Saturday, May 31, 2014

2014 Boston's Run To Remember

I am getting my stuff together for tomorrow morning's 5K race, and it dawned on me that I never did a race report from our big weekend last week. I kept meaning to, but it was a hectic week as our kitchen is in the process of being remodeled, we are trying to get ready for a graduation party next weekend, and I was feeling lousy and ended up being treated for a sinus infection. Craziness!

So last weekend was something my husband and I had been looking forward to since last year. I found out about the 2014 Boston's Run To Remember,which is a race held every year in honor of fallen law enforcement officers, when searching for races on the internet. The proceeds from the run go to a charity and this year monies were being given to youth programs in Boston. There were two events, the half-marathon and the 5 miler. We decided to do the 5-miler because at this point, that would be my second longest distance ever run.

Because the event fell the weekend after our anniversary and we live almost two hours away, we decided to reserve a room at the Park Plaza in Boston for the night and go to one of my favorite restaurants, The Barking Crab, for dinner on Saturday, as the race was on Sunday. We left for Boston Saturday morning and stopped at Castle Island in South Boston. It's a neat place. There is a fort and a walking trail (HarborWalk I think it is called), as well as a park. My favorite thing to do there was stand on the edge of the harbor and watch the planes fly in and out of Logan Airport.

We checked into our hotel and decided to walk the 1.8 miles to the Seaport World Trade Center which is where the race expo was being held. I am not sure how much I mention this on my blog, but I am obsessively in love with Boston; always have been and always will be. My dream is to someday rent/own a condo in Bay Village and live there for at least a year. That is why we walked to the World Trade Center, instead of taking the subway. It was a beautiful day and the walk brought us through several different neighborhoods in Boston.

I had not been to the Seaport district before, despite our many trips to the city and I loved it. Anytime you can stand in a city and smell the ocean, it's all good by me! This was our first running/fitness expo and I was pretty psyched for it. There were a lot of different products and I was excited to see my favorite headband company, Bondi Bands, selling their stuff. We also left there with some new chia energy bars and a pair of running sunglasses that I have been looking for. I enjoyed the different displays they had up listing the names of all the fallen officers in the entire state of Massachusetts, as that was the real reason we were there. We also picked up our bib numbers, race packet, and t-shirts. I have heard other people say that as far as running expos go, it wasn't the best, or the biggest, but I have nothing to compare it to, so it was fun for me.

We then made our way next door to the restaurant, Whiskey Priest, and enjoyed a drink on their outside deck, overlooking the harbor. Then we walked back to our hotel. Of course by this point, I realized that my feet hurt from walking about five miles that day, which I said I was NOT going to do and by the time we were ready to leave for dinner at the Barking Crab, I could barely walk. Did I mention that I was supposed to run five miles that next morning?!? So, a cab it was! Dinner was great, as expected, and then back to the hotel we went.

The race was scheduled to start at 7am the next morning. Because of increased security measures and screening due to the Boston Marathon bombing last year, we decided to leave the hotel at 5:30am, which meant a wake-up call for me at 4:30am in order to get all my morning medical stuff done and so I could do some trigger release work on my legs before the race. We took a cab to the World Trade Center because the subway's red line did not run that early on Sundays and we thought it best not to walk there. We did get there much too early (5:45am) and we breezed right through security. I think for next year, getting there for 6-6:15am will suffice, as that was right before the crowds started rolling in.

This was a big race for us, the biggest crowd we have run with: between 12-13,000 runners for both the half and the 5 miler. It was a younger running crowd  in general and a lot of fit looking and thin runners. I mention this because I am still a bit self-conscious about racing as an overweight runner. I definitely do not have a typical runner's body, but lately when I start dwelling on this fact, I just keep reminding myself that I used to be 60 lbs. heavier and because of my illness, could barely leave the house most days, or even the couch. That seems to do the trick!

We started at the back of the pack which honestly ticked off my husband a little bit. He wanted to be more in the middle, because he wanted us to fully experience the crowd and he thought it would be a better experience. But I know that I am a slower runner and it is easier for me mentally to be towards the back so that I don't feel pressured by people constantly passing me. One of my biggest race mistakes has been starting off too fast and then struggling to finish. This had to be my way in order for us to succeed.

Before the gun went off, the National Anthem was sung and Amazing Grace was played on the bagpipes in tribute to those who have died in the line of duty. It was very touching and also amazing because I have never been anywhere with 12,000+ people who have all of a sudden fallen completely silent. It was a moment I won't forget.

We started off on our way and I have to say, it was utterly amazing. You start off on Seaport Blvd. headed towards downtown. I love the Boston skyline and here I was me, Christine Molloy, RUNNING into the Boston skyline!. So surreal. I made sure we started our pace off slow and did my typical run/walk combination. I had stopped using a timer to do run/walk intervals about a month or two ago and instead, started listening to my body. This seems to be working well for me.

The course then took us through Post Office Square, Faneuil Hall, Government Center, Charles Street, Beacon Hill, Boston Common and the Public Gardens, Chinatown, Financial District, and then back to Seaport Blvd. That was for the 5 miler. The half marathon runners separated from us at about Mile 2.5 and headed towards Storrow Drive.

I thoroughly enjoyed this race course. It helped that the weather was cooler and there was no sun, which for me and my autoimmune stuff, is a really good thing. The course was relatively flat, with about four hills. They were decent hills, but very manageable and most importantly, short! It was the coolest thing for me running through these various neighborhoods, while hearing all the spectators cheering us on. My husband ran with me and to be honest, that did help push me harder when all I wanted to do was collapse. Our goal was to finish the five miles in 1:15:00, so one hour and fifteen minutes. In this race my biggest challenge was not my muscles and joints, but rather my breathing. Allergy season has hit me harder this year than like none before, so that was a bit tough, but persevere we did!

This race was also a very well run and organized one, There were a ton of volunteers and plenty of water/Gatorade stops along the route and I was grateful for that. The course was clearly mapped out along the way and there was a ton of encouragement among the runners and spectators.

I started to really struggle around Mile 4, but I knew we were going to be turning the corner back onto Seaport Blvd. very shortly. The crowds grew bigger and I was determined to make sure I walked less and ran more. I knew we were definitely not last as there were quite a few runners behind us and I pushed harder because I always like to finish strong. By this point I was doing some running with my hands lifted up and locked behind my head because my husband said that it would help me to expand my lungs more, which it did. The great thing about races is that I have found that people cheer MORE for those towards the back, because they know it is probably harder for them.

Thank you to every single spectator that cheered for us. It made such a difference!

Then, I saw it.

A medal.

One of the runners who had already finished was wearing a medal!

And then I saw another. I didn't realize that they were giving out finisher medal for this race. My husband and I always joke about how it will take forever for me to earn a finisher medal because in New England, they only seem to give them out for half and full marathons, unless you are a winner. And I knew it was going to take me a while, if ever, to run a half marathon.

As we ran the home stretch, I pushed even harder to earn my medal. We approached the finish line clock and I saw the time....


Oh my God, we were so close to meeting our goal, there was no way we could miss it! So what's a girl to do? Start sprinting of course...all 190 lbs. of me. Sprinting like it was nobody's business and like I was a Kenyan runner. So did we make it?!?

Yes! Right before the clock hit 1:15:00.

Except as has happened before, I forgot one thing...

We had started in the back. Which meant that we started approximately five minutes away from the start line and actually had a better time than 1:15:00!

Official time: 1:09:48. It was the first race I have ever run a pace under a 14-15 minute mile. Race pace was 13:58 minute mile. I placed 255/274 in my age group and 175 people finished after us. A great improvement from my first race (5K) on Jan. 1st when we came in last.

After we crossed the finish line, we walked down the chute towards the water, snacks, and medals. I was bawling like a baby...quite unexpectedly actually. I was trying to make myself stop so all the medics staring at me wouldn't think something was physically wrong, but I just couldn't help it. The only other time I had cried after a race was when I teared up a bit after my very first race Jan. 1st; but nothing like this. I was just so overwhelmed with emotion from the morning.

I pulled it together, but of course started again when the volunteer put the medal around my neck. Yes, it was a finisher medal and not an award medal, but I didn't care. I have been training and working so hard on this. The same woman who two years ago, was partially paralyzed from Guillain-Barre, and the same woman who has fought overwhelming physical obstacles to get to this place and this moment in time. That medal signified the overcoming of every ache, pain, and obstacle I have had in the past several years.

It was my tangible representation of perseverence and courage.
It was my "to hell with you Sjögren's" medal.
Now, it will be my constant visual reminder of exactly what I am capable of.

Saturday, May 10, 2014

2014 Sjögren's Syndrome National Patient Conference: Part Two

There are moments and events in life that are so profound that we cannot help but be forever affected by them. This conference was one of those for me. I had written in my last post about the logistical aspects of the conference and now, I finally get to write about the trip itself and how the overall experience was.

I can sum it up in one word: incredible.

OK, that doesn't even really sum it up, but I thought I would try!

As I mentioned in the previous entry, my husband and I arrived in Chicago a day early so that we could try and get some sightseeing in, as neither one of us had ever been to Chicago before. So we flew in Thursday morning, unpacked, and immediately made our way to the subway stop by the hotel to head into downtown Chicago. We spent some time in Millenium Park as we made our way towards Navy Pier, which I was very excited about. We enjoyed it there, although I think it would have been better if we had not gone during off-season, as a lot of things were closed. But, we rode the giant Ferris wheel, which gave us amazing views,  and then did the one thing I have been talking about since I found out we were going to Chicago...

I saw one of the Great Lakes! As a New England girl who is an ocean and water lover at heart, this was a huge deal for me. Despite the less than stellar weather, we got to take in the views of Lake Michigan, as well as the lighthouse that is situated there. If it was warmer, I could have sat there all day!

Me at Lake Michigan!

We were going to try and eat dinner downtown and go to one of the observation towers, but we had been awake since 4:30am, had changed time zones, and we still had two full conference days ahead of us. So, we headed back to the hotel, via subway, and ate dinner there. Sometimes that's just the breaks when you have a chronic illness; concessions have to be made and you have to ration out your energy.

The next morning, I didn't have to be downstairs at the exhibit hall until about 11:30am, which was good. It gave me time to pull myself together because honestly, I was a wreck. You have to understand that I had been working on Tales From the Dry Side since 2011. I had been communicating with people from the SSF, book contributors, and blog followers for YEARS, but had never met anyone in person. Besides meeting all these people and friends of mine for the first time, I was doing a book signing AND speaking that day as a panelist. I was shaking like a leaf by the time I got downstairs. It felt like this was the culmination of all my hard work and dedication to this project over the past several years.

We went downstairs, met some of the staff from the SSF first, and then my husband and I set up our table. The table was right next to the book sale table, where all the SSF books were being sold. I have to say, I am glad I put as much effort into creating the book table as I did. Besides the book sale table, we were the only non-pharmaceutical table in the exhibit hall.

At 12:30pm, the exhibit area was opened and from there, my weekend was non-stop. I was shocked over how many people came to our table, not just to have their copy of the book signed, but to talk, ask me questions, and share their own stories. I have been doing a lot of this online this whole time; communicating with other patients and sharing stories. But, it was MUCH different doing so in person.

Everything is different in person when you are meeting people face-to-face for the first time. It was so hard for me not to cry when I finally got to meet these online friends and book contributors that I have known for years. These strong and amazing women that share their journeys with me every day, or every week. Really, words can not do it justice. You can tell so much from a person by communicating with them on Facebook, or via e-mail, several times a week, but it is a real treat to get to hear their voice, and notice their mannerisms! A bunch of us went to dinner on Saturday night and it was so funny because they all knew me, and some of them knew each other, but they didn't ALL know each other. Despite this, we got along famously and it was an evening that I know I will never forget. Imagine sitting at a table with four other women (or people) who have your same exact weird, unheard of, illness. But, you know them already, in a way. And, they all get it! That's a level of comfort that can be hard to find in the world.

The two women to the left are Tales from the Dry Side contributors, Sandy and Sandi. The women on the right are long-time blog followers, Vicki and Sarah.

The entire two day conference was non-stop. If I wasn't in a session with all the other attendees, I was out at the book table. It was a little strange because people knew who I was (from the table and the speech I gave as a panelist). People would stop to talk to me in the bathroom, the lobby, even on the shuttle bus back to the airport on Sunday. And, it was great. I felt all this knowledge I had from being a Sjögren's patient all these years was doing some good.

One of the biggest highlights of the weekend for me was on Friday when I spoke on a patient panel about my experience with the illness and about why I wrote the book. I am NOT a good public speaker, although in hindsight, I am a much better one than I ever gave myself credit for. It was needing to get past the fear and anxiety of the task itself. My husband had suggested that I write out some note cards to help prompt myself, but I decided to wing it...the whole thing. I thought that if I thought about it too much, I wouldn't be an effective speaker. I also have a bad habit of looking down, and not up, when I am nervous and speaking in front of a crowd. Now I would HAVE to look up! After all, it was my story...I knew it by heart.

Two blog followers/friends were also asked to speak on the patient panel, which was awesome! This is Heidi.
And this is Lara!

I had about ten minutes to speak and it was truly ten of the most liberating moments of my life. It was me at a podium with about 450-500 people in front of me in a very large ballroom. I looked out at the crowd, and I just spoke. It was very important for me to not only tell my story and speak about the book, but to let people know that they are not alone, that they have to fight to get their medical needs met, and that they can never lose hope. And, that was what I did. Looking back, it is still hard for me to believe that that was me who spoke with such confidence and conviction. Sometimes, we never know what we are truly capable of, until we do it.

Me trying to make a point.

After that panel session, I got inundated at the book signing table, but one woman in particular stood out to me. She was waiting to speak with me and I noticed she was crying, a lot. At first I thought that she was sick or something and then when I went around to the front of the table to see if she was OK, she hugged me and told me she was crying because of how much I inspired her when I spoke. And that I gave her hope.

That happened frequently at the conference; people telling me that either Tales From the Dry Side, my speech, or both, affected them in some profound way. They could identify with the stories from my fellow authors and they found what they were looking for and that was solace and hope. I had a woman tell me that after hearing my story, she was now going to be an Awareness Ambassador for the SSF because she figures that if I could go through what I have been through and then write this book, then she could do her little part for the cause. I heard other spouses telling my husband what a great support he is to me (that still makes me cry when I tell people about it). Finally, him getting the recognition he deserves because let me tell you, it is not easy being the spouse of a person with such a difficult illness.

I was so deeply touch by hearing other's stories. They actually inspired ME. I had a very tough time physically getting through the weekend and hearing how some people struggle even more than I do, and yet still keep a positive attitude, helped fuel me through the whole event.

I guess I would seem up this experience like this: I felt that the entire conference, in some way, validated my struggles. I told my husband this, and I don't think he agrees with me on it. I am not a believer that God made me sick just so that I could help other people. Actually, I don't even believe that God made me sick at all. But having all these experiences with people at the conference confirmed my belief that all the pain, sadness, and struggles I have had with Sjögren's syndrome have served a purpose.

Every negative experience I had with a doctor.
Every misdiagnosis.
Every painful procedure.
Every time a person said to me "you don't look sick."
Every loss I suffered due to this illness whether it be my career or home.

It has served a greater purpose in that I have been able to use it and turn it into something that gives other human beings information, inspiration, and hope. Not everyone gets that sacred opportunity so I thank each and every one of you who I spoke with and gave ME as much back as I have given you.

Be well.

From the airplane on the way home.