I don’t like to close the tabs out on my phone or on my computer.

Right now I literally have 329 tabs open on my phone, and over a dozen on my computer.

I feel like if I close them, I’ll just then want to read what was on that tab, but then it’ll be lost forever and I’ll never be able to learn about what was on there and I’ll miss out on it for the rest of all time.

And then what if someone were to bring that specific topic up in conversation?

I would’ve been able to chime in, if I just would’ve left that fucking tab open!

Ha!

But seriously, I like keeping them open.

I do go back to them… sometimes…

I’ll think “oh! I was looking at that the other day!”

I’ll go hunting, and find it… sometimes…

Other times, most times, it’s lost in the abyss, forever.

It’s funny because after I wrote this, you know how fb looks at your google info, what you search and what you put into google docs and whatnot?

Well, I write in google docs, so it saw this and then showed me tons of memes and videos on ADHD and countless tabs being open in fb.

Ha!

Wild world we’re living in nowadays, huh?

It’s really just organized chaos, though.

It’s similar to how I keep my apartment.

It looks cluttered.

But I just don’t put things up, because I just use them all the time, and what’s the point of putting things away that I just use all the time?

They can just live out in the open where I can see them and use them easier.

It makes more sense.

To me at least.

I’m all about the organized chaos.

I feel like that’s the story of my life.

Maybe that is just ADHD.

I mean, I have been told that I have the inattentive type of ADHD, previously known as just ADD. 

No hyperactivity but all of the attention deficits.

It probably is just that, honestly.

Because I have issues paying attention for sure.

And concentrating.

And with organization, like I was just saying.

And with other things on that list above, in the link.

Not so much with losing things – but I do lose things that I need, just to find them when I no longer need them anymore, all the time.

I always forget that I have ADHD.

That’s gotta be a thing, right?

But then I wonder why I get frustrated when I have issues concentrating on people’s conversations, or articles that I’m reading, or audiobooks that I’m listening to, or whatever…

It does get maddening sometimes.

I’ll drive myself up a wall starting things and walking away from them, half finished, never to return to them.

Look at my crocheting.

I started to make a blanket.

Got halfway through making all the granny squares and now they’re just in plastic bags in my old toy chest with the yarn, and have been sitting there for the past year, waiting for me to pick it back up.

Just like all my other hobbies I couldn’t wait to start working on and had to buy all of the things for.

I know social media makes all of us have the attention span of a squirrel, but there was this video yesterday where this guy was literally talking about ADHD behaviors and multiple tabs being open just to never go back to them again (algorithm eavesdropping from fb and google), and I couldn’t even pay attention to the entire video.

I literally got up from the desk, from my phone sitting on the desk, and got water while the guy was still talking.

I laughed when I was in the kitchen, unable to hear him, realizing what I had done.

I couldn’t even pay attention to a 2 minute video all the way through on how folks with ADHD keep tabs open because they’re convinced they’re going to go back to the tabs and read the information and retain it and use it and then the science behind it.

Which was probably interesting if I would’ve actually fucking listened to him.

How inattentive is that shit?!

Anyway, I’m gonna totally change topics now – I have no good segway for this…

I got the results back from a blooddraw that I did this last week.

It’s so-so.

The bummer is that my A1c is borderline high.

It was right at the line.

5.7 is the cutoff and it was at 5.7.

I go back and forth with prediabetes a lot.

And I fucking hate it.

I know what it’s from though.

I’ve been slipping with sugary stuff the past few months.

Like a lot.

And I’ve been drinking soda.

“Zero” soda, but that’s probably worse for me than regular soda…

And I’ve been eating a lot of non dairy ice cream and these vegan, gf cookies.

Like, a lot of them.

I haven’t been binging at least.

But I’ve been making super shitty choices.

Sugar is a wretched beast.

And I’ve gotta reel it back in again.

I need to just go down to one soda every four days or something.

Not almost every day like I have been.

That’s obviously too much.

But something practical like every couple of days.

And I need to cut way back on the ice cream and cookies.

Like way back.

I need to just stop buying them really.

I wish I could buy them and just eat them once or twice a week.

But I end up eating them every night.

So, I should probably just not buy them for a time and see how that goes.

I mean, I don’t want to do something unattainable like cutting sugar out all together.

Which I have done in the past.

And it worked, for a time.

Until it didn’t anymore and I caved and drowned myself in syrup, sugar and honey.

Moderation is much better than abstinence.

It’s more realistic anyway.

And that’s applicable to many, many aspects of life.

I feel that way about pretty much everything.

But I also need to learn how to eat these goodies in moderation when they’re in the house, ya know?

That’s key.

So I think I just won’t buy them this upcoming month.

Give my body time to reset.

And go from there.

If I do buy them, I won’t get two packages like I have been, I’ll just get one.

But, I’m wondering if, with a high A1c, I can get my insurance to cover a glp-1.

But I’m also wondering if the second I get out of a high A1c, if that coverage goes away.

I’ll have to talk to my primary care doctor about it.

She’ll know.

I doubt I can get covered with just a high A1c.

Because my glucose level was normal.

But, we’ll have to see.

(damnit, I forgot to ask.. fuck…)

The other marker that was abnormal was my SED Rate by Modified Westergren.

Which I had never heard of.

It was high.

Which means that I have inflammation in my body.

And it’s more of a marker for things like autoimmune disorders and could be a marker for other inflammatory conditions like an infection too.

But, since I don’t have a current infection, I’m 98% sure it’s from my inflammation.

And I’ll explain more in a second.

My CRP levels were borderline too.

Which also means inflammation.

They were a 7.8 and the cut off is an 8.

So they were right at the borderline of being high.

They were for sure higher than the last like three or four times I had bloodwork done.

The last several times it was around a 3 or even lower, now it’s at a 7.8 – that’s significantly higher.

And I know why all of this is like this.

It’s because I came off my Methotrexate over the last six weeks or so.

I usually take 6 tablets, one time a week, on Tuesdays.

I don’t know why I came off of it.

Well, I do.

I do this type of shit sometimes – with all my medications.

I always get to feeling alright and think “well, I don’t think I really need this medicine”.

Same point I get to with all my other fucking meds.

I think “what is this even doing for me? I don’t need this shit.”

My pain was semi controlled at the time that I stopped (not really, but sorta), and my inflammation too.

But I will always think to myself that “this medication isn’t doing shit for me, not really.”

So, I wean myself off of it.

And I don’t tell anyone.

Just see what’ll happen.

(worst case scenario it doesn’t work out and I go back on it – that’s what I always tell myself, and do, because it never works out)

And surprise, surprise, my pain levels exponentially went through the fucking roof at week 5, when my dose got down to one tablet on that Tuesday.

Then on that Thursday, I couldn’t take it pain wise and my right knee had blown up like a balloon, so I took the other 5 tablets to make the total 6 for the week, because I had already taken the one on Tuesday.

Then I had to do blood work the week after that, on Wednesday, the day after I took my next full, 6 tablet dose.

And whadda know, both of my inflammation markers that the doc ordered were high because I wasn’t on the correct dose of my inflammation and immunosuppressant medication for several weeks.

I was down a tablet each week for five weeks, and then it takes several, several fucking weeks to fully kick in whenever I restart it.

And I’m just still not convinced that I have RA.

I don’t know if I ever will be either.

Even though the evidence is pretty damning a lot of the time, but I still have issues believing it because I don’t have the “RA factor” in my blood work.

And I know that’s why I’ll never be convinced.

I mean, I don’t want to say never.

But maybe that’s why it’s very difficult for me to be convinced.

Because I have seronegative RA, and I don’t have the genetic markers for “regular” or “typical” RA.

And I’ll never get the nodules in my hands (thankfully) because of that either.

So, seronegative is very different from “typical” RA.

And I know that’s a terrible reason to not believe that I have RA.

I actually googled “what does it mean when Methotrexate is the only thing that curbs my inflammation?” today.

Because it’s true.
I just wanted to see what it would say.

Because other anti-inflammatories have never worked for me.

Naproxen, Celecoxib, Meloxicam, Diclofenac…

None of them have ever worked for me more than, I’d say, 5-10%.

I feel like I’ve literally been on every single anti-inflammatory ever invented, and they’ve never done a thing for my core inflammation issues.

But Methotrexate does, it works, and really well at that.

It takes it away – almost all of it except for the occasional flare up.

But that’s usually water retention or edema anyway.

And it’s the only medication that’s ever been able to do that.

So, I finally googled it.

And google said this in response; “When Methotrexate is the only medication that successfully curbs your inflammation, it provides an important diagnostic clue: your inflammation is highly likely driven by a systemic, autoimmune, or immune-mediated process…Unlike over-the-counter painkillers or standard anti-inflammatories (like ibuprofen) that merely mask localized pain pathways, Methotrexate is a Disease-Modifying Antirheumatic Drug (DMARD). It works deeply within the immune system to alter the underlying disease process…”

It goes on…“What This Tells You About Your Body; Your Immune System is Overactive: Methotrexate acts as an immunomodulator. It specifically dampens the behavior of overzealous immune cells (like T-cells and B-cells) that are mistakenly attacking your body’s own tissues. If this is the only drug working, it confirms that your inflammation is rooted in this type of autoimmune dysfunction…Specific Inflammatory Pathways are at Play: At the low doses used for chronic inflammation, Methotrexate triggers a cascade that forces your cells to release adenosine. Adenosine is a potent, natural anti-inflammatory molecule that binds to immune cells and shuts down the production of aggressive, destructive inflammatory proteins called cytokines (such as TNF-alpha and IL-6). Your success with the drug means your specific condition is highly sensitive to this adenosine pathway…The Inflammation is Systemic, Not Just Local: Methotrexate travels throughout the entire body to lower systemic baseline inflammation, which is why it protects organs and joints from long-term, irreversible structural damage…”

I mean, yes, I get it.

It’s probably not wrong.

Ha!

I mean, I guess I’m pretty sure I did think I had RA before I started seeing my current rheumatologist.

He’s a horrible fucking doctor, by the way.

And his PA is pretty terrible too.

I called a new rheumatologist’s office on Friday, the one that I said last entry that I was going to call, in San Marcos.

I left a voicemail with their new patient coordinator.

So hopefully she’ll give me a call back next week, and I hope they take my insurance.

(which they did, and they do, so we’re working on a referral)

Because before I started seeing my current rheumatologist, my past rheumatologists have always taken my knees, ankles, feet and spine into consideration.

Where this current rheumatologist doesn’t.

And I still don’t understand why.

I get told by orthopedics that I must have RA because of the bilateral degeneration in my joints and I need to see a rheumatologist.

I get told by rheumatologists that I have osteoarthritis in my joints because – they don’t give me a reason, and I need to see an orthopedic.

It’s beyond confusing and this is another reason why I’m still not convinced that I have RA.

Because I’ve been told so many different things by so many different doctors over the years.

And this current rheumatologist does not help this.

He makes me doubt myself.

And I fucking hate that he does that to me.

I hate that I let him do that to me.

I already doubt myself enough in so many aspects of my life, I don’t need help with that shit.

And I already doubt my diagnosis enough too, I don’t need help with that either.

So like I said, my current round of bloodwork was so-so.

The bulk of it was normal.

But there were these couple of outliers.

Frustrating, but not out of nowhere.

I’ve got my primary care appointment on Tuesday this week, so I’ll talk to Dr. Rocha about them.

I’m super curious about the glp-1 shots.

(which I totally fucking forgot to ask her about, fml)

But like I said, I highly doubt I’ll be able to get them with just a sorta high A1c.

I think you really have to be in the prediabetes territory for them to approve it.

Since I started this entry a few days ago, I’ve only drank one soda.

It’s hard because I have a sodastream machine.

So, I have bubble water at my fingertips.

But that’s just it too, I can make just bubble water, which is nice.

So that’s going good.

I’ve been having the same breakthrough symptoms – voices.

I heard a bit more mumbling than usual last week.

Not bad, bad.

And this week has been better.

I think I must’ve been stressed out about something last week.

I think I was stressed about realizing my thoughts were internal hallucinations…

That was pretty stressful…

I just had a bit of breakthrough crowd noise at my parents house last weekend – not this weekend, but last.

And I had some mumbled crowd conversation noise while I’m laying in bed too, outside the window last week too.

This week was better with that – a bit of it, but not as bad.

All of it has been external, not internal.

And not terrible.

Just mumbling and nothing I can make out.

I try to make out what’s being said and I can’t.

It sounds like someone is talking about two rooms away.

I can hear that people are talking, but I can’t distinguish what’s actually being said.

Different from when I talk about the radio DJ.

This doesn’t have that cadence that the radio DJ has…

That has that specific up and down, almost, melodic ring to what it’s saying, but I still can’t make out the words.

This just sounds like people talking, but I can’t quite make out the words.

The really annoying thing is that I’ve been seeing bugs lately – and randomly.

And when I get closer, they’re totally something else that’s definitely not a bug, it’s just like dirt or a coffee stain or a tumbleweed of dog hair or something silly like that.

But at first, they’re totally fucking bugs.

And this has been happening like once or twice a day on a bad day.

It happens a lot anyway.

But it’s been happening a lot more since I found a bug (I will not name the species) in the apt the other week.

I had a same problem with these bugs last year and it was a whole fucking thing.

And I hate them and they’re all over Texas, they’re inevitable here, and they’re disgusting and a menace and did I already say that I hate them?!?!?

They’re so fucking gross.

Anyway, I found one, and granted, it was for sure dead when I found it.

But I found one nonetheless, under a case of water when I lifted it up to put it in the fridge the other week.

And ever since then, I’ve been freaked the fuck out about another infestation in here.

Even though that was the only one I’ve seen in here (knock on wood).

So, I know what my subconscious is doing to me.

Now I’m seeing bugs for some stupid fucking reason.

I’m terrified of bugs already.

Terrified.

So, now I’m on high alert.

So of course I’m seeing them because I saw that dead one under a package the other week.

Obviously that’s the fucking logical thing for my brain to do to me – hallucinate bugs.

Damnit.

It’s annoying as fuck.

So, I’m seeing these bugs a time or two almost every day.

And it’s super annoying.

I swear my brain hates me a lot of the time.

So it does things to me to torture me, I swear it.

Okay, maybe not torture me and maybe more like obsess over.

Okay, maybe those are interchangeable really, in a way, when they get to be too deep and too intense.

It’s getting old, in other words.

And it’s all because I saw this stupid, dead fucking bug.

It needs to end.

Anyway, it’s now Tuesday and I just got home from my appointment with Dr Rocha.

I totally spaced on the glp-1, like I scattered throughout, and I’m so annoyed with myself about it.

I’ll have to send her a message in their portal instead at some point, which is fine, she’ll respond.

I just hate that I forgot.

But she sent in the referral to the new rheumatologist though – so that’s a bonus at least.

They do take my insurance and they’re accepting new patients.

They’re booked out till January, but that’s fine with me.

Dr Rocha told me if I don’t hear from them by Thursday or so, to call them and get scheduled, because the referral is sent already.

Or at least call and make sure they got the referral if I need to wait for them to call me to schedule.

So, I’ll do that.

(I actually heard from them as I was typing this into WordPress and have an appt Jan 28th – I know, super far out, but it is what it is… I have just enough meds to last)

I’m a huge advocate for myself when it comes to healthcare.

I know y’all know this already.

But no one’s gonna do it for you.

Dr Rocha told me the “SED Rate by Modified Westergren” (which sounds like a bizarre bird name for some reason to me, by the way) is a key inflammation marker and when I told her that I had been almost off my Methotrexate, and she had a look on her face like “aaahh – that’s why this is so high”…

She said she totally understood the why behind me going off – or trying to go off the Methotrexate, but said to not let a miserable doctor get in my head like that.

She said that he has to be living a horrible life, acting like that.

She said, think of what it must be like in his head… you don’t need to take that to heart.

And she said that it’s really, quite obvious that I need my medication by my lab results.

She mentioned that even my CRP levels were borderline high – which she said is a marker for acute inflammation, which I didn’t know.

I knew it was for inflammation, but I didn’t realize it was acute.

Which, I guess, makes sense though.

She said that these were good labs to send off to the new rheumatologist – that this is what happens when I try to come off of my Methotrexate.

And I wasn’t even fully off of it either.

But she said they’ll be good to show them.

I’m just debating now if I should stay off my Methotrexate or not until that appointment.

If they’re going to do blood work, which they will, I’d much rather have them see all the inflammation and see all of everything that’s wrong, really.

As painful as it’s going to be, literally, painful as that’s going to be.

But I don’t know if that’s smart though.

I don’t know if the doctor would want me to do that.

I’ll have to ask when I’m making the appointment.

We’ll see what they say.

(they said to stay on any meds I’ve been given by my current provider)

I posted in this “Chronic Illness Support” group on fb about all of this.

With coming off the Methotrexate and the gaslighting rheumatologist…

I had some gal’s comment that they’ve got seronegative RA too and have been gaslit for years.

But most of them didn’t have the imaging or bloodwork to go with their diagnosis, they said so.

And they said they’ve been gaslit.

Which, still, isn’t right.

I think one gal said it right… she said if you respond to Methotrexate well, the dr has no reason to switch or change your diagnosis unless they have a better one for you.

And I thought that was a good comment.

Another gal said if I have the imaging, I have RA, period.

Which, I have documented arthritis in my hands, wrists, ankles and feet, along with every other major joint in my body.

And not to mention the bloodwork that skyrockets when I come off the Methotrexate.

So, maybe there’s something to this seronegative RA diagnosis.

Writing this out has given me an edge I didn’t have when I started this entry.

I do think I have something going on.

And I’ve thought that for decades now, and now it’s a touch more obvious I suppose.

And seronegative RA is the closest diagnosis to what makes sense.

It holds the best picture of what’s going on.

I guess.

(gotta add that hint of sarcasm and doubt of course)

– Keren