Monday, March 21, 2011

Don't cripple your future with limps from your past.

I have meant to write this post for a long time, but have just never got around to it until now. Prepare for a long one! As long time readers and people I know in real life may be aware, I have ankylosing spondylitis.

Ankylosing spondylitis is "a form of spondyloarthritis, is a chronic, inflammatory arthritis and autoimmune disease." Yeah, thanks Wikipedia! Don't worry, that doesn't clarify a whole lot for me either!

What does it really mean?

For me, it started one evening when I was around twelve years old. I got a deep, burning ache in my hip that wouldn't go away. It turned into a sharp pain when I moved, and didn't lessen whether I was standing, sitting or lying down. My Mum ended up taking me to the emergency department in the middle of the night, and from what I recall within a couple of days they had tentatively decided I'd dislocated it, and gave me some crutches and painkillers. Over the next few years I had various pains- most frequently in my neck, knees and hips. For a while it was dismissed as growing pains. I can't remember now exactly what age I was when I was given an official diagnosis, but eventually I had a few blood tests and it was decided I had the same arthritic condition as my Mum.

Throughout my teenage years, my symptoms got worse and worse. I was taking around 20 pills per day for most of that time, and they were not making a huge amount of difference. I had monthly blood tests to monitor my inflammation levels, and the effects the various medications were having on me. I was one of those girls with a note to get out of PE class most of the time, and I found that the most frustrating thing was how one day I could be crippled in pain, and the next I could quite easily participate in games. How were those of my peers who didn't know me very well going to understand that? And being an awkward embarrassed teenager, most of the time I didn't really want to go around explaining that I had a disease associated in most people's minds with grandmas. The shame! Pretending to be a lazy 'cbf' kind of PE student proved to be a lot easier than being accused of faking my pain (a rare occurrence, but I do recall it).

In my final year of high school I had a huge amount of sick days, and also had a couple of stints in hospital having intravenous steroid treatments.

Fast forward a couple of years to 2009, and my symptoms had become a daily battle.

I had to sleep flat on my back every night, without a pillow. Every morning I woke up with my back feeling frozen in place. I have metal bars in the headboard of my bed, and getting up in the morning literally meant reaching up with both hands, grabbing the top bar, holding my breath, bracing myself, and hauling myself into a sitting position. My back and hips would usually audibly crack, and I'd be left sitting in bed, trying to catch my breath, and prepare for the next step of actually standing up and making it to the shower.

For at least two years, and probably even before that, I couldn't turn my head more than a few inches in either direction (nowhere near as far as my shoulders) and I couldn't touch my chin to my chest.

The final straw was when I had a 'flare up' in my tail bone, which lasted at least a year. If I sat in a chair for any longer than five minutes, I either needed something to pull myself up with, or assistance from someone. Sitting on the ground was never an option. Pain of any kind is always difficult to describe, but I remember it feeling as though a hammer had smacked me right on the tailbone (glorious mental image)- a horrible, deep, broken, bruised kind of pain. Despite my existing diagnosis, I had x-rays to see whether I had in fact broken it- nope. The possibility of having an operation to remove my coccyx was discussed as a last resort option.

And then... breakthrough! My specialist put me through the application process to get Government funding for a drug called Humira, which was swiftly approved. The drug is administered via injection- an EpiPen. I did my first treatment myself, with a nurse's supervision, and left with a three month supply- one EpiPen every two weeks.

The next morning after that first injection, I woke up and literally jumped out of bed- it worked in less than 24 hours for me. Being a total girl, I promptly burst into tears and called my Mum- it was a fucking amazing day.

I have been completely pain-free for over a year now, and have had no serious side effects to the drug. The drug itself is absolutely no picnic- it's an incredibly sharp sting, but it only lasts ten seconds. I haven't been able to bring myself to self inject with the EpiPen since the first time with the nurse- Charlie (or occasionally my Mum or friend Sarah) gives me the shot in my thigh once every two weeks, with me clenching my teeth and being a drama queen. But it is so sooo worth it, I can't even begin to tell you how much my life has improved.

I still have the disease, and the damage already suffered by my joints will not go away. But my pain is gone, I can twist my neck and look behind me without turning my whole body around, I can sit on my office chair at work for eight hours a day and still be able to function afterwards, and I can sleep on my stomach again- a luxury I didn't know I had until it was gone!

I don't know what will happen in the future- for now I'm just hoping Government funding for it will continue forever really. The drug costs around NZ$2000 per pen and it's really sad knowing American people on Facebook who are having to fund raise to try and get this drug which I can get so severely subsidised for just a few dollars. I feel extremely lucky.

Join the Super Young Arthritics of Wellington Facebook group here. Anyone in the world is welcome to join, but for Wellingtonians we meet up periodically for beers.


Kate said... Best Blogger Tips[Reply to comment]Best Blogger Templates

This is such a great post Alice. Thanks for sharing your story.I know what it's like to be an auto-immune "sicky", and that writing smoething like this is very brave.

samboy said... Best Blogger Tips[Reply to comment]Best Blogger Templates

I'd heard of AS (I know I'll spell it wrong!) before, but didn't know what it was!

It sounds horrid, I'm glad you have the drugs you need now :) I suffer from aches and pains in my back and neck from an old injury, I'm just glad it's nothing more serious!


Sarah-Rose said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Such a great post Alice.
I first heard about Ankylosing Spondylitis when reading "The Dirt" about Motley Crue - Mick Mars has it, poor dude.
But the book didn't go in to much detail and it was really enlightening reading this. I think I started following you on Twitter shortly after you started Humira so I never knew you when the AS was in full effect. It sounds terrible. I'm so glad you've found something that works.

ms. elisabeth said... Best Blogger Tips[Reply to comment]Best Blogger Templates

this is amazing.
i'm so glad you're pain free now.
it breaks my heart when people can't afford medications needed to live day to day.
if there's a cure or something to make someone's life a little eaiser, it should be available & affordable to those who are in need.


Mary said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Alice, reading this brought me to tears. I have been there and watched you go through your AS journey, always wishing that you had not inherited it from me and that I could take away the pain.I can't change what is - but I am SO grateful that you now live a more "normal" life, in a body that works so well for you. The difference is amazing, thanks to the wonders of Humira and the NZ Government funding of it.

Your Mum xx

Katrina said... Best Blogger Tips[Reply to comment]Best Blogger Templates

my mother has AS and on the injections too. she is amazingly optimistic about it despite she is so much in pain, not as much now thanks to new injections..

its great that you had the gut to share all your personal stuff on here, its so inspiring of you.

thinking of you,x

Therese said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Hey Alice,
Glad to hear the EpiPen has worked wonders for your pain management :)
Reading the beginning of your blog and what you went through in high school is a complete flash back to my good old days and I remember going through the exact same thing. I got sick of telling people why I couldn't participate in P.E. I was the walking pharmacy and I got so sick of the questions that for my 5th form speech assignment I decided to give a speech on Lupus. I did my research for the first time and made it my mission to make sure that everyone was informed, inculding myself. I lined up all my meds for the shock factor to grab their attention and that's how I outed myself and got people aware. If there was one thing I wasn't going to put up with it was gossip and blabber about me being lazy. Since then its like a lucky dip each day, sometimes you win - and theres no pain, and sometimes you lose.
Your brave and such a trooper!
Keep it up!!

Teddi said... Best Blogger Tips[Reply to comment]Best Blogger Templates

auto immune diseases are evil. i'm glad the humira helps. such pain you've had to endure. you have much strength inside & out. that was brave of you to share!

Lost Cabin Vintage said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Oh my! I found you today after you followed my blog - you poor little bugger :( one of my closest friends suffers from the same disease - can you believe it?? Not as severe as you, but I must pass on the details of this drug. I know exactly what it is like to live with pain like this too :( a year ago I gave birth to my son. Afterwards I developed pelvic girdle disfunction, so severely I still cannot walk properly or sit down for long periods of time. I won't even go into my daily cocktail of medications. Trialing prolotherapy at the moment - horrendously painful, but my last resort. Thank you for sharing your story, as painful as it is. I'm so glad you have found something that has worked.
Toni xo