This was absolutely wild…

My parents told me this last weekend that apparently I played an entire season of basketball in the 6th grade.

I have zero recollection of this.

I mean, not one single memory.

Now, I know I have dissociative issues, but this shit is just wild.

They said that I guess I just hated it.

Which, I could never see myself playing basketball, ever, in the first place.

I hate running – I always have.

And my parents said that I had a hard time keeping track of the ball, they thought, because I’m blind in my left eye.

I’m just floored that I have no memories of this.

None.

Nothing.

I mean, I remember parts of the 6th grade.

But I have zero memories of playing basketball in the 6th grade.

How fucking wild is that?!

My dissociation skills were great when I was a kid.

They’re good as an adult too.

I don’t really think that’s something to brag about, and I’m not, but…

I’ve for sure had to unlearn how to zone out of life.

Anyway, I thought that was super wild.

I’ve been wracking my brain, trying to remember something about it, and I just have nothing.

There’s nothing there.

I know in the past I’ve had “Dissociative Amnesia” on my chart, and I do think it’s fitting still.

Because there are huge chunks of my life that I have zero recollection of.

I don’t know if it’s from the psychosis though, or what.

But, yeah…

It’s frustrating.

I asked/posted about memory issues in my schizoaffective group on fb.

A lot of folks deal with memory “blocks” – where chunks of their memories are missing.

Especially when they were in psychosis.

So I do think it has something more to do with the psychosis than I originally thought. 

It was surprising how many folks have memory issues that deal with schizoaffective disorder.

I was shocked.

Anyway… my primary care doctor upped my “extended release” (“ER”) Propranolol to 80mg, twice a day.

Up from 60mg.

I told her I was still having to take 20mg tablets here and there, on the 60mg, so she said she thought we should up it a bit.

I messaged her on Sunday, yesterday, and she messaged me back like an hour later – on Sunday!

I was like, why are you responding to me on the weekend?!? hahah!

It was nice of her to do that though.

Because then she called in the 80mg “ER” at 8am this morning, Monday.

I called the pharmacy when they opened, at 9am, and asked if it was in stock, and thankfully it is.

I asked them if they could fill it today and they said yes to that too – which is great because I have to fill my pill organizer this afternoon.

So it’s perfect timing, because it was done by 3pm.

I wish I had my psych appointment this week, not next.

I want to know how we’re going to deal with my high Prolactin levels, ya know?

I want to know if I’m going to have to go on Abilify. 

I’m sure I’ll have to.

But there is information out there about how Abilify can decreases Prolactin levels.

So, that’s a good thing.

And I’m willing to try it out because of that.

Only because of that.

And only because my primary care doctor – who I trust 100%, said I can’t be “walking around with high Prolactin levels”.

So, I do have to do something about it.

All of the medications for high Prolactin levels are dopamine antagonists.

Which means that they act like an antipsychotic.

Well, I’d rather deal with that with my psych doctor than my endocrinologist, ya know?

I’d much rather go on Abilify and try to control it that way than with Cabergoline, which is first-line medication for high Prolactin levels from the endocrinologist.

And the Cabergoline can’t be taken with Paliperidone – they interact.

And I wouldn’t be able to stay on my Paliperidone.

And I don’t want that to happen.

At all.

So, we’ll have to see what my psych says.

I’m sure he’ll be okay with it.

I’m sure my call with his nurse last week was just a misunderstanding.

Most of the time, he’s easier to talk to in person, when he remembers who he’s talking to.

He’s got too many patients to remember exactly who’s who over the phone, I think.  

Anyway…

I have Hannah, my therapist, virtually this week.

It’s okay, but I much prefer seeing her in person.

I can’t remember why we have to do a virtual visit this week.

It’s now Tuesday and getting back to my psych visit next week, I don’t want to come down at all on my Paliperidone.

I’m back up to 12mg, and I’d like to stay there for… forever, really.

I read that the 10mg’s of Abilify goes well with high Prolactin levels caused by higher doses of Paliperidone.

So, I’m hoping for that.

Either 5mg or 10mg of Abilify, really.

I’m just going to have to talk to my psych.

And I’m nervous about it though.

Super fucking nervous.

Y’all know how our visits can go at times.

They’re not always all that productive.

But I’m gonna try to go in with something written down.

So I have an idea of what I need to tell him.

Like I do when it’s really important.

So, yeah.

It’s now Wednesday.

My Propranolol “ER” got upped to 120mg, twice a day, today.

I googled if it takes a while to kick in – you know how some drugs take a week or weeks or so before they’re at full strength?

Well, Propranolol isn’t like that.

It’s pretty instantaneous.

It’s at maximum strength within a few hours, not days or weeks.

So I messaged my doc last night again, Tuesday night

I told her I couldn’t really notice a difference between the 60mg and the 80mg, and I was still having to take the 20mg “IR’s” at night, and I asked her if we could maybe up it a bit more, because I had looked it up, and it doesn’t take that long to kick in, and I gave her some blood pressure readings tool.

She messaged me back the next morning and said “absolutely”.

And she told me to just keep track of my blood pressure.

She also said that we can even go up one more step, as long as I keep tracking my blood pressure like I have been, and as long as I don’t have any symptoms like dizziness, palpitations, or lightheadedness.

Which I don’t have any of those side effects.

And, I told her that’s really, really nice to know that there’s room to go up still.

Because it is super helpful for me.

And I told her I really really appreciate her, because I do.

The “ER” has been a really, really nice change. 

I can feel the difference in how my heart is beating.

It’s no longer constantly racing.

Now it’s Thursday.

I’ve only been on the 120mg of “ER” Propranolol for a day and a half, and so far, I really like it.

This is the first full day of two doses of the “ER” 120mg.

No abnormal symptoms.

Just feeling like my heart isn’t pounding out of my chest – fucking finally.

It’s much more helpful than the 80mg, that’s for sure.

My blood pressure is fine too.

I’ve been tracking it.

So that’s good.

I have a pain management appointment tomorrow afternoon.

We’re gonna go over my Lyrica, or Pregabalin prescription.

I hope we can go up to 100mg, twice a day.

I’m 50-50 on what he’ll say about that.

I’m hoping he’ll let me go up that quickly, but like I had said in my last post, I’m unsure as to what protocol is.

He may only let me go up to 75mg, 2x day.

So, I’ll have to wait and see what he says about that.

I’ll update tomorrow.

My visit with Hannah, my therapist, went well yesterday.

We talked about how we all juggle things/balls, you know?

Like, life is just a series of juggling balls, ya know, and some are bouncy balls, and some are glass balls.

She dropped a bouncy ball last week.

I was dealing with a glass ball that had been dropped last week.

Similar, yet different.

The bouncy ball won’t have much of a long-term effect.

It’ll create a small impact, but it won’t be damaged.

The glass ball, on the other hand, shatters when it’s dropped.

And is no longer in play.

And that creates a change in the way that the other balls are being juggled.

I love that analogy.

It’s a fucking good one.

We talked about a bunch of other good stuff too, as we usually do.

On a different note, It’s come down to basically two gals on fb messenger that I’ve been talking to.

There’s a third too, but we’re much more intermittent than steady with the conversation.

Anyway, I’m loving the conversations.

They’re both amazing humans.

Last week was a rough week, and I was dealing with triggers and having a really hard time, and still waiting for my medications to kick in.

But they’ve both been there for me now for a little less than a month, solid.

And I appreciate them so much so.

It’s been very, very nice to have folks to talk to about schizoaffective stuff and have the person on the other end get it, 100%.

There’s something irreplaceable to that.

There’s something to be said about having people in your life that “get it” more than most.

Even if they’re not in the same city.

At least one is in the same state – the other one is much further away.

But it’s just so fucking wonderful to have people to talk to about everything.

Going off of what I just said.. I still don’t feel as though the medications have kicked in all the way though.

I’m hoping they will though by the end of next week or so.

I’m just having a hard time concentrating still.

A hard time focusing.

And taking things in – remembering things.

And motivation.

It’s been really, really fucking frustrating.

I mean, I do have some motivation, I guess…

It’s just, limited.

But my comprehension, specifically, is hindered for sure.

I’m just finding it so difficult to understand things more than anything, really.

I was talking to one of my friends about this and we came to the conclusion that this is the last thing to come back online after an episode.

Because when I’m dealing with something like when reading a word problem, I can’t grasp the issue.

It’s all squished together, in like, a mess of words.

I have to focus so hard to separate the words, and numbers, and issue at hand.

Even if it’s just for fun.

It’s like that part of my brain isn’t up and running yet or something.

And it gets old, quick.

I know it’s just a matter of my meds kicking in.. but, I wish they’d kick in full force already…

So, it’s now Friday and I have some good updates.

My pain management doctor, Dr Zoch, boosted up my Lyrica to 75mg.

But, he made the prescription so I can take up to 2 of them, 2x a day.

So, he went even higher than I was going to ask for!

He pulled out the big guns! Ha!

I opened up the conversation by saying I wanted to talk about my Lyrica.

Then I said “but, I’m a recovering addict, as you know…”

He then told me that he “trusts me” and said that they’re “not an opiate” and that he feels that they shouldn’t even be a controlled substance because they’re so similar to, and in the family of Gabapentin, so he told me that I didn’t really have anything to be worried about addiction wise.

So, I was so grateful to talk through that with him.

He said he understands my concerns, but was adamant about his opinion on how Lyrica should not even be a controlled substance.

He said that there are some possible physical withdrawal symptoms I may experience when I decide to come off of the medication.

Things like some sweating and possible muscle twitching.

But with a proper taper, he said, they’d be very minimal.

He said it’s much more of a physical dependence than mental – which is true with most medications, right?

You become physically dependent on them, it doesn’t mean you’re addicted, it means you’re basically just adapted to, and physically used to taking the medication, that’s all.

That happens with most all medications.

He said that there is no “pleasure center” with them.

He said that he’s glad I’m feeling some relief from it, and confirmed that there are no interactions with my medications, including Suboxone. 

So I was super grateful to hear all of that too.

So I’m going to go ahead with the dosage increase.

Like I said in an earlier post, I was surprised at how much it’s been helping my pain levels decrease.

Especially in tandem with the Turmeric. 

The 50mg easily added another 5% decrease to my pain levels.

Which – for chronic pain, is pretty fucking good.

I didn’t expect it to do as much as it has been doing.

So that’s a bonus, really.

I decided instead of taking the double dose of the 75mg tablets, that I’ll spread them out.

I’m starting by taking 2, 75mg tablets – one in the morning, one in the evening.

Sunday I’ll go up to 3, 75mg tablets – one in the morning, one at 12:30pm, one in the evening.

And I’ll hold steady there.

See if I need the fourth one or not.

If I do, I’ll add it into my 5pm medications.

There was kinda a bummer at my appointment today there when the MA at Dr Zoch’s office told me that they only do handicap placards there for my new car – not handicap plates.

I don’t understand why they don’t do the plates, it’s not like I’m miraculously going to get any better any time soon.

I have permanent disabilities, ya know?

I would imagine most folks who go to that office have permanent disabilities.

Because the placards indicate a temporary disability.

The plates indicate a permanent one.

Anyway, the good news is that I messaged my primary care doctor, Dr Rocha, who I see on Monday, and asked her if she could sign the prescription for the handicap plates, not just a placard.

She messaged me back very quickly, and just said “of course”.

So, that was very exciting!

So, things are falling into place slowly.

And I do still have benefits for the month of July too – I checked during my therapy visit this week.

So, I’m unsure if the renewal is in August or what.

So that’s still looming out there still.

And that’s stressful as fuck.

I had seen someones post in my schizoaffective group that they were up for renewal with zero notice, so I’m guessing it’ll be in August.

But, anyway, I gotta say, it was really, really nice to drive down to San Antonio today in my new-to-me Toyota, and not have to worry about going over 60mph, and to not have to worry about breaking down on the way there or back.

That was very nice.

And as for another update, the hallucinations have been dying down this week i’ve noticed.

So that’s been refreshing.

So the medications are kicking in a bit more as the week progresses.

I have had some visual stuff, which has been surprising because the Paliperidone is really, really good at curbing that usually, so I’m sure once it hits peak performance again, they’ll fade away too.

It hasn’t been much, just some wavy tree trunks here and there, and a few “soot sprites” as I call them.

A few more “lint vision” type things too.

And all of this stuff is mainly in the evenings.

But I’m sure they’ll all fade again.

They always do with the Paliperidone.

I don’t think I will ever come down on my medications again.

I forget that I’m doing so well because I’m on the right dose of the meds in the first place.

And when I decrease that, I’m just going to plummet right back into psychosis.

Because I’ve knocked myself out of homeostasis again.

That’s all I ever used to do too.

For decades.

Come off and on my meds all the time.

I’d start to feel a bit better, so I’d stop taking them.

Go back to intense, toxic Keren.

Forget about my meds.

Remember that they exist.

Start to take them again – feel a bit better.

Stop taking them, forget about them.

Remember they exist, start taking them.

Feel better.

Stop taking them, forget about them.

Etc..

Re-start cycle, yet again.

Over and over again.

Vicious and extremely toxic.

I don’t want to be like that ever again.

So, I think now, I’m just going to stay on my medications, like the doctor wants me to.

Like I said last time, they’re just tools.

That’s all.

Just tools that I use to create a healthier version of myself.

And that’s okay that I have to use them.

Not everyone does, but I do, and that’s just fine with me.

I’m doing alright because I’m on the medications.

And I’m realizing that now.

It is what it is, ya know?

And I’m no longer going to let anyone pressure me to come down or off of them.

I have to take them.

For the rest of my life.

And I’m fine with that.

There was a post in my schizoaffective group about coming off of medications.

And there were some great responses…

Some people said that “older medications” give the newer medications, with lesser side effects a bad name.

And I totally agree with that.

One person had pointed out that they had believed in the evils of  “big pharma” until they saw the changes – for good, in their loved one, and could no longer deny the fact that medications had “changed their life for the better” and now they had the “ability to reason”, so they no longer believe medications are this “evil entity”.

I thought that was amazing.

And even further, someone pointed out an excellent fact that without medications, we just go further into psychosis and it can cause more and more brain damage, and lead to further dementia down the road.

I thought that was a really good point too.

So, I’m going to stay on my medications, for good.

That’s my drawn out point.

But I thought all of those points were good too.

And even though I’m nervous about my appointment with my psych on Tuesday, I think it’ll go okay.

I hope at least.

Alex is mildly unpredictable.

That’s what makes him my one wild card doctor.

Usually he’ll do things that I need him to, after we talk about it…

But not always.

He has to do things his way.

Or at least, I think he needs to think it’s his idea.

Which, I can work with.

I’m thinking about talking to my primary care doctor on Monday about the Abilify idea, and asking her what she thinks about it.

And seeing if she’d be willing to prescribe it – only if Alex won’t.

So, at least I’ll have a backup plan.

We’ll have to see.

I’m sure she will.

I’m not sure Alex will.

Ugh. I hate this. 

Alright, that’s the week.

-Keren