The week in Brisbane was hectic. This update will come in 2 parts as far toooo long!!

Thursday 14th: CF specialist + unplanned pharmacy debacle + physio
Friday 15th: Should have been a breeze day just getting plasma
Monday 18th: Neurogenic overactive bladder guru + what should have been a routine dentist appointment
Tuesday 19th: Ian Fraser Centre for Children’s Immunotherapy Research - informal catchup (was not as informal as I'd anticipated!), Neuroimmunology and then Anaesthetist Appointment
Wednesday 20th: Physio then head home (the longest weirdest way)

This was the first time Jacinta would be joining me. We decided she'd just be needed for the CF, Neurogenic bladder, Neuroimmunology and Anaesthetist app. If I had my time again, she'd have come to the dentist haha

Jacinta is ex-allied health team leader within various hospital environments. Trained as a speech pathologist but ended her career leading large hospital teams. Then retired in Brisbane and a little bored needing a pet project.... me!

She's added so much value already. We had a 1.5 hour Zoom meeting the week before the appointments, then I had homework to do which took about 4 hours and included writing to the CF and neuroimmunology specialists with a heads up on what I needed to cover.

This process wouldn't take as long next time and made me see how complex things were. It brought her right up to speed and she said it would help them be better prepared and make for a more productive meeting. And I'd warned her of the left field shit that goes down.... expect the unexpected and detour away from the plan.

So, first up Lucy, CF specialist. I hadn't even got my bum on the chair and we were off on a detour! Lucy asked if I could update her on all of my medications currently at play. Hmmm give me a moment Lucy, I'll grab that in my cloud file. Jacinta pipes in, here Lucy, here's a printout of something Loren and I prepared earlier. I was like, Jacinta has already paid for herself!! haha

Lucy wanted to review all my drugs and work out which ones could be contributing to my issues at a small level but when they all come to the party to 'interplay' at a big level. She identified quite a few. But worked out the only one she could recommend reducing was one of my asthma drugs in summer (down from 2 puffs morning and night to 1 puff morning and night). I'd tried this in the past and failed miserably. But, she quickly worked out I'd not tried it using the recently studied best approach. I'd normally just dropped from 2 puffs to 1. She said I'm better off getting the same spray at the half dose and keeping with 2 puffs through my spacer. Its the second puff that has better efficacy. Then her and Jacinta laughed it would also be better for my poor brain to not change my routine of 2 puffs haha

Lucy then agreed with reducing my clonazepam and upping my physio and rehab as another option. My chesty cough weaning down from clonazepam she said is called a purge. She stated clonazepam suppresses breathing and I may not be taking in big breaths, rather very shallow, which impacts things.

She also asked me to get back in with my holistic gynacologist she also sees and referred me to a while back for a third opinion on my endo and adeno. She noted perimenopause could be a problem and the fact my Pill has gone out of stock and I've had a reduction would be messing around with me too. She wasn't overly concerned about my red blood cell issue (unless it continued deteriorating) and said my gynaecologist would pick that one up.

Lucy said my blood tests are not at this stage indicating dehydration or haemoconcentration from my urine output issues... so that is a good thing. We ended the meeting on her having their team schedule me for my new sleep study in Jan or Feb within their clinic there at the Mater Public.

Jacinta and I left there to head to pharmacy to get my scripts filled. She couldn't believe how much we cover in one appointment and acknowledged it would be hard for anyone let alone someone cognitively challenged. She laughed we'd not even sat down and were off on a sidetrack adventure unplanned for! She had about 4 pages of notes from that one which lead to a one pager of actions for me.

Just as we finished at the pharmacy we were headed for a coffee to debrief today's events, when David my lovely pharmacist literally chased us down the street calling my name! We stopped and he asked why I didn't get any clonazepam, and I said I was considering coming off it and would be back on Tuesday post my SPS appointment to either get it or try something new. He said there is a Global shortage, and he wanted to let me know. He said I'd been flagged category 1 due to my condition but also because I'm allergic to the alternative. He asked how much I had left to work out a plan. He was happy I'd already started a wean down as it is dangerous to just stop and advised he'd keep calling around the world and would aim to sort the matter. Thank you, David!

As Jacinta and I set off again to the coffee shop, I said, I'm pretty fortunate to be surrounded by some people that really do have my back. She was shaking her head in disbelief and said she couldn't believe how much had happened in my life in the space of a couple hours.

We then brainstormed Friday and Monday's appointments and settled on her coming to the Monday Neurogenic bladder appointment and I'd handle the dentist and Friday's plasma pick up no worries.

We parted ways about lunch time, and I went to my hotel for a quick lay down, something to eat out of my fridge and then uber to physio. I let Paul know my Achilles and calves seem to be worse than normal, and no doubt related to my wean down. He asked how my 'swagger' walk is going. And I said, funny you mention that my friend Skye recently saw me after a long period of not seeing me and said my SPS has given me an interesting swagger when I walk. He said, let’s take a look. And then he laughed and said I think because of your left right brain issues you've adopted a revised 'western saloon gun fighting one' (see video for entertainment) and we best get you rewired to the right swagger as this would be amplifying your issues.... haha.

After a good session there I went back to the hotel for an afternoon of rest. Then Brie picked me up for a delightful dinner where I felt like I'd escaped my life for a bit. Nanna Joy had taught me the disability sticker means we can park in paid parking spots longer than signed and for free.... Brie was doing laps in the pouring rain to find somewhere close enough for me to walk from... and finally I remembered this delightful bonus to the wheelie sticker haha!

Friday came and I had a support worker collect me from the hotel. I stay at across from the Mater when I have early morning appointments. I arranged her to help me with all my luggage (see photo to see how I roll) and take me to the PA hospital to get my plasma and then take me to Hans and Carls and help me settle in and then drop me to see Kel for lunch. This was to be my nice easy day!

She arrives and there's next to no space in her car. She didn't use the boot for some reason. We had to jam everything into the back seat on top of a whole heap of random shit. Her car looked like it would not be registered in any other state but Qld. But she seemed nice enough and cared for my health as she donned a mask when noticing I had one on. We got to the PA and I got my disability sticker out. Finally, I get to park in one of these spots, not illegally I thought!! As we rolled into the main drop-off/pick up area, I said to her, there are 2 disability parks available over there and to grab one and I'd be back in 5, 10mins max. She offered to come, and I said it’s all good. This will be quick.

On arrival back from the blood bank I look out and then went over to her car to then realise she's not in it and none of my stuff is either. Then I thought, this isn't her car. Just another unroadworthy silver vehicle that I now look like I'm casing to everybody else waiting haha. I scanned and scanned and couldn't find her. Stress was building rapidly. My cognitive being so off I doubted what car she had, what she looked like, why I didn't get her rego number, what I even told her to do. Maybe I said come back in an hour. Maybe I said 'don't' park over there. In the midst of my racing thoughts, I took a seat on the bench to think!

Spookily in that exact moment, Elise texted to see how my appointments were going. I didn't text back I just called her. She's like are you ok?!? (It's not like us to call like that!). And I'm like, I think I'm in the middle of an incident. I need some help. My concern was escalating because it was a super-hot day and plasma needs to be in the fridge and stress like this can cause SPS attacks and what if they'd done a runner with my whole life! This lady was also not part of my usual organisation, she was outsourced via an agency as there are currently not enough support workers.

Elise helped talk it through. She said step back into the foyer where you can still see out but the aircon is on and plasma safer. Call your support worker organisation and get them to call her organisation to call her. If they don't get back in 5-10mins take the plasma back up to the blood bank. Then Elise asked hesitantly.... how much does she have.... and I said, well, my wheelie sticker, my fridge, my drugs, my plasma equipment, my clothes, my laptop.... basically, my whole life but my phone and fresh plasma haha Now I'm thinking, I wonder why the boot was full. What on earth is this lady up to haha

Thankfully my lady Marie got onto them quick and back to me quick. There'd been some communication breakdown, and she was just down the road and should be back any minute now she'd been given a rev. So, I went back out the front and a few minutes later she was in the drop and roll section. She got out to help me. I was so wound up (my version which is pretty mild haha) and I said, where have you been? I've been waiting and very anxious worrying about my plasma getting hot. I'd asked you to park over there and said I'd only be 5 minutes and when I came out, I was all alone and you were missing! She said she parked down there..... i.e. over the mountainous grassy patch down a big hill and a different section of the hospital. I was like, why would you do that? I'm not capable of walking down there I would never have found you. She said something about all the disability parks being full and I said there were two. This whole chat was going no where and going down whilst she's leaning into the back seat trying to open my fridge for me and I'm basically looking at her arse, which was not helping my mindset. Then I said, look, we are together now, let’s just go home.

It was an awkward ride for a bit, so I decided to break the ice a couple km's down the road and said, geez the traffic is unusually bad (because it was for this time of day). And then she said, "yeah it was at the hospital". And in that moment, I realised with masks on and English as her second language she had no idea what I'd said earlier given she didn't understand the context now. I let it all slide and moved onto everyday chit chat.

We got home and we unpacked, and she noticed I needed a little rest. She then heard the washing machine beeping and offered to put out Hans and Carls washing. And I was like, yes please that would be helpful whilst I take a short break (inside voice, this can be your penance for earlier haha).

Then I got her to drop me for lunch with Kel and after a good vent and great company it was all in the past.
With note to self: always get the drivers mobile number and rego number if getting separated. Always get English as second language to relay the plan!

The weekend was very chilled. I'd planned for some Lego to be delivered so that the kids and I could play Lego and watch movies and that was a treat. Although I did require a massive afternoon nap.

Monday came and Jacinta and I met at the neurogenic bladder place. I went through a range of invasive testing to identify everything is overactive. She wrote a letter to my gynaecologist on things she'd worked out and then she got me set up with a Tens machine with 2 trigger points (one on my ankle and one on my shin) that are designed to help stop my nighttime toileting. I do this every day for 30mins for 12 weeks and hopefully, presto, I don't use the toilet overnight anymore. Usually, it can be used on any leg, but she has me using it on my left as it is always 2cm bigger than my right due to fluid and she thinks it will help that too. And of course I got more exercise handouts. Now I think I've got like 82 things to do a day based on everyone’s homework and handouts for my pain, SPS, respiratory, cognitive, core strength yadda bloody yadda. hahaha

So, this week I have a project to compile alllllll of the activities I'm supposed to be doing and find a way to either achieve them all each day or somehow break them up over the week and have some incorporated into Yolane's sessions (on a rotating basis) so I'm supervised twice a week to ensure I'm doing them right.

Jacinta then checked I was right for the dentist, and I said yep. We parted ways and I sat and reflected for a while then grabbed an uber home to clean my teeth and have a quick rest and then uber’d to the dentist.

On arrival they asked me to fill in the new patient form. I took one look at it and my brain just froze; it was not happy about this form. I asked the ladies if it was necessary given I've been there many times before and they said it had been over a year so to try do it as best I can. Roger that.

I sit down and it’s going very slowly. Then I come to the list of conditions on the left and Yes / No checkboxes on the right. You know the ones on most intake forms..... Blood Pressure issues, Blood disorders, Cancer, Heart Disease etc etc etc. At this point my brain breaks down. I'm ticking all the wrong answers for each on the list. I'm putting No when I should put yes and vice versa. So, I'm scratching it out and fixing it. Then realising I'm fixing ones not wrong and scratching out again. Then I close my eyes and do some deep breathing and think..... 1) I should have had Jacinta here or even someone’s child would do haha and 2) start again and write the words yes or no next to each..... this seemed to work.

This is the stuff that does my head in. I can do something really clever (you'll read more on that later) and then I can't fill in a fucking form. It's embarrassing. So, I go up to the ladies with my horrid form. All messed up. I blurted out in a soft shameful voice, here's my form. I'm really sorry. I'm currently cognitively impaired and I couldn't do the tick boxes. So I've used words and I've done the best I can..... the 2 ladies take a look and then kindly said, it's ok I'm sure the dentist can work with this and your old file. I'm confident the moment I left they would have been like 'wtf do you think is wrong with her'.

Now I'm in with the dentist who pretty much does away with the illegible form. As most of you have probably experienced my handwriting is atrocious, plus I'm dyslexic, so I hate writing with pen and paper and can't write with black pen (which is what I had to use) and so the whole thing would have been a dogs breakfast before the cognitive issues haha

We verbally go over my health issues and current medications. She asks me to explain my SPS triggers so they can accommodate them. I'm rattling them off, loud noises (so I have brought my Loop earplugs for when you are doing the noisy stuff), unannounced touch, people approaching unannounced from beh....... and in that moment through a separate open door that I'd not noticed the dental nurse comes in unannounced and I'm startled out of the chair. All 3 of us in rigid statue positions. Once I'd calmed, I said, that's exhibit A. The poor nurse had no idea what had happened, and the dentist said we are so sorry! Then we laughed and I said what are the odds of that timing. Then I thought perhaps I should have used a half dose tablet for this trip.

I then let her know in the last couple weeks I felt a bit of a growth behind my bottom two teeth so I'm glad I'd booked this appointment ages ago. She takes an Xray. The first one failed. They moved onto a kid sized Xray because I have 'a petite mouth'. Lovely. Something is petite.

I'm patiently waiting in the chair watching Paw Patrol on the TV on the roof with no sound. Next minute the dentist and the nurse are having one of those chats you know is not a good chat. Then the dentist comes over and asks if I'm in any pain. And I said, well, not in my mouth as such. But my whole head hurts, I got my eyes checked the other day and they are fine. She said have you had other issues, and I said, where do I start. I've had fevers, and can't stop sleeping, my cognitive is demonstrated in my form and basically, I'm all round just slowly burning out and away. I'm now not driving and have barely been able to work. I think its related to my new SPS treatment clonazepam and we are discussing that with my gurus tomorrow.

She said, well, come and have a look at this. And I said ok. I see my two teeth and my gums. She said that is not your gums that is one epic infection, and it’s ran out of room in your mouth and is now growing outwards. Its stemming from a 'void' in old root canal work. She said the daily antibiotic I'm on for my CF is way stronger than any they'd prescribe for an infection like this and the daily antiviral for my HSV in lungs and the clonazepam would be masking the usual pain expected from this. She said this was serious and would be toxic and looks like I've had it going on for some time. There is a good chance it is a cause of many of my problems. She wrote me a couple private referrals and got me the public system phone number to try. She said tell them all you are in significant pain and it's serious. Because you are, you just don’t know it!

I then plugged in my loop plugs and got my dental check-up and clean and finished off the Paw Patrol episode with no sound so had to choose my own adventure on what story I was following.

To be continued........