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.

Pain.

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.

the good, the bad, the ugly, and the uncertain

The good: I decided to take up running again, and it went really well at the start. Within a few runs, I was able to run 2 miles without stopping, and was averaging over a mile of running each time.  My short-term goal is a little over 5K distance, and my long-term goal for a year from now is The Great Cow Harbor 10K.  I'm supposed to be running 5.3K (3.3mi) in a relay team for the Town of Huntington Sprint Triathlon, and that was looking really promising this time last month.

The bad: Between TS Irene, shin splints, and Susannah starting kindergarten, I haven't run in almost 3 weeks.  The triathlon is 12 days away.  I was proud of myself for going 2 miles without stopping, but on the flip side, I've hardly run 2 miles without stopping...that was before the hiatus!  I'm afraid I've really set myself back now.

The ugly: My left knee decided to revolt last night, and unlike my typical RA joint pain that tends to be better by the morning (or, should I say, after my joints loosen up), it is still swollen.  I've iced it, rested it, elevated it and had it in a compression sleeve all day.  Still puffy, still sore.  So I'm thinking that I've actually hurt it and that it's not just RA pain.

The uncertain: I thought for sure at first that I would be able to throw up my swollen middle fingers at RA and say, "Fuck you, my lower body is strong enough that I'm going to run 15 miles a week, and it's gonna be awesome!!!"  Now I'm thinking that I'll have to very humbly apologize to my body for being so reckless.

Oh, and just for an added bonus, my inner upper gumline, my hard palate, and the back of my lower gums are like a big minefield of sores.  You would think that this would at least help me lose a little weight since eating is so painful, but no luck there - I've got eating more than covered!  I've been stuffing my face with soft things like bread and pasta since I feel like I'm going to vom if I don't.  Yeah!!!

Dr. Rheumy told me at my appointment two weeks ago that I could quit the MTX, since I've officially "failed" the treatment (I'm not noticing a difference in my symptoms this time around) and should be starting Enbrel soon anyway.  I'm too scared to discontinue for good.  Now I'm not so sure why...surely untreated RA isn't as bad as unresponsive RA coupled with unrelenting nausea and what seems strangely akin to leprosy in my mouth.  (Sorry to anyone out there suffering from leprosy - though at least there is a cure for it that the WHO will provide free of cost.  I wish there were a free, readily available cure for autoimmune disease!)

Why am I torturing myself again?  I can at least answer that question: because of that pesky little thing called hope.  Deep down, under my pragmatic cover, I am a hopeless dreamer.  Maybe - just maybe - the MTX will suddenly start to do something.  I've only been back on it for 8 weeks...maybe it is just taking my body a little longer than usual to respond to it.

take me back

I spent about 10 minutes laying on my left side, with my arm under my head, and my legs curled up.  My left hip is on fire and my shoulder is so weak and stiff that I can hardly stand to bring my arm up from my side.  It is starting to radiate pain down my arm through to my elbow, and spread across the left side of my upper back.

I tried to grab the roll of toilet paper in the bathroom, and it was too hard to use my left arm, so I had to keep it lamely at my side while I reached with my right arm.  I came back to the living room and told J.W. what had happened.

After that, I cried.  Just for a minute.  Quietly, so he didn't hear, even though he was sitting right next to me.  I think if I tried to talk about it to him I wouldn't have been able to stop.

I don't remember what it's like to be able to just get up and move around without stiffness.  To bend down and pick up something off the floor without having to grab something for support on the way back up.  To lay down on the couch any which way I want without having to think it through beforehand.

mack trucks and mortality

I have not been well this past week.  You can probably guess that by the first half of this post's title.

I was naively lulled into a false sense of security by my methotrexate, thinking that maybe I am really not doing that badly with the RA.  This line of reasoning came from the fact that I was only having a "minor" flare when I went back on the MTX after the 4-month hiatus.  It was just my hips screaming and my hands swelling to the point that they were barely recognizable as my own; nothing systemic going on.  I figured things were going pretty well if that was all I was complaining about after months of not being on any treatments.

I have not taken MTX in 3 weeks now.  Probably a stupid decision, but the week I was supposed to refill the script was a tough week to pay out-of-pocket.  Our new insurance was finally straightened out the following week, but after being off it for two weeks, I was starting to tell myself that maybe I should just wait till I get all my ducks in a row, have a referral to my rheumy, and get my labs done before I resume treatment. After all, I was feeling pretty good, minus the frequent flares in my hands - particularly the thumb and fingers of my right hand - so I figured I could wait a little longer.

My current state - feeling like I've been hit by a truck - started on Thursday as a nagging fatigue and has progressed from there into loopiness, episodes of palpitations and mild chest pain (something that tends to happen when I am stressed), a headache that won't go away, and pain involving my left eye.  Along with the eye pain has come blurred vision and strabismus (wandering) in that eye.

Not having chosen a PCP yet, and not wanting to go back to my old PCP - the wait times crept from 20 minutes to nearly 2 hours over the 3 years I had been seeing him - I went to an urgent care center.  That doctor noticed the strabismus, which I had not seen myself, and was concerned about that and the headache, so I got to go for a CT scan this morning.  Fun!  That came back normal, and I assume the EKG he did in the office was fine as well since I haven't heard otherwise.  I am just waiting for blood work results now, to rule out Lyme Disease since I was bitten by a couple of ticks on our trip to Virginia in early May.  The doctor thinks Lyme is unlikely since it is not nearly as prevalent there as it is here on Long Island.

Tonight I am aching all over, muscles and joints alike, the headache is not yet gone, and my eye is weak and in pain.  I woke up the last few days barely able to straighten my right arm at the elbow, and my left shoulder was screaming while I tried to prop myself up on my left arm for a few minutes last night.

I don't think I have Lyme Disease.  I think I am having one hell of a flare.

Feeling relatively good for a few months must not mean as much in terms of disease activity as I was secretly hoping it did.  How stupid and naive of me to assume that I'd be okay going off MTX for a little while again!

On a separate, but somewhat related topic, I have been thinking of my own mortality since yesterday.  A blogger in the RA community, RA Superbitch, passed away last week.  There hasn't been an announcement on her blog or Facebook page concerning the details, but she had been dealt a really shitty hand with her RA and it seems to me, along with many others, that her RA is what caused her death.  I did not "know" her well outside of reading a blog post here and there, but I know she was a cherished part of the RA blogosphere and will be sorely missed.  She was in her 30s, with a husband and young son, so it really hits close to home for me.  And makes me think that much more about how serious this disease really is.

Now that all of this has been said, I am going to buckle down and choose a PCP.  It's time to really focus on treating my RA.