This last few weeks were a bit rough as I grew more and more fatigued, my cognitive function hit some all time lows, and an overall pit of darkness sunk in. I could not quench my thirst for sleep. Didn't matter how much I had.

It came to a head when I had physio a week or two ago (can't remember hahaha) and Justin was kind enough to let me know he was now genuinely concerned with my deterioration. Whilst my physical body was back on track he noted I was pretty much missing from my body. He pointed out I'd even chosen to pay $100 to uber down and back as I couldn't drive and then we laughed at me referring to his plural children as "it". Like in a sentence such as 'how are it'. And he's like what? and I'm like 'how are it'. Then we went into a game of Articulate to realise I was thinking I was saying 'your children'. I was finding it hard to string some sentences together. He said his concern was in all our time, my banter was fading away when usually on my hardest days I had it. I was a shaddow of usual myself. I really appreciated his insights and kind and humourous way of helping me identify things were not ok.

We agreed I'd talk with Dr Reece and my Psychologist about it. The tricky situation is that I have too may variables that could be playing a part:
- Recently I got some blood tests back which were not great for my red blood cells and phosphate (which we've parked until next weeks hospital visits) and an underlying infection somewhere - all which could be a cause or part of my problems.
- I had an unexpected Pill change which manages my endo/adeno and CF due to an Australian wide shortage and there was no exact replacement. We had to combine 2 tablets leaving me on a dose lower than normal, that was the likely cause of a major spasm and rigidity in my left ovary and trunk. And no doubt impacted my mood and fatigue.
- I was using new found time to do other things, rather than rest. Dr Reece noted I was classically and officially burntout for fair reasons coming from the last couple years.... but using some wit he noted it would not be helped by me being own worst enemy for always wanting to do more! (he said all this with his trademark chuckle to soften the blow - I need to capture this one day for all to understand how good it is!).
- Clonazapam (my newest SPS drug) could cause all the problems I was facing - unquenchable tiredness, weakness, cogitive decline, 4x urine output to input, dark clouds and thick fog.
- It's just the combo of my diseases and this is the way it is and to be patient and rest it out and allow the NDIS supports to kick in. It could be my new normal. It also might not.
- My frustration was growing as the NDIS had made recent changes and there was now a cloud over whether I could take respite that Dr Reece badly wanted me to take to rule burnout out of the equation. Thankfully a few weeks of back and forth, my NDIS plan remains in tact and I can have it.

Stephanie my psychologist helped me realised I was miserable generally, plus likely drug induced, but what was probably causing me the most frustration was my inability to solve my own problem when I spend all my work/spare time solving everyone elses problems. I was facing a potentially unsolvable problem. There was no crystal ball. The one thing I'm really good at ..... and I can't do it.

So we went through all the potential contributing factors. She added to the list that my 4x urine output would also be causing dehydration which causes all my symptoms too. Good point. But I couldn't drink more as it just comes out. She then kindly reminded me that my other super power is my intuition and that these are the times you rely on that and if there was something I wanted to change I could. This was my life. I choose what I want to do. That was what was within my control. She also got me referred to a colleague who curates respite care for people like me. We hope to have me into that by the end of the month when both Justin and Iron Chef are away on leave.

I went away with homework and thought about all my variables and worked out:
- The change in pill definitely caused havoc but I was 5 weeks into that so it 'should' have stablilised. My rigidity in the ovary and trunk was resolved.
- I had no control over the blood tests and would not know more until next week and even then who knows where that leads to and how long.
- I could keep working on the respite plan but in reality it couldn't come fast enough so needed another solution before it did.
- I was already sleeping more than enough and I'd put most of my work on hold the last few weeks, so that was all I could do there. Dr Reece would be proud of his request for me to rest and I listened ;-)
- I felt like I was on a slow burn toxicity exactly the same as the Baclofen toxicity. The feelings and symptoms were mostly the same. I could start a wean off and talk to my NDIS Plan Managers about doubling physio and rehab to try counter the reduced SPS meds.

I took the last option and called Dr Reece on Tuesday. He said he felt this day would come and here we are. He said it's not a nice drug and I'm always extra sensitive to anything we use. I put forward the idea of halving my morning tablet, staying on my night tablet and using 1/2 tablet on 1 physio day per week to help the physio break through my concrete layers. The rationale to 1/2 the morning tablet was that it causes tiredness, so may as well have the full one at night time, and try reduce tiredness during the day! He said this was the best plan and we agreed I'd write to the SPS team before next week to let them know this is what I was doing. We agreed to revisit how I was feeling once or twice a week until I was feeling more myself.

We hoped it might be a situtation of the radio signal tuning he taught me last year with baclofen.... we might be able dial it down but not completely to zero and we could dial up physical therapy and find a middle ground. Or if nothing changes.... then we can rule the drug out as the cause.

So this week I've been on wean off and withdrawals and the like that comes with it. But, upside is, I'm here writing this. A fog has lifted. Not the whole fog, but a big part of it. Its 4 and a bit days in so I'd call that a great result. My mood is already better and that was validated yesterday when Yolane came. I'd yet to tell her my updates from our session 3 days ago on Tuesday and she asked 'have you changed something, you seem different, like your coming back to life, the last few weeks I'd been super worried about you and had planned to talk about that today'.

I let her know that after our session on Tuesday Dr Reece and I caught up and made the drug change. We then moved on with our session. Interestingly it was the strongest one we've had in a while. My weakness had improved (clearly a sign of the drug side effects and now reduction) and I did better following her instructions. We worked out a revised plan on managing my own program on the 5 days a week I don't see her to help reduce my feet spasms in particular now I'm not on the same dose.

Now I don't want you thinking its been all doom and gloom. I'm learning to laugh at the cognitive issues. A few of my favourites this period include:
- Ringing a potential candidate for a client we are recruiting for twice. Luckily she opened with 'nice to hear from you again so soon Loren'. And then I had to quickly pivot the reason of the call, 'yes, I forgot a couple items on the last call' which I then had to quickly make up hahaha
- Suggesting Jen & Mick watch a particular movie and let Nev Hetherington know about it too. I think he'd like it. J&M asked me to describe the movie more. Then asked when I watched it. I was like last week. We were on a zoom, they looked at each other a little bewildered and then let me know the 3 of us had watched it together last year and yet there was nothing familiar about this movie last week haha
- Jo had let me know she has brand new baby possums just birthed on her balcony. I asked for a photo. She said her camera's broken. We did this same circuit 3 times within 24 hours before she gently said..... something like, we are stuck on a loop Lozza haha
- Mick texted to say Cousin Lizzy had her baby. I was like, oh Cousin Lizzy is having a baby. Then I saw photos and was like, Oh, she's had a baby. How lovely. Then I forgot for another week or so then it felt like new news again and I finally sent Lizzy a text without putting myself through the unnecessary embarrassment of how many texts we've likely had on this topic! Hearing the news of a new baby for what feels like the first time, multiple times is quite lovely haha
- I gave a hug and said hello to Adam (Cien's brother) at her Dad's house 3 times. Luckily by the time I decided I needed to go home I'd remembered and told him he wasn't getting a goodbye, he'd had 3 hello's!! Everyone laughed.
- Started with my new cognitive physio in person at the house. I wished I'd recorded what she had me do just so you can 1) have a go and 2) laugh at my situation. I had to use 4 tiles and step into them in a clockwise and then anticlockwise direction. Hard. 2) I had to walk backwards.... hmmm very hard. 3) I had to do alternating foot taps on my calf raiser, so tap up on right side then down, tap up on left side, then down, tap right then down etc. That was hard. Then once I was going she had me add in counting down in lots of 3 from 100. i.e. 97, 94 etc. This was sooo hard but I was going ok and then all of a sudden I just stopped. She's like why have you stopped? And I was like, I forgot what we were doing. And we both laughed. She said thats ok. We've reached your limit! I think I'd made it to the low 80's and she made a note - that capped me out.
- Feel free to add your own example of my poor cognitive in the comments. I'll probably be reading it for the first time haha

With my new found time, I'm doing as I pledged a while back, which was something more meaningful than just more time into SOS. I have been put on 2 panels (don't worry, not a lot of work!) to help within the medical industry:

1) Part of a project team putting in place a framework on how to distribute plasma should there be a shortage. We had to take this all the way to the worst case scenario or the shortage leading to death and what rational would be deployed to choose who gets what's left. I felt pretty equipped to help with this given there had been no such framework for my Pill that is currently unavailable! Sadly in these groups you get the ones that only care about their own situation and can't see past their own selfish needs. Then you get the ones with wisdom who know in their 70's they'd give their dose to a child.
Diagram of the likely end result in the photos.

2) Starting next year, I'm one of 4 who were selected post a screening and interview process to participate on an advisory panel for 2 incredible projects within the Ian Frazer Centre for Children's Immunotherapy Research. Ian Frazer is the guy who got the Australian of the year award for inventing the HPV vaccine. The team are from UQ and sitting across from the Qld Childrens hospital. They have a budget of over $7m to run 2 projects. Link to the Centre. https://child-health-research.centre.uq.edu.au/research/ifccir

One is called Atlas - where they will map more than 1000 blood samples from a diverse group of children with healthy and abnormal immune systems. The goal is to use the results to create a paediatric 'normal' immune system reference (an atlas) and then allow clinicians to quickly identify differences in immune cells in healthy children versus those who are fighting disease. Help with far quicker diagnosis and then develop new immunotherapy treatments. Article here for those interested. Covers more than immunodeficiency, e.g. cancers, diabetes and lupus. https://www.uq.edu.au/news/article/2024/09/immune-cell-atlas%E2%80%99-will-help-kids-fight-life-threatening-diseases

The other project focusses on vaccines for children with cancer to harness the power of their own immune system to fight their tumours. It would be a patient specific vaccine using precision to their own genome. Epic stuff.

The Ian Frazer Centre projects are something for me to really look forward to. A motivator to work hard on regaining my cognitive and a way to feel like I've got a legacy to leave all the future little Loren's or kids with cancer and rare disease. They are so supportive of where my health is at and accommodating everything I need to participate. They are keen on my lived experience, my business experience, my strategic capability and ability to facilitate strategic sessions for them (e.g. how will we get the 1000+ child blood donations), get bang for buck with their funding etc.

Stay tuned on more there!

As for whats coming - I'm in Brisbane from the 13th to 20th November for back to back apps at the Mater and PA hospitals. Appointments for CF, SPS, Immunology, Anaethetist review for my upcoming inpatient stay for my very over due colonoscopy and gastroscopy to investigate my squashed oesophagus, check my fundoplication surgey remains in tact and not a cause to my throat spasms, Neurgenic Bladder issues etc etc. Between that and then time with the Brissy physio team - Paul and Ang for twice weekly physio and rehab, it will be a long but productive week with lots of twists, turns, and stories, I'm sure!!

Not many photos for this last period. I've been mostly sleeping, having some form of treatment/rehab and resting.