Who'd Want to Live in a Vacuum?

I realized this morning that I've been blogging for almost 15 years.

When I created my first blog, my audience was exclusively strangers on the Internet—my writing purposefully kept secret from anyone I knew in real life.

That must sound odd to an Internet culture that now values individuals who have branded themselves with their real, full names and whole life on display as a cohesive package—but that was just the opposite of early Internet culture.

There was comfort and safety in keeping all identifying private information concealed—and excitement in the mystery of it all. While I was a homeschooled teenaged girl growing up on a nursery in Alabama in real life—on the Internet I could anonymously explore and discover a voice I might otherwise have never thought to look for.

Blogging back then wasn't self-involved. Nobody took pictures of themselves or tried to make their lives look glamorous. There was no need to put on make up or create a vivid character for an online audience. There was no risk of over-sharing or faking anything—because we were just writing about our lives in a self-examining, thoughtful way—trying to make sense of the world around us and connect with people completely different from ourselves who we knew we'd never meet in real life.

You could be yourself, unvarnished.

When I started learning to code (awfully) and building blogs for my friends, that's when the trouble started.

When people in my personal life knew where to find my blog, they were suddenly able to go through the archives and access posts I'd written about fights with friends, conflicts over boys, and secret crushes. A friend of mine was suspended from high school for writing a blog post complaining about a teacher—and I was punished because I made the blog for her (justice is in short supply for teenagers, Amen?).

It was then that my audience changed and with it, my writing style. I worried about what my family members would say—and I would edit myself accordingly. I "admitted" things I wanted to tell certain people, knowing they would read it and I could avoid the unpleasant exercise of advocating for myself. My tone and content changed. And then, gradually, the Internet changed.

In college I would ride my bike to the library to spend an hour a day (maybe) on the Internet—and now I'm only off the Internet when I'm sleeping.

And what a different Internet it is.

I learned a valuable lesson when my audience expanded to include people I cared about:

Words don't live in a vacuum. 

With rare exception, you can't tell the unvarnished truth without hurting someone along the way.

And wouldn't it be nice to return to a world where the Internet is a place we visit for a few hours each evening after a long day spent in reality?

Part One: Put Some Ice On It

Wow.

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...

Nope!

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.

Let's Talk About Pain!

"You don't look like you're in pain!"

For months I've walked around trying to figure out how to share this story, mulling if I really wanted to share it, and thinking about how to put it out there in a way that will be helpful and empowering—not depressing or whiny—and most importantly honest without oversharing.

Tonight after seeing Allison tweet about her daily blogging challenge I realized why I've had such horrible writers block for so long: I've stuck myself with this idea that I have to write it ALL out at once in one big long dramatic post. Then I get defeated just thinking about it and put it off for another day.

So, I'm going to write out a list of things I want to talk about, then every day for the next few weeks I'm going to tackle one at a time:

I want to talk about getting diagnosed with psoriatic arthritis at 29.

I want to talk about how long I ignored my symptoms and how hard it was to find a doctor to diagnose me.

I want to talk about learning to inject myself with Humira and all the weird side effects from being on an immunosuppressant.

I want to talk about how humiliating it was to walk up to the gym and plant myself on a treadmill going 3.5-4mph every night in searing pain while my former Crossfit "family" stared in silent judgment as I passed, only a very small handful bothering to ask why I'd stopped coming or check to see if I was okay (and how every single one of my boot camp friends has reached out to be supportive and understanding).

I want to talk about how being in a lot of pain changes your mood and outlook on life... but I want to talk about it in a not-sad and depressing way.

I want to talk about how my coach seemed to think I was making excuses when I explained my diagnosis and cancelled my membership... and hasn't reached out once to check on me.

I want to talk about how I've finally learned our value as humans shouldn't be measured by how fit we are—that staying active is something I do because I love it, because I want to stay healthy and happy and enjoy life—not define who I am or determine my worth.

I want to talk about how I will never, ever judge anyone in the gym again for not appearing to push themselves to the limit or for using lighter weights—there is no way for any of us to know what pain they might be in or what their story is.

Hell let's praise people for having the courage to listen to their bodies in a fitness culture that SCREAMS keep going, don't listen to those legs, you'll pass out before you die, ignore that pain and WHISPERS but uh, like, listen to your body as an after-thought/legal requirement.

Let's admire the guy who says nope, I'm not going to power through these deadlifts even though a bunch of people are screaming at me to keep going—this is actual pain, not soreness, not weakness leaving the body: PAIN.

I want to talk about bio-hacking, the Bulletproof diet, avoiding nightshades, fighting inflammation naturally, and how quitting Crossfit and starting to walk 10-15 miles a day has made me a whole different kind of fit (and Fitbit addict).

I want to talk about how even with EVERYTHING I just said above—I STILL struggle with feelings of guilt and shame because my body is in pain that I can't prevent and that it's humiliating not being able to train and run and lift and jump around like a rabbit.

I want to talk about how I'm jealous of people with boring fitness stories. I want to be one of those people who come to class 6 days a week and never have injuries, never have an off-day, never get sick, and never plateau—year after year. But when I stop to think about it... I only know like two people like that.

Strike that, I want to talk about how comparison is the thief of joy.

I want to talk about how hard it is not to annoy the hell out of your boyfriend when this is all you ever want to talk about all the time.

I also want to answer any questions people have—especially if you're struggling with an auto immune disease—so ask me on Twitter.