Rare Disease Day '20

March 01, 2020  •  1 Comment
Rare Disease Day.

Firstly - this isn't a rare disease post because whiplash is common BUT it's atlanto-axial-dislocation-and-fractureatlanto-axial-dislocation-and-fracture
relevant because the area affected is rare.

So most know that 3 years ago I was assaulted
at a gig and scored epic neck pain for life. Right before Christmas I was sent for a SPECT CT scan on my spine (I've had xray, CT and an MRI so far) from the base of the head down to my hip area to look for "hot spots". Basically the results from that were going to determine if I would have injections for pain relief or just medication.

Last fortnight I got the results, injections are out. You know things aren't particularly good when the spine surgeon is sitting there confused on how you have so much activity in an area of your neck that's rare for injury. Told him two weeks after I saw him last someone felt the need to shake me violently and I almost hit the ground as he let go of me..and here we are. My neck is the worst section of the entire scan - so I'm not actually lying or being dramatic when I say the neck pain overshadows back pain after all!

The atlanto-occipital joint is the area that is causing me the most pain. It's the joint between your skull and your neck (Cervical Spine). This is the best diagram I could find online because I don't have fancy scan images this time around. The atlanto-occipital joint controls most of your neck movement so you can move your head forward/backward/sideways. This is why I get so much pain looking up (gigs/doing laundry), looking down (like at my laptop or painting), turning my head..

Whiplash typically occurs when your head is thrown backwards and forward and the motion can injure bones, discs between the bones, ligaments, muscles...basically everything. Normally you should be better after a few weeks but some of us are super lucky and have to deal with it for life. This is somewhat determined by how you were at the time of the injury. If your injury caused intense pain that came on quickly you're more likely to deal with chronic pain problems. When I was shaken I left the venue an hour later because I couldn't hide the fact I was in tears from how much pain I was in. Flood-Law-Firm-Whiplash-Injury car accidentFlood-Law-Firm-Whiplash-Injury car accident

Whiplash can be caused by car accidents which it's commonly associated with, contact sports like football (tackling) and physical assault - whiplash can occur if you're punched or shaken and is one of the injuries seen in Shaken Baby Syndrome. 

Symptoms of whiplash include

  • Neck pain and stiffness
  • Worsening of pain with neck movement
  • Loss of range of motion in the neck
  • Headaches starting at the base of the skull
  • Tenderness or pain in the shoulder area
  • Tingling and numbness in arms
  • Fatigue and dizziness
  • Tinnitus
  • Blurred vision
  • Memory loss
  • Depression

Since this injury I've had random mornings where I've woken up to a dead arm and if you're lucky it's back to normal the next day, I can be fine and turn my head and get the sharpest pain imaginable in my neck, I can have a week at a time of neck pain so intense I literally can't do anything. To be blunt - it's fucked. I spent the first year while visiting physio every other week thinking these were issues with Scheuermann's Disease but in reality it's my neck. 

Most articles on the topic are about dislocation but my GP said that's definitely not it and on further investigation I'd be dead if it was. Dislocation of that joint is also known as internal decapitation but can still be caused by similar accidents.

The surgeon told me to go see a Rheumatologist while I wait for Pain Management and that between the two they can get me onto disability. That was the basically the point where it hit me and I spent the next hour in shock just walking around the shopping centre waiting to go home. This injury is what can get me onto disability..not the spine deformity. 

So now I get to spend more money I don't have on specialists and at some point I have to try and put money aside for Pain Management. I'm hoping that won't be many appointments because the first one is $330 and appointments after that are $185. Medicare doesn't cover much of it despite popular belief. My psychologist asked me how do I afford to pay for all of these appointments on Newstart. I lol'd. Told her I learned budgeting off my mum but it only gets me so far. $430 a fortnight just doesn't stretch far when $170+ of that goes to one appointment. I don't have a social life (though a friend actually came over recently and it was awesome just chilling in my loungeroom and chatting and watching the BROS documentary for a few hours) and my pay goes towards appointments, bills, then I work out what's left for food. She asked me what my vice is - I said Coke assuming I can afford that. Quick, someone tell the Prime Minister I use newstart to buy soft drink!

The upside to all of this was I had my first group photo shoot. Normally I hate the idea of working with other photographers because I do have a superiority complex at times where photography is concerned. I also really hate being watched because anxiety will take over and I'll screw up. I'll suddenly look like I don't know what the fuck I'm doing in the studio. 


I was given a coffin in 2017 but I never got to use it and it's been sitting in my storeroom since giving up the studio space. Meeting Olivia last year was great because being a goth queen she loved the idea of a coffin shoot. You have no idea how hard it is finding models who aren't scared off by most of my ideas. From here this is just going to sound super selfish really. Initially I thought doing a group shoot would help in regards to moving the coffin around, there was no way in hell I could carry it anywhere so I wondered who might be interested in shooting with it and helping us move it. Turned out the group shoot idea was better in more ways than one. At the shoot itself I lost my shit a couple times at the lights which thankfully the others just found my tantrums funny. I don't think anyone takes a short person seriously. Having another photographer meant help with lighting because they know what they're doing but my back started to hurt early on - left overs from the day before's shoot in my bedroom I guess where all I did was step up and down a 2 foot ladder but I was in pain for HOURS later - so I had to sit down. I was just scared to move any more because I've gone out of my way the past year to avoid any situation where my back locks up. Having an extra photographer meant I could just pass something off onto them. I didn't have to feel like I was letting the model down because there was still someone there to take her photo when I couldn't anymore. It also put me in a situation to work with a new model I wouldn't have necessarily done on my own. I always work with the same two people because I hate wasting time on new people just to find out they can't even strike one decent pose. I met a lot of those in my tafe days. I like models that know how to move and you don't have to direct every single pose and movement and you can just offer some suggestions. I also hate models who refuse to take direction..like you're the model that's literally your job! So meeting Chantelle was great, we only did a few shots and I didn't say shit to her (also common trait of mine during shoots) but I didn't have too. She knew how to pose. I even took Frank along for some photos. Frank is a skeleton and he loved it, though to be fair he always looks happy. I think he has Resting Happy Face. So what I'm saying is, group shoots might save the day on some occasions. Definitely keen to do more with this group. I'll never do photography professionally again but I'm still trying to do some personal projects as my body permits. Watch this space! 




Pj Monroe(non-registered)
Hey, it's that horror/ anime dude from Twitter that's also 1. Of probably 1000s who are secretly in love with you, sooo here's a coffee..
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