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Shave For A Miracle
Rebecca Jones
Shave For A Miracle
Story
25 years old I'm kneeling on the floor changing Isabelle, my 3 month olds, nappy.
When I try to stand up my knees start to scream at me, ' stop right there Missy! Move another inch and you will never get to use us again!'
?
Well obviously I have just been sitting wrong and now I just need to shake it out.
Or possibly (god do I really need to think this?!) old age.
Lets just forget about it, that's much easier.
Hanging clothes on the line and my arms are screaming at me to put them down and just chuck the stupid clothes in the dryer.
Hmmm.... They have never really had a problem hanging clothes before and now here are my arms swearing at me?
Maybe their just having a bad day.
Sitting and watching tv after kids are in bed and BAM! I can't breathe.
ok this is normal, maybe. Yep I'm perfectly fine.
Oh god, obviously this is not normal! It hurts! Am I dying? Is this what a heart attack feels like? But I'm only 25! Little little breaths, that's it Bec you can do it. Ok chest I give in. Obviously your unhappy with me about something, we will go and talk to someone tomorrow about it if you can just give me my breath back. Oh wow - your really unhappy aren't you. Little breaths, little breaths. Oh god I'm dying.....
My body has deserted me.
Well I now realise it never really liked 4am wake up calls to go rowing, or competing in Martial Arts where it may have been picked on a little. Or running, or swimming, or athletics or any of the other things I thought it was fun to do together.
But I thought this was what we wanted? I thought if I kept you fit, you would keep me healthy. Why have you decided to give up on me and punish me now. I really don't understand. This pain - this pain is like your crushing my soul. I just don't know if we can be together much longer body, if this is how your going to treat me.
Bring on the doctors.
Needles, blood tests, scans, X-rays, MRI's, CT scans, Hospital visits, more needles, more scans, more doctors. Finally finally, finally from being told that it is all in my head, to the best one which was 'if you dont feel pain it means your dead' (that was one very special doctor.....) (sarcasm)
It has come down to a little genetic marker called HB27.
This tiny little marker is out to ruin my body and life.
So what does this mean? What can two little letters and two little numbers possibly do?
Ok so it's a type of Spondyloarthritis. Hmmmm. Interesting.
It is somehow involved with the immune mechanisms in my body.
And what your now telling me is that my joints mainly my spine and pelvis can become FUSED.
Stuck together, no movement, lots of pain.
Oh and your also telling me it could possibly affect my shoulders, ribs/sternum, and knees.
Well isn't that mighty fun.
So your the bully ruining my life. Your the one that is stopping me from running, walking, playing with my babies, going out with my husband, chilling with my girlfriends, and being happy.
Your the one that makes me never have more than two hours sleep at a time, and won't let me travel in a car for more than 30 min without severe pain. That makes me wanna curl up in bed every single day and cry my eyes out until there's nothing left.
That instead of having more children, I get to have a wheelchair instead.
Well ok we have found you now and I would like you to leave. Obviously if they can track you down through all those little blood cells and stuff like that, well obviously they can get rid of you. How hard can it be. Gees just give me the laser and ill zap you myself.
Sorry what was that? Did you just say NO and laugh at me??
Excuse me but this is our body not yours. Sorry body for blaming you. Yes I shouldn't have jumped the gun but what was I meant to think?
Well - can we work together now? You know lets get rid of this pain together because in all honesty it's just dragging us down and we don't really need it.
Now your telling me No as well? I'm sorry - I thought we were on the same side of this war. What's that? Hmmmm ok so what your saying is, is that this little puny genetic marker that took nearly a year to find and has caused so many untold problems is here to stay? That there's no cure? No way to get my old life back?
But that's not fair.
I don't want it - never have, never will. I want it gone. I want my life back. I want my legs back and I want my neck and shoulders and ribs back. I want to go running and chase my babies and I want to go fishing and jump in the water off the edge of the boat when the mood strikes. I want to dance again. Oh I miss dancing. I want to wear my high heels again and make my legs look a mile long! I Want to have a margarita and not be worried about passing out from the combination of drugs and alcohol. I don't want to be sick once a week from my medicine.
I want to ride a horse, get my motorbike licence, climb a mountain, swim in an ocean, walk on the cat walk, and dance like a loon.
I want to be happy.
And your telling me No.
Just like that?
So your not just crushing my soul from the pain, your also breaking my heart about the future.
I can't do this - really I can't.... It's just not fair....
Excuse me body but if I want to wallow in my own self pity then I will.
I know your right - it's really not the best plan. But what is?
Its not like I can shave my head and raise a whole heap of money to find a miracle cure and get our life back is it?!
What's that? You think that's a great idea?!
So you think that if I shave off my beautiful hair, the one thing I actually have control over and can do with what I want without so much of a niggle of pain, people will listen and realise we need to raise money for research. That maybe, just maybe if we can raise enough that there could be a miracle and the reasearchers could find the on/off switch?
Well I suppose Im game if you are.... Actually maybe I'm not that game. I mean it is MY hair that we're talking about here.
Though I sure as hell don't want to be stuck in a frickin wheel chair for the rest of my life.
Ok you win.
Let's put this out there and see what happens.
Let's see if we can make a miracle happen.
Please share this with your friends and family. Not just to help me, but to show others out there that have this disease that they are not alone.
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Arthritis Australia
Arthritis Australia is the peak arthritis organisation in Australia. It is supported by affiliate offices in ACT, New South Wales, Northern Territory, Queensland, South Australia, Tasmania and Western Australia. Arthritis Australia provides:
- provides support and information to people with arthritis as well as their families and friends
- promotes awareness of the challenges facing people with arthritis across the community, and to leaders in business, industry, and government
- funds research into potential causes and possible cures as well as better ways to live with arthritis, and
- aims to keep health professionals such as physiotherapists, occupational therapists, and community nurses informed
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