Surrounded By Idiots - A Health Update

June 07, 2019  •  1 Comment


New selfie. Whatya think?

I've been quiet lately on social media - well where photography/art things are concerned and that's because I needed some separation. I'm losing my shit a lot lately and I'm not sorry. People are constantly pushing my buttons. For one thing there's just nothing amusing about chronic pain or deformities and having someone laugh or make jokes about it wasn't fun when I was a kid and it's still not fun now. That just makes you an asshole. It's just plain insensitive. Then there's the ones who think your life isn't as important as their's because you don't work so you can just travel to them to see them. Or the ones who will sad react all of your posts then five minutes later and super surprised to hear you're in pain and no you don't want to do some photoshoot you have no interest in. Like if I'm picking up my camera it needs to be worth the pain. This is also why I've only picked it up about 4 times this year. Many don't understand that I can go weeks without seeing or hearing from someone now. They'll compare it to themselves how they don't either but everyone has a job they go to with coworkers, husband/fiance/girlfriends/housemates they come home too, band aren't actually alone. I've forbid my friend Karen from ever getting sick again because it crippled my social life. It's like not being out taking photos of people has made me invisible to everyone. I'm not useful anymore. I just want to smash things in frustration...which one of my last paintings did involve a hammer and I need a much bigger canvas for that to be truely therapeutic. Or pretend to sleep. With my pain management appointment finally here I stupidly looked at my calendar to see how often I see people or get out and realised it had been 5 weeks. So needless to say depression took over that week and I didn't get out of bed. Figured what's the point? All I want to do is be out and taking photos and I'm stuck trying to get help from literally anywhere and getting nowhere at all. I used to always wonder how people can have an existential crisis when nothing is even wrong in their lives, but I'm definitely having one right now. So I've divided the shit going on lately into two parts: Centrelink and Pain Management. 


This has been an ongoing process since January 2018. Honestly anyone who thinks getting welfare is a piece of cake and just one huge holiday is sadly mistaken. Getting Newstart is easy to get but the rest not so much. If you choose to study the amount of paperwork is 3x as much. Disability so far is the hardest. I'm hearing stories that include a man being able to get Carers Allowance so he can care for his wife but his wife isn't entitled to Disability. Stories that just don't make sense. About three weeks ago now my disability claim was rejected. Not a huge shock I was expecting it but the official rejection gave me a score of 10/20 which I was surprised I got that much and gave me some hope that maybe the added info I have now may help. To qualify for a disability payment you need a minimum score of 20 points. Basically they acknowledged my Scheuermann's Disease (which I wasn't sure they would because it's not on their list of approved disabilities) and asthma - that I'm not even sure why yet because it's not in my application. Arthritis is. The only time anything asthma related is mentioned is in my mental health care plan where it lists all of my medications, two of which are puffers. Right now I'm assuming it's one very awkward typo that they made three times. 

So here's how the whole process worked...

  • Clerk 1 tells me to apply for disability and gave me the paperwork to get filled out. 
  • I hand it in later with x-ray reports, CT scan reports, reports from spine surgeons/neurologists and physio, a report from my knee surgery, health care plans...
  • About 3 months later I get an email at 1am that it's been rejected and I can call for more info. I do that and get told I'm not "stabilised" and that I can appeal, so I do.
  • Now due to how much info I'd given them already I had no idea how else to prove my situation so my physio gave me a years worth of notes to hand in. Lady #1 that I speak to lets me know that stabilised means you have an official diagnosis and have been treated. Lady #2 tells me all new applications are rejected so people have to appeal and try again and not to give up. I mean she was even nice enough to ask me if I needed a seat while she sorted it all out. She also let me know there are 4 tiers of appeals and each time a new group of people see your application.
  • Fast forward a couple months and I'm told I have to ring the complaints hotline to find out what's happening with my application. I ring up and a guy tells me I should have heard something by now but makes a note for them to speed it along.
  • 7 months later and it's the week before Christmas and I'm calling again. This time I get some woman who is rude AF telling me just how wrong I am, wouldn't let me speak and tells me I never lodged an appeal and that I'm not even entitled to disability (without knowing why I applied) because of my medical certificates (which I'm not even meant to have to lodge). She just kept berating me that I ended up crying for most of the phone call. If she's having a bad day that's great, maybe don't take it out on others. That's 7 months of my life lost to an appeal that allegedly doesn't exist. She then claims to have lodged an appeal for me. Merry Frikkin Christmas.
  • March 2019 I have a Job Capacity Assessment for the appeal lodged in April-May 2018, the appeal I allegedly didn't lodge. She lets me know that this interview is only for the appeal period and anything that happened after June 2018 can't be talked about. So if you have further medical evidence tough. She tells me it's in my best interest to just reapply rather than appeal because I'll be seen too faster (especially since it's taken a year for the appeal to happen) and that way I can supply new info if I have it. It's also in Centrelink's best interest I don't appeal it because if the decision is overturned I would be entitled to backpay. I don't really care about that. This isn't a greed thing for me, I don't care about back pay but the extra money on Disability compared to Newstart each fortnight would mean I could actually attempt the physical therapy I'm meant to do. That's all I want. 
  • May 2019 rejection letter turns up. The upside is they acknowledge I have trouble kneeling and carrying things but I need to prove I can't do overheard activities. Honestly I would think this was common sense if your spine struggles with one thing you won't be able to do the other but apparently it needs to be actually written in great detail. 

One of the biggest issues I've found with the application forms are three of the questions ask you about your illnesses, the treatments you've had and how it affects your life which they then later turn around and tell you they don't want your word for it. These are questions that should obviously be stating that they need to be filled in by a doctor and save time and hassle. On top of all of this, I lodged a complaint against the rude Centrelink woman from December  straight away because I knew full well that I was told I could appeal and I asked for that to be done earlier in the year. They finally tried to contact me last week - SIX MONTHS LATER. Just how many complaints do Centrelink get that it takes them six months to get to yours? The groups I'm in have all mentioned seeing a Rheumatologist and that was something I was planning on talking to my GP about when I next saw him. I recently found out there are 100 types of arthritis. I knew of 2. I thought this may help pinpoint my problem areas and he may have better advice for treatment. After yesterdays appointment this is seriously looking like my best option. My only other option right now is to see if Neurologist appointment #2 bothered to send a report in. She went into detail on why I have pain when I do overheard activities with lifting my arms, but it's really hard to explain. It basically comes down to the shape of my spine being restrictive to normal movements. I'm hoping she wrote about it and doesn't just comment on me looking youthful again (that's on my first report. Not even joking.)



The public health system has a bit of a wait. It took almost two years for my referrals to finally give me appointments. First one was with the neurologist at Fiona Stanley where I saw the physio instead. She was awful. I wasn't in there long where her whole advice was to do some random exercise which I didn't remember five minutes later and to lie to potential employers that my back pain is intermittent when it isn't. I'd get fired on the first day if we're going to be real. 

Appointment #2 turned up a few months later at Sir Charles Gairdner. I rocked up, was too tired to care because it's a 90min trip to get there and when the lady calls me in she asks how they can help. I bluntly told her I was far from impressed with my last appointment and want another opinion. She thought I looked familiar and long story short she was the same woman from Fiona Stanley. The upside is she took this appointment more seriously and actually listened to me. She explained why I had pain when I do things like laundry and I'd love to share that info but I don't know how to explain it. It basically comes down to my spine shape being in such a way that its restricting certain movements that come easy to normal spine people. She tested my reflexes and due to having hyper reflexes sent me for an MRI because she thought maybe I had a compressed spinal cord. I can't lie on my back for long so a 20-30 min scan became an hour because I coughed for 30 seconds. By the end I was struggling to lay still because it felt like I was lying on sharp blades. That picked up osteoarthritis and other things but nothing serious like a compressed spinal cord. At most I can randomly wake up with a dead arm which has happened about 3 times now and that's from a pinched nerve somewhere along the spine/neck. From there the physio referred me to the Pain Management Department. I finally felt like someone was doing their job and I was going to get help!

Five months later I had the Pain Management induction. This was 6 hours of sitting in hard plastic seats with them telling us the pain was in our heads. Literally one after the about the 4th time of hearing it my inner monologue was sounding a bit like Samuel L Jackson. 


They were talking to us all as if we'd all had some injury/surgery we're all recovering from and will be fine in a couple of months and how the pain receivers in our brains are the same ones for depression so anti depressants cure chronic pain. Which I guess is cool if that's what your problem is. Four hours in and the guy in the front row asks "What about arthritis?" and the doctor says "oh no that's different". Insert more Samuel L Jackson monologue here. At the end we're given a form where we can request who we want to see so I just ticked all of the boxes: Doctor because I'd like some pain killers I don't have severe reactions too, Physio incase they know something my physio doesn't, OT because they can help me move and Psychologist because why not. The problem here was there was allegedly a minimum 3 month wait for physio and a minimum 9 month wait for OT. 

Yesterday I had my appointment with the doctor. My appointment was almost an hour late even though I was the only person there and then I didn't even see the doctor listed on my letter. I get a woman who just smiled and had her condescending pants on. She had her mind made up before I even entered the room - I DON'T HAVE PAIN, I HAVE DEPRESSION.

What. The. Fuck. 

This was followed with "Everyone has arthritis" and "Everyone has kyphosis" and my favourite "Everyone has a curved spine, it means nothing". I stood there telling her the doctor at the induction said anti depressants don't help arthritis. She just smiled and shook her head no. Made me take off my shirt where she informed me my back looks just like X, Y and Z's (meanwhile other specialists have commented straight away they can tell I have a problem just looking at me with all my clothes on!) and how everyone's spine has a curve. I'm fully aware of how a spine looks. I've seen enough of them. I even did a project on spines during my fine arts course and my GP at the time let me borrow some anatomy posters. The photo below is an MRI of a completely healthy spine on the left with mine on the right. They are SO SIMILIAR (please tell me you caught the sarcasm there?).


While technically Scheuermann's Disease is discussed as Kyphosis/Lordosis because at the end of the day these are very different conditions. I shouldn't have to explain this to a person who allegedly went over my files and checked my MRI's (which apparently look totally normal). Kyphosis is generally from slouching or being overweight and some physio or weight training can correct it. We have a whole generation that slouched over computers, playstations and now smart phones. Sit on a train and everyone is looking down at their phones. It's really no surprise that kyphosis would be something common. Scheuermann's is a growth defect where the vertebrae grow incorrectly forming the curve but not everyone with Scheuermann's looks alike either. There are people who look completely normal standing up but if they bend over there's a strange hump just randomly in the middle of their spine. Others have a prominent 'hump' right at the top. I suppose I'm lucky that from the outside it's just one big curve but I'm super self conscious of it. I notice it when I see my reflection and it's the first thing on my mind when choosing what to wear if I leave the house. I'm not even comfortable taking a photo of myself and I've considered it for the purpose of my blogs. 

So with my shirt off she got me to raise my arms while asking where things hurt. Pain doesn't kick in within a second of doing something but I felt like a circus monkey and completely exposed. Then I had to take my shoes and socks off while she got me to walk to the door and back, then again but this time on my toes, then again on my heels..what this has to do with my spine I don't know. Then I had to lay on the bed and raise each leg and her big evaluation was "you're just unfit". Move over's a bit hard to stay fit when you can't exercise properly. I'd love nothing more to resume to normal activities and lose weight!

The entire appointment was just her harping on that I don't have pain, I'm depressed and unfit and I need medication. She even pointed out my fidgeting as if that proved her case. Who isn't nervous seeing a new doctor, especially when they haven't had the best luck with them? That literally proves nothing. I was also pissy but she wasn't picking that up at all. She then randomly asks me if I had a traumatic childhood, not sure what that has to do with anything but said yes and randomly threw out one particular thing. She then asked me if I was abused. This must have been the first time in my life my poker face was on because she wasn't picking up the fact I was biting my tongue from snapping, I've been told I look like I want to punch someone over less. I actually have an aunt who firmly believes I was, she let me know this when I was 29. I was just dumbstruck, what do you do with that kind of information just blurted at you? I've blanked a large part of my childhood and only remember bad things so I'm pretty sure I'd remember that if it happened. But mostly I wondered if she REALLY thought that why didn't she do something? I mean she helped have my stepdad arrested because she thought she saw him on Australia's Most Wanted when I was 11. Clearly she has no problem dobbing people into authorities. Nope, this doctor is dead set that I could be wrong on that too. She wouldn't listen to anything I said including how I was very fit before everything suddenly got worse. I was walking at least an hour a day, I was out photographing concerts and events, even just a normal photoshoot would have me looking like I might be on speed between being on the floor to being on the furniture. Then in the space of a month I was struggling to walk around my own unit. That improved but I still couldn't walk more than 10 minutes on the treadmill after that. Walking now is dependent on the surface and if I'm carrying anything or how I woke up. Then around mid last year problems started increasing and the last few months my back would lock up. Until then it had only happened once at my first go of hydrotherapy. Since cutting right back on how much I do I have managed to avoid that since January but the area that locks up was also the area that the MRI picked up osteoarthritis etc so I had an answer for what was going on there. As far as she was concerned nope thats not a physical problem something clearly happened in my life to trigger my depression off. Literally NOTHING happened in my life. It was same shit different day. I was super excited to have a space to work in and working on project ideas. I guess I just couldn't handle the excitement of it all.  This woman literally believes I need a psychiatrist and anti depressants. I gave up talking. She asked me if I had anything to say and shook my head no. I'd have a better conversation with the wall. Not only was I irritated that she wasn't helping me with my pain, but my GP and psychologists I've seen have all respected my decision to not want to take anti depressants. I was put on them when I was 20 and I barely remember that year. I know they work for some people and that's great, but I know what works for me. I know when I'm hitting a low point and I'll get someone to talk too. I have severe depression but it's manageable and doesn't stop me from working or anything else. 

She eventually gave me a script for pain killers and emphasised how this is just a bandaid on my situation and won't actually help me...and not to abuse them and wants to see me in 3-4 weeks. I've NEVER abused a drug in my life. I've had multiple occasions where the pain has been severe and I forget I have pain relief in the house, plus you also don't want to move to get them. If I'm at home I'll avoid them as much as possible because at home I can rest til it passes and I have heatpacks. I don't even remember I have alcohol in the house. I have a bottle of vodka I was given 4 years ago untouched. Wait, 2..addiction is clearly something I never have to worry about. 


So next Monday I get to see my GP again. That guy is a total legend except he has a tendency to forget how old I am and will think he has the wrong records up which is just amusing. Previously when I saw him for something and I'd told him about the Pain Management induction, all of the "it's in your head" talk and how long the wait times were he sat back in his chair with his arms crossed, scowled and asked which hospital it was again. I tell him and what left his mouth almost had me laughing because not once in roughly five years I've been seeing him have I heard him swear - and on Monday I get to tell him he's right. They are wankers who can't do their jobs. 




I read and heard it but I don’t believe the incompetence of the specialists you have to deal with. So many people who do t know what they are doing. Love ya Xoxo
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