Day 3: Wilmington to Ellicott City

Route: Wilmington, DE to Ellicott City, MD

Mileage: 87 miles

We had a great night's sleep last night, and woke up to our alarm saying it was time to get going.  Jen had some yogurt and berries before heading out, as Harry and Tammy raved about their yogurt they had.  It was really that good (Greek Gods, by the way, honey salted caramel).  

Our first stop of the day was only 5 miles down the road, where three families with juvenile arthritis came out to meet us.  The Feeley and Gonzalez families live close by in Delaware, but the Reeds drove 2.5 hours to come meet with us!  I couldn't believe it, what rockstars!  It was such a lovely breakfast and a great occasion for multiple families to get to meet and share stories.  We were there for almost 2 hours.  Even Keegan said later in the day how moved he was by all over their stories and how shocked he was to hear that so many of them had faced physicians and policy makers continually tell them or their children that nothing was wrong and it was all in their head or no real disability existed.  It was truly horrifying to hear.  

After we left them, we headed to the big challenge of the day: getting across the Hatem Bridge.  Tammy had called her dad, who called in a favor to have the Maryland Transportation Authority Police help us across.  They said to meet them at the Royal Farms gas station.  Originally we thought we were going to find them in some official office, but nope, we were to wait for them at the gas station.  We had given the time estimate of arriving between 12-12:30, but since we got a later start than we had imagined after breakfast, we didn't think we'd make that.  But it turns out we are super speedy and were there by 12:15.  We called Tammy because we were confused and there was no sign of help.  But as if by command, at 12:30 exactly, an officer pulled up in his car.  Just one.  In a small SUV.  We were curious how we would get the tandem in there and he said, oh no, we are riding across and he will escort us from behind to protect our safe passage.  YES!!!  I had hoped we could ride across with an escort.  We started to go, but Jen asked if we could all take a photo because it was part of our journey.  She told him all about juvenile arthritis and why we were doing the ride.  He said meet him a block up where there was a place to pull off and we'd do pictures there.  Umm...ok.  Well, he did that so that his buddy could take our photos!  How awesome!  Then we set off across the bridge, beaming from our cool experience.

After that, we decided to stop half way before our destination to find some Maryland crabs.  We did and they were delicious, especially the "Crab Fluff"! 

How would I describe today's ride?  HILLS.  It was constant ups and downs.  But we managed.  And actually, my joints hung in there quite nicely.  Towards the end, we just kept going up, a low grade, but still, up and up we went.  And then, Google Maps told us to turn off the main road and we immediately dove down hill into a foresty region you would never guess existed right outside of Baltimore.  We zoomed down and thought, "what a great way to end the day!" But then we got to the bottom...and still had 5 or so miles left...which meant--we had to go back up.  So we began to climb, and climb, and climb some more.  Check out the elevation tracker and see how we ended our ride.  Sheesh!

But we made it!  And we arrived to our very first greeting party!  Michael Ortman, the chair of the Arthritis Foundation Board of Directors, was outside his home clapping and cheering for us as we approached.  And after showering and throwing laundry in, we had a wonderful dinner with Mike, Kate and Daniel--who was diagnosed with ankylosing spondylitis as a child.  Daniel wisely tried to go rest earlier, as his body told him it was enough.  It made me happy to see someone who knew their body and limits and was able to advocate for himself and what his needs are--I can learn a lot from that!  And after he had rested, he came back out :) We had a great convo and the food was delicious--when the fruit salad came out I was so happy.  

We finally all stowed away to bed.  Keegan was trying to work but I kept looking over and his eyes were shutting.  He's asleep now.  I will do the same!  Need to get up and finish some reports I hadn't been able to do before we left and thought I would have time to do over the weekend.  Silly me!  

Day 2: Trenton, NJ to WIlmington, DE

Route: Trenton, NJ to Wilmington, DE
Mileage: 71 miles

Today got off to a great start!  My friend, Christine, drove an hour down to Trenton in order to take Keegan, Alyssa and me out to breakfast.  How awesome is that! She wanted to be part of this crazy journey and I'm so glad to have had the chance to see her.  We had breakfast early because Alyssa had to head to work.  This was probably one of our shortest mileage days, so we were pretty lax on time.  We had a lovely stay with the Kondash family in Trenton, but it was time to head out.

We set out towards Philadelphia and went through NJ, as opposed to through PA to get there.  We ran into one physical road block as we took this route.  The road said it was closed, but it looked like a perfectly nice road on the other side.  We checked Google maps to see if there was an easy detour, not wanting to be surprised by a dirt road a ways down.  But there was no other good option, so we decided to go around the road block.  I like to think it is somewhat symbolic of living with JA.  You will hit many road blocks along the way.  Sometimes, you do need to back off and recalculate.  Other times you just need someone to help you out in order to get to the other side.  So Keegan brought the bike around a few obstacles as Jen scouted to see if the road was open ahead.  Looked good enough to give it a go, and we did! Not more than 1/2 mile down the road, there were houses all over.  Since we figured they needed to get in and out of their homes, we must be golden and sure enough had no issues with the road.  

We saw lots of animals today, including horses, several goats, 3 marmots of some sort, groundhogs maybe, 1 rabbit and 4 vultures.  

We had a nice ride through NJ, but when we hit the bridge to get into Philadelphia, we started to run into problems.  First, we weren't sure if we could go onto the bridge at all, but Google told us too.  So we asked the toll operator.  She said she didn't know.  We tried to follow Google's directions but there was construction every way it rerouted us.  We ended up going under the bridge to get on the path on the other side.  Of course, to get to the path was a staircase.  So with Jen in the front and Keegan at the back, we carried the bike up 3 flights of stairs.  It was hard on Jen's elbows.  But then we were off!  

While on the bridge, it started raining.  We got to the other side and stopped to put on rain gear, and use that as an opportunity to find a place to eat in hopes of waiting out the rain. Keegan demanded Philly cheesesteak, so we looked up a place and headed over.  However as we approached, we realized we were headed straight into the parade.  We dismounted and walked the last few blocks to the restaurant.  Because everywhere was so packed with the parade, we ended up eating outside despite the rain.  

We then headed over to see the Liberty Bell, but the line was pretty long and we couldn't take our bike in anyways, so where's the fun in that?  So we took a picture in front of Independence Hall and were then on our merry way.  

The rain had mostly let up so we went on.  The rest of the ride was relatively uneventful.  We rode past UPenn and through the surrounding areas and hospitals.  We were on a trail for awhile that kept saying it was headed to Swarthmore. We didn't even know when we hit Delaware, but we were happy when we angled down to the Delaware River. But Delaware was our 4th state of the trip, woo!  We were at our very last turn of the whole trip when we got stuck at a draw bridge, dang!  It was reminiscent of our previous Florida trip.  But we finally arrived in Wilmington at Tammy and Harry's place!  We left our bike in a room in their building they said was safe.  We showered and when we got out Harry had made brownies!  Yum!! 

We spent some time trying to figure out a little glitch in our route tomorrow.  There is a greenway or suggested bike route, the East Coast Greenway, down the entire East Coast...but every now and then it gets derailed.  There is a bridge once we hit Maryland, the Hatem Bridge over the Susquehanna River, that does not allow bicycles.  This is ridiculous!  And in order to circumnavigate it, Google tells you to go up and cross over at a dam, which Tammy said is a skinny one lane road and also bad for bikes.  This would take us 20 miles out of the way.  It's crazy that you can't ride your bike across, and I had seen that the East Coast Greenway didn't reroute this way, so we dived deeper into the issue and its solution.  The ECG directions are hilarious--it says to flag down a bus and have it take you across!  

The ridiculous detour you have to take because you can't cross the bridge right there at Havre De Grace

Not knowing what this even meant, we looked it up, called several official numbers to inquire about taking a bus across, Keegan even spoke to the police who confirmed we could not bike over.  Tammy put out a call on social media, as did Keegan, to see if anyone had a pickup truck to escort us across, as the buses aren't running tomorrow.  But then Tammy called in a favor to her dad, who pulled some strings, and the Transportation Authority Police are supposedly going to help us across tomorrow--I hope we get a police escort!  They were told this is for charity, hope we can make it happen!

After that was somewhat settled, we headed to dinner--Not Your Average Joe's! Which we have back in Jen's hometown.  We filled up on good protein and carbs, and had a great convo throughout dinner.  Harry was pumped about the fireworks, but when we got back we were too pooped.  So we retired to do things like write this blog so we could get to sleep.  As it is I am doing it with my left eye closed because that eye gets exceptionally dry, thanks Sjogren's syndrome!  But now it's time for bed, as tomorrow is sure to be another day of adventure! But all in all, Jen's body is hoping up well.  Some issues with her left knee, but it's hanging it.  Here's to another day!

Our final route for today looked like this...

Day 1: NYC to Trenton #NYC2FL

Route: Queens, NY to Trenton, NJ
Mileage: 78 miles

Well today was our first day and it was wonderful.  It's almost midnight and I'm super sleepy so I will keep this short and full of pictures.  We got off to a late start just cleaning up and getting out--hard to say goodbye to our kitty!  We finally left around 10:45.  Our bike was fully loaded, MUCH heavier than we have ever loaded the tandem, we were a little worried it was too much! It took Keegan a minute to adjust to the load but we were off and running.  We headed over the Queensboro Bridge and crossed through Manhattan.



 

 We hit a few sights, like Radio City Music Hall and the Freedom Tower as we rode to the ferry to get over to NJ.  After we made our first state change, we headed through a busy part of NJ with bridges and lots of interstate intersections.  It was not the easiest ride through the area and some of the greenway paths were so narrow we almost spilled over into the fence keeping us separate.  But after we got out of that section it all got much nicer.  

Radio City Music Hall

Radio City Selfie

West side bike path

Freedom Tower

Manhattan side of the ferry

We have arrived in NJ!

East Coast Greenway--Isn't it nice they have our same colors?

We met up with Julissa and Kayla in Newark for lunch.  Kayla turns 13 on Monday and was diagnosed with juvenile arthritis a few years ago.  She will spend her 13th birthday at doctors appointments--that's just not right!  We ate at Dario's Restaurant in Newark, where the lovely man serving us asked Keegan, "are you guys on a successful bike riding team?" Keegan told him about the ride, and when he learned I had juvenile arthritis, he told us that his mother has bad arthritis in her hands.  She was working at the cashier at the time and he said that was very difficult for her.  He said he would follow along our ride!  I gave him my first sticker I made!  And of course, Kayla and Julissa got them too!  We took some photos and then got back on the road about 1:45.  We had 60 more miles to go!

The route Google took us on was nice.  Mostly back roads, and some bike paths.  There were certain stretches of bike paths we couldn't believe existed.  Including an elevated bike path and a 16 mile trail, the Delaware and Rariton Canal State Trail.  It was dirt, which wasn't as bad as we thought it might be, until the last mile when we got our first flat tire.  That section of our ride was a totally separate bike path down a narrow stretch of land, which was neat!

We stopped for a break after about 40 miles of straight riding.  We also ended up stopping about 12 miles out from our destination for water because we were out and thirsty! We made it to our final stop around 6:45, which in total took us 8 hours a few stops.  We tracked our route along the way, although it cut off for a bit a few times, so the mileage is probably slightly lower than the actual route.  And we saw 3 rabbits this ride!

We were greeted by the Kondash family, who were so kind and generous to take us in for the night.  It was our first time meeting, but they have been very active with the Arthritis Foundation and when they heard we needed a place in the area to stay, they volunteered!  Alyssa, who just finished her freshman year of college, has juvenile arthritis, and we compared notes about our conditions, treatments, experiences with friends and at arthritis camps and her goal of somehow working in the healthcare field because of her experiences.  Alyssa noted that she wants to get more involved with advocacy because she sees now that her voice and sharing her story matters.  Nothing could make me happier to year--YES!!!

Eric cooked us a delicious and hearty meal and we thoroughly enjoyed chatting with Anne Marie and Alyssa's sweet and energetic sister Olivia.  What a great family and a perfect way to start off the trip!  I hope our paths cross again soon!  

It's Go Time!

It's that time, folks!!  The night before the trip begins.  I'm going to make this short and sweet because we need as much rest as we can get.  Well, I'll speak for myself--Miss Juvenile Arthritis needs as much sleep as she can get.  

It's been busy but relatively low stress.  Just takin' care of business (cue the music...).  The Arthritis Foundation, NYC office gave me a lovely send off complete with balloons!  I felt like so Sex and the City-like.  

Then it was pretty much planning/cleaning/packing mode.  Keegan and I divided and conquered and are actually going to bed with almost everything done. We just need to put our pile of clothes and such into the panniers and duffle bag tomorrow, and that's pretty much it.  Right now all our panniers have in them is a bottom layer of snacks.  I am the ergonomist for Facebook, Twitter, Google and Bloomberg--all of which have very good snack.  To these companies, I thank you for your "donation" to our energy supply :)


Tomorrow we aim to leave probably around 9am.  We don't really feel in a rush, so will try to sleep in and get going when we do.  There's a possiblity the major news stations here may want to pick up the story, and it's more likely that would be around 9:30/10ish, so we don't want to be too far out of town by then :)

Our first stop tomorrow will be Newark, NJ, where we will be meeting at least one family whose daughter has JA.  From there we will bike until we stop for lunch, and then continue onto our first official stop in Trenton, NJ, where we will be staying with a lovely family who have had many years of experience with the disease as the daughter with JA is now in college.  I love me some young adults with arthritis!!


I will leave you all with the image of what we have packed for our 3 weeks journey.  All this will be bagged up and strapped to bike!  Here's hopping it doesn't make it too heavy!  That's all from NYC!

Getting Inside Our Heads

One of my biggest fears about this trip is that it will skew people's impression of JA the other direction--how bad can JA be if someone with it can bike 1400 miles?  I've had several people assume I must be in remission to do this, which is also not the case.  So I'm here to clear a few things up.  

I'm not as cavalier as perhaps it comes off.  I have constant worries racing through my head.  So much so that on our last training ride I noted to Keegan how lovely it must be to ride with a clear mind, not recalculating and recalibrating every time you feel a twinge in your knee or your Achilles start to constrict.  So often we see people post about the incredible things they do, and we have, what has be termed, Facebook Envy.  It's so easy to see something on social media and think that person has it so good, but I promise to be totally honest on this trip.  If I'm going to build awareness of the disease and what it's like to live with it, both in mind and body, I need to keep it real!

So I have compiled a list of my concerns about the trip.  Although I can be present most of the time, a flash of pain can make all of these worries come flooding back in.

1. Can my left knee handle it?
2. Will I overcompensate with my right leg and aggravate my enthesitis-related Achilles into a tizzy?
3. What if the neuropathy in my toes gets too painful from so much pressure on my feet?
4. Can my elbows withstand the pressure?
5. Will my eyes get too dry from riding?
6. What if it rains and I sit in wet shorts and get a rash? 
7. What if it rains the whole way and my joints hurt because of it?
8. Do I have enough sunscreen on?
9. Can I withstand the extreme heat? 
10. Will I get a rash from the sun?
11. Will my skin discolor from hyperpigmentation?
12. Will taking my methotrexate make me too tired to bike once a week when I take it?
13. Will I get any nether-region-related infections from sitting on the bike and sweating for so long?
14. What if I need medications like antibiotics on the way?
15. What if I need antibiotics but taking them only creates other problems?
16. What if my wisdom tooth that I have put off dealing with and is now coming in in full force needs to be dealt with on the trip?
17. Will I carry my weight on this trip?
18. Will I exhaust Keegan if I need to pull back? 
19. Will I slow detract from his time if I have to change our pace?
20. What if I have to cancel/change plans with people we are supposed to stay with or meet along the way?
21. Will people understand if I'm too tired to be very social?
22. Will hosts be disappointed if I need to go to bed super early?

So many things run through my head as we ride!  Not constantly, but still, these questions linger.  I asked Keegan to share his thoughts and concerns about the trip, asking him to be honest and not hold back. This is our email dialogue:

Jen: Can you take like 2 min to write down a few bullet points of things you are worried about on the trip.  Anywhere from flat tires to butt chaffing.  Be totally honest.

Keegan: I'm not worried about anything! I'm super excited :)
Jen: Can you answer seriously?
Keegan: I am serious.

Jen:....

Keegan: I'm very slightly nervous about:

Getting a lot of flats

Other breakdowns

Getting hit by a car

Getting sore

The route being more difficult than the training rides because of starts and stops/hills

Your knee getting worse

You possibly getting other injuries

Me getting injured

I mentioned this to others, and their response was, oh he's such a guy, not worried about anything.  Well, maybe, or maybe it's a prime example of the mindset of a healthy person versus the chronically ill.  If you've met me, you know I'm a very positive person, I don't sit here and fret all the time.  But perhaps I've gotten to where I am by always being alert to the possibilities and realities of living with my condition.  JA can flare at any time, and my joints really hurt with no rhyme or reason.  And even more than just my joints, I'm so much more prone to other issues as side effects to my medication and condition that I am just hyperaware of what could come--because in all likelihood--it has at some point in my life.  So I'm not a pessimist, but I understand this will not be an easy journey.  Keegan is mostly concerned about the physical logistics of our trip, where as I wonder at times if there can even be a trip or if my body will revolt. 

Perhaps your comfort can come from the fact that I have at least already thought this stuff through (ahem--mom!) so I have mentally prepared myself as much as I can for the road ahead.  We may get a ton of flat tires and my knee may freak out, but we've thought it through and decided the adventure and power this trip will have, for us and so many others along the way, is so worth the hiccups we may run into.  When we roll into Orlando and I can say--holy crap, we (I!!!!!) did this, it will be such an amazing accomplishment.  In the spirit of the trip, I will truly feel like a Champion of Yes when I conquer 1400 miles, regardless of what comes our way.  A true trip of a lifetime!!