This week was a week.

I know my postings haven’t been lining up like they used to.

I used to post on Fridays, so the “week” made sense.

Now the “week” is more like a week and a half to two weeks…

Sorry about that, but that’s just how I’m rolling right now, so, yeah.

But, I had a hematologist appointment last Thursday, the 22nd.

It was a follow up from my appointment in August for that blood clot that I had after the Sclerotherapy at the end of July.

The dr, Dr Braden, did blood work again to test me for a Lupus Anticoagulant for a second time.

You’re supposed to do it twice, 12 weeks or so apart, to make sure you’re actually positive for it because there can be things to cause false positives.

And Dr Braden said that if I test positive for it again, that I have this clotting disorder.

Yes, even though it says “anticoagulant” in the name, it’s a clotting disorder.

I know, it’s deceiving.

And it’s also deceiving because it doesn’t have anything to do with Lupus, Lupus.

Well, it kinda does..

See, folks that have Lupus tend to have this clotting disorder, and that’s why it’s named the way it is, but just because I have it, doesn’t mean I have Lupus.

And I got a call this Monday morning, before I had seen anything in the patient portal, from Dr Braden’s nurse.

Well, technically I had called them first, requesting a call back because I hadn’t seen anything yet, and then I got a call, like, two minutes after I hung up with the gal I was talking to.

And the nurse said that my lab results were just “abnormal”, and that Dr Braden would tell me what that means at my appointment that they’d call me later in the day to schedule.

fml…

Abnormal?

That’s like…. so fucking vague.

That could mean literally anything.

The results must’ve come in late Sunday, early Monday.

I checked my patient portal after the call and the lab results were there and some of the factors were a touch lower, others were the same, one was even higher.

But they were all still “high” and out of range.

So, yeah…

I swear, every year it’s something.

Every year it’s a new diagnosis.

Every year it’s a new medication to add to the list.

Every year it’s something new on my medical chart.

Every year it’s fucking something, and I’m fucking sick of it.

I was hoping to come off of the blood thinners, but now I think I’m going to have to stay on them, like for the rest of my life.

fml.

I’m so frustrated.

So, I’m assuming that means I have this Lupus Anticoagulant…?

So, they called me to schedule like an hour later and my appointment is on the 12th so I have to wait two fucking weeks.

Fucking great.

I hate waiting like this.

It’s legit the worst.

I’m trying to not look up too much on it too.

I’ve only looked at like, two sites.

Because I have no idea what abnormal means.

I mean, like I said, the doc did say that if I tested positive for it again, that I had it.

And Dr Braden also said that he thinks that the Sclerotherapy was the catalyst that set off the Lupus Anticoagulant.

That the procedure was the trigger for the clotting disorder.

Because the lab results are high again.

They look just like the first ones do.

So, I’m guessing that’s my fucking answer.

But I still don’t know what abnormal means.

The only site I looked up on Lupus Anticoagulant was the Cleveland Clinic site in the first link above.

But I did look up a couple others on Antiphospholipid Syndrome or APS.

Because testing positive twice for the Lupus Anticoagulant can lead to APS.

I’m pretty sure, from what I read, it’s not a definitive link, but more of a possibility.

But APS is an autoimmune disorder and I can’t find much on it besides that it leads to blood clots, but I haven’t been looking too much up at the same time.

I do know that it can lead to this super intense form of arthritis where the blood gets cut off to your bones and your bones end up fucking disintegrating – it’s called Avascular Necrosis/Osteonecrosis. 

I for sure don’t have that form of arthritis, so that’s a bonus.

Like I said, I’m trying to not look up a bunch of shit.

I’m trying to not research like I normally would when I get a new diagnosis.

Because, like I said, I have no idea what abnormal means.

I did download the lab results and send them in a message to my primary care dr, Dr Rocha.

I also asked her to run a Lupus panel, just in case.

And she ran a comprehensive autoimmune panel too.

I got that blood drawn on Tuesday.

But as the results started coming in negative today, the first half of them are at least – which I’m stoked about, but now I’m wondering how accurate they are.

Because I’m on my Methotrexate.

It can turn positives into negatives…

I looked it up.

Fuckin – a.

It’s always something.

I’m tempted to come off of it and try the bloodwork again.

I don’t want to, but I might.

I probably won’t.

I’m going to talk to Dr Rocha about it and what to do and what we can do about it.

Fuck, I really wish I would’ve thought of that before the lab work…

I’m like, seriously, fucking kicking myself right now.

I could’ve stayed off my Methotrexate for a few more weeks and done this..

But I didn’t know.

And I didn’t even think about it, and I was hurting so much, I went back on it.

Oh fuckin well.

I’ll just talk to Dr Rocha and see what she thinks.

I just got the rest of the test results back and they’re all negative.

But like I said, I have no idea how accurate that is.

It’s just that I don’t want to be gaslit again is all, ya know?

I know something is going on in me, otherwise the Methotrexate wouldn’t work as well as it does.

And I don’t need another fucking doctor doubting me is all.

So the more ammo I have in my corner, the better.

It’s not that I want the autoimmune panel to be positive, at all.

It’s that I want all of the most accurate information possible in my hands to give to the new rheumatologist so that I can get the best care possible, be trusted, and not be gaslit into the abyss.

I dunno…

I just feel like everything I touch, I fuck up sometimes.

Like, I don’t think things all the way through.

I should’ve thought of this.

But then again, I’m not a fucking doctor, and nowadays you have to be a fucking doctor if you have any sort of health issues.

I can’t trust any doctor to have my best interest at heart at any point in time.

They never think things through, they never tell you exactly what’s going on, they never tell you details, side effects, symptoms, how anything will affect you, or anything that’s specific to what you’re dealing with.

I’ve had to do all the research on my health issues, myself.

Doctors don’t tell you shit.

They give you a vague diagnosis, if that.

And half of the time, I give them my diagnosis.

They don’t give me a diagnosis.

Which is so fucking backwards.

But that’s the medical system we live in nowadays.

I know more about my body, and have done more research on what’s going on with me than their 10 minute appointment – that I waited an hour and a half in the lobby (and two to four months in general) for, ever will.

And if they don’t recognize that, I walk out, or don’t come back.

Half the time, they don’t even listen to what’s going on with me anyway.

I can see their fucking eyes glaze over three seconds in.

The other half of the time, they’re already trying to pawn you off onto some other specialists, or maybe they’re doing that in conjunction with not listening.

They do that a lot too.

It’s so rare to find even a decent doctor nowadays.

And I’m honestly annoyed that Dr Rocha didn’t catch that the Methotrexate would fuck up my results becasue we literally just had a conversation about my Methotrexate at my last appointment like a week or two ago and the medication is in my fucking chart.

Be proactive damnit!

Read my chart before ordering bloodwork or tests.

Be observant.

I’m getting so fucking heated thinking about this, holy shit.

It’s just so frustrating how much self advocating the average person has to do nowadays.

It’s absurd.

Why does all of this lay on me to do and remember and organize?

I understand that I need to advocate for myself, but there comes a point where the doctor also needs to do their fucking job.

She should’ve stepped in and not ordered the lab work, or given me a disclaimer or something.

Because who knows if these results are even correct now?!

Anyway… fml…

I’m annoyed as shit about this now.

And I’m trying really hard not to be.

I’m trying really hard to just go with it and be content until I talk to my doctor.

It’s just beyond frustrating how much I have to work at my own healthcare…health journey, or whatever the hell you wanna call it.

Fuck.

It’s annoying as shit.

Seriously.

What a waste.

Waste of time, resources, everything.

I’m so annoyed.

It’s seriously maddening.

I need someone helping me to make sure shit like this doesn’t happen again, ya know?

Sometimes I just feel so fucking alone.

I have no one to help me with stuff like this.

Maybe if I had someone with me, shit like this wouldn’t happen because there’d be two heads in on my meds and healthcare issues, not just my wonky fuckin noggin.

Because my brain can’t be trusted all the time anyway, ya know?

Because I got a new neighbor one door down, and my voices have been going apeshit over him and it’s been super fucking annoying.

They’ve been actually talking about how many cigarettes I smoke.

Even though I don’t smoke that often.

About once every two or three hours or so.

But they’re commenting on it.

On how many times I come outside, how I’m outside “all the time”…

They commented on how I needed to shower the other morning, which I knew I needed to, and did soon after I was outside.

And then they commented on how I had showered, after I showered, when I came back out.

Fucking. annoying.

It was a gal that was over there at first, but I guess it’s her boyfriend that’s actually moved in.

The voice that I was hearing at first has been mainly female sounding though.

So, yeah.

I dunno.

The voices do what they want.

Sound like whoever they want to sound like.

It’s been a mixture of female and male sounding voices, but mostly female at first, but when I found out that he was the one who lived there, not her, of course the voices flipped to sounding mostly male.

I hate the fucking voices.

They’re seriously obnoxious.

They twist into whatever will make me the most anxious.

They morph into what is mostly true so I mistake it for the truth so then I don’t know what is true and what isn’t true.

I’m so sick of everything right now.

Everything’s obnoxious.

Even quitting smoking is obnoxious.

I’m really, honestly super anxious about it.

That’s just one reason as to why it’s so obnoxious.

I created a plan with Dawn, my addiction counselor, to work on quitting smoking within the next couple of weeks.

I bought a couple of packs the other day, so I’m going to enjoy these and count how many I’m smoking right now during the day so I can try to wean myself off a bit with the smokes themselves.

Then I have my nicotine gum.

I’m going to try to only chew it when I have a craving for a cigarette, not just preemptively when I think I want a smoke.

I really want to try and wait until I have the physical craving for one, then chew a piece.

So it’s going to take a lot of listening to my body and noticing when I have an actual craving vs when I just want one.

We’ll see how it goes.

And now, it’s been a few days, and I smoked my last cigarette on Halloween and I thought that was a great day to quit on.

Starting over on a new month, and quitting on the spookiest day of the year.

And I know I’m not going to be perfect with this, and I don’t expect myself to be.

But this is all a plan to start with.

And I’m ready for my apartment to not smell like stale cigarettes under the nag-champa incense that I burn all the time anymore.

And I’m going to try and keep track of everything – of how many pieces of gum I’m chewing… 

I know it’ll help me see if I’m making progress or not.

Because I told Dawn the last thing I want is to just replace the cigarettes with the gum, like I have been doing.

Because I usually use the gum when I can’t smoke.

Which is totally fine.

When I didn’t want to quit.

But now, I don’t want to keep doing that.

I want to use it to wean me off the cigarettes.

So, I need to chew less and less of it every week.

And really, I’m probably not going to know if I’m doing that unless I keep track of it.

And Dawn said to keep a list of things to do around my apartment, which is a good idea too.

Like, little odds and ends cleaning projects to keep me sidetracked with and whatnot.

I already thought of a few of those…

And I may very well pick up crocheting again too, we’ll see how that goes.

But I’m scared of spiders possibly being in the bags of granny squares that have just been sitting in the toy chest for the last year…

So I dunno…

I gotta figure that one out.

But something to keep my hands busy is a good idea, ya know?

So, we’ll see how it goes.

But I do have a newfound fire in my ass to quit.

I have a reason to quit now, ya know?

Not that not getting lung cancer isn’t a good reason, but this is a pressing reason, reason, I don’t know if that even makes sense…

But I’ve never really had a good reason to quit before.

And this is a really good reason to quit.

The high risk of blood clots is a good reason.

And I read that most people who have Lupus Anticoagulant find out just like I did.

Something happens, they get a blood clot after a procedure, or something happens with a pregnancy or something, and they get a blood panel done and WHAM! they find out exactly like I just did.

And I also read that some people never even get a blood clot their entire lives, ever, living with this.

So that’s promising.

But Dr Braden said now that I’ve had one blood clot, my risk increases.

And like I said, he thinks that the Sclerotherapy was a catalyst that set this off.

So, I dunno what the future holds.

If the Lupus Anticoagulant can regress again? 

I dunno…

I’d like to hope so.

But I don’t know if once it’s out, it’s out, type of thing.

I’ll know a lot more after my appointment.

I don’t wanna sit here and speculate.

I could do that all day.

Literally, all day.

I’m just over fucking everything.

The voices.

The healthcare system.

Doctors.

My body.

Diagnoses.

All of it.

– Keren