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.

Sunday, April 28, 2013

you may have an amazing doctor if...

...you can speak and not only are you heard, you are listened to.

...you are spoken to and treated like an equally capable, competent, and crucial component of your medical care.

...you feel like a crazy person when you express your anxiety, and you receive reassurance that confirms you are a little crazy, but in a perfectly normal way.

...when you mention that you haven't taken your meds in two months, the response doesn't make you feel like you are being judged...

...but in that same response, the purpose and importance of these medications is reiterated, without it turning into a lecture.

...your concern over the recurrence of side effects is met with understanding, and a promise that your overall well-being is tantamount to any conventional loyalty to a particular drug or pharmaceutical company.

...you can see that every patient is treated like a priority.

...you leave the appointment feeling optimistic, regardless of whatever news you've received.

Monday, April 22, 2013

this much concentration may make my head explode

I had a post all planned out (well, loosely outlined in my head) about my rheumatology visit today and I was really looking forward to it. I was going to gush about how Dr. Awesome is pretty damn near being my favorite health care professional of all time, next to the labor & delivery nurse who got her other patient covered to ensure that I got the drug-free birth I wanted. I don't even remember her name, but I'll never forget how she spent the last hour - which was the majority of Emily's labor - coaching me through it. (I still can't decide if it would be classified as precipitous labor since I had not only contracted uselessly for weeks beforehand, but also had the occasional painless contraction once my water broke in the wee hours of the morning...since labor didn't start until six hours after that, and then lasted about an hour and forty-five minutes, I think I can claim it. For the record, it was pure insanity. IN-SAN-I-TY.) Without her I think I would have completely fallen apart...for real.

Then the migraine that's been torturing me like a schoolyard bully became worse again. It keeps teasing me, backing off and lingering right around the corner before jumping up and punching me in the face.

So not only is it exacerbated by the eye strain that comes with sitting in front of a screen and scanning back and forth as I read, but I'm also in a perco-fog after finally yielding to its half-hearted promises of respite from the pain. It took an entire episode of The West Wing to muddle my way through that first paragraph.

(For the record, I'm not writing this in an attempt to garner sympathy; we all have our issues to deal with, whether they're physically painful, mentally taxing, emotionally draining...or not that affecting at all. To put it simply, if I don't get mine out and try to at least lighten them up a little, I won't be able to focus on anything else.)

I was sadly excited to write all about why Dr. Awesome is so awesome, but it'll have to wait another day.

I've been laying pretty low on my alcohol consumption and drinking a literal gallon of water every day in the hopes of discouraging the migraine from beating the hell out of my brain, but since, as one of my chronically awesome friends put it...

...I'm just going to indulge anyway. Can't let them take away everything that I look forward to.