Pt #2 - Starting in the past.. Doctors, Answers and Life changing needles

So, picking up where I left off.

After the first ambulance ride, I was checked over by doctors and after giving my medical history what felt like 9 million times to everyone including the cleaner, the doctors told me they thought I may Have Ankylosing Spondylitis. For those of you who are unfamiliar with this, it’s basically when your body fuses the disks in your spine. This was obviously a pretty devastating blow to me, and It felt like the life I wanted flashed before my eyes before laughing as it left the building.

I had an MRI which didn’t show any fusing, but a great deal of inflammation. Sadly, this is still something I will probably have to deal with somewhere further down the track. So like... Woo.

This went on to happen several more times.. Usually in bed, back seized up, I'd get stuck, and the only way to get free was with the assistance of a paramedic with a magic whistle. If you have never had the chance to have a go of one of those, you've missed out!

My most memorable "Seizure" though was while at my in-laws. We we're looking after my brother in law whom suffers from Autism. He was in bed and I didn’t like the idea of not being upstairs should he wake and wander as he often does, while Mr Fiancé was downstairs watching something with other Brother in law. Parents-In-Law at the time had those fancy leather swing style Jason Lazy boy recliner chairs, that reclined easily. Here I am, watching some tv, when I sneezed. THE WORST back seize I ever had. I had to call him Mr Fiancé on the phone to get him up to help, and eventually after many tears and swear words, he gets me standing and loosening up a touch. Great! We slowly aim for the stairs and start the decline. About half way Hubs-to-be cracks a joke about how only I, could cripple myself with a sneeze. Now, I am an emphatic Laugh-er. I laughed one Ha, Before my back went out, taking my legs with it and by the speed of the Flash, He managed to catch me and plop me down before I completely paralysed myself comedically tumbling down the remaining stairs. a quick phone call later, It was about here that Parent-in-laws arrived, with an ambulance moments behind them. I get another magical whistle, and onto the stretcher I go! Hubs2B calls my mum on the way to the hospital, and she gets there as I’m being wheeled past the window in Triage. Me, in a Magic whistle induced stupor. If you've never tried a Magic Whistle this is it - You know when you're on a night out, and you've had a few, but feel great and don’t think your that far gone, but then go to pee and realise your actually shit faced and could use a water? That’s what it does. That was me. I covered one eye with my hand to focus and yelled out and waved with a whopping great grin. I saw my mum go beet red and wish the ground could swallow her. I still Laugh about it. :) 

This was the time where some bright spark put two and two together, and suggested I have a Rheumatologist visit my room. Up until this point, I didn’t know that Psoriatic Arthritis was even a thing. He said that given my skin, this was the most likely cause. I was told to follow up with my GP. GP looked at me like I had two heads when I told him the prognosis, not because he'd never heard of it, but because he must have thought I was a complete idiot. He basically just said - "Well.. Duh?" I may be paraphrasing a little. He then went on to list about 10 more complications caused by or associated with Psoriasis, That again, I'd never known about. I've currently got or have had most of them. My worst one is Bursitis in my hip joints. They involve Cortisone shots in the ass. They Suck.  

That’s probably the worst thing about having it my whole life. I spent years and years trying new things for what I had, but no one ever told me what else to expect, and I never really looked. I wish I had so I wasn’t so blindsided when it happened. After that diagnosis, my skin really took a back seat. Well, it was already there, so maybe I moved it to the boot. I spent about 2 years in and out of hospital, while they tried different treatments for me, but eventually, they came at me with my good old Derm. After one particularly shit flare up, I was admitted for wet wraps for a week to try and calm my farm a bit. Hubs2B had been google-ing and found Humira. He suggested it to the Derm, who went for it. While my PsA was my problem, it wasn’t classed as bad enough to get me onto it, but my skin was worse than ever so after hoop hopping with Light therapy, (that burned me at 3.5 mins - because Pasty White Tasmanian) Sulphasalazine that gave me stomach ulcers and having already run the gauntlet of Methotrexate, I was approved to start Humira. 

By this time, My joints were so bad I could only walk with crutches, and was otherwise mostly bed ridden (at 20 I might add). The first dose of Humira is a "loading dose" so you get two shots at once. The day after my first loading dose, hubbs2b and I walked our dog up a bushwalk trail on the side of a friggin’ mountain. I am NOT exaggerating. Within a few days, I could feel and see the texture of my skin changing, and for the first time, I felt optimistic about a drug actually working. Within 3 months, I was completely clear and for the first time in my entire life, I was pain free. I had NO IDEA just how much pain I had been in!

After that I actually got really angry. I thought.. Why did it take 20 YEARS for something like this to come along..!? Why did WE have to ask about it instead of having it offered as soon as it was available?! Why aren't we all being offered this?! 

I am no longer on Humira, but I encourage anyone reading this to bring it up to their specialists because it is worth its weight in gold - to me anyway. Without it, I wouldn't have my son!
But, more on that, in the next post.

Thanks for reading, 

Millz. xx