A month to the day of NDIS approval. I think I'll break this one down into health updates, the actual NDIS process so far, a bunch of FAQ I've been getting, and how I'm feeling. Theres a bit here so you can choose your own adventure and catch up over time haha

HEALTH UPDATES
Saw Dr Heiner on 22/7 the Monday post-NDIS approval. We celebrated and then ruled out elbow bend in my prior bronchoscopies. He said other lung-related diseases can specifically cause a left elbow bend (and not a right!). So rather than assume it was from the 4-week neck SPS seizure we should rule that condition out. He booked me into Pindara Private and somehow covered all the costs for me. They came back pretty good. So we can assume the elbow bend is a result of the SPS trauma. He wasn't convinced my sudden onset of breathlessness is related (entirely) and we've been tracking my oxygen sats and pulse rate when I have these random breathlessness episodes (separate to my SPS trachea spasms). It seems my left-field breathlessness is related to my pulse rate.... so next will be more comprehensive testing in hospital. I've parked that for a bit as I get through NDIS.

I started at the Mater Gastroenterology clinic in Brisbane on Monday 29th July (my professor has retired and I'm years overdue for a colonoscopy & gastroscopy and we think reflux in my trachea is an SPS trigger, and hopefully part of my >1 drink nausea .... to be resolved). Just when you think you've experienced all hospital processes you get to learn a new one haha It was like checking into an unknown conference at the reception desk. Without a breath and at rapid-fire pace the lady said:
"Ok Loren, you will see a nurse, doctor, anaesthetist, nurse. Take this clipboard fill it in, take these stickers, put the stickers on the wall mount over there and sit and hold onto the board".
It was 8am. I was up so early. I was not firing. I said.... sorry, I'm cognitively impaired. Where do the stickers go and what do I do with the board? I decided the first relevant party would call my name so no need to check those steps haha. A lovely triage nurse called first, she could tell my brain was not firing. She told me the dosey-doe of who I would see and at the end, the final nurse could be a different one.
My eyes were hanging out of my head. She noticed. She said, if you aren't in a hurry it might be easier for you to see me again and not the next available nurse. I agreed. I was in no state to break another new nurse in haha. She passed me on to see the Dr. After a brief overview of my history she declared me too complex for the clinic. I had to clarify "this specific clinic today, or generally, as my SPS and CF drs want me here for collaboration". She said she'd find another clinic with better specialists at the end of the month. I said any chance I could be flagged for an appointment post 10 am and she agreed! I walked out that door and bumped into my nurse and she said "That was quick". I said "I'm too complex'" she said "I thought that would be the outcome. All the best next time". I'm to go up again on the 26th for an arvo appointment :-) They'd not read my referral properly, they'd put me in with the everyday colonoscopy in/out vanilla issues. I got my uber back to Carlos and he said to me "That is the earliest I've ever seen you get up to achieve nothing" hahahaha
It wasn't a waste though as I also had to go to the PA to pick up plasma. Otherwise would have been super pissed.

I went back to the SPS crew at the Mater on 6th August. I'd booked myself into the hotel opposite the Mater to make life easier on this trip. Given Dr Heiner had told me he has two patients with SPS with a specialist that has been good, this may have been my Mater team's last chance. Fortunately, they'd finally done the research Dr Reece and Lucy my CF guru had put to them and wrote me a script for some midazolam nebules to go into a device I buy off the internet. On a well day, I need to rope Elise into a trip to the John Flynn Private Hospital where we sit in the car near emergency and take 1/5 of the dose to see how I respond. That has a story written all over it before it happens haha You can start choosing your own adventure options now haha

They also had the idea of me taking an extra half of my treatment an hour before my weekly physio to give Justin a fighting chance. He spends the first 45 minutes each week getting my concrete body to open up to get 10 minutes of treatment. This seems to have been a game-changer! My skin MOVES on arrival!! He can get to the core layers now. And I feel taller at the end of the sessions. We hope taking the extra drug is just a short-term solution to make some ground, either way, it's wonderful, I can't remember when my skin moved like that last.
After the hospital, Hans was able to join me for a super early dinner at a delicious French Restaurant a few steps from my hotel. We think it's the first time we celebrated a bday together since Uni Days!!! I felt like a normal human for that moment in time and it was a solid period of happiness!

Generally, my health has been its usual, up and down like a yoyo, day by day, hour by hour. On a rare day ok, other days have temperatures and rigors, need a 4-hour nap here and there, infections are being fought by my daily CF antibiotic (winning so that is good), had a long rough drawn-out plasma treatment the other week which led to a major SPS episode in the middle of the night in my voice/trachea. Scary to wake up not breathing and in spasm like that. And I still don't have my backyard kit! But these days I'm so used to it that I just calmly worked through it.

NDIS PROCESS SO FAR
Well, it's a part-time job. I've lost count of how many appointments I've had and people joining the team. I called my OT Janelle to say you warned me but wow, this is way more overwhelming than I'd anticipated. She helped me problem-solve some of the decisions I was having trouble making and coached me to change the order of some things to benefit what I need now rather than later and push out some of the first consults. She knows I'm zero or 100 and I wanted to get it ALL done now haha

The list of support and interactions is LONG!! My MS Qld Coordinator, the Support Workers, the Cleaning organisation, The Dietician, The Speechy and Swallow study in the hospital, The Neuro Cognitive physio, The in-house Chef, The Psychologist, My Allied Health Assistant (to come to my Appointments). Each of these people/organisations needs a phone consult, a risk assessment (in person or video), a service agreement read and signed, and then you start. Some need forms filled out, others do interviews. It's just been A LOT.
And keep in mind my cognitive is on and off. I've been trying to keep it to 3 meetings a week because then I have my usual physio on top and doctor's appointments and I try to fit in 10 or so hours of SOS, plus treatment and recovery. I realised this week how drained I was from it when late at night after a meeting with my Dietician I realised I'd been giving answers sometimes that were for my Speechy and she just politely nodded. I forgot who I was even talking to. But didn't realise until flashbacks that night (proud of my cognitive did kick back in, usually I'm none the wiser). She's probably filenoted my brain issues or thinks I'm half mad haha.

The best news so far includes:
My wonderful rehab champion Yolane is finally back on the scene. We had a catch-up a week ago just to come up to speed with everything since the last-minute forced move out of Caba/say goodbye and neck surgery and then we got started this Friday just gone. Besides my internal organs going into spasm, the session went well from her perspective. She thinks I will quickly bounce back to where we were and I'm not as bad as when we first met over a year ago. That was relieving to hear. I did wake in the middle of the night with the SPS attacking my internal organs but by daybreak, everything had settled and my body was appropriately tired and a little bit sore. I did need a 'quick' nap that turned into 4-hours and missed the first quarter or more of Collingwood yesterday! Next week we will run the session with a half dose of my meds to help keep spasms at bay and we think hopefully after 3 sessions my body will adjust and be ok!

The Chef started Wednesday and is incredible and the process is remarkable (she does my groceries for me, cooks and cleans and takes the rubbish out). And she is so good at it that the food tastes amazing AND the shopping bill is way less than if I were doing it! She also does portion control and packages it all up and therefore I can not sneak back to the pan for some little extras! I think I'll be able to shift the 5kg I've set as a goal no worries under her reign!! I don't want to jinx it but already I feel some energy returning from not having to do this process of life. I've noticed I've been able to stay up a little later and not needing a full 12 hours in bed.

FAQ's
1) How did Celine do her Olympic performance in Paris?
Well, if you noticed she was up high in the tower and just with her piano player and not down in an audience. That would have been planned! This would reduce her startle response to all the noise and unexpected audience feedback. She would have been dosed up on her wonder drugs and would have had her physio and Dr no doubt on site! But also, she's worked super hard and been doing intensive therapy for 4 years to get to this point!!! So it didn't 'just happen'. Without sounding like I'm diminishing her experience with SPS, she only has one disease to worry about and a full-time team around her. My NDIS will hopefully be my game-changer/equivalent!

2) What did you think of the Celine documentary and interviews?
Not a huge fan of her music and she's certainly eccentric! But she's a fighter and I could identify with her feelings of grief and loss of doing the things you love. The SPS message is out there now and she's donated to help the research which they say has moved ahead 50 years just by her coming out and then her donation to her Drs research! She's on all the same treatment as me, and many in my support group see her doctor and have said they have the same treatments. We just don't get to live in a mansion with a full-time crew on site haha

In the final scene when she had her 'crisis' I was a little traumatised as that is what happened to me in post-op from my neck surgery (from the arterial line needle) and those fuckers left me in that state for 2-3 hours with no interventions (correction, incorrect interventions - ketamine which I am not supposed to have). So it was hard to watch and forced me to reflect on that dreaded experience. If you watch the scene, be ready, it will be hard to grasp how that was allowed to happen in a first-world country hospital. You will notice the drug they gave her (the one I've been wanting to build in the backyard because we don't have it in Aus) had her return to normality in minutes, and even able to sing!!!!
So that made me want to fight harder for the drug and also reminded me I still need to officially deal with the unresolved trauma of that post-op and ICU stay and write my complaint letter as requested by the nurses on the ward. Being left in crises for 2-3 hours and then without the needed treatment for another 24 hours (until Dr Reece stepped in on a Friday night SOS call) was a big setback for my SPS and should not have been something I had to deal with in a 'safe environment' like a hospital.... I should have been focussing on the recovery of my disc replacement.
In one of her interviews, I learned she'd seen over 100 ENTs before her diagnosis and they weren't a part of her diagnosis or helpful, so I've decided she's trailblazed that pathway so I've cancelled further follow-ups with my Adelle ENT regarding my spasms. I'll divert to my everyday ENT for my voicebox growths etc.

3) Is SPS your main issue and how does it relate to the rest?
I will do a full post on my 'rare and exciting constellation of diseases' to help make it easier to comprehend. But in short, my PID is my worst condition. It is like the ringmaster of the circus. It decides who can join the show. It brings neurological, autoimmune and cancers as the usual suspect comorbidities. This doesn't occur for everyone. It's a spectrum disease. Unfortunately, the gurus are all in agreement I'm one of the ones who will suffer from many things and continue to degenerate ... the circus will go on and likely grow in performers.

It is why one week I'm fighting HSV in the lungs, next week a sore on my hand that I don't know how I got and won't get better, another time infected cysts in my breasts needing draining or treatment, rigors from high or low temperatures with no easily identifiable cause, sensitivities and allergies, more pneumonia's than I can count, the ability to have 3 influenzas on board at 1 given time etc etc. It can easily have me healthy one minute and fighting for my life the next as we've seen when I've been an active participant in society and picked up infectious conditions. Lucy my CF doctor has done stacks of research and has said with SPS the main scary item is the thoracic, throat/trachea/voice box spasms, they can kill you but that is why we are building our backyard drug that Celine has and my new treatment is dampening the severity of my day to day SPS so that is promising.

The PID also leaves me significantly depressed during times when others are sick and I can't see them. I want to help them. I get serious FOMO. I want to play and I want and need to experience valuable time together with my loved ones. It's the part of my life that hurts the most. It's just shit. e.g. Recently Johnny, Cien and the nieces came up and as luck would have it poor little Bella fell really sick with Influenza A. I spent a full Saturday crying at how cruel life can be to all of us because of this disease and then working out how I could see them safely. I needed to. I reflected fondly on a day Micky D found a way for me to safely play with a litter of puppies (this was whilst I was on my 3 months of bed rest recovering from the 3-on-board infections.... one was Madagascan Bird Flu [not joking haha] and pneumonia incident in Sydney in 2009). I realised this was my life and I had to come up with the equivalent of the puppy safety suit, not just for this catchup but going forward. It's happened so many times with so many of you. I've got to accept that part of my life, our life, so I need to work on ways around it.

1 Asbestos Suit and a few days later I got to hug Bella and Gracie, and with some more affordable Poncho's I had a couple of outdoor catchups.

HOW AM I FEELING
It's been a yoyo
- Deservability issues and feelings like Dr Heiner deflamed early on.
- Shock that it's finally happening.
- Relief that is starting to kick in.
- Gratefulness that I truly get to have a second chance at life.
- Impatiently anticipating how much extra energy and time I might get to have and what to do with it to make it count - but it is starting to become clearer as the days go by. I've had a sideline global online business Chronic Illness Hope ready to roll out for a few years but been too unwell to finish and launch. So that will be a part of it. A few of you have been encouraging me to write. I think I'll start with one idea which was writing for adolescents on how to keep living a 'normal-ish' life when nothing is normal, particularly navigating diagnosis, hospitals, safety issues, how to build appropriate resilience, methods on how to cope, problem solve, and advocate for themselves etc.

Lastly, I'm in absolute shock that it's been just over 1 year since the neck incident. I kept telling the NDIS folks in the interviews that it happened like 8 months ago until one of them pointed it out. No wonder I'm tired. A year of the 'neck incident', no sleep, SPS diagnosis, treatment toxicity, homelessness-deluxe, ping-ponging around with where I'm living and doctors and changing treatments, new problems to diagnose and track, readjusting SOS for the 87th time, coming to terms with the 'spectrum' of my PID and future.

The lyrics of Brighter Days got me through (among all of you of course!). If you are ever facing a dark time get onto the song:

Don't give up when your heart is weary
Don't give up when your eyes are teary
Don't give up when your voice is trembling
When your life needs mendin'
Don't give up when the hurt is near you
Don't give up when the world seems to be broken
I'm still hopin'
With my heart open ayy ay
For a brighter day
Don't give up when your pride is bruised and
Don't give up when you fear you're losin'
Don't give up in your darkest hour
Cause you got that power

As of today, I feel like I'm in a boat out on shore and can see the shoreline lighthouse light flickering but not sure if it's a month away, a week away, an hour away, or a day away. But I can see the light and it's uplifting.

When I saw Johnny the other day, as we said a rushed goodbye, he blurted out it was good to see me seeming happier. I think I blurted something back like, 'It's all relative' or 'that's hard to define'. and then drove away. It got me thinking. A lot. Only a few days ago I couldn't stop crying at not being able to see them and right now my cup was full from 20 mins of outdoor play and asbestos suit hugs. Happiness is soooo relative to where you've been, moments in time, and what is in front of you. Overlay how much sleep you've had and any grief and loss you are facing.

Over the last 12 months, I played the song above most days to carry me through. More recently, I think Johnny's words helped me reflect and identify, that this particular marathon may have ended and maybe my happiness trajectory whilst still up and down like a yoyo is gradually turning .... trending upwards like on a graph. I feel like the most fortunate person to get that chance again, where happiness can be trending more up than down. I needed those words to make me realise all the little 1%ers are kicking in and the tide is turning.

Strangely the days just kept going by.... it didn't feel like a year.... so much has happened.
Not sure how it feels at your end? Like a year or more or less.

As the days go by.... a classic song. Fitting really. I think this will be my mantra until the next post. These lines in the song are not designed for my situation, but close enough:

Sure as the wind keeps on changing direction
I've come to understand, there's no such a thing as perfection
And what went on before
Doesn't matter anymore

New life is locked and loading. I'm drawing a line in the sand today and looking forward, not back.

Photo montage below on the last month. Commentary to support each one if you click in.