Tuesday, May 21, 2013

there is a crack in everything. that's how the light gets in.

"'Hope' is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -"

I have been feeling really good lately. Like, really good...about as good as I felt before I was diagnosed with RA, before Emily came along, before I took up running in 2008 and noticed some suspect swelling in my hands when I ran on particularly warm days. My joints have felt great, the bursitis in my left hip has been practically non-existent, and since I got trigger point injections, I've had hardly any muscle spasms in my neck and shoulders. If it weren't for the migraines, I wouldn't even feel like a sick person.

“Be faithful in small things because it is in them that your strength lies.”

I woke up on Sunday feeling like I had been hit by a truck. My body ached, literally, from my head to my toes. My quads were so weak and on fire that any time I wanted to get up, or even change positions, I had to use my arms to move my legs. I couldn't get out of bed without JW's assistance, and the range of motion in my left hip sucked so much that I limped around all day.

It was probably naive of me, but I wasn't really concerned about any of this. It made sense: I went running on Friday, for the first time in seven months, worked a busy shift at the restaurant, and then played on a team in a charity softball tournament the next day. Maybe the soreness was a bit excessive, but I figured I'd feel a lot better on Monday. Even my worst pulls and spasms are always better on Day 3.

“Life's under no obligation to give us what we expect.” 

Monday was still a little rough. I was walking pretty slowly and feeling pretty blah in general. On Tuesday my thighs burned as I walked down a couple flights of stairs in a parking garage.

I knew something was wrong when "that muscle" in my neck - the one that was tamed with trigger point injections - started to get an ache that I can only describe as being "yucky." (When one of my muscles or tendons gets particularly inflamed, I feel this gross, unsettling pain. It's almost like the pain you get when you have a cut that's become infected. I can't think of a better way to put it.) It traveled down my upper back in the space that runs between my left shoulder blade and spine, and settled in. Since my hip was still hurting, and laying on my back wasn't comfortable either, I ended up sleeping on my right side.

On Wednesday, I woke up with my right arm tucked up under my pillow. And I felt it.


Not myofascitis pain, or pain from bulging discs, or whatever the hell has been torturing me for the better part of a year. It was the type of pain that made me wince - not because it was particularly bad pain, but because there would be a split second where it got so much worse before it got better.

Today, my hip is screaming. My elbows and shoulders ache. My knuckles are puffy, their wrinkles ironed out at the first interphalangeal joints.

My first RA flare in months.

“She wasn't bitter. She was sad, though. But it was a hopeful kind of sad. The kind of sad that just takes time. ”

I would be lying if I said I was caught by surprise. I knew it was coming. In the back of my mind, I knew. But I'm still sad, still disappointed. Who wouldn't be, honestly? For the first time in years, I didn't feel like someone who had RA. For weeks. If you're chronically ill, or have been, you can surely understand what it feels like to be ever-conscious of it. To have that go away, even for a day, is huge.

"We must accept finite disappointment, but never lose infinite hope."

I could feel defeated, and I did feel defeated; at least at first I did. I went without any significant RA symptoms for a prolonged period, and they came back. No matter how many times they go away, they will always come back, because I have a disease that has no cure. It's hard not to feel defeated once you start thinking about it...and then I thought about it more.

I went without any significant RA symptoms. For a prolonged period.

Without DMARDs. Without biologics. I didn't even need pain medication.

I think it's obvious what the silver lining is here.