<div>I was diagnosed with Suicide Syndrome, CRPS, Complex Regional Pain Syndrome, whatever you want to call it. The basic summary is it took my ability to walk and now I am homeless as a result.
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<div>But let's take it back a second so I can tell you why you should care.
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<div>I have gone by many names but you can call me Griffin, Canine, Dyre Chihuahua, or I guess WheelingOurWayOut if that goes anywhere. Before all of this I was already disabled, I had to quit my job back in January, but I have long since learnt to make the most of my abilities I have left. I had finally gotten back to my life's passion, a circus apparatus known as Teardeop, and booked my drag debut for the 17th of July.
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<div>It was the 13th of June, I believe, that it all got flipped on its head. The night before I had been in agony but just wanted to go to circus. I had barely done more than warm up but I knew I had made a mistake and left early.
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<div>I didn't sleep.
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<div>My doctor was concerned about bone sepsis given the severity of my symptoms, and I was sent to the emergency department. I got discharged after a few hours with nothing being done.
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<div>I was sent right back two days later by another doctor at the practice, who was horrified I was sent away in that state and gave me a referral letter asking them to perform tests. It took 6 hours of laying on the floor and the pain worsening until I was screaming before I got a bed, and I had to invoke Ryan's Rule to get my testing done at all.
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<div>When I was getting discharged after hospital trip number 2, even though I was worse than I was when I got there and couldn't stop screaming and couldn't use a bathroom without torturous levels of pain, I thought I had gone through the worst day of my life. I had no answers but I knew something was very, very wrong.
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<div>I was ready to find the answer myself, like I had like with the majority of my previous diagnoses. Because I am unfortunately basically a collector at this point.
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<div>I had remembered something I must have watched online when I was like 10 about something known as Suicide Syndrome. I immediately found an article called 'CRPS - A Four Letter Word from Hell' and both felt exceptionally seen and extremely demoralised.
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<div>I had my doctor write me an extra good referral letter back to the emergency room so I wouldn't be sent away again. I remember that day up until a point. I remember being in the waiting room and having screaming fits overtake my body that I could not control from the agony. I remember how terrifying and disorienting it is to wake up still screaming after passing out from pain, no idea where you are or what is causing such extreme suffering.
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<div>Then, after my initial examination, while I was being transferred back into my chair I passed out a little and went limp. One of the medical professionals roughly grabbed my bad leg to try and force me back into the chair.
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<div>I am not sure whether or not it was that I was grabbed so roughly or me having the hardest fall of my life with my shins slamming into my footplate, leaving me with bruises for days. And I do not bruise. But whatever it was has caused me 10/10 pain that has not gone away since in my calf and significantly worsened the impacts of my CRPS on my lower leg. I am also pretty sure this is what caused the dystonia to develop in my calf, which is the reason I cannot walk at all anymore.
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<div>This was what actually, so far, has turned out to be the worst day of my life.
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<div>I went to a private hospital after that and was started on Lyrica and given referrals for further examination. I was begun on 75mg and am currently at 225mg daily. Everyone who I have spoken to about Lyrica has nothing but bad things to say because of the insane side effects, even though everyone I have spoken to has only experienced low dosages.
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<div>If you do not understand the hell that is being on Lyrica the best way I can describe it is that it is as though someone has sawed open my skull and has grabbed fist fulls of my brain. My memory is Swiss cheese and I am not able to hold more than one object at a time or handle carrying anything while moving. I have always had ADHD among other memory problems but this is a special type of hell.
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<div>It was Friday last week that I finally got to see the pain specialist and, as he put it, this is a red hot case of CRPS.
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<div>It both felt great to have a doctor understand me, and really really not great to know it is that and I am likely going to be stuck with this for the rest of my life. Early intervention is critical for giving me the best outcome and I will be honest that I have no idea how I am supposed to navigate CRPS generally, let alone with homelessness on top.
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<div>I am stubborn and refuse to let anything stop me, but I have really been stopped in my tracks. Honestly the worst part of all of this that going into a wheelchair accessible hotel taught me that I have not been nearly as bed bound as I have been forced to live, I have just been needing more accessibility. I have just been needing to use my wheelchair.
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<div>My carer only offically began to be my carer a few weeks ago and we had barely begun to get through the backlog from years of medical neglect when all this happened. I did plan to do a GoFundMe at some point for a custom wheelchair because I can feel this one deteriorating my body, but that was going to be in a few months.
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<div>I am tired. I didn't want to do this. I feel like no one is going to help me and this is just going to be an extremely demoralising exercise.
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<div>I was homeless last year and turned to sex work for a little bit, but I can't do that again. I lost my job but made it work by putting my loan repayment on pause/a reduced amount and using my credit card and getting myself into an extra 3k of debt on top of my 17k top surgery loan I am still paying off. I had paid off over 7k of it but with the interest especially with putting it on deferral it's back to 17k.
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<div>I am on the DSP earning $1075.30 AUD ($742 USD) per fortnight and that's not going to change until I turn 21 on the 17th of September. But when it does most of the increase is going to be eaten by my loan repayments going back to normal that is not even including the extra catch up I have to do.
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<div>I am just really stuck and in such a bad way. Individual components of this are hells most people will never encounter in their lifetime, let alone all of it wrapped together in the worst package of all time.
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Homelessness and CRPS - Help me wheel out of hell

Homelessness and CRPS - Help me wheel out of hell

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