More health updates from me because this situation is never-ending

This is what I've written on my social media accounts (Facebook and Instagram) - I've added a bit more detail into my blog post here.

PIN IT

More health updates from me because this situation is never-ending

TLDR: we have no answers. But here are some more health updates from me.

I had another appointment with my haematologist last week, and we are, frustratingly, still in a period of uncertainty and a lot of unknowns. To be honest with you, I am very over it and would just like either a treatment plan or some sort of answers. Obviously, something IS wrong, we just haven’t worked out what yet.

In good news, I don’t have any of the genetic mutations that are common with MPNs (myeloproliferative neoplasms). However, this doesn’t completely rule them out, as it’s still possible to have an MPN without a mutation (they’re known as triple-negative MPNs). The only way to fully rule them out is through a biopsy. At this stage, I am being told “you’re too young to worry about that right now” and things like “maybe it’s your weight” (ugh, the amount of times I’ve been told that with being both underweight/overweight). The haematologist seems to be going with a “wait and see” approach. It’s frustrating, and the "wait and see" approach is likely to see if my platelets and blood cells keep going up.

I am also getting tested for some other blood disorders – things like thalassemia, and there are possibilities of things like endo and PCOS. However, they did a lot of tests for those things back in NZ when I was first going through my IBS diagnosis and never found anything conclusive, except that time I had a ruptured cyst (they would need to do exploratory surgeries as that's the only way to know for sure). So basically right now, we don’t know – I feel like I should have a giant question mark above my head like a Sims character (like a plum bob). There also isn’t any obvious autoimmune markers, which doesn’t really tell us much about what’s going on either, as you can still have an autoimmune condition without the markers. Bodies are weird. This probably means it’s not Crohn’s, so those tests aren’t urgent (but I’ve always had inflammation in my gut, re IBS). I see the haemotologist again in January 2026 for more follow-up.

In regards to the suspected POTS, I don’t have an appointment with the specialist until December 2026, where they’ll most likely do a lot of testing, but a lot of my symptoms do line up with this condition (they just don’t explain the high platelets or blood cells). What we do know is that some sort of chronic illness is manifesting, so I’m just another one of those chronic illness girly’s with no answers. At least with suspected POTS, there are lifestyle changes that I can do, which I’ve mentioned previously (compression socks, electrolytes, extra salt, etc.) Any advice for the weather warming up in Melbourne would be great, though, as I don’t have any temperature regulation right now.

I keep saying it’s frustrating, and everything probably sounds so repetitive, but this is just me being vulnerable with my health struggles. I also want to point out that I think I am a relatively healthy person in regard to my lifestyle. Even though I have had increased exercise intolerance this year, I still exercise as much as I can, go for walks, drink so much water, get out in nature, eat healthily, and have a social life. Like, I meet most of Maslow’s Hierarchy of Needs LOL.

I will also need to go back to my GP to discuss all these things and see if she can refer me to any other specialist/do any other testing (because it’s always tests, tests, and more tests with chronic health conditions). However, I really just want to be able to celebrate my 30^th birthday over the next 2 weeks, so I’m going to put myself first there and go back to the GP after I’ve done all my celebrating because we all deserve to celebrate milestones.

I want to keep sharing my health journey as I know many of you are facing or have faced similar struggles in your life, and it's important for us to stand up for our health. I'm also super grateful to those who have reached out to me about this and shared their own stories with me. It's very lovely.

So right now, this is just the trailer to my life. Obviously, the feature film is coming soon (I bloody hope).

Ash xx

PS: Thanks for reading and keeping up with me!