Continuing on from Part 1.....

I'd finished up at the dentist and ordered my uber. I was heading to get Carlos and I a great lunch from our fav Vietnamese and would walk home from there. I got there to realise it's a bloody Monday and not open. Damn. Not ideal. Luckily another shop nearby was open and I grabbed us some toasties and coffee and walked home with my mind swirling about the mornings events. After lunch I would then need to get on with my new project to ring around for an urgent endodontist appointment. The dentist had said this could not go on much longer without significant consequences.

Over lunch I filled Carlos in. We were both astonished. Pondering what if all my issues have been stemming from this toxic infection that had been festering for who knows how long and related back to an incident in the 90's. He just looked at me and said, I don't know about you, but I did not have that on my bingo card for Lozza's 2024!!! hahahaha We were astonished at the research how root canal work can lead to neurological, respiratory and autoimmune disease later in life. One of many sliding doors moments in my life perhaps!

Carl was like did you even notice a problem. And I was like at least a couple months ago I thought maybe it was slightly raised, kinda like when you hook into a pizza, and it is too hot, and you get that little layer. But not painful. And ever so marginal. I then said, but Bella my nearly 5 year old niece diagnosed it ages back in hindsight!!! I relayed how we'd been on one of our longer FaceTime chit chats and she said "Aunty Lozzas, what is wrong with your tooth" and I was like, what are you talking about sweetie, and she said your "bottom tooth looks worse". And I realised she was referring to my root canal teeth and I revised my true story of, when I was a teenager I had a bike accident and a car also hit my bike and I landed on my chin and fractured my arms..... to…. when I was a kid I had an accident and knocked my chin and this happened (I didn't want her scared about riding her bike so omitted that whole section!). And she was like, that's no good. And I was like nah it’s not, but it’s ok now. And then we got talking about something else and I neglected to even go check if there was something I should be concerned about. In hindsight, my tooth is much darker, and Bella had me diagnosed months ago!!!!

That night I read Jacinta's emailed notes on the earlier appointment and her saying I'll see you tomorrow for the SPS and anaesthesia appointments. I wrote back thank you and add to our list we need to tell them both I have an epic infection in my mouth so that will likely change both appointments completely. She wrote back, Oh Loren – that’s bad news – as if you need more to think about! I was thinking, I wonder how long she will last with me as her retirement project and all the twists and turns haha

Tuesday came and I was going to the informal catchup at the Ian Frazer centre first which was behind the hospital for my actual appointments. As I was climbing a hill the public system dentist called, and I filled her in. Usually, the wait would be long. But because I was huffing and puffing, she was like, Loren, are you ok? And I said, nah I'm not. I'm in a bad way. She asked how much pain I was in. I can't tell a lie (even though my dentist had asked me to as she said I just didn't know given my meds), so I said, look, my pain is significantly masked by a list of drugs I take for my numerous diseases. My medical team are extremely concerned because I have Stiff Person Syndrome (yes, the Celine Dion disease) and we thought the new treatments we have been trialling were causing toxicity and amplifying my symptoms of my cystic fibrosis breathing issues and cognitive problems to the extent I can't drive much anymore or work. My brain is a mess, as you experienced with me trying to give you my medicare number, and I'm running fevers a lot and can't stop sleeping. But now we have identified my issues might be linked to a toxic infection in this mouth of mine that has been contained for toooo long by my daily medications.

The hill breathing was a godsent, and thanks to Celine and the well-known label CF she said, I think I can find you an appointment here next Wednesday, this sounds extremely urgent. I said, yes, my dentist said it's epic and critical. (I was looking at next year, which would mean I'd need to divert to private and thousands of dollars!).

Once that was sorted, I then had to hide a little way away from the Ian Fraser centre to catch my breath and generate a 'normal' person look.

I went in and next minute I'm meeting with the 2 key researchers in a fancy modern boardroom, and they have up a PowerPoint preso. My inside voice was rabbiting on at me.... how did you forget there was a presentation, I thought this was an informal hello. Why did you not bring your laptop to take notes. Or even a pen and paper. Don't worry, you are the king of winging it, just wing it! I was relieved I did decide to go the nice collared shirt and new shoes!

Perhaps my facial expressions were relaying my inner dialogue as they then said, you might be a little confused about why the presentation. And I said yes, did I forget to prepare something or do something? As you know I've been unwell and a little cognitively compromised. They laughed and said: No Loren. We are springing this on you and need to come clean....

Turns out they had finalised their screening process and I was their top candidate to join the Consumer Advisory Committee, and they wanted to run everything past me first before the other 3 candidates for the primary committee and then the various others in the subcommittees. I sat upright more and said, oh, ok. Thank you. How can I help. (Inside voice said: come on brain, don't let me down. Wake up, time to shine.). They said, well we'd like to go through this overview presentation on what this is all about and then seek your input to improve it before releasing it wider. So off we went. It was fascinating stuff. I had plenty of ideas and they kept saying how grateful they were to have me, and this was definitely a good plan of theirs to pick me to improve their work and thinking and strategy! It was one of those moments where I was later baffled. I put on an A Grade performance in there, yet can't do a basic checklist form or follow Yolane's rehab instructions. Such a contrast!!

Then we got to the final slide, and it turns out it is a paid gig and basically they were positioning me for the Chairman as the others didn't have the same business acumen + lived experience etc. I was shocked. (My inside voice was like, I bet if they saw my dentist form, they’d abort this offer very quickly!).

Thankfully I can take on that role on its own or take on more of the subcommittee stuff as well if I wanted to. But it would be about 10 hours work a year and 2 board meetings in person. All expenses reimbursable and they'd accommodate my health and disabilities as much as I needed.

I left there pondering if maybe my toxic mouth had me in a deep dream hahaha.

Then I met Jacinta, and we had a debrief on our mornings. She'd helped a young man and his support worker with an epileptic fit on the bus on the way in and I let her know more about my mouth saga to prep for our 2 appointments that were going to go differently to how we had originally planned haha.

I finally got to meet the well-regarded Dr Andrew Swayne, seems Ruben was away and today I got Andrew (the one Lucy originally wanted me with for my SPS). He said Lucy had already sent her notes over from a few days back and he'd been reflecting on them and my pre-reading email and then announced the global shortage of clonazepam. He had open on the screen an article I'd sent the team back in April on the latest in lines of treatment for SPS. He wanted to dive in on my alternative treatment options because of my email about clonazepam being potentially toxic.... when Jacinta piped up and said now would be a good time to update Andrew on the latest.

Andrew said, how much could have happened since Lucy and I said, well a lot. I let him know about my infection. He stopped and said, wow, a slow burn root canal infection can be very toxic and dangerous. He didn't want to get my hopes up, but he noted the infection may explain all or some of my symptoms of fatigue, cognitive decline, fevers etc. Advised the impact of this infection might also flare disease or might flare or depress side-effects of medication. i.e. it might make my diseases worse than they are or it might make the side effects of the treatment better or more likely worse than they are.

With this new intel he said do not change a thing right now until this infection is cleared. We need a clean slate. Don't change your asthma medications yet. Let's work extra hard at getting you the clonazepam. But let’s get a plan B script in your bag if we can't. We decided rather than moving to a new line of treatment options whilst I'm dealing with this infection, it would be safest to stick to the same category of medications (i.e. stay on a benzodiazepine). We chose Valium. Same line of drug so should have minimal change to my experience. It is routinely used by those in the US support group, so I felt ok about that as my back up.

Then when the dust has settled, we will start from scratch! Maybe the baclofen was never bad, maybe the clonazepam is just fine. Maybe I need a new category. We won't know until I'm a few weeks clear. So, he has me recalled for 8-12 weeks’ time to see how I am.

He then said you won't be able to have the procedure to check your fundoplication, colonoscopy, squashed oesophagus etc etc. He said I can't be having anaesthetic in this state.

He asked when I was seeing the endodontist, and I said I'd got into the public system on Wednesday or I could go private and spend thousands. He'd never heard of someone getting into the public system so early so to take that appointment as it is down the road from them, so they aren't far away if I have problems. But if I deteriorate any further in any way to present there at ED as systemic infection can't be messed around with.

That was a wrap.

Jacinta and I popped down to see David my pharmacist and updated him. He let me know he had tracked some coming from across the globe which should arrive before I run out.

We then left and crossed the bridge to the other side of the Mater Public to attend my anaesthetist appointment.

We got a lovely lady, and we couldn't get a word in as she was check listing all they knew about me. I'm saying yes that's correct, correct, correct etc. Finally, there was a break as I couldn't remember an answer to a question... I couldn't find the answer. And I said, I think now is a good time to mention my mouth infection! The anaesthetist leaned right back in her chair and said, Wow..... You have everything going on! You have all of this to deal with and now you have that. I said yes, never a dull moment. I said the admin ladies wouldn't let me cancel the procedure or postpone it as then "I'd be breaching protocol based on my risk for why I need this procedure" and the anaesthetist laughed and said we'd be breaching protocol if we gave you an anaesthetic with all that going on. I laughed and said yes, I tried to tell them that, but here we are. So, we agreed the anaesthetist team would call in a few weeks to see where my infection was at with the goal of rescheduling me mid-January. But effectively her job was done, besides me putting together a one pager for the procedure to help the anaesthetist and fill in the gaps I couldn’t find answers too.

Jacinta did up incredible file notes yet again. And helped me work out that I needed a Anaethetist specific handout pack (I have a fancy 7-page pack these days with a simple Timeline of Diagnosis, followed by detailed pack of my specialist team, medications, list of diseases, list of surgeries, allergies etc etc). But to make sure I don't go through what I did last year with the neck surgery or my other shit post ops, it's time I had a hand out so they can't say something isn't 'written up' or they 'didn't know' etc! That was clever and will hold me in better stead for next time.

Tuesday was huge and I was shattered and in bed super early! Wednesday I went for some more Physio with Paul, we focussed on my voice box since I'd had a long week of talking! Then had a support worker come get me from Hans and Carls to return to the coast. Louiza was probably the first one I had who helped with my bags and used a navigation system. She was a young sweet Kenyan lady in Australia studying. We were off to a good start. About 6 mins down the road, she informs me she has no petrol. And we hadn't passed any, so she pulled over to google the nearest one on our route home. (Johnny - she does it like you an me, lives right on the edge haha)

We stop somewhere in the middle of nowhere somewhere south and off she goes. I was kind of happy as I was in the middle of a good text-a-thon with my mate and client Philip and was wanting to focus on that. He was in the midst of joking about something being a Nigerian scam when Louiza comes back to tell me she can't transfer her money from one account to the other to pay. Something is wrong with the internet. I said maybe just use a card or there's probably an ATM in there. So off she goes, and Philip and I keep our chat up. Then she's back and tells me the ATM isn't working. We've been asked to move the car away from the bowser. At this point I msg to Philip I'll be back soon and that I might be in the midst of a real life Kenyan scam haha He’s like what….?

At this point I realised we'd been there at least 30mins.... so, I said, look Louiza, I really need to get home so I'll just pay, and we will sort this out later! So, I head in, but I bring her with me (I didn’t want another MIA driver), pay for the petrol and then we hit the road.

But, because we left mid-afternoon, and had now lost 30mins, we'd gone from a 1hr 10min drive to just over 2 hours. It had blown out and was blowing out by the minute. About another 1.5 hours in I had to ask for a break. My legs had enough, and I needed the bathroom so we pulled off. I come out of the bathroom and back to the car and noticed she now has a drink and some pringles! Hmmmm All I can think is once you pop you can’t stop haha And then I realise, hey the money seems to be back?!?! So I said, oh good to see your paywave is working again and she said, oh yeah it is, let me transfer you the money now. The money landed and that was the end of the Kenyan scam.

By the time we got home we'd been on the road for 3.5 hours. I was shattered. On one hand super disappointed at another bad experience but the other hand I think she was just a sweet young lady who learnt some lessons the hard way (i.e. turn up with a full tank of petrol!). It was pretty unfortunate she couldn’t get a signal at the first stop and then their ATM was down, which she showed me!

I ended up reporting the various incidents to my people to report to their agency. I said I didn't want Louiza to get into trouble, but I think it should be common practice to fill your car up first if taking a long trip. I needed it all on the record as ideally in my next NDIS submission we will chase extra $ allowance and I can use Ubers or private drivers, rather than support workers.

This was reconfirmed today when I got David to bring me up for my procedure tomorrow. I told my people I was happy for a male; I think they'd been scrambling to find females and I'd never said I wanted only females. They seemed happy this! I thought this could be better......Nope. Not better. Nice guy but we sat on the motorway in the far-left lane less than 2m behind the cars in front doing 70-90km / hour and breaking rapidly regularly with a lot of...."oh sorry Loren, that was close". My head was already hurting when I got in the car then I had to deal with this.... I was constantly doing the passenger foot brake move and had to deal with him chatting about stuff I couldn't care less about and laughing at his own jokes with a horrid snort!! haha Honestly, you had to be there to appreciate it.

As soon as I got to the hotel, I had to take a lay down. I was spent!

But I'm here, back in Brisbane. Tomorrow, I head for physio with Paul, then I catchup with Tom (Paul's Dad) who is a very well-respected specialist dentist (he blew the whistle on mercury in teeth!), he is going to help prepare me for my 130pm public system dental appointment! Why you ask? Well......

A few days back I forgot what I was even doing. So I rang the public dental people back. Pressed 1 to get the call back when at the top of the queue. They call back the next day because the poor buggers get 640 calls per day. This made me realise how fortunate I was to get in, within the week. The lady asked if I needed to cancel and I said, no, I need to ask what I'm doing! I'm sorry, I'm not doing so well cognitively, and I took the call and completely forget everything. She was really kind but probably thinking I don't have time for this! She let me know that I get assigned 40mins and they do everything they can in that 40mins to resolve the problem. If they can't, then they call me back in another time but that won't likely be the next day, more like a week or weeks later. She reminded me I had a text with instructions on where to come and then told me where to park! Ok, good.

These days I don't perform well at decision making (mostly fine at work, but for my own stuff, nope, ran out of decision make powers at work!) or filling in forms it seems… which I will have to do on arrival. So thankfully when I called Ang to book in with Paul we got chatting and she said let me ring Tom! I think you need to be better prepared!! She'd offered to cancel some interview meetings and take me to the dental procedure, but thankfully Brie stepped in and is taking me in. Not that we've had time to chat yet due to an epic round of phone tag, so she is probably reading this post and finding out the rough way what I've dragged her into doing this time haha

Gotta love a friend that drops things to help when they have no idea what it is they are signed up for haha I get the sense we will have plenty stories given its the public dental system..... Hopefully she doesn't endure anything like the Greenslopes debacle and this time we should be together and her not left in the dark trying to get answers on my wellbeing!!

So, Tom will help me understand the likely options before we go so, I can make more informed decisions and not under pressure. I suspect he will say the best outcome for me and my primary immunodeficiency and current toxicity is to lose the tooth completely…..I'm prepping myself for that, and my future life being teased as a toothless magpie supporter! If this is to occur, I'll be sure to start the memes myself and allow you to join in with your best efforts haha

Fingers crossed tomorrow is the answer to a chunk of my problems and relief is around the corner :-)

Double fingers cross it means my head is clear and I can get back to my own bloody driving!!!!!!!!!!!!!!