It has been a while between posts and a whirlwind of activity I will try to bring you up to speed as best I can. Given the detail it might come in two posts!

- 6 weeks in a neckbrace in the middle of summer sucks. It literally stinks. With my CF gene I already suffer from dysregulated temperatures and excessive sweating, but this was next level. No one has invented a solution to this dirty neckbrace dilemma, so that is now on my endless list of entrepreneurial ideas. Niche, not likely profitable, but worthy haha

- I had my skin checked. Whilst in hospital for surgery I was reminded how important it is for someone with PID to do this super regularly and I've been a bit lax. Turns out there were 2 clinics within my 8min walking circuit from Hans & Carls place, so the universe threw it in front of my face and I sorted that. He was a lovely Indian fellow who went over my whole health history first. He put his fancy skin checking eyewear goggle thingys on, skimmed them over my whole body, and then with a cheeky grin and smile said "I can inform you that you have this one part of your health that is in good shape, well done" hahahahaha I wanted bang for my buck so asked what he thought of my neck wound, of which he said the surgery was healing perfectly and he was impressed. That was nice to hear a few weeks post op.

- I made it home for Christmas!!! Not sure how I pulled that off, but I did and nice to see the family. With Covid, it had been a long time coming for me to join the whole family for Xmas. The whole air travel experience was hard. Keep in mind this was the first time I’d taken this risk since 2019 and boarded a plane with my other health issues!! Pretty epic step.

- I learned in the process that those with disability and requiring a wheelchair at the airport do not have much fun at all. They are the ones who fatigue quickest yet have the longest day thrust upon them. You must get to the airport extra early and then you are last to disembark the plane. Both Virgin and Qantas were excellent, but it is not something I'd willingly sign up to do again if I’m ever feeling the way I did again. It was super hard and took a bit to recover from. I'm still bewildered on how they access the toilets on the plane. It was hard for my mind to not wander to what might be for my life one day. Full respect to those with disability that travel. I reflected how grateful I was that I got a lot (not all!) of my OS travel out of my system in my younger and less unhealthy years!

- I made it to Melbourne after the longest day, I think it took 8 hours door to door with the early arrival required at Brisbane airport, a delayed flight and last off the plane scenario. Given the longest outing I'd had prior to his was 2-3 hours and that landed me in bed, it was no wonder I was wrecked. I was grateful I'd decided to have a couple nights in Melbs to recover at Jo’s before the drive to Corowa.

- On my second night in Melbourne I had dinner with Dan, Joa and Suzi. This was another big step. Dinners had not been something I was capable of in a very long time. It was lovely to do something ‘normal’.

- The road trip to Corowa with Joa and Suzi was sensational. We decided to make it like we were traveling OS and had a detour to remember. Some places we'd never thought to put on the to-do-list. After such a long time not being able to travel or get out and about this was really special and a treat I will never forget.

- My sister-in-law Cien had the bright idea to lend me a tried and tested pregnancy pillow when I arrived in Corowa. Wow. Hello sleep. It finally returned. How you ask? Well, the U-shape pregnancy pillow means you can't roll over willy nilly! Therefore, you are wedged in nice and tight and no surprise rotations and neck pains.

- When one goes from 5mths of nearly no sleep to finally getting some there is then some intense sleeping and fatigue that follows… for me that kicked in directly after Xmas lunch. I’m usually the person that can’t sleep through a feather dropping, but passed out for hours on a recliner in the open plan area where 17 odd people were making noise haha I can safely say my energy is finally returning and so is my sanity. Thank you SIL. Xx

- Upon return to Brisbane I spent some time back at Lyndals. I’ve lost count if this is my 4th rotation or more there! Thanks to Lyndal I seem to serendipitously time my need for housing with her vacancies in the downstairs lodge. Very grateful yet again. I also spent some nights with Hans & Carl and the kids which was nice.

- Monday the 8th of Jan I had the head to toe scans organised by my new neuroimmunology gurus at the Mater. Interestingly they were so specialised I had to head back to Greenslopes to do them as the Mater doesn’t have the tech we needed. My 40-60mins in the MRI machine turned into 1.5 hours… it was hard to not ponder why! And the music was not working, so it was a little looooong. Then when it finally came on, in the last 15mins, it was somehow a medley of songs related to my ex’s. It was like the universe decided to lock me in the cage that goes over your head then slide me into the claustrophobic tunnel to have a good long hard think about my life choices without being able to escape hahaha

- Thursday 11th I had post op scans to see how my neck was getting on.

- Saturday 13th I had the post-surgery review with my surgeon. Elise came to this one. I had a laugh that morning with her that given this specialist is the soft fast talker, with Swedish accent, aka very hard to understand…. it was really very unfair that I’ve made 4 friends have solo appearances with him and never a second go to get any traction understanding him haha

- In bright news he was super happy with my recovery. My 6 weeks in a brace was diligent (many do no weeks to 2 weeks) and it was recommended for me due to my high infection risk and tendency to reject foreign objects. I was relieved to hear the 6-week slog (which followed the 2-3months before surgery!) was worth it. My new device had settled in and was textbook perfect. Photos attached below. Looks like a little hamburger. He said what was good was the airtime between the top and bottom bun in the burger. [Note he didn’t use the hamburger words, who knows what he said, this is how we interpreted it hahaha]. The way we knew how well I’d gone was by the fact he didn’t want a follow up and the receptionist seemed shocked and surprised as it never happens!

- What was not bright news, but not unsurprising, was he said I could not take up non-local driving and I needed to ‘wean off the brace’. Specifically, that my neck reflexes would be off, and I’d be liable for blind spot accidents, amplified if I didn’t have a fancy car with the mirrors giving 360 degree vision. At the time Elise wasn’t sure if I misunderstood and didn’t hear this news properly or if I chose to gloss over these comments and break the rules later haha

- Note that we had planned for me to drive to the coast after that appointment, spend some time with the Easdowns, celebrate my new life at our fav restaurant, and start house hunting that week so I could become indepenent once more. Now, I had heard right, I just chose to park the news and move on with the appointment. I was disappointed but post the meeting we decided ‘non-local’ driving ‘probably’ did not equal the gold coast motorway for over an hour hahahaha. So, to soften the blow we had lunch on riverside and decided to wait another week for my coastal life to start again. We did celebrate my hand grip strength has done from 12kg both hands to 25kg left hand & 30 kg right. This was something quantitative and real. This was important to me and had been evident in my ability to do basic things like reach out to take a piece of paper off someone, or poor a glass of water. But it was good to do a test and have evidence!

- Tuesday 16th I met my new Scig ('Subcutaneous Immunoglobulin' aka self adminstered plasma) nurse to collect consumables (aka needles, syringes etc). Just after surgery I decided to request (assertiveness and persistence was required) my immunologist get me referred into the public system. My consumables for plasma had been discontinued and their replacements were triple the price. It blows my mind that in Australia health care is not equal across the states, nor accessible in equal format. So I've been paying around $5k per year for the last 6.5 years when most others Aus wide get it for free. After some back and forth he agreed and 'found a way' to get me in.

- In my life, everything happens for a reason and turns out being stuck in Brisbane was a good thing. By chance I ended up needing to be there that week. Unexpectedly a fav client and friend of mine was jetted (via Kevin 07’s old PM jet now Careflight) into town having his own health battle and little did we both know, but me joining him at the Mater hospital for a little bout of F2F work was the best thing that could happen for my health and his. We got to work, yes, I worked! First time doing real work for several hours in one sitting after 6 months. And geez it felt good. My brain literally switched back on. And we both got our minds off health stuff, and we bantered like the old days. I walked away with a buzz. I hear from trusted sources he did too. Medicine comes in many forms :-) From this day forward I knew I was ready to dip my toe back into work and some indendent living again.

- It was only the week before that I was starting to wonder if I had to come to terms with a new shitty version of my new normal. Another step down it my version of quality of life. Another grief and loss cycle to manage dealing with deterioration of quality of life. I mean, it had been 6 months of poor cognitive, major brain fog, no energy, no ability to work or be independent. Interestingly I’d voiced these concerns to Dr Reece just before Xmas. And he leaned right back in his chair, took a deep breath and long silence and then said to me:

“Loren, I can’t make any promises, but I strongly believe there will be a day in the next couple of months where something shifts. There will be a shift and it will be sudden and strongly positive. The surgery recovery will kick in, the baclofen dose will stabilise, and you will return to July Loren”.

My belief in this was wavering, but thankfully as always, Dr Reece was right. I was grateful to him for helping me keep my hope alive until the day came. Loren vJuly2023 returned. I often wonder if he really believes (when he says stuff like this to me) or if he instead believes in the power of the mind and he says these things to set my mind off to the achieve the task. I choose not to ask, because I don’t want to jinx his magical power and because I do know he believes in always starting with a blank canvas when a new challenge arises and actively setting out and painting a new picture. It’s a great visualisation strategy that I believe has power behind it.

- Since the day working with my client, I’ve taken the step to working on his project and helping another couple with smaller things. I’ve jumped into my usual boom/bust, feast/famine approach to work and life. Hard not to when it’s been a long time between income earning, AND when it brings me so much satisfaction that my brain is working, AND when I know I have the appointment with the gurus on the 30th looming which could change things abruptly. It is nice to feel my version of “ok” again, so I decided a week and a bit ago to go all in, like at the casino, all chips in for the 2 weeks leading to the 30th of Jan, and to just really enjoy the feeling of work and a few nice meals out.

As my good friend Gamze said to me the other day, gratefulness is the key to satisfaction. Amen to that. Succinctly summarised where I’m at this week.