Thursday, July 2, 2015

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.
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!!


  1. Jen, as one of your hosts, let me say that "No, I won't be disappointed if you go to bed early"! I just want to make sure that you are comfortable and have everything you need! Harry and I look forward to meeting you and Keegan!

    1. Tammy, that's sweet! We have a shorter ride to you, but are behind on our sleep! But can't wait to see you all tomorrow! xo

  2. Jen, even if you need to stop the trip because of your joints, consider it a success!!! You have a brave heart, and braveness is what we need to let the world know what Juvenile Arthritis is and how is affecting so many kids and families.....I hope I'd get to meet you guys!

    1. Thank you for your note, Claudia! I hope we meet too!!