I have this giant entry all written up on my auditory hallucinations that I was going to post today.

It’s a continuation from last week.

But I’ll post that next week, or maybe in a day or two.

I have to do this one first.

I hate arthritis.

Let me rephrase that.

I fucking hate arthrits.

Seriously, I do.

I’ve been dealing with this crap since I was 26, 27 years old.

First it was OA, when they thought it was just in my left knee because I had an injury, and had an initial MRI done at age 26.

Then it was RA when they realized I had bone spurs and deformities in all of my major joint spaces when they did more imaging because my pain levels were intensifying, and I was having flares.

Then it was an unspecified inflammatory arthritis because I don’t have the RA genome, I’m seronegative, but I was having these intense flares fairly often, and still do several times a year.

Then it went to me having RA and OA because again, I have the flares, and I have high levels of CRP when they do blood work.

Which I do agree, is probably a more accurate, yet damning diagnosis.

Anyway, I had a pain clinic appointment today – it’s Thursday.

I didn’t see the doc, Dr. Zoch, I saw the PA, Alexis, but she’s just as awesome.

They’re both amazing physicians.

Anyway, I got there early, and they got me in right away, which was nice, they’re good like that.

Alexis comes in the room after a minimal wait there, and we start chatting.

I tell her about my legs.

How after my GSV vein ablation in my left leg, my right leg now feels 1000% more painful.

It’s cramping, tight, swollen, unbearably achy, burning and there’s sharp, shooting zaps going down the very outside of my thigh all the way down to the tips of my toes.

The muscle cramps are unbearable.

I’ll lay on the couch trying to relax at night, and my right leg will just throb and ache all night.

I asked her for a temporary script for a muscle relaxer, just for the month-long wait I have, until the GSV vein ablation procedure on my right leg.

My left leg muscles feel so much more relaxed than my right and I think the relief that I feel in my left leg just amplifies the right leg’s pain that much more.

(I still have the SSV vein ablation on both legs to go too)

She gave me a prescription for Tizanidine.

I’ve taken it in the past, and it has been quite helpful, and not as sedating as muscle relaxers can be.

I’m grateful for that.

I’m also grateful it’s not a controlled substance or a narcotic, which I wasn’t sure of, but she told me it’s not, so that’s great.

I do not like to take controlled substances if I don’t have to.

And I also told her that someone had called and rescheduled me (again) for my right leg procedure the other week, after rescheduling my left leg the first time I was supposed to have the procedure.

The first time there was an “insurance issue” they told me.

The other week they told me there weren’t enough people scheduled to make it “worth their [financial] while” for the ultrasound technician to come out.

The gal on the phone told me that they contract out the ultrasound technician and they have to pay them a fee.

And that it’s “not worth it” for them to hire the ultrasound technician for the whole day for only two appointments that they had scheduled.

So they needed to reschedule me for next month so they could accumulate more folks on the schedule to make it “worth it”.

I told Alexis I wish the gal on the phone just would’ve lied to me.

That they wouldn’t have said that.

Alexis furrowed her brow with a concerned look and told me she’d look into it, would be right back, and disappeared into the hall to talk to the medical aides.

I heard her say just as she opened up the door “I’m just trying to wrap my head around why they would say that…”

As she came back in, she said to me that there are now five people scheduled, and she thinks that’s enough for them to keep it going.

She said she doesn’t think they’ll cancel on five people.

So, I felt a bit of relief, but I’ll feel better when I get the actual reminder call, because they always reschedule a couple of days out from the procedure.

Which is probably the biggest fucking part of the frustration.

I’m looking forward to it, geared up and ready to go. 

I’ve got a ride lined up since I’m going under and required to get sedation, everything is all squared away and ready to go.

And then bam, last minute they cancel my appointment.

It’s so frustrating.

Mega disappointing.

And they make it a crap shoot, really.

It’s happened twice now.

Anyway, enough bitching.

Back to the appointment.

We switched gears to talk about the lumbar RFA ablation.

I need to keep up on them because of the arthritis, bulging discs, and pinched nerves in my L4-L5.

Well, it’s mainly for the pinched nerve.

It’s been six months already since my last one, so we scheduled my next one for the second Friday in August.

I feel good about that – that was a big goal before leaving there that day, making sure that was scheduled and set up.

The last talking point of my appointment today was the most disheartening.

I had X-rays taken last week of both ankles and feet.

Let me backtrack for a minute again.

I had surgery on my left ankle and (first) MTP (big toe) joint in July of 2021.

They really just went in and cleaned up a shitton of bone spurs.

I had a giant, 8mm bone spur on my first MTP joint on my left foot back then, I couldn’t bend my big toe at all anymore before surgery.

You could literally see it under my skin, it was so big.

And recovery was a bitch because I was in my giant psychosis episode, pre-diagnosis, not realizing it, and mixing that with the anesthesia, pain, stress and opiates was fucking terrible.

I had to come off my Suboxone for like a week and a half, and be on Oxycodone for post surgery stuff, otherwise my pain levels would’ve been through the roof my doc said.

So I was super anxious and worried about that too. 

Though my Dad was in control of the Oxycodone, and had them hidden away from me the whole time.

That’s honestly all I remember.

That and being in a wheelchair because I have an arthritic shoulder, so I can’t use crutches.

I remember that too.

And how difficult it was to shower and smoke cigarettes.

It was tedious and I needed a plastic shower sock thing.

I just recall it being a pain in the ass.

But I was already extremely paranoid at this time, and was hearing very, very heavy internal auditory hallucinations – rather known as my “psychic” abilities, they were very loud.

My behavior, I remember, was extremely erratic.

The medication, the opiates, probably didn’t help that in the least.

I was also still smoking weed occasionally – not that there’s anything wrong with that, I just don’t think it meshes well with me at some points in time that well, and this, this was one of those times it wasn’t working well for me.

I was not smoking heavily, but I was vaping concentrate which is much more potent than regular flower.

I was just a hot mess really.

And I was just out of surgery.

So now fast forward back to today.

All of that crap comes flooding back when she starts to talk about my X-ray results, on top of the actual disappointment of the current X-ray results.

They’re shit.

I have bone spurs in all of the joint cavities.

Ankle, foot and MTP’s.

Narrowing, disappearing joint spaces.

Bilaterally.

Left is way worse than the right.

My joint spacing in my MTP on my left foot is gone.

Like, gone.

My left foot seriously looks fucking terrible.

On my right, it’s significantly narrowed, not as bad as the left, but still moderately arthritic, absolutely.

There are bone spurs littering the images.

Alexis says that she thinks it’s best if I get referred to a podiatrist sooner rather than later.

And if I have one in mind, to let them know.

Surgery is on the table.

And they’re not able to do that type of orthopedic procedure at their facility.

They don’t have the credentials or the resources.

I briefly told her about my arthritic clean up surgery on that left ankle and MTP joint in the past, it was just four years prior, almost to the day.

I was surprised I wasn’t holding back tears.

I wasn’t even shocked.

I was laughing and joking with her.

Covering it up like a champ.

I mean, my left ankle and toe have been killing me again lately, and I figured the news wasn’t going to be anything remotely good.

And I asked for bilateral imaging because I knew it wasn’t going to be good.

I was hoping my right one was going to be just a touch better, which it is, besides the heel spur that’s starting.

It’s been bugging me too, the right one has, but not as intensely as the left has been.

It’s still disappointing.

Super disappointing.

No one in my family has arthritis like me.

I got a call back in ‘21 and they wanted to put me in a research study because of the severity of my case with no relevant family history.

I agreed and it fed into my delusions for the next few years.

It was worth it if it can in any way help find a cure for arthritis or help find out why it starts in the first place.

It’s just a total fucking bummer.

I was hoping the progression was slowing, but in four years the bone spurs that they cleaned up have grown back.

And that’s disheartening.

– Keren