About this time last year, I decided I wanted to start hiking again. So, I took a vacation day and did just that, attempting two hikes for my first foray into the woods. About five months later, I was still hiking about every week. In fact, I was so dedicated Dad felt it was necessary to sit me down for an intervention. It was a hot August day.
“It’s like an obsession with you lately,” he said, eyebrows drawn over baby blues, forehead creased with worry. He was rubbing his palms together, doing that thing he does when he doesn’t know how to ask whatever burning question he has that day.
“Why do you feel like you have do to this?”
That was a great question. And by the time he finally sat me down to ask it, I knew the answer.
I’m going to pause for a second to admit I feel sometimes like I take this Sjogren’s thing a bit too seriously. Especially since most people I’ve encountered – either online or in person – act like it is no big deal. And they’re right. Sjogren’s typically isn’t. It’s not cancer or Lupus. It’s typically just an annoying thing you deal with. But when it causes your immune system to try to kill your lungs, it becomes a very big deal.
So when I started hiking again a year ago, after six months of barely being able to walk across the room without stopping to rest halfway, it was a big effing deal. I had a lot of fight in me the year before, making it as long as I did before I finally gave up and went to the ER. (My rheumatologist likes to bring this up frequently. He always says it a little in awe and a little reproachfully, warning me not to do it again.)
For a while, that fight was gone, but I think it needed to be. My body needed time to rest and heal. But that time ended a year ago when I completed my first hike. Walking even just a mile with Gus cranked up to full power was a hard won battle – and I got addicted to the feeling of power I got when I finished.
I finally believed Sjogren’s and Interstitial Lung Disease weren’t going to beat me. I had found my fight again.
But there was another reason for my constant wandering last summer: I wanted to. Again, I know I wasn’t given a terminal diagnosis or anything. But still, I got a wake up call. I went through my 20s working nonstop and trying to finish my degree, rarely stopping to just enjoy life. I kept thinking that I’d work really hard and pay my dues to society, then start traveling and enjoying my life. I had things so backwards.
Flash forward. I’m 29. I’m in the hospital. I have two busted lungs. I’m put on medicine to suppress my immune system. I’m on oxygen, presumably for the rest of my life. I’m trapped like a docked boat. The entire ocean is ahead of me, but I have no way to get away from the shore.
So the wake up call: I had put off doing what I enjoyed in favor of a better-paying job, or more overtime, or another internship. At 29, I was still finishing the degree I had started eight years before. I hadn’t done any of the travel I wanted to do, and suddenly, I was sick. Not just sick – I had a chronic disease.
It took six months after my diagnosis for this hit me. Instead of spending any more of my life doing the things I felt obligated to do, I decided I was going to do the things I wanted to do – hike, and explore and travel. And while I’m still working on that world traveler status, my little adventures around home keep me satisfied for now.
So the answer to Dad’s question was simple: Because I can.
In October, about a year after my initial diagnosis, Dr. B. declared me in “medical remission,” which means remission with the help of medication. He also dropped a bomb on me that I wasn’t expecting: I may not have to take medicine to control it my entire life.
I’ll swear on a stack of Bibles that is not what he told me in my first hospital follow up – but it was the best news I’d heard in a year. After spending the previous six months beating myself up for being so-called responsible in my 20s and wasting the “healthy” years of my life on working, he was handing me back several of my goals. The trick for me is going to be staying patient for the next three to five years it takes to wean off my medication and not throw a world-class tantrum if the Sjogren’s rears its ugly head and I have to start all over again. But there’s hope – and sometimes that the best thing.
The good news doesn’t stop there, folks.
There’s also a chance Gus and I will be officially divorcing. I know, I know. I’ve said this before, but this time I mean it! This time, the doctor is finally starting to agree with me.
With my last pulmonary function test, my lungs were at 67 percent function, up from 62 percent six months before. Even to me, that doesn’t sound like that much of an improvement, but I’m still improving – even after my immune system is under control. My doctor is finally ready to admit that I may not need oxygen forever. (It’s only taken him 18 months to come around.)
I’d be foolish if I didn’t at least admit that while I rarely use oxygen for anything anymore, I still need it for anything cardio-related. I absolutely cannot do anything strenuous without my oxygen levels dropping to dangerous levels. But guess what? I call that an opportunity. A year ago I still couldn’t do anything without it.
In about six more months I’m going back for another pulmonary function test. In this one, Dr. M. will determine if I still need oxygen. This is my deadline to be able to hike without my crutch. While the thought of losing Gus is terrifying, it’s also opening a huge door. Step one, get off oxygen. Step two, get off drugs. Step three, take over the world!