I hate this.
The universe keeps wanting to kick me… or maybe I’m just not getting it. Maybe I’m meant to advocate for this shit. I don’t know. I don’t really want to, because that’s not me. Or it wasn’t. *shrugs*
There’s no light at the end of this tunnel. I remember at sixteen, seventeen years old being incredibly angry at my mum… for so many things. Mostly her inability to let go.
Being born at 27 weeks and weighing 830g at birth in 1983 comes with its own challenges.
I coped, sort of. You get to a certain point where you can walk and do all the things and you’re just done. You’re normal, or so you think.
Nope. Universe shitting on me again.
16th May 2024.
3pm or near enough. I’m not a numbers person, but I’m starting to think 3 might have some significance because it was 3:45 when I had to dash out of a previous job bleeding at 28 weeks and 1 day pregnant… that was scary.
This was that but different.
It started with my left eye, I’d been having constant headaches on the left side since May 1, worked through them, until the 15th May where I thought… maybe a dr’s visit would be worthwhile, because it can’t be right. But I had just gotten through a rent inspection and changes at work and medication for hip and back pain… maybe, just maybe it’s a headache because of the meds. So I stopped those completely May 3rd and just lived through back and hip pain for a while. Which thankfully wasn’t as bad as it could have been.
Anyway, it started, and it progressed to my lips being tingly and the left side of my face being numb, but when I was getting pins and needles in my left hand… that’s when I started to think, this isn’t a migraine. I can’t see at all well out of my left eye, so I can ignore things to a degree.
Cue panicking my team leader… probably a good thing I was in the office, I was, just like all those years ago in 2007, considering working through… 2 hours left of my shift… was also considering walking the few blocks to the emergency department, as you do.
Instead what happened was an uber, followed by a seven hour wait. The ED is actually quite fun when it comes to people watching. If I’d been there with my kids for any number of things we’d been there for in the past, maybe I would have engaged more.
But when your symptoms match that of a stroke it’s not as easy.
So I had my phone… no book… god never go to the ED without a book… and I had several people trying to keep me distracted through messages. I made some calls and just generally waited.
Finally, at 9 (yes I manifested that one… next time I’ll go for a less then 7 hour wait) I got in with the nurse, a lovely guy with an Irish accent.
And this is where advocating for myself went wrong… I have cerebral palsy with left side weakness. I have migraines. None of this was new, but as my husband said today, it’s changed.
Except unlike my husband, the ED weren’t listening to the fact things had changed.
When you watch your left side not react because its numb and the reflex responses are fucked up… yeah I was silently freaking. I may have voiced it or maybe I thought it. That’s not normal.
Diagnosis by neuro was to get a CT, give IV pain meds, not Tramadol because maybe it could be that, but it shouldn’t be a medication overdose headache, but we’re leaning towards an atypical migraine at this stage. Also I should note that the pain scale and I are not friends. I figured out after the fact, that my: I’m still having pain but it’s a 1-2 was in reality a 4-5 on the pain scale.
At 1am I had a CT… at this point after shivering all the way through the CT I was offered a blanket. They were so busy, I was never told where the call button was or asked if I could have a blanket and because they’d ruled out anything serious, I was ignored. Maybe I should have been more vocal, but it was really late.
On waking my pain was almost non existant, and my CT was clear, despite certain white matter loss and my 27 weeker status.
The “Oh you’d never know you had cerebral palsy or were prem” got old… fast.
Something wasn’t right. I knew it. But I had discharge orders and follow up with GP for an MRI.
Okay. Fine.
Side note: I hate hospitals. I’m not a great patient. I get restless and bored easily and feel trapped. Maybe it’s a prem thing. Maybe it goes back to being little and having surgery to lengthen my left tendon and being alone and wanting my parents, but they had to work, care for my sister etc and couldn’t be there… I don’t know.
So I left, had my dad take me home, and then after doing all the things I needed to for work… slept. Because at this point the headache was back.
Now here is where it starts to go downhill.
I worked Saturday.
Saw the GP on Tuesday, who told me: At your age and low risk it couldn’t have been a stroke, it’s got to be migraines. Get the bloods and we’ll see what’s what.
At this point, it’s really starting to sink in that it’s not a migraine. No migraine I’ve had in my life has ever presented with these symptoms.
Spent a week trying to get bloods. Long story. Inexperienced technician trying to tell me I was dehydrated. Fun times.
Go back to the dr for the results and to push for an MRI… oh that will be $400 on you because I cannot bulk bill. Only the ED can. I will follow up.
On the 29th I get the blood test results… nothing wrong except really low iron levels. Discuss options and then bring up the fact I’m still having headaches daily and the numbness, tingling has not gone away. So the GP rings ED and presses them for an MRI. She’ll get back to me with answers on that. Okay, but if it’s a no I’m paying the $400-$500 out of pocket. (Yes the figure rose, while she was talking to the ED)
Fast forward to June 4th and I’m back at the doctors because I’m still having symptoms after freaking myself out at the end of May… love jumping at shadows… not.
So he.. yes I switched drs because the GP I’d been seeing for the headaches, is now on holidays. No she didn’t think it was important I know that she was even going on holidays.
I tell him my story, he does all the things… including: Oh we can totally bulk bill that MRI for you, we just need to write all the right things on it.
SERIOUSLY!!!! So angry at this point. WTF!?
Now here’s the fun part. I ring SKG not expecting to get an appointment the same day. I did, yay for cancellations. Side note: if it hadn’t been bulked billed which it was it would have been $275… heaps cheaper than the $400-$500 from earlier.
So I get the MRI… left with a headache.
Then there’s an agonising wait for results with yet another GP because I wasn’t waiting any longer than I had too.
Monday 10th June..
More fun. GP: You know you’ve got a cyst right?
NO!
Cue me in a completely panicked fashion explaining what I know of my own medical history. The prematurity. The stroke I had as a baby, the almost dying, the 10% chance of survival… on and on. I don’t remember having any brain scans as a kid. Maybe I should get my NICU records.
GP: Yeah that might be ideal.
FUCK.
Walk home. Yes, I walked. Finally got a script for migraine meds. Don’t drive on them. Yeah I don’t drive, so not a problem there. It was probably the longest 15 minutes of my life. Hubby went as far as to say he would have come with me, but me for many reasons just wanted to get it over with and went to the drs alone.
So… its a cyst. A porencephalic cyst to be exact. I’ve had it since I was a baby. The symptoms are common. The deficits align. I haven’t unpacked that yet.
Everything fits. I had a stroke and the cyst formed because of it and the cerebral palsy… all of it is likely because of the cyst. But most kids have it removed/dealt with as a child. For whatever reason… be it medicine or just that it didn’t show on those initial NICU scan it was missed.
It’s been a week since the referral has been doing its thing. I haven’t got word that it’s been accepted yet, and it could be rejected.
I’m currently living with a porencephalic cyst in my head that has changed in someway. It’s 36mm x 21mm… it doesn’t seem small to me.
Frank… hubby named it… is hell. I’ve got a massive amount of what ifs coursing through my mind and no answers. It’s sucks. Did I mention how rare it is? 3.5 live births in 100,000.
That’s… 0.0035% of the population.
But I’m working through.
I took a day off recently because I spiralled and couldn’t make it out the door to actually go to work. Weirdest feeling. Worse was the: aww, I wanted to see work peeps.
The introvert in me isn’t normally like that.
So what am I dealing with you might ask? Besides Frank…
Well…
Left side tingling and numbness. This can be anything from my left eye feels tingly to walking around on a numb left leg. Fingers/arm with pins and needles. Numb left side of my face. Rarer is the left side of my head is numb.
Headache. Left side. Regularly sits at about a 4-5. It has peaked at a 9. It was late. I almost called an ambulance, but all I wanted was sleep. So I just burst into tears instead.
Migraine meds (the cocktail of Naproxen, Tramadol and Rizatriptan [makes me nauseated] bring it to a 1-2) Zero pain is rare. I want zero. Probably won’t get it.
Vertigo. If you’ve ever been dizzy, vertigo is another level. I was sitting – talking – and the room spun around me.
Nausea… though likely the meds I take.
Trouble processing written information. Trouble spelling. Trouble multitasking. My reaction times are slower. It’s going to seem like I’m making these up. Because I’ve had some of these deficits prior to May 1st. But… these have all changed. Spelling is masked mostly through me self editing before or after I post something… or autocorrect. Word finding difficulties. Had a moment at work… scared the crap out of me. I couldn’t talk. The brain was trying to compensate and I just couldn’t speak. I had a moment where I couldn’t remember my sons name. I was looking at him, while my husband was talking about our eldest son…. and I just couldn’t grasp his name.
I think collectively the above fits with aphasia, but god knows.
None of this is regular… except maybe all the cognitive shit. It’s hard to tell. The anxiety which I live with, but what I had handled because work is a huge distraction, is kicking my arse. Depression is too.
Ironically, this is the most I’ve written in weeks… it’s not even escapism. Which honestly, I want write now. (the spelling error is deliberate because this is what I’m now dealing with… I thought “right” but my hands wrote “write”)
I’m craving things I shouldn’t… I can relate to people I never wanted to relate to in a million years.
I miss my mum. I actually find myself wishing she hadn’t been stuck in her own patterns and coping mechanisms because maybe instead of being scared and anxious she would have been able to fight.
I’ve always said seeing the NICU from the other side is a whole other level. I lived it. I was in it. And then I got to go back at 24 and experience it first hand. Have a conversation with Dr Noel French (my paediatrician who wasn’t my daughters paed) about my daughter’s brain. Meet some of the nurses looking after her that looked after me.
Leaving that hospital without her… was hell.
I don’t want to be back here. Reliving childhood crap. Dealing with all the feelings. It’s impossible to deal with all the feelings.
I want out. I’m done. I’m 40 years old, dealing with a neonate insult.
I don’t want to.
And the rational part of me goes. It’s not cancer. It’s not much of anything. It’s a cyst. I’ve had it my entire life.
But this is the thing. There are changes. And fuck… I’m a writer. It’s in my soul. Has been since 1997. I’m published. Freaking USA TODAY Bestselling Author tag. Doesn’t get better than that. So the changes to my cognition… scares the absolute crap out of me. Because I have a shit tonne of unfinished stuff. And Iron Faerie won’t run itself and all the things.
I want Frank out, but that’s brain surgery and um… I’m mentally running the other way and facing my own mortaility… because anxiety… and worse case scenarios.
Heart, Lungs, Brain… that’s the issues premmies cop. I come across that yesterday I think with a advancement posted by 9News 8 years ago… that said drs in Perth had found a way to test blood in pregnant women to see if they had the gene for prematurity.
Dr Alfred Asher Grauaug was the prioneer of the NICU of King Edward Memorial. He was my doctor. Dr Noel French is retired but I know I was part of his research in the 80s and 90s. And I appeared before a bunch of scared NICU parents during my daugher’s eight week stint because I was in his words: one of the success stories.
I survived.
But now I have a cyst and it sucks.
I’m not suicidal. I don’t know what that looks like.
It’s never been an option.
But shit is hard and I don’t struggle well, and asking for help. Fuck that. I can fake that I’m okay right?
Maybe not. Cause I know I’m not okay, but voicing that is hard.
Where did I leave that mask?
