As
perhaps expected by those of you actually living with rheumatoid arthritis, I
did end up paying a quite a price for doing something so crazy. I felt ok
through the evening of day eight, but
then the adrenaline finally wore off. I woke up the following morning with a
worse headache than I have had in many years – and, unfortunately, a full day
of traveling with small children ahead of me.
I managed to stay upright, get myself and my family to the
airport, survived through the flight, and made it it to baggage claim before I
completely ran out of stamina. Thank goodness my mom was waiting to pick us up
at the airport! She took us home and I went straight to bed and literally
stayed there for at least 18 hours. My
energy came back to me slowly over the next few days, though I’m still having
some challenges in that department as I attempt to wean off the extra medications I
was taking during the ride.
My hands have been slower to bounce back, particularly the
left one. I still don’t have a lot of gripping or squeezing capabilities in my
left hand, so I’ve gotten quite good at eating right handed over the last two
weeks! The smallest two fingers on my left hand are also still problematic,
though I am starting to be able to use them again while typing – which is
honestly a relief. Writing is not only my livelihood but also an important part
of stress management for me, so not being able to type as fast as I would like
to has been a real source of frustration.
My lip has also been a slow process of recovery. It has been
a very painful and honestly disgusting experience, so if you need a TMI warning
you may want to skip the rest of this paragraph and the next one! After the
blisters appeared on day six I
did my very best to protect my lip from further damage, but I still spent
several more entire days out in the sun and wind. And it was really hard to
apply any sort of ointment in porta potties at rest stops with hands that were
covered in sunscreen and road grit (not to mention with barely functional
fingers). The blisters started bleeding and overnight my lips would get glued
together with blood, then everything would crack open in the morning. It was so painful that it made it hard to eat or smile,
and when my younger son accidentally bumped into my lip on day seven I literally burst into tears from the pain. I’ve experienced
my fair share of pain, and this was honestly some of the worst in how it made
me feel dizzy and sick to my stomach.
When my lip wasn’t looking much better after a day at home,
I made a doctor’s appointment – not with my regular doctor but with the first
available one. He examined my lip and I honestly don’t think I’ve ever seen a
doctor make a more grossed out face. He kept saying “I think it may need to be
debrided, but I wouldn’t want to do it!” which was not exactly encouraging. It
was rather unprofessional, but I tried to find the humor in it. He sent me home
with an appointment to see the ENT nurse practitioner later
in the day. Luckily the ENT nurse said I didn’t
need debridement. She gave me some double antibiotic ointment and a
prescription for a topical steroid ointment and told me to rotate them. When I picked up the prescription ointment later that day, the pharmacist told
me to be really careful as it could actually increase my chances of infection –
at which point I thought I might scream. Luckily, I didn’t get any sort of
additional infection, and rotating the ointments over the past two weeks has
led to my lip almost being healed. I may even be able to kiss my husband and
kids again soon!
I hope these last few posts have helped explain what I meant
when I said the experience was amazing and terrible. I loved it and I hated it.
It was really, really hard – but also really, really rewarding. Before being
diagnosed with RA the word “athlete” was certainly part of my identity – but
it’s definitely a word that has been missing from self-descriptions over the
past eight years. It was quite
incredible to re-discover that feeling inside of myself, that missing piece of
my identity. To have a chance to re-claim that word and mold it to better fit the
person I am today. To remind myself that despite living with RA, I can reach
any goal I want to – as long as I have enough determination (and patience to
deal with whatever follows). I don’t know that I’ll be getting back on my bike
anytime soon, but I’m so glad I did in the first place.
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