said it was actually more accurate and told them more information that the biopsy would have. Then we did a laser picture, it is like a thermogram, but it is more accurate from what I understood. I asked for copies of the picture and it will be a few weeks ’til I can get it. After that we did a temp test. He used this handheld thermometer and touched each finger and other parts of my palms and feet to take measurements. They were pretty close in measurements, but with Bodywide RSD that is probably to be expected. I remember when it was just in my arm and the arm was 2-5 degrees colder then the other arm. Next was a vibration test. I thought it was going to hurt. All it initialed was a small black box with a sensor the size of a dime sticking up. I put my index finger and then my pinky on the sensor and he would turn it up. As soon as I felt it, I told him and he cut it off. The final test was a coordination test. You can try it. Take a keyboard and put your thumb on the bottom and your index finger on the space bar. Have someone measure 30 secs while you hit the bar. On my left hand I got just over 70 and my right was around 30. He said that the average “norm” is 150-170. I thought I was doing well, ’til he said that. I asked him to show me what normal would look like and he did the test. I was amazed at how quick he was. Then the testing was over. The doctor said he was done early because I went through the test so fast, due to the sensitivity. I went through the test fast, because as soon as you feel it your measurement is done and you move on.
Ken and I then rested and got prepared to fly out at 4 am, east coast (1 am our time), to fly home to AZ on Tuesday. We landed in AZ around 11 am. From there we decided to fight through the pain and head to CA for American Idol. We had 4 tickets and decided to sell the other two. We found a guy who wanted them and he paid just under $900 for them. The finale was great and worth the extra pain. It was a once in a lifetime event and one of the best memories of life I have. We got great seats, you would not believe the “stars” that were right around us and who I met. To name a few: Janice Dickinson, a lot of the past idols, Heather Locklear (sp?), and Billy Bush. They were on the red carpet and then just went into the event w/ the rest of us. People hung out in the lobby until seating began. In the lobby, I was walking past Billy Bush and said, “hey, Billy Bush, nice to meet you”, he was very approachable and friendly. He shook my left hand, as no one shakes my right. I told him I follow him on tweeter and he said, they took his blackberry so he could not tweet from the show. They did not let phones or cameras in, so we left ours in the car. The guy behind us snuck one in and we noticed him on the phone. We asked him to take a picture of us and e-mail it. So, he did. The show began and it was one surprise after another. On the last commercial break, Ken said lets go meet Paula. We were sitting left center and by the time we got out of our row, Paula had gone backstage so there was no chance. I was very scared of the security also, I did not want to look like a stalker, but I wanted to give her an RSD awareness bracelet from our foundation. Since she was not there, I saw Billy Bush sitting about 8 rows down and got brave and approached him again. I asked if he was going to the after party and he said yes. I told him that I would like him to give Paula the bracelet and that we both have RSD, it did not register w/ him at first so I said “pain condition” and he remembered. I told him I sent a copy of my book to Paula a few weeks ago and that I wanted to give her the RSD awareness bracelet. He seemed impressed that I wrote a book. In the meantime, a security guard came up to me and started to grab me to tell me to go sit down. Ken jumped in and said don’t touch her and the guard turned around. Billy went to reach out and touch me too. Ken put his hand out to keep him from touching me and said, don’t touch her, she has a pain condition. I just kept talking, I knew this was my only chance. They announced 30 secs to air and I said, please tell her this is from Barby (like the doll), please tell her. I thanked him and started to turn back to walk to my seat. Then he said, “you’ve got your wish”! I was so excited, even if she does not contact me, I am happy to know that Billy would pass on my message.
I wish we could of stayed longer but Ken had to go to work at 6 am this morning and we had to get to the airport to head home. It was a good thing, because I was in so much pain that my body was having spasms, cramping and just pure pain. The loudness of the show did not help. I am glad we got to do this and will always remember it!
So all in all, the trip was successful. I do have to get one more cardiac test done here in AZ before I can get scheduled for the Ketamine. My test I had here in AZ before I left, came back with an abnormal finding and I have to now have more testing. I see my pain doc in two weeks and my first fundraiser is next Thursday. I am full of hope for the future and happy I got to have a good experience.
