Rare Disease Day

March 01, 2019  •  Leave a Comment

It's Rare Disease Day so I thought today is a good a day as any to write about Scheuermann's Disease. I originally wrote a blog about this back in 2017 but it was on my Patreon which means maybe 3 people actually read it. I'm finding there's still a lot of people who have no idea what I'm going through so thought I'd write this, then maybe 3 more people can read it #optimistic

Scheuermann's Disease affects 2-4% of the worlds population. Apparently it's so rare it only made it onto the rare disease registry in 2017. Its characterised as a kyphotic deformity of the spine that develops during adolescence. Your spine is in 4 sections: Cervical is your neck area, Thoracic is your upper back, Lumbar is your lower back and Sacral is your tail bone. SD causes the abnormal growth of the thoracic vertebrae but it can also be found in the lower back as well. Everyone seems to have their own theory on the causes of SD or how to get a diagnosis. I'm on two "support" groups on Facebook and if someone jumps on to complain about their day (which is what a support group is for) everyone is met with the same two questions: what's your curve and have you had surgery? I don't even know how these questions are important because back pain is back pain. It all sucks and given that this is a disease that only affects 2-4% of the worlds population why is it a competition? Some believe this disease is hereditary yet alot of us are the first person in our families to have it. Others claim the only way to get a real diagnosis is by bending forward or getting an MRI. Both are inaccurate. An x-ray taken side-on very clearly picks up the shape of your vertabrae and in my case all specialists say they can tell just by me standing normally that there's clearly something not right with my spine. 

This shows normal vertebrae compared to Scheuermann's vertabrae.

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When I was around 8 years old we were in a car accident. A car rammed straight up the back of us then another hit them which hit us again. My mum took me to see the doctor because her boyfriend had whiplash and she wanted to make sure I was ok. The GP announces I have scoliosis (apparently could tell by looking at me) and that was the end of it. There was no treatment, no going to see a specialist, nothing. I spent the next six years being told off for not standing up straight, being forced to watch a video of scoliosis surgery at 11 (I don't even know where they got the video from!) and despite instances where I'd have such epic chest pains I was basically in the foetal position the hospital staff in Darwin just declared that as "growing pains". It wasn't until I was 14 I finally got taken to a doctor for my back. X-rays showed I had Scheuermann's Disease with slight scoliosis. I was sent to a specialist who was a total asshole and treated you like you were some bad child wasting his time, told us it was too late I'd finished growing but shoved me in a back brace anyway just to amuse my parents. The brace is best described as being trapped inside of a mannequin. It was a hard plastic that went from your underarms to over your hips and had straps at the back with a chest plate that sat between your collarbones. The only time I was allowed to take it off was to shower but I would be at the schools nurses office most days crying my eyes out in pain begging them to let me out of it. I couldn't take it off myself. My hips constantly had red welts from where it rubbed against my skin. It was no huge shock that when I finally got to take it off it made no difference at all, just like he said in the beginning. 

Now one thing I will point out here is the scoliosis part because the scans I had later in 2015 showed no scoliosis at all. This is something that's actually easily misdiagnosed but not many are going to tell you this. If you stand slightly off during your x-ray due to back pain or just not standing properly it will present as scoliosis even though you don't have it. 

For the most part it didn't affect my life too much but I couldn't get a job. Nobody would hire me because of my back. My brother and I both got casual jobs at Kmart one year but mine was rescinded an hour before I was meant to start because I was a risk factor. My brother told me later he had no idea why because none of the girls did anything and everything was on trolleys, there wasn't any heavy lifting involved. The first job I got was at Camera House and I didn't declare my spine with them, I was being sexually harassed at the job network I was with (some guy kept offering to knock me up during a "course" and everyone just shut their doors to block him out. It did great things for my anxiety!) and desperate to get away from it. I would have taken a job anywhere that week. The problem there though was I struggled every week standing all day because we weren't allowed seats at the front counter (we all had a go asking) and there was there was a serious amount of heavy lifting (frame orders for instance would be 20 kilo boxes because there was boxes inside of boxes) and once a couple of guys quit (which to be fair one was completely useless and just came to work to sit at the computer and play Fantasy Football) and their replacement was some guy with dodgy hips that couldn't do a single thing so I was doing most of the heavy lifting and constantly hurting my back. When the store closed down I hurt my knee a couple of months later so I had a hard time doing anything and then once I had the surgery everything else kicked off. 
 

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Fast forward to the end of 2015, after spending that year in and out of hospital with knee surgery and gallbladder related dramas I noticed my back looked worse than normal. I saw my GP and took in my original x-ray results so I didn't have to try explaining what I have (a lot of doctors haven't heard of SD) and watched as his mouth hit the floor that I hadn't had a check up in almost 20 years. The specialist I saw while I was in high school told me I didn't have to unless I started having pains, so I didn't. I was sent for x-rays and referrals were sent out. The first referral was picked up by Fiona Stanley and I was told there'd be a 12 month wait because I wasn't serious enough to be seen sooner. During the wait my back slowly started having problems and then one night at a gig I had a guy make out like I was being a hyperchondriac, the usual well I can't see anything wrong with you and you've been running around all night so you're clearly fine attitude. For one thing, I wasn't running around. Gig photography is more pacing back and forth a few times, and if I get on stage to try and get a photo of the drummer that's still no running involved. It's standing in a corner out of everyone's way and getting down again. I spend chunks of time either standing around or sitting somewhere and not even holding my camera. It was then I decided fuck this and I got on Facebook about what's wrong with my spine. I've always kept it to myself because I was embarrassed by it and spent years working out how to cover it up. Growing up I was bullied relentlessly over it from school kids (I ended up suicidal) to family friends (my favourite line I'll never forget was hearing "she'd be pretty if it wasn't for her back") that I grew up convinced I looked like the Elephant Man and anything with a hood attached became my best friend.

Early 2017 was when things really took a turn for the worse. Suddenly I was struggling just to walk around my own unit, doing laundry was something that would have me in tears almost instantly and the studio space I'd barely had for 3 months was going to waste and the cherry on top was my two best friends stopped talking to me. I had no idea why at the time, I just knew I was going through a really difficult time and I had nobody for support. I later had other friends ask why I don't talk and as I told them if you're best friend doesn't care what's going on why would you assume anyone else would? The 12 months was well and truely up so I rang Fiona Stanley to find out how much longer my wait would be. They couldn't tell me but recommended I get my GP to send in another referral to speed things along. I started seeing physio then as well to see if that would help in the meantime. After two months of physio and being on Tramadol (which is as effective for pain relief as eating sand) I was told to stop doing my own food shopping because carrying two small bags was killing me, he recommended I see someone privately just to get seen sooner. I found one that had an office in Joondalup and did a gofundme so I could afford to see him. Newstart doesn't cover very much, let alone a $250 visit to a specialist. I was blown away by the few individuals who helped me raise the amount in a day, I actually raised more than I was asking. The downside to this was suddenly everyone was an expert about a disease they hadn't heard of until right then, they couldn't even pronounce it yet they knew what I should and shouldn't be doing. If people weren't telling me "get the surgery" without actually knowing WHAT the surgery entailed I was being told I should get a granny trolley to do my food shopping, because somewhere there's apparently logic that one huge dense weight is going to be less of a burden on my spine than 1-2 plastic bags, especially when you live upstairs and have to lift it up and down buses? Someone else told me I need a bicycle, I lack balance as it is without having to lean over something I'm riding on while balancing bags of shopping off of it. That's a ridiculous amount of strain. Then someone recommended I get a chair for the shower and by then it's like I'm talking to a brick wall. My legs work, my spine doesn't. A chair isn't going to help when it's being upright in general that sucks. You couldn't point out how wrong they were though because then you're just an asshole who doesn't want help. I mean we all have spines, how can so many people not understand how they work?

Specialist Appointment #1

First off I wish I had become a doctor because getting $250 for a 10 minute appointment is pretty sweet. I was told my bone density was fine but overall I have the spine of a 60 year old. He told me to not bother with pain killers and physio but rememdial massage might help give some relief because the pain is from inflammation of the spine and what I need are anti inflammatories. I was told to take panandol and nurofen daily and if they don't help get something stronger. As for surgery he said that was an option but he will never recommend it and said it would be as useful to me as a breast enlargement, which was fine because I don't want it. Surgery involves breaking your spine, in most cases removing part of it (in some cases cadaver spines are used to replace areas), you're fused together and a metal rod is screwed into place. On top of that there's a 1 in 10,000 chance of being paralysed or leaving with nerve damage to one or more areas of your body. I've read so many surgery horror stories on the support groups as well including how people have needed up to 10 surgeries to fix things, some have had to have the hardware removed altogether, one had the hardware break, some have had screws come loose and you can see them bulging through their skin, for many it didn't help the pain and they actually had worse pain afterwards and then there were others who needed their neck fused afterwards when they didn't have a neck problem to begin with. 

I was told my options were to lose weight - now he wasn't saying I was overweight (I did gain weight after the gallbladder surgery but my gallbladder affected my liver and thyroid so weight loss is just REALLY hard) as such but losing weight could help and that he has other patients who are obese and come back a year later complaining they still have pain but never bothered trying to lose even one kilo. I've also seen this in the groups where people will scoff at any doctor telling them to lose weight but it's just common sense, which granted a lot of people don't have, but extra weight around your stomach area is putting pressure on your spine to stay upright. Have you ever seen an obese person who didn't look like they were slouching? I was told to never try a back brace because that will weaken my muscles, try pilates/yoga and do hydrotherapy 3-4 times a week. Apparently walking laps in the pool would be good exercise because the water is covering your spine and making you weightless. I tried pilates but honestly I mostly became aware of how much I needed anger management classes every time I put that DVD on. Hydrotherapy was a tricky one because again, Newstart doesn't cover such luxuries. I'd be looking at $50 a fortnight just to go to the pool and that doesn't cover the travel costs. Anyone who thinks being on jobsearch payments is having some kind of a holiday is sadly mistaken. I went once with my brother and the walking lane was only waist deep and that wasn't going to help so spent an hour floating around with my nephew. I got dropped off at the train station and within minutes my entire spine locked up and I couldn't move. So I haven't been back since.. I'm not saying I need a babysitter, but I also don't want to be stuck on my own dealing with that. It's painful, you can't move and in some cases you aren't sure how long it's going to last. At least with a friend along for the ride you have someone to help you take your mind off things and it's some kind of twisted excuse to sit around and have a coffee. 

About two weeks after this appointment I was at a gig where some drunk idiot decided it would be a great idea to get rough and shake me back and forth. As he let go I almost hit the ground. I left about an hour later from intense neck pain. Physio started being less about my back and more about my neck. My neck pain would be so severe I wouldn't even know my back was hurting. My birthday gig I spent half of it on the floor with an ice pack and then spent a couple of hours in the ER at Fiona Stanley being treated like the Friday night drug addict until she finally looked up their computer system and saw I was telling the truth and waiting to see their specialists. Like if you're dying maybe pick another hospital. That night I was given panadiene forte. I had enough for two weeks which went pretty fast and then I was back at the GP's (not my normal one) asking for a new script. You'd think I just asked him for heroin for the reaction I got. My normal GP sorted it so I could get 3 boxes at a time. At the Royal Show the pavillion had all kinds of crap for sale and I felt like an old person testing out the pain relief stands. The first one was heat packs in different sizes for your back/neck etc My neck was hurting so I tried it. It felt like it helped some but then my back was in pain instead. Then I found a guy selling TENS machines and he commented on how I needed it 3x the level of a regular person so I wasn't wasting my money on that. The next time I saw physio I told him about it all and he told me the brain can only focus on one pain at a time, so it will focus on the one that's worst. In my case that's my neck, so yes the heatpack worked but then that just allowed my brain to realise my back was in a heap of pain too. It's not that my back wasn't in pain it's just that your brain can't multi task. Due to the fact my neck was getting worse and not better he told me to go and get a CT scan which picked up I had arthritis. I made a joke about being old and my GP very sternly said "no, it takes a serious injury to cause that".

The hardest part of dealing with the neck pain was having to give up my studio space when I hadn't even had it a year yet. I had so many plans and shoot ideas and I didn't get to do any of them. 

Specialist Appointment #2

I finally got to see Fiona Stanley almost two years after the referrals were sent out and for the amount of time it took to travel there and back I was in that place for maybe 10 minutes. If that. I didn't even get to see the doctor, I saw some woman who went back and forth a couple of times because apparently their doctors are too good to see patients themselves. All I got told was surgery isn't an option, to stop taking my anti inflammatories because there's no way I'm inflamed every day (despite the fact they're the only thing helping me do the most basic of activities) and when I asked what to do in regards to Centrelink/work I got told to lie. Literally. She told me that if a potential employer asks just tell them the pain is intermittent, except it isn't. As soon as I'm on my feet for an hour (or walking) the pain kicks in, just standing at a gig and I'll end up with either back pain or neck pain. I can't turn my head properly. I can't sit normally as I discovered attempting driving lessons, that was when I realised I always sit sideways in car rides or on public transport so my back isn't actually against the seat and given I can't handle carrying a 1.5kg camera obviously any form of lifting is out..i'd be fired before the end of my first day! 

Specialist Appointment #3

My 2nd referral was picked up by Sir Charles Gairdner Hospital a few months later in September 2018. A woman came out to get me and commented that I looked familiar, I was so tired I didn't really think much of it. Her and another lady took me into an office and asked how they could help me. So, maybe slightly agressively, started saying how unhappy I was with my last appointment that I wanted another opinion. She looked something up on her computer and sure enough, it was the same woman from Fiona Stanley. The upside was after putting my foot in it, this appointment was taken more seriously. The actually physically looked at me and tested my reflexes and discovered I have hyper reflexes and I had to not laugh when the other lady wanted to check and as she crouched in front of me to tap my knee she suddenly moved sideways so she didn't get kicked in the face. She also explained that the reasons I have pain lifting my arms (taking photos, laundry etc) is because as you raise your arms your spine moves with it and because of the shape of mine it's restricted in the movement and straining - that's the dumbed down version because I don't know how else to explain it. Basically Hills Hoists are under appreciated in this country. So I left there with some better information and due to my reflexes I was sent for an MRI to make sure I didn't have a compressed spinal cord.

The MRI was on Grand Final day. I know this because that was on the TV in the waiting room. The MRI itself was meant to take 30 minutes but because I coughed briefly for like a whole minute at one point it took an hour. By the end I felt like I was lying on a knife's edge, it was just so sharp and painful. I don't lie on my back ever, if I do it isn't for long or on a mattress which has some give, so lying on my back for an hour on a hard surface was awful. The MRI results had a heap of big words thrown in there. Basically I have prominent thoracic kyphosis which we already knew, early disc degeneration in the mid-lower thoracic spine, minimal posterior disc bulge at a number of levels, bilateral facet arthropathy (aka arthritis) at a number of levels in the mid-lower thoracic spine with some osteophytosis (more commonly known as "bone spurs", are outgrowths of bone tissue that form around damaged joints. This bone growth is thought to be a compensatory response to bone and ligament damage, and is meant to restrict movement of the joint to protect from further damage. These can cause muscle weakness and spasms, pain, stiffness and numbness/tingling if it presses on a nerve) or sclerosis. From these results I was then referred to the pain management department. This was the first in two years where I felt like there was actually some progress.

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Pain Management Department

I saw them a couple of weeks ago and honestly it was a joke. Now prior to this appointment I landed in the ER with severe reactions to codiene and was told to stop taking it but that nobody can give me anything else and that the PMD will be able to help with that. So now I'm on Panadol Osteo which is affective as Tramadol. PMD make you attend a sort of induction where you're introduced to all the different doctors but you have to attend that to get an appointment. It went from 9am - 3pm and for most of the day listened to how "pain is in your head" and "rewiring your brain" until half way through the day a guy in the front row asked "what about arthritis?". The doctor says oh that doesn't count that's different. Like wtf?! So by the end of it all I knew was there was a minimum 3 month wait to see their physio and all I want to know is if they possibly know something my current physio doesn't, minimum 8-9 month wait to see the occupational therapist, no idea how long before you see the doctor/psychologist etc. I asked a nurse at the end about pain relief and she tells me to tell my doctor that he can call their doctor for advice. I saw my GP yesterday and told him, he looked sceptical and asked me which hospital this was with then proceeded to call them useless wankers who can't do their jobs and said "when did I send your referrals through, like 30 years ago?". I wanted to laugh, I've never seen this side of him before! So 2019 looks like being another wasted year of waiting for medical professionals to do anything remotely useful. 

Everything Else

So in the space of three months in 2017 I went from being able to walk an hour a day on the treadmill at a decent pace to not being able to walk around my unit. Once I was getting better I still couldn't manage more than 15 minutes so I sold the treadmill. Over the couple of years this covers I've gone from being active to not being able to do a whole lot of anything. I went from 1-2 every fortnight and seeing friends to cutting right back and finding that people I thought I was friends with I'm not because I just don't exist anymore. Sadly that became abundantly clear two weeks ago that if I'm not taking photos I'm nothing, I didn't even get a hello from some. I had to give up my studio space which is something I always wanted and despite it being small and a sauna at the best of times it was still a space I could do whatever I wanted in and now that's over. 2018 was a right off for my mental health dealing with this disease, neck pain, friends disappearing, and just feeling worthless. I saw a psychologist for 11 months and most of that was dealing with suicidal thoughts, I never did anything but I had a plan and that was enough to freak a couple of people out. When you're dealing with chronic pain on a daily basis and your entire quality of life has disappeared that's going to happen. As of last December I declared I quit photography until further notice. In the last couple of months my spine has been locking up after being at a gig or just going out and the pain is so severe and lasts for hours that I reached a point that photography isn't worth the pain I have to deal with. Since then I've picked my camera up twice: one for a shoot in my bedroom for a bit of fun where I got to sit on the floor for most of it so it was really easy, and a gig where I spent 90% of it sitting outside. I even used xmas money to buy a polaroid camera because they're super light and in some way I can still pretend to be a photographer. I mean it's still a camera.

In between all of this I've also been dealing with Centrelink. Trying to let them know what I can/can't do (and the can't list being a whole lot longer) I started with one person getting me to fill in a form to see if I need a disability job provider or not. Months pass and I get a job network appointment only they have no idea what i'm talking about and I get sent back to Centrelink. The woman I see tells me to apply for disability and gave me the paperwork. A couple months later I get an email from them at 1am to tell me it's been rejected and to call for more info. I ring up the next day and a woman tells me I'm not "stabilised" and that I can appeal it. I tell her I want to and she lets me know I have 13 weeks to provide more evidence. I wasn't really sure what else I could provide in evidence when I have x-rays that you can't really argue with and specialists letters. Physio gave me all of his notes to hand in so when I did that one woman I spoke to let me know that Centrelink reject all new applications whether the person is worthy or not but also explained that stabilised means you have an official diagnosis and careplan which I do. The next woman told me there's 4 levels of appeals and each appeal a new group of people are looking at it. So basically each time it's going further up the food chain. A couple more months pass and I call up to see how its going and a guy lets me know that I should have heard something by now but has requested they speed it up. Next thing it's almost Christmas and I'm calling up yet again only this time i've got some really rude woman on the phone telling me that I'm wrong and I didn't lodge an appeal and I lodged a request for why I was declined (like that's a pretty big difference and I know what was said!), then telling me my medical certificates say I'll be better within 2 years so I'm not even eligible without knowing WHY I've applied and then when I point out i'm currently waiting to see the pain management department she goes to full bitch tone asking why. I mean you can't just sign yourself up to these things because you're bored but it's always nice to know that someone in a phone call centre knows better than a Neurologist. Allegedly it's in appeal now and I'll probably hear about that in March. I'm not holding my breathe but disability would sure make life easier being able to afford physio, hydrotherapy, joining a gym (weights are meant to help with my back muscles but I can't afford a personal trainer to tell me what's safe exercises or not), getting around (so much of my money goes on Uber or having things delivered)...and just my mental health in general not having to stress every single fortnight about how far I can't make money stretch.

At the moment I'm trying to work out how to stay creative and not repeat 2018 mental health crisis. I'm trying to paint but my brain is having this conflict that if I take up painting again (I studied Fine Arts years ago) that it's admitting defeat with photography. I have enough bits here to do things, I just need to work on actually doing them. My other issue is Centrelink and if they reject my disability claim again it means I have to work. The biggest problem here, other than I wouldn't keep the job very long, is people would see me at a gig and assume I'm fine but the reality is I needed pain killers just getting ready, took more while I was there, and took more when I got home. I was taking 6-8 pills a day if I left the house and that wasn't even that active. I made a point to try and avoid taking them at home because at least here I can lie down and rest until however long it takes to pass. Working would mean taking that many pills every single day, if not more, and I recently found out that apparently 35mg of codiene is a large dose..and I was taking 280mg every outing. To be fair that was the max I could take a day, but I was taking that within about 6-8 hours. On top of that you don't know how you're going to wake up in the morning. Some days I wake up and I can't turn my head properly, twice last year I woke up with a dead arm from a pinched nerve. It's just all very unpredictable and doesn't help the motivation levels to want to do anything. Supposedly once you're in with the Pain Management Department they help you reclaim some of your life to get your back into doing things, but I have no idea how long that's going to take. Maybe 2020 will be my year?


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