2019 Races

New York City Marathon - New York, NY:  11/3/19
For starters, I actually slept pretty well Saturday night. We got up at 3am, I did my nebulizers and then

we headed out around 4:15 to get our bus, which left at 5:15.

I’m not sure what time we arrived in the start village but we were probably there for about 3 hours.
I was in the athletes with disabilities tent, and it is truly inspiring to see all these people overcoming
some form of difficulty to complete this race.

One of the things I noted that felt so different from 2017 was my energy level before we started.
I remember sitting in a chair in 2017 and feeling like I didn’t have the energy to even eat breakfast.
I knew then that it wasn’t a good sign. This year I felt rested and energized.

                                                                                                My plan to use one of my batteries before the race
                                                                                                worked out great. I changed it out about 15 minutes
                                                                                                before heading to the start. My first race battery lasted
                                                                                                to about mile 9. I think the 2nd one took me into  mile 19. The 3rd and 4th batteries were smaller and                                                                                                  lasted half as long, so I needed 2 more battery changes to get me across the finish line.

                                                                                                My wave started at 8:52. There weren’t a lot of us in this first wave. It is mostly for hand cycles and
                                                                                                those disabled athletes who are slower.

                                                                                                What was pretty cool is that we got to see the elite wheel chairs at their start, the elite women fly by
                                                                                                before we were off the bridge, and the elite men went by somewhere between miles 3 and 4.

                                                                                                The first ten or so miles went pretty quickly. I was a little concerned I was going too fast. The bridges
                                                                                                and hills were not an issue. Total elevation gain during the marathon was 553 feet. My 23 mile training
                                                                                                day 4 weeks before was 1283 feet.

I’m not sure what mile it was, probably between 6-9, I heard my name and it was a PCD (Primary Ciliary Dyskinesia) mom, Serena. We’ve known each other through Facebook – this was our first in person meeting. She was at another spot, up in the double digits and then I think she joined us somewhere in mile 22, and walked with us to finish line.





















We had a planned stop at the medical tent at mile 13, right at the start of the Pulaski Bridge. This was to pick up the 2 single batteries and drop off the used double battery. I also took a few minutes to text a friend who was going to try and pick up the used battery before the medical tent packed up.
I did make a short stop on the Queensboro Bridge. My right shoulder was really hurting from carrying the oxygen concentrator, so I took it off and Ed rubbed my shoulder for a minute or two. I was able to step off to the side and have a ledge to lean on.

As I approached the mile 18 marker, which is where I’d stopped in 2017, I saw a new friend (we met
Friday), Rebecca, cheering and went over to get a hug and meet her husband. It was so cool to see her
there. She had no idea of the significance of that intersection. It was another example of how different
this race was. We were still ahead of the course shut down and I didn’t have any concerns about how
much longer we’d be out there. In 2017 I had stood at that intersection with almost no one around.
They were packing everything up and I knew if I continued on I wouldn’t have any course support.

As we made our final cross back into Manhattan the sun was starting to set. I’d dressed in layers so I
was comfortable for most of the race. Ed however hadn’t worn enough layers or heavy layers, so he
was chilly. Luckily he wore the Dunkin’ Donuts hat they were giving out in the start village. Somewhere
around mile 21 there was a medical tent handing out mylar sheets. They really made a difference.

The last 2 miles I was tightening up, probably because of the cold. At one point I just sat for a minute.
Ed later said he was concerned I was debating whether to continue or not. I assured him that was
never an issue. I didn’t care about my finish time. I just cared about the finish line. I just needed to sit
for a minute.

I think my fueling was pretty good for the first 2/3 of the race. The last 6 miles or so I had to push myself to have some chews and to drink some tailwind. I thought about one of the daily inspirations I hadn’t posted yet that says, “Ask yourself, ‘Can I give more?’ The answer is usually ‘Yes.’” – Paul Tergat. I had no doubt about crossing the finish line. My doubts were about getting from the finish line back to the hotel.

                                                                                                As we were walking along Central Park South about ¾ of a mile from the finish line, I heard my name.
                                                                                                It was a friend from high school, Jennifer. We lived on the same street. Her house had MTV when we                                                                                                      were growing up and I remember being over there for hours watching and practicing Michael
                                                                                                Jackson’s Thriller.

                                                                                                Even though I’d made it into the marathon through the lottery, I signed up to fundraise with National
                                                                                                Organization for Rare Disorders, Inc. (NORD)’s Running for Rare team. They had been cheering at mile
                                                                                                23, but by the time Ed and I got there the cheering section was long gone. One of the organizers,
                                                                                                Jamie, did catch up with up us shortly before we turned back into the park. Rebecca from Women of
                                                                                                the Mountain joined us too. So we had quite the entourage as we made it into the park and toward
                                                                                                the finish line.

                                                                                                Ed participated as my guide. As such, the rules stipulated there could be no prolonged touching and
                                                                                                that he had to let me cross the finish line first. He got a medal, but he doesn’t get an official finish
                                                                                                time. He is OK with no finish time because he did my race, not his own.

                                                                                                We crossed the finish line hand in hand.

My finish time was 9:50:46. I was 53,512 out of 53,518 finishers. My per mile pace was 22:32, but that includes about 30 minutes of battery related time. I am ecstatic about finishing. People have asked if I’ll do another marathon. Absolutely. I’ll most likely wait until after my double lung transplant though. Training just took too much time and entire Sundays. I’ll be sticking to half marathons and shorter for now.

As for getting back to the hotel, it wasn’t too far from the finish line, but I did not want to walk any further than necessary. We headed toward the athletes with disabilities tent and ran into a friend from Canada, Lynn, who had come down to cheer us on. When we got to the tent my checked bag had been taken down to the finish line. I sat down and waited for them to go get the bag and bring it back. After probably 20 minutes or so, we finally continued up past the police barriers. There were those bicycle taxis right there so we hoped in one and were at our hotel in no time and without an extra half mile of walking with several bags.
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Disco 5K - Houston, TX:  5/19/19
​I was in Texas for the first time for the American Thoracic Society conference so of course I had to see what races were going on nearby on Sunday (my only free morning).  I found a disco themed 5K that was only 2 or so miles from the hotel.  I tried going with the disco theme by getting disco ball earrings and some funky shorts.  I wore the wrist sweatbands.  There were a lot of great costumes and I never thought of gold lame.  Next time. 


There was supposed to be a PCD contingent, all wearing our new Running On Air shirts.  Unfortnately, due to various medical emergencies, three out of the five of us couldn't do it.

The race was pretty much all out in the sun.  It definitely got warm by the end of the race. Carey, who did the half marathon in Georgia with me in December 2015 kept me company.

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