2019 is basically over and I'm kinda happy because this year dragged on. So I thought I'd do my final blog on the year about spine things. The short version is don't bother going through the public health system. It's a huge waste of time.
So just to refresh: all of this stuff has been going on since the end of 2015. Two referrals were sent out. It was taking so long I paid to see the first specialist (thanks to gofundme and some generous people!) in April 2017. He told me if I was still having issues in a year I could come back. 2018 I finally had my referrals picked up but I never saw an actor doctor for either of those appointments - I saw the doctor's physio. 2019 I saw Pain Management (also public system) who deemed me completely normal. So I paid to see a Rheumatologist thinking I'll just save time and see someone who directly deals with arthritis. Also a waste of time. The best he had to offer was sending me to a sleep clinic because I've slept badly (or not at all) since 2006.
And now we're here.
I've reached a point now where I'm physio isn't even helping me and I was so frustrated I decided to go back to Spine West as my last ditch effort for a miracle. I'd just had my 2nd week of not being able to walk or stand in a month so I sent them an email and got offered an appointment a week later. I was shocked at how quick that was but couldn't take that one, but still managed to get an appointment for this year. I saw him two weeks ago. I wasn't in his office long, I gave the condensed version of everyone I've seen, handed him my MRI and CT Scan of my neck and he wrote up a form straight away before I'd even got to how bad the pain was getting for me to get a specialist CT scan at the hospital. I had the scan on Monday. That was a bit tricky, they inject you with this stuff that basically makes you radioactive and I was meant to go away for 3 hours and drinks heaps of fluids while also avoiding children and mothers - do you know how hard that is on Christmas holidays? I won't find out the scan results until February but I got home to find an email from Spine West to let me know they had already referred me to Pain Science at Royal Perth Hospital that morning (before my scan took place). I should have gone back to him so much sooner instead of wasting two years in the public health system.
But back to the public system...I had the Sleep Clinic appointment too. As it turns out they can't help you if you don't sleep. LOL right? They can however let me loan a watch for $250 that's like a fitbit and can monitor when I do sleep at home. I'm meant to come up with $250 by January 10th. More LOL. My whole like is a LOL moment. For those into astrology, I was born on The Day Of Tragicomic Controversy. More lolz. I see doctors more than literally anyone else I know. I felt like maybe I should get my GP a xmas present for dealing with my shit on a regular basis. I didn't, I don't have any money.
So 2020 at least looks like possibly starting off well. Spine West told me depending on what the scans show up, if there's more than 2 diseased areas I'll be looking at medication otherwise if it's 1-2 I'll be trying cortisone injections. I'm no stranger to those, not a huge fan of the idea of needles in my spine though. I had a cortisone injection in my shoulder after an injury which worked awesomely, the ones in my knee however I'd have to say were useless. At best it made my knee all super red and swollen. That's it. BUT some actual progress in pain relief is happening and I'll try anything thrown at me. Being able to go to the shops and back or to be able to stand at a concert for 3 hours without being in tears will be fantastic! I won't know how all of this will go as far as continuing photography yet but I like to hope I'll be able to pick my camera up more than 9 times like this year. I haven't picked my camera up since before Halloween. Sadly nobody can see the photos I took then.
Other than that I'm back at the psych's office. I got told to go back by the exercise physio a couple months ago so I have someone to talk to about pain if nothing else. I haven't seen her in 13 months and I apparently talked so fast in the first session she told me I clearly had a lot to talk about. I told her about Pain Management's brilliant assessment of how I'm fine and I just need a psychiatrist for my "trauma". She was as baffled as I was on how she came to that diagnosis. For lols we're humouring the idiot woman's advice and she asked me about my childhood. That was awkward and filled with silence. I won't go into it but I got told for most people their earliest memory is around 3 or 4 years old and my earliest memory is when I was 8.
I am meant to come up with a plan for my life so I'm not just sitting at home doing nothing everyday and that I need a goal to achieve and structure. I get her point but you have no idea how hard that is. For one thing, me in high school didn't think I would be alive past 30 so I never aimed that high to begin with and my 20's were spent sociophobic and then caring for my mum. All I really wanted in life was to be like Andy Warhol. I LOVE him. I wanted a warehouse I could work in and have exhibitions with maybe bands and fun times. Which is a wild goal to have when you have severe social anxiety. The main goal was I wanted a studio space where I could paint the walls or create sets for photo shoots and I wanted to have an exhibition when I had enough photos I liked. I did try at one point and contacted a couple galleries but one wasn't happy with an exhibition of only 3 people. I have no idea why. Between the 3 of us we had enough work to fill the small space. So that didn't happen. 2016 I finally had my first studio space, which was too small for what I really wanted to do but it was a step in the right direction only I had to give up a year later because neck pain was too much to be able to work in there. Photography has decreased rapidly since then. Any goal I had is dead. My goal now is to get through each week. Between no money and pain I don't know what I'm meant to do with my life. It's hard making plans when any given day/week you're in severe pain or can't walk for no reason. I've spent the last two months trying to get back into drawing and it's hard. It's been so long since I've done anything and it's all pretty mediocre.
I told my psych that and she said great, set a goal - how? Firstly, I have to be happy with what I'm doing. I don't have a style of my own and I'm just trying to practice for now so I can get to the point of developing a style and coming up with my own ideas and not using prompts found on instagram. I'm a long way off achieving anything! The most I know is eventually I want to get back into printmaking but right now I don't have any ideas yet. I looked at drawing classes to maybe kickstart something but they're $300 for 6 weeks through TAFE. Something Art Therapy related could be cool too because I don't know how to express myself.
So 2020 shall be interesting. I'm never going to have money between psych, spine west and the private pain specialist (but really what else is new?) but I might get to be pain free so I don't care! If anyone has any suggestions on how to have a functional life while living with chronic pain please leave a comment or message me. I'd love to hear other people's stories!
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