Gravity

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Ha! We’re not done yet. Not even close. I’m not going to rehash what’s happened in the almost 6 months since I last commented on the hell that is this shit show. It’s fucked… 100% fucked. I don’t even have enough curse words, I’m so angry.

Okay, the anger hasn’t really gone away. It simmers, sits in the not so distant recesses of my mind and just stews. Not very helpful or productive… or anything much really. It just is.

The second MRI was a joke. Stable appearance… fuck off.

If it hasn’t grown… ha spelling almost got me… yeah that’s my reality now.

I’ve lost the remaining vision in my left eye… so that’s fun. Couldn’t tell for a few months, because of the mind altering pain, and because when you can’t see well out of one eye you kinda get used to a certain degree of blindness, but then May 16th happened and the vision died and then my brain was trying to make sense of the loss and light was behaving weirdly and I had to move my head to cross the damn road, which felt strange, but all the pieces took time to actually fit together and cement that my vision in my left eye has changed. So, that was determined in July.

So… vision loss… left side migraine like headaches that don’t respond to meds. Latest med to fail… propranolol. Somehow the pain spikes when I take it, settles a fraction and then I live at a 4-5. I think. Pain scales have no meaning anymore. I don’t know where I am because this has been my constant for the last 6 months… longer actually cause it’s December. Another week and we’ll be in 7 months territory.

I don’t want to. I’m beyond done. If I could curl up into a ball and just shut the world out I would.

How do you advocate for yourself when even your GP throws up his hands and denies you a second public health referral on the grounds they’d ask too many questions. WTF!?

So, now I’m counting down the mandatory wait times for a pre existing condition on private health and I hate that too.

And if the cyst hasn’t grown… he’s a random thought… fuck here’s… if the cyst is 36x21mm was it always that big? And if so… how much room did it take up in my tiny 830g 27 week premmie brain?

I’m obsessing, but these are the thoughts that actually don’t keep me up at night, but do creep in.

I shouldn’t be here. I’m lucky to be alive, I get that.

But this… this… if I go to a private neurologist and I’m given the diagnosis of some form of migraines I may scream the fucking place down… migraines don’t cause vision loss. I refuse to believe that I am a rare enough case that I’m like the 1% or whatever that actually lost my vision to fucked up migraines.

Migraines can/do cause neurological damage over time… I think. I’m clutching at straws… I really don’t think its migraines.

It’s hard to focus on getting answers when you’re battling the constant fear that you now have an expiry date. Yeah, I said it… I went there. Fear can be a powerful motivator… totally. Except in this case, all its doing is making me aware of every little thing I have done.

Anxiety sucks.

Depression is hell.

And if I had the ability to just drown in both… I would. Except I don’t because of the 101 other things I have to do.

So, now I just need to find a way forward, while the medical feild just fobs me off.

And maybe attempt another new medication in the meantime.

 

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