Get a coffee, beer, wine, cocktail, cup of tea.... its a long one.

So, where to start since the last post..... well, I still don't have the NDIS. Accepted and approved on 16/4 and the call to get started within 21 days did not transpire. It's been 81 days. I made a call around day 41 to be told I'm just in the backlog. I then lodged a formal complaint on the 4th June which was due a response within 21 days. That too has transpired.

This has been hard. When you are given a letter of hope, and you can see and almost feel the hope, and then it gets pulled away, but without an updated due date, its very hard. I'd been hanging by a thread as it was and had all my eggs in that basket. Now I'm hanging by what willpower I have left. Some days none. Some days a glimmer. Some days brighter than others.

I got into the neuroimmunology team 30/4 to discuss the Baclofen issues (I'd weaned myself off by that day) and my other issues that were concerning me - mainly my brain function, inability to do basic tasks with my work that a 6 year old could (e.g. bingo off 2 lists), forgetting that I drove somewhere when I thought a friend did, etc etc. They put me through a round of physical testing and 'decided' my SPS had progressed and that's part of the disease. Apparently my right brain is not handshaking properly with my left brain. The wires are dropping out.

I countered (pleaded perhaps!) with their opinion...."I know you guys are the experts, but at this point I'd like to think its still circumstantial.... I've been in a state of stress since the 2nd August neck seizure that lasted 4 weeks; neck brace for the best part of 4+ months; trauma post op due to SPS spasm and failed medical intervention in ICU that set me back months; no sleep for best part of 6-8 months; homeless-deluxe for 4.5 months; persevering with a treatment causing toxicity; withdrawal from that awful drug; unable to work much more than 8 hours a week; and perhaps, just perhaps, this is a fair cause for my cognitive decline?". Dr Beer politely nodded in a way to leave me with hope that this could be a factor and we will reassess next quarter.

We started a new treatment (clonozapam). Another very very slow wean on program. I was stoked to realise that night they gave me one I'm allergic too (had sulphites in it)... fortunately realised just as I was about to take it. I then had to wait another 24 hours whilst they tracked down the one and only other brand in the country. So far so good on this one. I'm very tired on it and am usually in bed around 8/830 and up around 8. But it does cause drowsiness so makes sense. On the upside I'm sleeping much better.... but now due to lack of movement (with my baclofen toilet breaks!) I wake up way more SPS rigid. You win some, you lose some!! The other concerning issues have gone such as the drug induced false depression, wee'ing every 45min etc. That's the best and enough for me.

A week later I returned to Brisbane to do my routine catchup with Lucy (CF and respiratory guru) and the new Adele ENT. Usually I see Lucy on video link but as I was flying to Corowa the next day from Brisbane it made sense to see her in person. She was happy with that choice as she needed to break me the news that my hardcore MRI scans ordered by the SPS team in January had shown that my trachea goes off to the left and during breathing narrows from 2cm to 1cm.

So I clarified: I've got like a plumbing pipe with an elbow bend that contracts and expands? Spot on she said, great analogy. She let me know she hadn't called me in sooner because:
1) She new how much stress I was already under; and
2) She needed time to work out some form of plan or approach as she knew that's what I'd be expecting and giving me that news with no plan would cause me more harm given where my mental health was at.

I'm glad she took that path. Finding out that news back in January without any solutions or plans or ideas would have been the straw that could have broke the back. She knows me so well these days. She said that maybe I was born this way or maybe the 4 week spasm in August caused it. But my everyday breathlessness that has not subsided since stopping baclofen would be aligned to this 'hardware problem' as she put it!

In short, she said if I had a straight full pipe with no contraction then an SPS spasm might not be so intense but now she can comprehended how scary I'd been saying they feel given the air has to travel to the left, and the 1cm would contract to nothing, and then try to get air down and then back out again. In her SPS research its the spasms of the trachea and lungs that kill people so she is making it her mission to find solutions. Fortunately I have less of them on the beach (her idea to move me here as the grasses in Brisbane were a trigger) and less frequent on my new treatment. Anyhow, the current 'to be continued/revised/reasearched' plan is:

Step 1, was taking Dr Reece's reliever idea (a self made construct of something readily available in other countries but being blocked by our Gov for me), but to a new level and one we think we can pull off without Government approval. Aka backyard job. We are just working through the right dose of a nebule style midazolam to go in a device which I can buy off the internet. For the medically minded people - article here on the concepts https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7176251/
Step 2, she keeps researching - things like a stent aren't going to bode well with a spasm!
Step 3, in an emergency situation or as the disease progresses they would give me a tracheostomy.
I asked if this was the Stephen Hawkings thing. She said yes. I said, if we get to that point, I think I've taken on more than enough in this lifetime of mine. She said, I thought you'd say that so that's why Step 2 is my pet project.

That afternoon I saw the new famous ENT and lets just say, it was $470 I'll never get back. It was so underwhelming. He hadn't read my file, or the ideas put forward by Dr Reece or Lucy. He just put the camera down my throat and wanted to put me on a diet and have me come back in 6 weeks and spend more money. And when I asked his thoughts on Dr Reece and Lucy's ideas (which I had to tell him what they were as he had not read the file) he literally said "what are you expecting Loren, a reliever in your pocket. You do know that whenever an asthmatic needs their reliever they usually don't have it on them and that's what sets them up to fail". To which I pulled my asthma reliever out of my pocket for show and tell and said "well I'm not the usual asthmatic, I know that statistic, and I've probably left the house 3 times in my life without this in my pocket and on those days I've gone straight to a pharmacy and paid full price for a new one. So yes, that is what Dr Reece, Lucy and I are expecting some help with". I later found out Celine Dion has seen over 100 ENTs for no results, so I figure she's trailblazed that path for me so I can end that avenue. I've since cancelled my follow up appointment.

I went home to Corowa the day after these appointments and the timing was perfect. I needed a circuit breaker and a way to clear my head. Something magical about the Murray and a change of scenery to help process and reflect on how I was feeling about ALL OF IT. Not just the new news but the whole bloody lot and how I am managing this life I've been dealt. By the time I got back to Brisbane, I realised it was time for me to come up with another adjustment to how I live. What does Loz v47 look like?
[Side note: I still don't know, I'm working through that ].

On return I decided it was time to bring Dr Heiner back into the rotation, he always knows how to help. I saw him last week to discuss my prior bronchoscopies (the vaccum clean out of my lungs when I couldn't beat my infections) and bring him up to speed on all of it (I'd not seen him since pre-neck incident and SPS diagnosis). He'd got me into Lucy as he'd believed she'd be a better fit long term (she has broader specialities, is a CF guru, and is still doing research etc). Dr Reece and I'd recalled Dr Heiner mentioning over the years issues with the width of my pipe and had wanted to take me to Canada to do a procedure called bronchial thermoplasty. It was a day procedure that's been done in Europe, US, Canada etc for 20+ years but Australia (as I often find sadly) did not have this treatment option (we are starting to provide it now.... promoted as 'groundbreaking new treatment' of course). We recall him finding the narrowing, the CF looking construct in there and testing to prove that, he found the HSV in my lungs.... But we never recalled an elbow bend! Something you probably wouldn't forget haha

Seeing him is always a breath of fresh air. He said:
"Loren, I passed you a note (via Nanna Joy) to come see me last year. I don't want you not seeing me due to the money. I'm not going to charge you so please keep coming. You know I have 3 other SPS patients. If you remain unhappy at the Mater I can send you to my guy.
And you know, there is another resipiratory problem that can cause a trachea to go off to the left (specifically the left, and not the right). So I'm going to call Dr Reece to discuss this whole situation you are in (elbow bend, 1cm issue, SPS etc) and we will find a way to help you. To start we will get you some "complex lung function testing" done asap to rule the other respiratory issues out or in. And we can definitely work with Lucy's reliever idea. But lets check for an alternative cause to the elbow bend rather than assume it was the trauma from the neck SPS spasm!"

So, they have me booked into Pindara Private Hospital on Monday for these tests. And, Dr Heiner has kindly offered to some how fund them. So that's the next step, rule out other causes and then regroup.

Regarding my overall wellbeing. I finally realised by the end of my time in Corowa that I can't really keep faking that I'm well. I can for an hour catch up. But anything more, is exhausting. Every catch up with friends or family I just bring my game day face. My best oscar award winning performance.

Truth is, I Ieave these and head home to bed. And I usually spend the next week suffering (more than the every day suffer) and that's after the prior week planning how to pull it off. With that said I will keep doing this by choice as I love nearly every minute of it! It's my time to escape and be 'normal' and have a laugh. The thing is, it dawned on me, that I've not been very authentic with how I am and I can't keep that lie up. That is tiring too. I'm suffering every day, I just don't say it or show it. I keep thinking this is the last hurdle, and then another hurdle arises that bring more changes to adapt to, so many grief and loss cycles accumulating and the reality is, I've now come to accept, this will not change. I won't 'win' this battle. My diseases aren't ones you win/beat or go into remission from. Instead, they increase, they deteriorate, they bring extra issues as you' degenerate'. So I just need to keep adjusting to the battles presenting and take them on as best I can in bite sized project pieces. Seems I have finally learnt after 20+ years I can't fake it til I make it!!

So much planning of my energy usage/conservation goes into any little thing (e.g. a coffee outing, an hours work, taking a flight, getting dressed, washing my hair, cooking etc). For those who haven't heard of spoon theory you can read up on that in the document below. It will explain my life better than I can. I'm deploying spoon theory in every momement of every day.

I'm trying to find ways to hold on until the NDIS can help. I had looked into a proper health retreat for 2 weeks to give me a break from my life, where I can be looked after, and have the right therapies all in one spot, to help me start with a blank canvas and paint out what v47 looks like. But that was a 35-70k commitment!! WTAF.

So instead I've got Sync or Swim funding my hour of physio each week now (return to work program given the neck injury happened there), and that is helping. I've got my Music Therapy client allocating me a member of her team very soon to help with my cognitive issues - they set up programs for people who have this left right brain wire connection problem I'm facing (barter system). And my OT client continues to give affordable ideas (e.g. I now have a portable electrical blanket to keep wrapped around my calves which is currently where my spasms and rigidity is bad or for the nights when I wake with hypothermia rigors that take too long to settle). Regarding work I have set a goal of 8 - 10 hours a week and I'm just fortunate my charge out rate is decent after 14 years (yep, SOS turned 14 yesterday... although its probably pro-rata like 9 years with all my time off haha). And thanks to Elise's tip, when I need to use my left brain for a work thing, I deploy cleaning my teeth with my left hand haha That is helping. Sometimes messy, but definitely helping! And my teeth are very clean haha

From Sunday 14/7 to 21/7 I'm going to take the normal human respite and have a few nights away with Brie and then a few nights yet to be planned, but unplugged, that's for sure. Hopefully during this week I can finally have a 'break' and work on my blank canvas v47 for far less than $35k.

PS if you wondering why it takes this long to give some of these updates, well, it's because writing it means I need to be finally accepting it. Putting into words what is going on is like the final step. It's there, in black and white, and real. I can't take it back! I can't be in denial. I have to be vulnerable.
All of these things are not enjoyable to write about when you want to live a life in false hope waiting for a bus that is not coming. Dealing with it continuously without a break is a lot. But mainly, I find myself always wanting to protect my loved ones (all of you) from the reality I am facing. But it's time I stopped faking it til I make it as that's not realistic and its exhausting. And as my wonderful counsellor said recently - they got way more capacity to manage their emotions about your situation. You dont need to protect them. Wow, wasn't that an eye opener.

Lastly - some nice photos below to show that the last 3 months have not been all doom and gloom and have been blessed with snippets of experiences that make life worth living for. It's the little things. If you can take anything from my story, its enjoy those 'moments' that seem like nothing. They are actually everything.


Spoon Theory Summary here:
https://02820e84-b355-466c-8557-f004e7965f7b.usrfiles.com/ugd/02820e_d14a016763ca4c5e8d97598acc744e22.pdf