The Big Apple

New York, New York!

Okay, so it took me a while to decide to try this again, after I started a post two days ago about this trip, finished it this morning, only to lose it completely. So it probably won't include every detail of my trip like I had planned. Needless to say I am still very upset about it.

I guess I'll start with a little list of highlights that happened:

My power port needle set off the security thing in the Colorado Springs airport, and I was patted down by the TSA. That was interesting.

Our flight to Dallas got upgraded to first class, I guess because I was in a wheelchair and they wanted me to be comfortable. Nice people. Thanks, American Airlines.

Landing in New York, we flew over the Statue of Liberty and she looked about an inch tall. Very cool to see such a major landmark!

It took us about 3 hours to find our hotel, and by the time we did, I was miserable and cold and I already wanted to go home. I don't know why they gave us a rental car in New York City.

This was the view from our hotel.

The next morning we had to get up early to get ready for my appointment. We knew we'd have to leave a few hours early if we wanted to get there on time, so we left at 8:30. My appointment was at 11.

Not even five minutes in the cab, and we wreck. An hour and a half later. We get out and find a new cab.

We finally arrive at the medical center, sign in, and then wait another hour for Dr. Hirano. I'm already exhausted and John has to be stressed out as hell.

The appointment pretty much goes like this: We discuss my history, my symptoms, what MNGIE is, etc. Hirano tells us about the trial and then tells me that I wouldn't be eligible due to my diverticulitis. He says there are other options, such as a bone marrow transplant elsewhere, or dialysis, or platelet treatment, and some other things I guess. But by now I'm only half listening and going in and out of attention because he said that all of these could be fatal for me due to my diverticulitis. Tests are done, I'm told my ptosis is evident and I have minor muscle weakness. More testing is done and we don't get back to the hotel until around 4:30.

The view from a bridge at the medical center.

John hadn't eaten a thing all day, so we order pizza and Chinese take out.

Next morning, we get up at 7, pack, and call down for our rental car. We miss our flight because the idiot valet brought us the wrong car and we had to wait for him to bring the right one. On our way to the rental car place, we drove through Times Square and down Broadway, so I got to see all the big billboards and Times Square up close. That was neat. Some pictures:

So. I guess the trip overall sucked, really. The entire time I felt horrible, John and I were both stressed and overwhelmed at the city. And my appointment only made me more upset about my situation. I don't ever want to go back. Maybe if I were actually healthy, and had time and money to spend, New York City would be a fun place. But I'm not, so I have absolutely no interest in making a return visit.

My thoughts on the whole thing? I'm sad. I'm angry at my diverticulitis for keeping me from treatment. The fact that anything could kill me just sucks completely, and it's not fair. I have no one to blame, and that makes me even angrier. I want to blame God, but I don't even feel like he's beside me anymore. I don't think I've ever felt him beside me. I'm afraid of what's to come, but I know that I need to stop living in fear and just accept it all. It's hard to take in, though, and putting so much effort into trying to be calm and collected is the most exhausting thing I've ever done.

I guess it's back to my weekly appointments and nighty nausea.