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I'm done... I'm done with this body and this life!I have been going through repeated seizures for hours and hours with n...
09/08/2026

I'm done... I'm done with this body and this life!

I have been going through repeated seizures for hours and hours with no signs of it ending. Calling an ambulance is just going to make the pieces of s**t at queensland health lock myself up in the nutter ward anyway.

Okay... so for those of you still reading? Glutamine turns into glutamate and then into GABA. You are a real one if you know what I'm about to type next! Glutamine is necessary to calm my bowels due to the ulcerative colitis from the HPS3. That glutamine turns into glutamate which 'excites' the brain, GABA is the brakes that arrest glutamate and keep everything in balance. The cerebellar atrophy is causing a shrinkage of my purkinje cells. The only cells in the body that produce GABA and supplementation hardly crosses the blood brain barrier...

I'm fu**ed... there is no way to solve the cerebellar atrophy, particularly since at least two of my diseases cause it to shrink. If I stop taking my glutamine it is sheer hell on earth and means I struggle to take up any nutrients.

I'm supplementing with GABA and glutamine but there is realistically nothing more I can do. The refuse to acknowledge any of my diseases since they are so incredibly rare despite massive, overwhelming evidence because I cannot convince any doctors to pull their head out of their arse and to listen to a highly trained patient.

It's hour by hour, day by day at the moment. There is no going back, this is neurologically progressive. This is life limiting and I genuinely think that since I'm not eligible for assisted dying that I'll be forced to su***de. I'm ready to go now but at what point is enough genuinely enough?

I'm here down at Surfers with my keeper and her clan. We've ended up grabbing ramen for dinner (her choice) and I'm just...
09/08/2026

I'm here down at Surfers with my keeper and her clan. We've ended up grabbing ramen for dinner (her choice) and I'm just sitting here having seizure after seizure.

I'm just trying to enjoy what little I can afford. If anyone knows of a sponsor who wants to use me for anything I'm all ears!

Pacific Airshow If you wanted to throw me a ticket the 🦓 would be happy to dress up and roam around! I'm free on the weekend!

I just completed a task that would have taken me between 30-60 minutes 'back in the day'. I could understand 2 hours now...
09/08/2026

I just completed a task that would have taken me between 30-60 minutes 'back in the day'. I could understand 2 hours now but it's literally taken a couple of weeks.

This is what iron in the exact area of the brain that produces dopamine causes! It's far worse than normal ADHD.

Task failed successfully though

Yes I'm real... I just don't think I'm interesting enough to bother posting outside of the rare disease space. I thought...
08/08/2026

Yes I'm real... I just don't think I'm interesting enough to bother posting outside of the rare disease space. I thought I'd treat myself today because I've lately been surprised that I haven't died in my sleep already

What is with the oxygen thieves complaining about drinking water! I had some idiot today responding to a comment of mine...
06/08/2026

What is with the oxygen thieves complaining about drinking water! I had some idiot today responding to a comment of mine giving advice to someone who wanted to run a secondary USB web camera instead of an inbuilt. Something about 'I can't believe we are running out of drinking water for your ai s**t account'.

Unfortunately my training in law enforcement has taught me people REALLY ARE that stupid!

Yes... I'm the problem here. Using 5ml of water to generate an AI image to push an issue affecting all of humanity. Hell... every species on the planet actually! Do you know why humans are so sick and diseased? Because in the wild, a bad genetic mutation will make you sick and weak. Result? You get eaten... you are old, have already reproduced and are just taking up resources? Eaten... aren't the fastest and smartest of your species? Eaten...

Humans? Nah... we will implement welfare programs that ensure even the sickest with low IQ's can reproduce and pass on faulty genes.

Yes, the zebra thinks about su***de because compared to what I have achieved I feel like I'm not doing much. Not that I ever get given the resources I need to do what I can. Anyway...

I just wish these idiots would just shut the f**k up! Guess what AI can also do!? It can actually go through genetic mutations and determine based purely on prior learning whether a mutation is likely to be pathogenic or not. My aceruloplasminemia mutation is considered to be not harmful by normal academia. Yet I have every sign and symptom. AI programs consider it to be highly pathogenic (disease causing). The AI is right!

Once AI takes hold of the research/lab side of things it will lead to rapid, multiple breakthroughs including hopefully finding a way to do live gene editing! I cannot wait!

But no... just focus on the fact I use AI images and not the message I am pushing! Gee... what's more important here?!

If you know what this is about you are in my inner circle. That is all!
06/08/2026

If you know what this is about you are in my inner circle. That is all!

Wow... 40 years... 40 FU***NG YEARS!!!I got knocked back by the latest geneticist but I'm seeing another specialist righ...
04/08/2026

Wow... 40 years... 40 FU***NG YEARS!!!

I got knocked back by the latest geneticist but I'm seeing another specialist right now who has ticked all the boxes so far, including a referral for a FULL abdominal MRI bulk billed! It's not quite a cardiac MRI but this will help tackle a lot of other issues since I'm working with non-complete data. Remember... my MRI's of the brain is what kicked all of this off!

It may take an hour but it's so worth it. On the plus side the specialist seems pretty close to retirement but he will probably work to his grave. What better way to cement your name than 'diagnosing' the world's rarest rare disease sufferer. I really don't care at this point as long as it's on paper for the NDIS to accept.

I'll still push it as my win but hooves crossed! If the MRI shows iron in the liver and pancreas (and all other organs) then it becomes pretty indisputable. I think there are about two other people worldwide known to have my specific mutation. The possibilities are endless on this one!

ZEBRA OUT!

FUIC it... I went to woolworths today to grab some noodles (I use the soup packets as a malatang replacement). On the sh...
04/08/2026

FUIC it... I went to woolworths today to grab some noodles (I use the soup packets as a malatang replacement). On the shelf was some iced coffee MARKED DOWN to $2.38!!! 0.4% coffee powder. This isn't coffee. It's coffee flavouring in plain milk.

With all the health risks and woeful product it's just not worth it. One day at a time, one choice at a time. I even skipped the so called 'half price' chocolate bar which tastes of nothing but sugar

Move you little c**t!I swear while the environment is slowly changing to help those with disabilities people's attitudes...
01/08/2026

Move you little c**t!

I swear while the environment is slowly changing to help those with disabilities people's attitudes (unless forced) are staying the same or getting worse.

I got onto a train coming back home tonight where a mother had plonked her semen demons onto the seats in a wheelchair bay. Leaving me high and dry on a pretty packed train and stuck in the doorway.

What a great lesson to teach your kids. Don't be aware that you aren't the most important thing on the planet and use resources allocated to others because they don't have a choice!

These stripes have been EARNT! I highly doubt your two six year olds deserve the seating more than me!

Now watch me whipNow watch me neigh neigh(Just a funny idea that popped into my head randomly)
31/07/2026

Now watch me whip
Now watch me neigh neigh

(Just a funny idea that popped into my head randomly)

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