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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