Its been over 2 months since the last update. The focus of that time has been on:
1) Finding roof to live under.
2) Learning to live with Baclofen.
3) Uncovering research to help with the voicebox SPS.

1) Finding a roof to live under
The rental market was like the hunger games. I was investing around 10-15 hours a week into finding a place to live and it wasn't sustainable. I had one last place to fight for or I'd made the decision to come home to Corowa that weekend (end of March). I deployed all my new tricks... made contact with the Agent, sent off my flashy 1 page Rental CV with referees and the like, and offered 12 months rent up front to counter my perceived limitation of being self employed (extra admin for an agent so we never get a go!). Yep, that is where it is at.

I got to come to the inspection, with 100+ others. I deployed my best trick... be in the last batch to go through and hope to strike up some witty banter with the Agent on the way out. I managed to do that and we were like kindred spirits. I worked out this was a break lease and the owner was a first time investor. He was burnt as he wasn't getting break lease fees or rent. He felt like the yin to my yang given I was burnt from my first real landlord!!

So I went in with the 12months up front offer.... (bye bye Bulimba sale proceeds) .... anticipating them to say, 'oh don't be silly, 3 or 6 months will do'. But the agent and landlord googled me and saw some lovely Google reviews (thank you clients and team members of clients!) and they said yes.... and yessss to the 12 bloody months PLUS bond. He didn't want to get burnt again and this solved that problem for him! Apparently its normal in this market to offer extra weekly rent than asked on a 12 month lease, or go with 3, 6 or 12 months up front.

I didn't walk away excited as 'the chosen one'.... more just some relief. To be fair I was purely exhausted and dealing with my baclofen toxicity (read more later on). Getting a home had become a chore. Plus I knew deep down I had settled somewhat to just be done with the burden of living out of my car and not wanting to be an extra weight on my friends. This was no way to live, particularly for someone not well.

So I'm now in the north end of Palm Beach, the Burleigh side. It was my least preferred location of my catchment Burleigh to Caba. The place is much smaller, can't drop downstairs to things I need, and views not as good..... But, as the saying goes, beggars can't be choosers, so here we are! To be fair it is lovely, it just made me realise I was living the dream last year. I'm fortunate to have experienced that once in my life.

I'm excited to say I have Jen & Mick visiting end of the month for a few nights and then mid May I'll still head home to Corowa for a couple weeks, so stay tuned Corowa folks for that!

2) Learning to live with Baclofen.
This has been absolutely hell and over the last couple weeks escalated to me not trusting myself due to major cognitive issues (e.g. brunch with my mate Simon helping me with a rubbish dump run and I can't find his ute... for him to tell me I drove; e.g. left my portable fridge open and unplugged and 7 weeks plasma goes to room temp with no recollection how it was unplugged and why I did it).

It's also caused chemical induced depression and this is something I can't even begin to explain. For the ladies, maybe its like the PMS you know is not real and will pass, but times that by 1 million. My super power has always been to find humour in anything and these days that's few and far between and I find nearly every encounter I'm faking it til I make it and then have to go to bed to recover. I can now empathise with those who suffer depression and moreso those experiencing it when it's not induced from trauma rather a chemical imbalance.

And these issues are before my 45 min interval toilet runs and no sleep, sweats/chills, hardcore fatigue, chronic nausea and inability to have a bloody alcoholic beveridge!!!!! [yes, there is rage on that last item, I didn't realise how much I enjoy 2-3 drinks for a special occassion and how much I'd miss it].

I'm super grateful to Dr Reece for warning me of these issues on all medications before we try and then keeping a close eye on me to help catch it early. There are sadly too few people without the same support who don't get warned of the potential side effects of medication and it escalates quickly and doesn't end well.

Two weeks ago we spent a good 1.5 hours together on one day and then another hour the next, brainstorming all my issues and considering a recent article on SPS treatments. He's escalated that to the Mater team, and he got me to escalate to my clinical nurse there to see who gets through first! But I seem to be in a cyberland holding bay waiting for their support. The downside to the Public system.

During our chats he had said it if it reaches a point you'd rather another spinal injury and neck brace, then you know its time to wean off!! And here we are, doing just that this week. Choosing what I think is the lesser of two evils.

The fact I'm able to write this post is testament to the improvement I've experienced from that decision over the last two days. Downside is my spasms are increasing but I actually don't care if I can feel the dark fog lifting!!

He wasn't keen to give me a crack at one of the drugs in the article without the gurus input. He explained half of them we don't have in our country, of the remaining half a good chunk of them are bad for my PID/CVID, and that leaves a small bunch....however they are known to cause the issues Baclofen does and worse.

He said the kindest thing was for me to not have to go through the change over more than once as weaning off and then onto a newbie to maybe have to come off again would be more evil then where we are now.
So we need a brains trust decision on where to next.

3) Uncovering research to help with the voicebox SPS.
Within the article we found was a nasal spray medication in America used for epilepsy seizure clusters but also as a reliever for the voicebox SPS spasms. These are the spasms that scare me the most given they 100% feel like an asthma attack and my ventolin does nothing.... they are what are usually associated with those who pass from SPS (or a spasm that punctures a lung).... so.... I want a treatment option in my pocket.

As expected Australia doesn't have it. However, Dr Reece has designed a prototype for me (even better administration than the US one!), and we now lobby the government to let me have it. They agree its a simple solution he has come up with and it's not actually a new drug, a version of diluted valium to be administered via a skinny nozzle from a bottle. See photo of our planned device!
Don't get me started on the beauracracy.

Whilst undertaking my research I learned that there are ENT's who are generalists and then there are specialised ones. I narrowed my search to ENT's who's whole specialty is voice spasms and scar tissue. Of which I have both and I think the scar tissue excarbates the length of my voicebox seizing closed.

I stumbled across a Matthew Broadhurst. And what are the odds.... he is Adele's specialist and he has been referenced at the Grammy's as the guru in this space and allowing her to reclaim her career. He also has a Ted talk. AND he happens to be in Brisbane after many OS bouts and time at Harvard Medical School. Wow!

I'm excited to say that I get to see Matthew on the 9th May and hopefully he will want to have a crack at my problems! Dr Reece has written him a long letter outlining my prior voicebox surgeries, host of diseases, and seeking his expertise on my SPS voice spasms and also offering up our prototype solution for episodes for his consideration and endorsement. I've got some show and tell to do that day haha

4) New bullet point - Other forgotten news
I also get to see Lucy Burr on the 9th. She is my CF guru and has been influential with the SPS gurus. So I'll be leaning on her for support. She also needs to set up my next sleep study given my spinal situation could have caused troubles with my respiratory. So I'll be getting on to that too. Whilst I'm there I'll ask her for a reco on a new gastroenterologist (my professor retired) as I'm about 5 years overdue and given my nausea issues its probably a good idea to get that checked.

Oh and throughout this last patch I've also transitioned to the PA Public for my plasma and immunology. Let's just say the grass is NOT greener on the other side. Yep, I'm finally getting my consumables for free but the experience has been pretty hellish so far. Had to take on new treatment equipment which is massively oversized compared to what I have (which was already too much to travel with) and they like 8-weekly catchups! Medical consumable savings are now time and income losses. If I do the maths I'm probably in the red comparitively. I'll also probably need to book a second seat on a flight to house this shit. Ah the saying 'be careful what you wish for'.....

In closing.....
Thats about it. Hopefully next time I write is sooner as it means my mind is up to it and hopefully my humour is well and truly back.

Thanks everyone for the continued support. As usual, sorry if I left you high and dry with an sms conversation. That's how bad my brain is. Chase me up!

Special thanks to my clients who keep waiting for the best version of me to return. There have been days when I think both of us are concerned the day may not come. Then other days we get a glimmer of hope. I'll keep chasing the glimmer.

Extra special thanks to my friends who've got me through the 4 and a bit months homeless-deluxe (coined by my godson Julius!) phase in life. If I didn't have you guys, well, I'd be one of the tent statistics near the Cooly Airport or Musgrave Park. True story. I can see first hand how this is a real problem in Australia given the cost of rent and number of competing applicants. These are unprecedented times. I'm so fortunate to have you all by my side.