Transition of Thought

My psychosis episodes warp everything.

They pop up out of nowhere and run my entire life until they wear out.

Then it can get quiet for a few days.

Then it ramps right back up into me.

I have been noticing my concept of time lately.

Everyday my ability to track time rises and fades.

Sometimes it seems like a very normal pace.

Other times it’s as if a week passed in a day.

Time rarely drags for me.

Most of the time it feels like someone is forcing the hands of a clock to speed up.

It makes me really quite tired.

When I’m coming in and out of psychosis like I do, it makes everything that much more confusing and off.

Why is time so fleeting to me?

How does this happen?

It’s for sure been better since getting on Invega.

But the poor concept of time that I have is frustrating though.

Months really fly by.

Most of the time I’ve held myself up in my apartment.

For one reason, I’ve been in a lot of physical pain this summer when waiting for a back ablation.

My L3 and down.

It was burning so bad I could barely walk more than ten minutes without having to stop and sit so my back would stop spazzing.

It was really pretty terrible for months.

I got an ablation procedure done in mid September now.

An ablation is when they go in with a needle and use an ultrasound or X-ray to cauterize the affected nerve casings (see here).

Doing this numbs the area for anywhere from six to twelve months.

It’s the best thing ever honestly.

And have been feeling much, much better within the last week.

But there’s still an issue.

The ablation went from L4 and down.

I needed L3 and down.

So it feels like there’s a line in my lower back.

One side is cool and calm.

The other, the top of my lumbar spine is burning constantly.

I legit have to show my PA one of my past ablation procedure notes to prove that they didn’t go up high enough.

I’ve said this to them before.

I told them this a few weeks ago.

And had already dropped off the same notes prior to my appointment at the end of September..

But, the PA hadn’t been given anything and there was nothing noting that in my chart.

So, here I am again, having to wait for no reason.

I hate how much I have to advocate for my fucking healthcare.

It’s absolutely absurd.

This friday I have an appointment with the PA again..

He’s nice enough.

I’m 98% sure he’ll agree to have them do another round at the L3 area.

But, I honestly don’t know.

Compassion is lacking all over that place.

My insurance is limited, and this is one of the only places they’ll cover.

Cool.

To keep up the rant, I have something else on that mandatory self advocating topic.

I had a psychiatrist appointment the other day.

I don’t even think she’s a psychiatrist though.

I think she’s an LPN.

Anyway, I asked her what it means that the Invega injection has been helping me so much.

Seeing as how it’s only FDA approved for schizophrenia and schizoaffective disorder. 

She told me that Invega is FDA approved for bipolar also and that my insurance wouldn’t have covered the shot if it wasn’t for bipolar.

Well, the Invega injection that she put me on is only FDA approved for schizophrenia and schizoaffective disorder, there’s an Invega Sustenna face sheet here.

Besides that, I’m on a program at the clinic that covers anything my insurance doesn’t.

Including prescriptions.

So, she lied twice.

I told her I have to disagree with her.

She laughed and started typing.

We were done with the visit anyway, so I gathered my things and walked out of the telehealth room.

I went straight down to the medical assistant’s office.

The gal who has that position, and my caseworker, have a much better idea who I am, what happens in my life, and what’s been happening in my life than the prescribing physician does.

They are both agreeing that schizophrenia fits my symptoms much more accurately as well.

My therapist has agreed with me also and they know this too.

I would never ever ask a doctor to even think about changing any diagnosis of mine unless I felt they weren’t seeing something that was starting to be obvious.

But that’s what’s happening.

So I asked to switch clinicians.

I need another opinion.

I have family history of schizophrenia.

It’s something that, put next to all of the symptoms I’ve had over the years, and how well the injection is working for me, can’t really be swept under the rug.

I’ve never been on a medication plan like I am now.

No mood stabilizers, but a healthy dose of antipsychotics and anti anxiety related antidepressants.

I have been on probably, easily, eight mood stabilizers in my life. 

Not one has worked like the Invega injection does.

Not fucking one.

Even if it’s an antipsychotic, I have never believed that a medication would ever really, truly work for me.

I told my psychiatrist all of this too.

She shrugged that shit off.

I told my dad about this later in the day and he said that it sounds like her ego is in the way.

I couldn’t have said it better myself.

What is she gaining by shutting down this conversation?

It’s my life.

It’s my mental health.

The amount of data I have in my mood app now is just amazing and my graphs do not reflect bipolar moods.

At least, not yet, if they’re going to.

There are much smaller moods than I expected.

Also, my moods are much more impacted by doctor appointments or other high stress situations as well.

I mean, I’ve got almost four months worth of information.

And my psychosis symptoms are all over the board.

Mood incongruent, my therapist says.

And much, much more often that I originally thought.

I told my shrink about the ghost delusions too.

She could not have cared less.

It’s so maddening to be invalidated by someone who’s there specifically to have your back in the situation.

There was nothing said like, gather more data, and we’ll see what we think in a few months.

Or anything like that.

I was just shut the fuck down.

The journey to get to a suitable destination is much more painful than it needs to be or should be.

Now I wait, again.

I wait for another psychiatrist to be available and able to take on my caseload.

And the time continues to fly by in massive chunks.

I realized today that I have been waiting for the ablation and some physical relief since before July.

That’s far too long to be almost incapable of only being able to walk ten minutes at a time.

So I guess I’ll just sit here a little bit longer and wait for some more time to pass.

Because then maybe I’ll hurt less.

– Keren