I know a thing or two about pain. Emotional and physical.
Any woman who has had a baby knows about breathing through pain. And I am here to say that I am absolutely as imperfect as they come when it comes to breathing through anything. I get so angry and frustrated and want to just wallow in my misery sometimes. Very graceful. Very zen. I am more of a just-give-me-a-to-do-list-and-I’ll-do-it kind of person.
As with most new parents, we didn’t sleep much those first few months. Our baby was fussy and needed to be held all the time and, being the worried new mom that I was, I spent what little “free time” I had researching what I was doing wrong and the many ways I may never sleep again.
I am from a family that says things like, “I am not sick, I just don’t feel well”. We push through and don’t complain. So when my hands started to hurt about six weeks postpartum I chalked it up to constantly holding a heavy baby and exhaustion. The pain would come and go, and time was a very slippery and elusive concept in those days, so carpal tunnel syndrome seemed like a legitimate possibility. Sure some days my legs kind of ached, too, but that’s what atrophy feels like, isn’t it? I distinctly remember hobbling down the stairs to the backyard saying to my mom, “I feel like I am getting worse and not better. Is this normal?”. Then one day my knee visibly swelled up. Having barely left the house in months, let alone done anything active enough to cause an injury, I finally couldn’t find an answer for that one.
I was diagnosed with Rheumatoid Arthritis (RA) two weeks later. Cue record scratch. Arthritis is for old people, isn’t it?
I’d love to say that I went home from the doctor with my chin held high and soldiered on with zero self-pity. Ha! No, no, no. There were some serious bellyaching moments and I definitely asked “why me” more than once. I was shocked, almost offended, that this could happen to me. What the heck did I do to deserve this? Very zen, like I said. For me, RA meant one big old Rude Awakening.
Pro tip – don’t google your newly diagnosed disease when you get home from the doctor. It doesn’t end well. Ignorance truly is bliss.
With the words “severe prognosis” ringing in my ears, I was sent home to begin to ween my baby off breastmilk so I could start on some pretty powerful medications to try to change the course of the disease. I remember calling my OB and asking for advice on how to ween a baby, explaining what had happened and why in this age of “breastmilk is best” pressure I was stopping. The nurse I spoke with, thank goodness, was so compassionate. I will never forget her kindness and her words, “You did such a good job”. I needed to hear that. It’s very lonely to be sick, have a brand new baby with all the societal judgment that comes with parenting, and your choices aren’t yours anymore.
That was part of the emotional pain of RA for me. The diagnosis, whether you have a little baby or not, brings a flood of fears and unknowns. Google told me that 1/3 of people with RA are so disabled after five years that they can no longer work; I was denied short-term disability; the medication side effects and disclaimers were terrifying to read. The disease itself is an unpredictable roller coaster ride. Some days are better than others, some medications work well, others make you nauseous. It’s all trial and error. No lists.
And the physical pain? Well, it’s like nothing else, quite. A broken arm? Maybe. Childbirth? I guess so. It’s intense and deep and unrelenting. 40mg of prednisone and 800mg of ibuprofen wouldn’t even touch it some days. I couldn’t lift my baby out of the crib because I was cradling my arm so gingerly. Some days I couldn’t walk. I never knew where the pain would go next, which joint would be affected. Hips, shoulders, jaw – those are the worst. You can work around a hand or a finger, but it’s impossible to eat or even smile when your jaw joint is inflamed. I begged my dentist to tell me it wasn’t RA and I just needed a root canal. Anything, like I said, for someone to just fix it.
I have tried to figure out what triggers my flare ups. I cut out sugar and caffeine and alcohol and gluten – pretty much all joy – and it made no discernable difference except that I was more miserable and now high maintenance as well. I have submitted myself to science and participated in pain studies. Mostly I learned that I have a high tolerance for pain and that ice is my friend. I have no idea why some days are better than others. Remember how I said that I like order and a nice to do list? Yeah, RA doesn’t work like that.
It turns out that that kind of checklist mentality, where if you just check the right boxes you are in control, is a false premise. That remains a disappointing life lesson for me. But I am working on it.
Long, long story short, eventually the meds did their thing and my RA went into remission. For the time being, I don’t have any pain and haven’t had any permanent damage to my bones or joints. That in and of itself is a miracle. Truly. I’ll write a whole post on how different the outlook is for RA patients who were diagnosed after methotrexate started to be used to treat RA as compared to previously when all that could be done was attempt to manage the pain.
It took a lot of time, a lot of deep breathing, thousands of laps in the pool, sometimes screaming underwater, sometimes also crying into my goggles, for all the emotional toxicity to work its way through my system. But eventually, that piece settled, too.
Now I swim in a masters swim program. I participated in a triathlon a year ago, something that was absolutely unimaginable only a year prior. I go to crossfit. I traveled to Guatemala! Hope abounds.
I am tempted to say that I conquered RA, that I win. But that would mean that I haven’t learned anything from all of this. I have been around the block enough times now to know that my RA and I are just in a temporary place of peace, and that it will inevitably come back. And when it does, honestly, it will be really hard for me. I don’t expect that my despair will be as deep, but I’ll surely still long for that elusive checklist and the return to normalcy. Now I know, though, that I CAN come back, that RA is just one part of my story, and that I am not less than because of this. As Dory says in Finding Nemo, “Just keep swimming, just keep swimming”. Seems like some pretty darn good life advice. One day at a time. One breath at a time. One lap at a time. One foot in front of the other.