Of all the responses I thought I would receive about yesterday's post, I'm astonished by how many of my friends also suffer from AI diseases and have never talked about it. I didn't think my post would resonate with so many people and I'm also overwhelmed by all the support I've received. Thank you.
I feel like I need to put up a disclaimer that this post will be a little sad, but I promise it's the only one that will really be like this—because since my diagnosis, things have only got better.
A lot of people have asked me how long I've suffered with PA and my response is: I don't know.
I waited for a really, really long time to finally seek medical help—even though my pain was often unbearable.
Since college I've frequently awoken with pain coursing through my arms, unable to move them until after a few minutes of walking around doing shoulder rolls. I always thought it was a normal part of getting older or maybe soreness from a work out or sleeping the wrong way. "Waking my arms up" was just another part of my morning routine.
It sounds insane to me now, but I never once mentioned it to a doctor.
About four months ago I went to my Crossfit coach, frustrated that I wasn't seeing results from classes despite trying my hardest. I didn't mention my pain because I didn't want to sound like someone who makes excuses or whines—the "rub some dirt on it and suck it up" aspect of Crossfit is part of the appeal - it's very American, very "pull yourself up by the bootstraps" and "if you work hard and don't quit you'll get there." I was sold.
I wanted to talk solutions/goals/troubleshooting. My fitness background is varied - I played sports through high school and college and have always been very active; before converting to Crossfit I took boot camp and spin classes 5-6 days a week for years... so I was surprised after a few months of CF that my strength and endurance overall were getting worse, not better.
When we sat down and I started to tell her about it, I felt like I was talking to a wall. I was interrupted or had my sentences finished for me the whole time and was basically told I just needed to increase my cardio and "lean out" (actual words used) then check back in a few months later (Translation: You're just fat and it's not Crossfit's fault).
As someone who is actually motivated by tough love I walked away motivated.
It was like that scene in The Devil Wears Prada when Annie is crying that she's doing the best she can and it's not good enough and Nigel tells her no, you're not trying hard enough and you need to suck it up and then she realizes he's right and gets a make over with Chanel boots and finally gets to work.
So I did. I upped my cardio, getting on an Airdyne or a rower before classes and adding extra runs in throughout the week. I did what everyone told me to do: I pushed through the pain.
But instead of getting better, it only increased—and I finally noticed it wasn't related to how hard my workouts had been the day before (my shoulders and arms would be sore even if I'd only done back squats, for example). It also wasn't soreness that could feel better with foam rolling. It was pain.
The pain didn't go away after a shower and stretching—in fact I couldn't even get into a plank position without tearing up in pain. I took a rest day. The next morning I tried to do inch worms to warm myself up and after walking myself out I ended up on the floor unable to get up.
I thought, "that's weird."
I took otc anti-inflammatory pills and slept on 3-4 packs of peas and ice wrapped in towels—I even set an alarm for midnight so I could wake up and get new frozen packs. I did that for weeks like it was completely normal.
It got to the point that the only thing that wasn't excruciating was standing upright, so sometimes I would pace around my apartment or walk on the treadmill in the basement holding ice packs to my back until I could finally bear the idea of laying down again.
As you can imagine, it was really challenging to perform well at work - I couldn't focus on anything but the pain and it made me angry and short-tempered. If you know me, you know that's not like me at all.
I was constantly exhausted from being awake all night. Everything frustrated me—from crowded sidewalks to long lines at Whole Foods (well okay that's normal). I would lose focus in meetings if a fresh jolt of pain washed over my arms. I skipped all social events. I couldn't walk my dog for fear she would pull on her leash. I definitely couldn't work out.
But even at the worst I just knew with rest from the gym for a few days, a healthy diet, and a massage I'd eventually feel better on my own.
Because I'm a moron.
One day in January my boyfriend and I got back to my apartment after grocery shopping and I had to ask him to carry all the groceries in because I couldn't even lift a single bag from the trunk to the ground.
That's when I thought to myself: What is the point of lifting weights to be a strong, healthy person if I'm in too much pain to perform basic tasks?
That was my lightbulb "something is really wrong here" moment (yes, I know, I ignored A LOT of other red flags to get to that moment).
I finally went to my doctor and described the pain I was feeling. After being sent to a few different specialists I saw a rheumatologist and after some tests and x rays I was diagnosed with psoriatic arthritis.
I was prescribed new anti-inflammatory pills that I quickly discovered were hardly stronger than the otc stuff I'd been taking.
After a month of taking pills constantly I went back to my rheumatologist to show him my "progress." When I sat down and began to answer his questions I realized he had no idea that the person he was talking to wasn't the real me. I wished I could play him a video of myself from six months earlier—bubbly, silly, active, and happy. Not scared of moving her arms. Not on the verge of tears fearing the next crippling wave of pain. I didn't even sound like myself.
So I stopped and told him: This isn't the quality of life I want. I can't keep living with this pain and the pills aren't working.
We talked about Humira and he gave me all the information I needed about it and said it was a big decision and that I could call the office when I decided how I wanted to continue my treatment.
A few days later, while I was still researching the side effects and waiting for my pain to magically disappear on its own, my grandfather passed away. I quickly had to make plans to go home and I thought to myself, I don't want to go home to my family like this. I need to be pain-free. Now.
So I went back to the doctor and thought I was going to get an injection...
They taught me how to give myself the injections.
Spoiler alert for tomorrow's post (which might include a video of me giving it to myself): It sucks.