Ankylosing Spondylitis

This was originally a Facebook note I wrote and published on my FB on January 28th 2010. I’m putting it here almost entirely un-modified to make it easier to share with folks on http://forums.spondylitis.org/.


Way back in October 2007, I was admitted to Homerton Hospital in London. My symptoms were severe pain and inflammation in my back, neck, jaw, hips, groin, knees, hands, shoulders, and Achilles tendons. And a few other places.

(Perhaps needless to say, I was unable to walk. I used to say I couldn’t have run out of a burning building. Fortunately i was never presented with the opportunity to test that statement.)

You can see the start of the saga here: http://bit.ly/9CuTfe if you are so inclined, starting with the very first note I ever wrote on FB.

Eventually, I got somewhat better. Not, like, all better. Since then, my symptoms have waxed and waned, but honestly I’ve never gotten better. I should have – Reactive Arthritis does, in fact, get better, so I should have too. But I haven’t. I went from feeling and acting far too young for my actual years on earth to feeling and acting far too old, in the space of a couple of weeks.

Backing up a bit, I kind of feel like I’ve always had some pain in my life. I had pretty severe pain as kid in my legs, which my parents called growing pains and stuck me in the tub to deal with. As I got older I found that if I didn’t exercise, I hurt a lot more, mostly in my larger joints, with my back always being the worst. But I could stay ahead of that by working out. The more I worked out, the less I hurt the next day. But I’m also stoic and have a high pain tolerance and I don’t like to whine.

Since the reactive arthritis, I really haven’t been able to work out at all.

So whether it’s due to the reactive arthritis, or something else, what I’ve been left with since the hospitalization is even more pain. Always in my lower back, but also in places like, well, all over the place. My neck, my jaw, my fingers. Sometimes I will bump my hand against something, you know like you might do and not even know it, and it’s like someone pounded a nail through it. Mostly I can do some stuff, but lots of times it hurts.

If you could get an honest answer out of me, on a normal day I’d rate my normal pain as being at about a 4 (on a scale of 0-10, with 9 being the worst pain I’ve ever felt, which was a tie between post lasik recovery and my ruptured appendix). But you normally wouldn’t get an honest answer out of me.

It hurt to shampoo this morning.

Every time I’ve gone into talk to people about this, I’ve kinda gotten the run around. I’m stoic, that’s not good for talking to doctors. I like to make people laugh. (Even right now, my lower back is, like, ON FIRE, but I’m thinking, hmmmmmm, is this post funny enough?) So the best I can get is “oh, okay, FINE, we’ll do an xray”.

Yay, an xray!

One of my decisions for 2010 is that this will be the year I can do stuff again without it always hurting. I want to, like, go on a hike or a walk, or maybe lie down on the couch, without it hurting the whole time. Or swim without it hurting. Exercise would be SO COOL (I am in such crappy shape!)

So I’ve been seeing this new Dr. and a new PT, and the thing about these people is, they keep asking the same questions over and over again. Like, what am I, some kind of idiot?

How much does it hurt?

Both legs, or just one?

Do they ever go completely numb?

How much does it hurt?

More in the morning or the afternoon?

Where in your back?

How much does it hurt?

Can you move your neck without it hurting at all?

Where does it hurt in your jaw?

Does it hurt when you lie on your back?

Your stomach?

How do you sleep then?

Can you sleep?

Does it wake you up?

How much does it hurt?

Does it ever not hurt?

Does it ever not hurt?

Does it ever not hurt?

Denial, it turns out, is a truly remarkable thing! The longer I simply focus (like a frickin’ LASER BEAM) on ignoring my pain, the seemingly better it gets! Woo hoo! And of course when people ask about it, well, shit. I CAN STILL WALK AND EAT SOLID FOOD!

How bad can it really be?

But the thing about this relentless goddam quizzing, this incessant prying, the thing is that it just kind of overwhelmed me. Okay, fine! Maybe it DOES HURT! Whatever! I don’t want to think about it, But then I stepped back and said “hey silly you are here to get better, how about you actually answer the questions?” that I first realized that I couldn’t answer that last question.

Does it ever not hurt?

Well, okay, so I realized that I could answer it, and the answer is that no, it never doesn’t hurt. It always hurts some. But not so badly that I couldn’t, you know, fight to the death against a few hundred zombies armed only with a crowbar, a can of WD40, and a Bic lighter. It doesn’t hurt so badly that I’d like, just give up and die.

Not that badly.

Last week I got an MRI from my new Rhm (whom I think I now have a small crush on). The goal of the MRI is to see just how FUBARED (that’s a technical term) my back and hips are. Sufficiently fubared and we skip past everything and go straight to the biologics.

Today, sitting in the office waiting for the doctor, I realized that I couldn’t really type on my iPhone very well because my thumbs hurt too much (stupid xBox!) and that I had to hold the phone and type with one finger, which I then realized also hurts (stupid job!)

This is why I should have stuck with denial. I never would have noticed that it hurts to use my iPhone if I hadn’t listened to those stupid doctors.

So, the MRI supports a diagnosis of spinal stenosis, ankylosing spondylitis, and osteoarthritis. Possibly Some Other Big Words. She’s not quite keen on the link to the reactive arthritis. She doesn’t like that because that’s supposed to get better, and I haven’t.

But she has Enough Big Words to skip the Sulfas altogether. Dr. Hsu is going to put me on Enbrel (shout out to our Seattle startup Immuneeeeeeeex! In the house!) which is a weekly self-injected med. You don’t have to wean on or off like prednisone (thank god for that) but I think it’s kind of a “forever” drug, in that it doesn’t reverse nor cure arthritis – it just halts the progression. But it can actually make the pain go away, which would be really nice. Of course, it’s an immuno suppresant, with the side effect of increasing the chances I get sinus infections, which are already bad… but if it works, well, shit.

As I sat there in Dr. Hsu’s office I nearly started crying because, now that I’m thinking about the pain, now that all these people keep asking me to rate my pain and ponder my pain and freaking WALLOW AROUND in my pain, I’ve realized something.

HOLY FUCKING SHIT I HURT LIKE HELL ALL THE TIME! EG right now my neck really hurts and has severely restricted ROM, my back is seriously killing me, my thumbs and fingers hurt, my jaw hurts and has limited ROM… my shoulders hurt.

My feet hurt.

Hey, thanks for that, you stupid doctors and medical peoples! Thanks! Thanks for helping me come to terms with being all in pain and stuff.

Stupid doctors.

The feeling like crying was was a combination of things, starting with feeling helpless. I really don’t like that. It was fear. It was sadness. It was panic.

But it was also a little bit of relief. Like, when you’ve been lying about something, and you come clean? I dunno, I suck at lying. Anyway, I kind of feel somehow like this isn’t just my pain anymore. I feel like maybe it’s ours? And maybe we are going to beat it, with a gold-plated TNF blocker crowbar!

Also I felt some panic when I found out that it usually takes 1-2 weeks to get the pre-auth from the insurance company and I need to get a TB test too, but I want the drug NOW. I want to jab that needle in my thigh and just get going. I don’t want to wait! And what if they say no? Well, if they say no, I will just treat that like it’s someone else’s problem that I can help fix. While I’m frequently crap at my own problems, I’m pretty good at that.

So, lastly, here’s an Important Tip:

If your main coping strategy for dealing with something is total and absolute denial beyond all logic or reason, then don’t tell other people about it. Not your lovers, friends, family, boss (definitely not your boss!). Don’t tell your boyfriend or girlfriend, your exes, your best friends. Don’t tell anyone!

But especially, and this is really important! This is for the health of your impenetrable fortress of total denial!

For god’s sake, don’t tell your mother.

Srsly. BIG mistake. How big? I now have subscription to Arthritis Today.

Like, a printed magazine subscription. Printed on, like, paper. So, like, big.


4 thoughts on “Ankylosing Spondylitis

  1. Pam says:

    I relate to everything you wrote here, and the way you wrote it. I feel like I could have written it. Cracked me up.
    I would love to talk to you about AS. Is that possible??

    • Hey Pam – glad you enjoyed it. I keep meaning to do an update on it based on where I am now. One of these days…

      Do you have AS? Or something like it? What meds are you taking?

      You can find me online at peternbiddle at gmail d0t c0m

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