It’s been a hot minute

Last time we left me I had a port installed. That is still going well, which is good cause they get infected quickly. I’m still doing IVIG and doing it fortnightly and I’m hoping to one day soon access my port myself to do home fluids. I’ve done the training but there is something about stabbing a needle into your chest and the huge infection risk.

2025 continued

I have had two surgeries and boy was it a cluster,…what was planned as two back to back surgeries in the same hospital ended up in 2 different hospital due to equipment fun and concerns about recovery. I struggled a lot even with my port getting anyone to access it and ended up with some huge pain issues due to this. It did allow me to see my old and favourite pain specialists and say hi since I kinda disappeared when I moved.

I started with my Sacroiliac Joints (SIJ) both being fused and leaving my fused at my tip and tail! This was do endoscopically so healing was easier but I did my shoulder from using the walker and no weight bearing.

Bilateral SIJ fusion (plus my pump)

My second surgery was another endoscopic surgeon by the same surgeon. I was fasted and getting difficult IVs put in and they cancelled right before! Stressful much! This was to deal with a venous fistula believed to be giving me CSF hypotension issues.

Don’t ask but this is sometime during the surgery lol

Both these surgeries were also interstate so my parents came from the month, but I still ended up having to coordinate things from my bed because they stressed out so much. Also a costly endeavour!

2026

Has started quieter. I tried lidocaine infusion but that did nothing to help. I also started myotherapy to help with the jaw/head/neck issues. Unfortunately, like most things it’s pricey.

I have also been finally dealing with my dental issues. Strangely prioritising my brain surgeries, having medications that impact tooth enamel, health issues that impact dental oral health and overall just being sick has equaled cavities. As I’m being seen publicly (which I’m thankful is available) means it’s taking forever. We didn’t even get to my cracked tooth till the third appointment! The first one was just my medical history…..so this has not been helpful for my dental phobia to be going over and over and getting a singular thing done each time. I wish I could have afforded sedation and them just going for broke and cleaning up all the fillings. Again that comes down to cost, so I’m dealing with anxiety worse than when I have brain surgery over and over. I tried medications but I don’t metabolise them enough to be helpful.

I got a new wheelchair but adding my light drive on meant I don’t have my safety tippers anymore which means my physio is worried. Now I have to chase up how to get them back on and spend my time wondering how and item I need for at least 5yrs before I replacement that they didn’t consider this. They are only the experts. This is also like my car hoist being essentially useless because it’s too high to go to most parking structures. So unless I know (and most hospitals it’s not) so it’s a useless thing that the experts never considered. That’s why I need a new car (mine is 16yrs old) so I can fit my wheelchair and have accessibility.

Next up I have another $1500 expense to trial a neurostimulator (and another $1500 if it works to get the full surgery. That’s nearly $4000 in pain only medical expenses this year alone. I went over the Medicare threshold in 3 weeks this year (which beats the 2 weeks last year). We are trying to get seen publically but it takes forever and I can’t wait in pain and suffer. I’m hoping this gives me the relief my pump gave me and I was able to go back to working and studying.

I’ll try not wait a year before positing again!

If you want to help financially click here for gofundme

Try any of these links with many thanks. If you can’t just send a positive thought or comment :)