It has been a very long time between posts. I had to read the last post to find out what prior Loren had to say to think about what current Loren needs to say!!

Seems a lot has unfolded given the lapsed time between updates and explains the frequent questions lately from friends and family on an update on 'retired life' and my health.
So, quick bullet updates:

1) All of my insurance policies have been paid, including my income protection until I'm 65, so I'm financially secure to kick goals until 100+ years old. That was a massive relief, but I wasn't allowed to get too excited as excitement causes SPS attacks haha

2) I had to move house AGAIN during March. The landlord wanted to move in. Thankfully, my current building manager had an apartment 4 streets down the road, two bedrooms, ocean views, living the dream, but at a whopping cost. But is owned by the building developer, so unlikely to be kicked out. I decided I didn't have it in me to do any more house inspections with 50 people turning up, and/or be Homeless-Deluxe again, so I treated myself to it for a year whilst crossing my fingers the insurances would get paid haha

3) I'll aim to buy something once the market settles a little, but actively looking on the coastline in locations set up for a future Loren who may require community wheelchair access and NDIS support services who can travel to me etc. e.g. Kirra, Tugun, Currumbin and sections of Palm Beach.

4) SOS will wind up officially on 30 June, thanks to Schulzy, Rob & Dan for helping wind down the clients, given I had ceased work back on 5/11/25. I think that will be a surreal feeling. Usually I'm coaching others on this milestone day, and this time it's my turn!

5) I keep thinking next month "I'll be medically retired", but seems each time I set a future date-driven goal, it doesn't transpire. I've now worked out I don't think I'll ever be 'retired'. What I have learnt is that basically, when I was working up to 10 hours a week, it was like the last drop of water you wring out of a wet rag. I'm not sure how I fitted it in.

6) I now appreciate why Dr Reece & Dr Heiner wanted me to retire years ago. There is a lot of work to be done on myself, and it is literally a full-time job. Many of you have even suggested I'm busier now than I was back then. It has been relentless keeping up with the medical appointments, testing, scanning, treatments, new conditions being handed out like candy at Halloween, and my 6-8 hours of allied health per week etc.

7) My cortisol levels have adjusted a fair bit. I didn't realise how much stress I was under on a daily basis. I was sooooo match fit and clearly burnt out in retrospect. Now I can 'feel' stress - which is a blessing and a curse! I'm not yearning for stressful/adrenaline work things anymore, which I was for the first few months as warned. In fact, I'm in a phase where I can't even watch certain things on TV that might cause stress, so I can leave space for everyday stress. Sometimes I’m even opting out of watching the footy! I'm 'recalibrating' apparently.

8) So, given I've not actually found 'retirement' time/space, the knock-on is my memory issues are still there (and/or it is simply SPS). We (neurophysio team and EMDR Psychologist) have done a better job at defining what they are, particularly the 'working memory' (which impacts short-term memory, dual tasking, word finding etc) and we have found some great papers on the SPS effect. Scenarios I face so you can picture it include:
e.g. I couldn't find one pair in a game of Memory Cards with kids on the weekend.
e.g. I often can't follow a few steps in rehab, or generally, I need verbal steps given one at a time, or written down to follow.
e.g. I've had to learn to walk 'properly' again (probably for the 8th time! Not as exciting as my drop foot western gun saloon swagger episode haha). This time was to get my arms to swing at the right time with my legs and next step was to the right tempo (cadence is the technical term!). I had no idea how bad and unco this had gotten and how slow I was, and it was causing my body damage. So you may see me use a metronome app/sound to get it right. Or hear me randomly counting out loud whilst walking, 1,2,3,4,1,2,3,4 haha The things I’m learning are exponential haha
e.g. I can't find words (or important simple things like a niece’s name), or I find and use the wrong word, or lately I have spat out new words I've never used before that make me sound like a corporate word-bingo wanker, and friends find it hilarious haha
e.g. When tired I end up in a stutter and that can be embarrassing (hilarious depending on environment!).... PB to date is me not knowing/realising I was saying the C word on repeat to Jenbo on FaceTime when I was simply trying to say the word country! Good on her for just waiting patiently, no judgement...to the extent I didn't even know hahaha. She did message later, when I had a flashback and asked, and she simply suggested I try not to use the word Country in front of my nieces.

9) I've been working with an EMDR Psychologist to help work out how to help me:
a) get some working memory back; and
b) take the edge off the parts of the brain impacted by SPS to reduce the SPS episodes and/or improve the speed of the rebound (which in turn helps point a).

It has been so fascinating learning about the brain and how SPS impacts it and how we can put in place 'templates' for future everyday things that can cause an SPS flare-up (e.g. bad doctor appointment, Swallow Study, left field exposure to someone with hardcore Tourettes!).
I'll do a whole chapter on this one day just because it's fascinating, and there were a lot of funny stories in the first few sessions, given the process takes steps, and I can't follow steps haha. They are now using me as a case study at university, which is nice to know I can help others, and in turn, they are helping me in a more targeted way to my very niche needs.

I've unfortunately had to become a very planned/organised person for catchups, meetings/appointments, trips away, which is one very small part of our 'template'...
e.g. get things in advance, like forms to fill in.
e.g. provide an Opening Statement on my cognitive issues and how my brain 'glitches' and SPS triggers to new people before a meeting/appointment starts.
e.g. getting mobility assistance at airports (that in itself needs a chapter!)

The previously famous guru at "winging it" Loren, has gone. I'm finding this hard to adjust to, and I hate having to plan, but not as much as what happens when I don't.... so I'm begrudgingly trying to embrace more planning. Being a good winger, relaxed with spontaneity, was such a life blessing. I miss that version of life!

10) I had another anal fissure and bleeding, and a new Interventional Gastroenterologist got involved. After he ordered a load of blood tests, stool samples, and an ultrasound, which led to an immediate extra urgent ultrasound and discovering I had deep infiltrated endo within a section of my spinal cord that can implicate the bowels, lower back, and my legs and likely a domino effect to my SPS. After some urgent appointments and a panel of my gynaecology team, and a 1.5-hour meeting with my specialist going over it all…. it was deemed that performing surgery would be 'ineffective at best, dangerous at worst', so we need to continue to manage via physio, heat, and the various polyvagal nervous system techniques I've been taught to help with pain etc. They also determined that the anal fissures are likely to be caused by what is called SPS Sphincter Spasms which we will monitor. And with the prior histology in the polyps, we will continue with annual colonoscopies for a while. I'll be booked in for November.

11) I've had increasing issues with unexplained/inappropriate breathlessness. I had been blaming my bent and floppy trachea. And had kind of become match fit to it. But after a few people intervened, we worked out that there is something more to it. Good old Apple Watch has shown my heart rate alone ranges from 40-160 per day, doing next to nothing. When I’m walking with someone else, mine can be double theirs, and we aren’t even exercising, just strolling (pre-metronome era!). Or it can happen just going from the couch to the kitchen. And it always happens with a shower. Dr Heiner and Dr Reece arranged a panel of blood tests to start the investigation, to which I got the call from Dr Reece late the next night saying, Seems lately we go looking into X and come out with a new condition to add to the party.

This time round it was some autoimmune-based markers which required more blood tests...which lead to more markers and a Rheumotologist appointment. In short, we have started a new treatment (Hydroxychloroquine) for Sarcoidosis, Rheumatoid Arthritis and Psoriasis. It will take up to 6 months to kick in. I'm in the midst of two rounds of special eye tests to keep an eye on them, as that is the main side effect; otherwise, it is considered a low-risk drug. If the drug doesn’t help, then we stop and revert back to trying to find better management for my SPS. But we are hopeful all of my issues aren't just SPS and it may help with my breathlessness, calf/ankle/wrist swelling, lumps in lymph regions like groin/adductors, arms/armpits, pain and extra stiffness in joints and extreme fatigue (e.g. after a 2 hour catch up with a friend I need a nap).

On Thursday, I go for a special sarcoidosis PET-CT scan, which requires a not so fun for me high-fat, no carbs, no vege, no coffee, no sugar diet (think buttered steak, loads of eggs, bacon, cheese, fatty fish, thats it) and 12 hours fasting and up to 4 hours in the machine! This may then be followed by another set of fasting and more scans up to 2 hours, but they will split them up.

Oh, and in the mean time more bloods for the sarcoidosis, lead to Dr Reece calling again to say we needed a B12 injection monthly for 3 months, then 3 monthly thereafter (I've had this problem before). We are hopeful that it will help with my extreme fatigue and my brain. That would be a lovely quick win!

12) With all of those side adventures, we are yet to move to the cardiologist to do an echocardiogram and 24-hour heart monitor etc. Will get to that soon. The Sarcoidosis could well be the breathlessness problem, but none of my specialists wants to make that assumption.

13) That is the short version of the medical and life update! There have probably been another 87 things, but that will do, I think!!

The Best SPS stories for the period besides the Country one include:

1) Going for the Swallow Study - for some occasional aspiration and choking - usually after SPS in neck/throat, and to check functionality post the neurosurgery from the spasm that bent the trachea. Thankfully, I was taken by my nurse support worker and met by my speech pathologist at Robina Hospital. Next minute I'm doing my 'Opening Speech' to a whole bunch of people, and announcing my SPS triggers and as I say 'unexpected movement and flashing lights' .... the lights flash, and 3 more people shuffle into the room to my right and startle me. I look up and notice there are around 12 or more people in the room with me and behind the glass window. I was SPS startled and overwhelmed... so my support worker nurse read it, and she and my speechy checked I was ok. I came around quickly and was like, I've had heart surgery and fewer people than this were in the room! And announced, well that was exhibit A of an SPS startle. We move on with the test, and in the room is the lady passing me food dipped in contrast to swallow and a nurse calling the shots between me and the Doctor behind the glass window. I'm still overwhelmed looking at all these people looking at me! I said to the nurse with me, Is this normal?! She looked in and said Absolutely not, I've got stage fright, so I can only imagine how you feel. I then said I wished it were like the Interrogation Room on TV shows, and the glass could be black! She agreed.

Later, my speechy and nurse took me outside to go over the test, and my speechy apologised. Apparently word had got out within the hospital that 1) the test I was doing was happening and it is rarely done; 2) I had a bent trachea and squashed esophagus which is also rare and would be exciting to see in a swallow study; 3) I had the Celine Dion disease..... so basically any doctor who had a spare moment wanted to come and see the rare animal at the zoo in a cage on a chair!! My support worker nurse said that it was possibly the most exciting thing she'd seen in her time nursing, so she got it, but it was highly inappropriate for them to not get my consent/warn me (I would have welcomed it, just would have liked the warning!). Naturally, I spasmed all the way home and that night.

2) Went to meet the new Rheumatologist. Followed the 'template' and got the forms to do in advance, and 28 pages and a couple days later, sent it off prepared. Had all of my physio team help prep it, and one of my physio team (also an ex-medic) came along to help with the Q&A as they literally do head-to-toe questioning. I got there early (now I'm a frustrated planner) and was hanging around out the front getting fresh air when I heard (well before seeing) a man with hardcore Tourette's... not words, but high pitch, low pitch, very very loud noises and grunting and a blind cane that he was bashing everywhere and anywhere and he had 2 support people trying to manage him. I thought to myself how fortunate I am ... comparatively. I've got nothing to whinge about and how rough life can be for others.

Fast forward, I walk into my specialist's room, and lo and behold, he's in there. Now I'm at the John Flynn Hospital Medical Centre, so this place is huge, and of all the buildings, and floors and the rooms, he's in mine. I start some self-talk that it will be ok. I check in and take a seat. I can't find my earplugs. The next minute, he is thankfully taken outside by one of his support team and is causing a ruckus up and down the long hallway. My physio comes in and sits down and whispers to me, 'Loren, just a heads up for your SPS there is a man in the corridor with the most intense Tourette's', and before I even respond, she looks at me and says, 'Are you ok?' and I said, He's from our room! She asks me to find my earplugs, and I give her the bad news that I seem to have lost them.

Next minute, he's back and called into the specialist on the left, and my doctor comes out and calls us into the room adjacent to the right. In retrospect, I learned that his banging and crashing with the cane and the extreme loudness of the Tourette's had put me into such an SPS startle that I could not even take a seat, I was frozen rigid, going nowhere! My physio said verbal cues from the doctor and her were not helping, so she had to pull a chair forward and literally put me in it. The doctor is facing me and starting to ask questions.

Later, I’m told I was unable to even hold any eye contact and was facing the wall to the right (away from the chaos in the room to my left), like I was trying to mentally escape. And I've not even done my Opening Statement; it's been forgotten. And my face looks agonised as I try to find words to answer the questions.
My physio realises I'm in a bad way and calls a time-out with the doctor. She had to snap me out of it and bring me back to the room and check I was ok and said now would be a good time to do your Opening Statement, particularly the SPS bit!!! I was so unwell I read it like a robot, word for word, when these days I can just glance at it and talk to the people in the room. The poor specialist then looked like a deer in headlights and apologised and said in all his life nothing like this has ever happened (i.e. what was going on next door, let alone an SPS patient dealing with it on the other side of the thin wall).

My brain was agonised and grinding so damn hard to find words, it hurt. I later learned I said this out loud, and without me knowing, he then used some diversion tactics and asked me about my new Apple Watch, as he was a tech nerd, and by the time we had some basic chit chat, the man next door had been taken back outside!

We then got back to the meeting, and by the end (1 hour later), I was coming back to life. It taught me how important it is to have someone with me these days for things like this. There was no way I could have done that meeting alone. Who knows if my SPS brain glitch would have bounced back without the help to snap out of it by someone who knows me well. Naturally, spasms and rigidity persisted badly for the next few days, and we had to up the physio sessions!!! But boy, have we laughed hard since about the odds. I keep telling anyone who comes along to expect the unexpected, and this was next level!!!


Outside of all of the medical stuff, I must stop and celebrate that I got to go home to celebrate Micky D’s 70th and to the annual Pies vs Hawks match. With my newfound ‘frustrated planning’, pacing strategies, ‘templates’, ‘opening statements’ and physios in Yarra and Melbourne, I’m finding ways to get away from home with more confidence.

It was the first time travelling where I did not have the added burden of work stress on my plate to manage whilst away, and was able to prepare well with my NDIS team before going, and be caught on the other side by them to rebound.…. All of this meant it was the first set of trips I’ve done in at least 5 years where I realised I felt happy, mostly relaxed, and enjoyed myself.

I was able to be present and participate more. After many, many years, I was able to enjoy a simple game of family euchre… Interestingly, that was the moment I realised maybe my quality of life is on the up, and this ‘medical retirement’ was the right decision. It was compounded by Micky D noting the following day how nice it was to finally have me back at the card table, and that I did pretty well. I did have to admit it was with some help from my niece Soph reading my cards and kicking me under the table occasionally, but all in all, I was back on the bike and had a few wins. Funny how such a little thing feels like the biggest win ever and has motivated me to continue to get better and get some versions of ‘old Loren’ back again. Seems she incrementally got lost in the thick of it many years ago, but like an unwatered basil plant is slowly coming back to life. This makes the changes and effort with my medical squad all worth it to get snippets of the great little parts of life back again.

Photos below in no particular order but evidence there has been a lot of 'great' moments and visitors.

It's the little things that make life magic.

PS There was a lot to drop into this post and no doubt a lot needed more detail or was forgotten!
Happy to take your Questions and give Answers in the comments box below so others can get read and get the answers too.