How did I sleep and injure myself?

How did I hurt myself, while I was sleeping?

That is seriously ridiculous.

My left hip is fucking killing me.

It’s radiating into my lower leg, and into my lower back.

It sucks.

Big time.

It’s now a few days later and my lower back has been killing me ever since I slept on my left hip wrong.

It’s hurting right above where I get my RFA (lumbar ablation) done.

So, I’m pretty sure I have another pinched nerve that was just set off by sleeping on my hip wrong the other night.

It’s been there for a while – the pinched nerve has, that’s why I had my pain management doctor write an order for another lumber MRI a while back.

I’m getting it done on the 26th.

Because I’ve felt it there for a few months already.

Like, when I vacuum, or sweep, or something like that – it’ll get set off.

But sleeping on my hip wrong really did a number on it. 

It’s now Wednesday and I slept on it wrong on Sunday night, Monday morning.

And, man, I tell you what…

This is brutal.

Every time I walk Bruce it’s a zapping pain on the left side of my back.

It’s radiating into my butt too.

Not down my leg yet.

But, it’s only a matter of time before that happens.

It feels like it’s on the left side, just like my other pinched nerve.

And I googled if it’s common to get another pinched nerve after you have one…

It is…

Great.

I absolutely hate dealing with this chronic pain bullshit.

It’s fucking terrible.

I went back on my Methotrexate on Tuesday.

It’s been 24 hours now, and my knees feel a bit better already.

I realized that they started to hurt so fucking bad the second that I started to come off of it back in January.

I don’t know if it was a combination of the nano PRP injections back in January AND coming off of the Methotrexate or what.

Because my super high pain levels started back up at the beginning of this year again.

And I came off my regular dose of my Methotrexate in the beginning of January/late December.

The last time I filled my prescription was October 30th, and it was for three months.

I know I did have a few weeks extra of medications in my bottle, but still.

That’s a long time to be out of it.

The next time I filled it was on May 14th of this year.

And I filled it because I did want to go back on it back in May.

I had been thinking about it already.

But I didn’t actually start it until this week.

And, I’m legit shocked at the difference it’s making so far.

It’s significant.

That ache, that piercing ache, it has subdued a bit already, in my knees.

And I know it’s from going back on my meds.

I went back on it for several reasons.

I can feel the inflammation again.

I can feel my face and my legs getting puffed up and stiff.

I can feel it in my skin being stretched thin from the inflammation.

And also because, I was talking to my primary care doctor about my RA on Monday.

And we were talking about my Rheumatologist.

I told her about how much of a jerk he is.

I told her about how much they focus on seemingly, the hands only, and how he was like “WHOA! WHOA! No emotion! No emotion!” when I cried at my first visit with him.

She said that he was, in fact, a jerk.

But she told me that his notes said that I do in fact deal with seronegative RA, and that he was, in fact, quite clear about that.

She said his notes are very conclusive and pretty straight forward for me.

I gotta say, I was extremely shocked.

Because I also told her about the “lazy” diagnosis, and how he pawned me off on the Fibromyalgia train too, and tried to get me to see his “buddy” in pain management.

And she agreed with me that he wasn’t listening. 

But she also showed me his notes.

And they were very, very clear that I deal with Seronegative RA. 

She said he was, in fact, a jerk, but that I should keep seeing him because my insurance doesn’t cover anyone else in the area that I know of yet.

And unfortunately, I agree with her.

So, I guess I have no choice but to go back to him right now, and just deal with it.

I’ll try to find another doctor before my next appointment I guess.

I’m curious to see what my bloodwork that I’m getting done this week will say too.

I had an appointment this week, on Friday, with the Rheumatologist, but I hadn’t done my bloodwork yet.

So I made an appointment for the bloodwork on this Friday, and rescheduled my appointment with the Rheumatologist for the following Friday.

That should be enough time to get the results back.

And if not, he should receive them within a few days of my appointment, and I’ll have had them done, so It’ll be fine.

I really didn’t want to see him ever again. 

But, my primary care doctor is right.

She is.

My insurance doesn’t cover any other Rheumatologist, at least, that I’ve found yet.

I’ll start looking next week though.

And try to find someone in south Austin or San Marcos or something.

But for now, I have to suck it up, and see him.

It’ll actually work out pretty well next Friday.

I already have an appointment in San Antonio, a couple of hours before my Rheumatologist appointment.

I have my follow up ultrasound for my vein ablation at 2pm, and then the Rheumatology appointment at 5pm.

So, it’s perfect timing really.

Traffic will suck for sure.

But, I won’t have to make two trips down there for that.

Which is great.

I’ll probably have an hour, hour and a half or so to burn.

But I figure, I’ll go wait in the Rheumatologist’s office and see if they can get me in any earlier.

I doubt it, but it’s worth a shot.

I was grateful they could reschedule me for the following week.

Usually they’re booked out for about three weeks or so.

So, that was lucky of me.

It’s wild too, because with all of this starting and stopping medications – it’s really because I think I’m doing better.
I feel as though I don’t need the medications any longer.

I’m fine now.

But, my mind plays tricks on me.

It’s kinda delusional thinking, really.

It tells me I don’t really have RA.

That I don’t really deal with these things.

That I’m making it up.

That I don’t test positive for the genetic markers that the doctors look for anyways, so I obviously don’t have it.

Even though my genetic markers really did light up for RA when I got my DNA results back.

It’s like my thinking patterns trick me and tell me I don’t really deal with any of this stuff.

That that’s not me.

That’s someone else.

That I don’t really need this or that medication.

I’ve been taking it, but I’m fine now.

I’m good now.

My CRP levels are fine right now, I feel good, I’m fine.

I no longer need the medication.

But just a few months off of the medication – and Methotrexate takes a few solid months to come out of the system, and I’m right back at it.

Puffy as fuck.

Inflammed.

In so much pain.

And the Methotrexate helps so much with bringing pain levels down.

I forget how much it helps.

I just feel… physically… bad.

I forgot how absolutely shitty I feel off of it.

It’s been a couple of years since I hadn’t taken it again.

And I simply forgot.

Now I remember.

I went back and looked at my mood app, and when I had gone on it a few years back in 2023.

After a couple of weeks I was able to notice swelling and pain reduction.

So, that’s promising.

I’m not going back on the Hydroxychloroquine, the one that causes retina damage after a while.

That’s a no-go for sure.

But the Methotrexate, yes.

I have to.

I’ve tried to come off of my medications this year, and I just can’t.

I’m sorry.

I can’t.

It makes me hurt too much – mentally and physically, to come off of them.

Because being on the medications makes me feel better.

They make me feel as if I’m no longer sick.

And that’s thanks to the medications.

That’s because I’m on the medications.

Not because I no longer need them.

I’ve realized that I just can’t come off of most of them.

But don’t get me wrong, I absolutely hate dealing with these chronic issues.

I hate dealing with chronic pain.

I hate dealing with chronic mental illness.

I hate all of it.

But I’m unfortunately forced to deal with it.

And I’m forced to take the medications in order to feel like my “typical” self.

I get so jealous of folks who don’t have to take medications – of folks who don’t have all of these medical issues.

They can walk around, raw dogging life like that.

It’s foreign to me.

But I’m coming to realize, at the age of 43, and having to take medications literally since day one of being alive, that medications are just a part of my life.

They always have been.

And they always will be.

And I’m finally good with that now.

I’m still taking the Niacin and  Vitamin C, and they’re helping a lot too.

I’m still taking Zinc, Melatonin, and others like Turmeric and more…

I believe I am severely Vitamin B3 deficient, for sure, so I need to supplement that.

It helps with my hallucinations – it helps curb them.

So, not only do I have to take medications for the rest of my life, but I have to take certain supplements too.

And I’m fine with that.    

Speaking of hallucinations, I have an update with my psych NP.

I saw him on Tuesday this week.

It was ridiculous because the second we sat down, he said he was looking at Andrea’s (his nurse) email from the other week, when I had called in for that medication change, and he said it clicked a few days later that he and I had talked about adding the Abilify to my regimen.

It’s like – duh.

Why didn’t he call it in then, then?

I have no idea, I didn’t ask.

I didn’t think it was worth it.

But anyway, we talked about how the Abilify could possibly be just what I need to lower my high Prolactin levels.

And I told him I’d much rather try to regulate these types of medications with him, rather than the endocrinologist.

Who would have to prescribe a dopamine antagonist for my Prolactin levels, which would interact with my Paliperidone, which I would then have to stop.

And I’m not going to stop the Paliperidone.

So, he added a low dose, a 5mg tablet of Abilify to my regimen.

He asked me if I had any lab work done recently.

I sent him all of the lab work that my primary care doctor had sent me, to send the endocrinologist.

He started laughing when he got the email.

He said that there were a lot of lab reports.

I laughed too, and said – I just sent you what she sent me to send the endocrinologist is all!

It was funny too, because as he was talking to me, he was trying to find the word “lower” for my Prolactin levels.

(English isn’t his first language.)

And he talked for a minute about how the struggle is real when he has to wrack his brain like that for certain words.

I told him I can’t even imagine how to deal with that ever – let alone at work.

Whenever I get into the actual exam room with him lately, like, within the last year, he remembers me, and remembers that I know what I deal with, I know my body, what works for me, and that I’m different from the bulk of the other patients he sees.

And I’m grateful for that.

It was hit or miss for quite a few years with him.

It was almost like he didn’t trust me.

And I still don’t fully trust him.

He works at a state run clinic, and I’m sure sees tons of folks that try to work him over in more than one way.

Because when I first came in on Tuesday, and started asking him about the Abilify, he said, “you’re telling me what to prescribe” in a total joking way – he was laughing.

And I laughed too and said “no, no, no, this was your idea a few sessions ago, I just started looking into it a few weeks ago and got on board.”

And he nodded his head in agreement.

That’s when I told him I didn’t want anything prescribed by the endocrinologist, I would much rather work through him than do that.

And he said he agreed.

I told him I’ve been looking up a bunch of stuff and was finally ready to see if the Abilify would help.

It’s funny that he trusts me, once he sees me.

He knows that I know my body.

And that I know what I need.

But he doesn’t get that over the phone.

Maybe he just can’t keep everything and everyone straight.

Maybe he’s just more of a visual person.

Which is fine, I guess.

I think I learned my lesson with that phone call to his office the other week.

I think I’d rather just get on a cancellation list and try to see him instead of playing phone tag with his nurse.

On a different note, I’m restarting physical therapy on Friday this week.

I’m kinda excited, kinda scared.

I know the first day will most likely just be an evaluation.

Probably not much in the way of actual stretches or exercises.

But I’m scared to see my range of motion.

It’s very limited right now.

Very.

My legs are so stiff.

And it doesn’t feel like my legs are the problem, it’s my fucking knees.

I can not bend my knees (or legs) properly.

It fucking sucks.

They just seriously hurt.

All the fucking time.

It’s so fucking frustrating.

I didn’t have Hannah this week.

And of course, all of these things happened this week that I really needed to talk to her about.

It always works out that way.

I could’ve really used a talk through about the Rheumatologist and the Methotrexate.

And, I guess not so much about my psych appointment, but more about the Rheumatologist.

I’m so nervous to see him again.

I luckily didn’t say anything rude or mean or really, anything at all, last time I was there.

I was cordial, listened, took the paperwork from the doctor, and left after the appointment was over.

I didn’t storm off or anything of the sorts.

So it’s literally all good on their end.

So, that’s a bonus at least.

Thankfully I didn’t go off on the doctor, or the staff, or anything.

Which shows how far I’ve come.

Because any other time in the past – if I would’ve gone to that appointment even just three or four years ago, I would’ve popped off on that doctor, the PA there, and the staff.

I would’ve made an ass out of myself, big time.

And I wouldn’t have been able to go back.

So, it’s amazing that I didn’t do that.

It’s awesome that I didn’t do that.

Honestly, I’m impressed that I didn’t do that.

It’s pretty great.

It’s now Friday and I did have my physical therapy appointment this morning.

And I had bloodwork done too – I was surprised to see that my CRP levels were within normal limits.

I had taken a dose and a half of Methotrexate, so maybe that brought it down.

Or maybe it has stayed down since I cut out gluten.

It’s hard to say really.

But my glucose was not within normal limits.

I’ve regained about 20-25lbs from the 130lbs that I lost last year.

And it’s showing.

I’m at a point where I need to reel in my weight again apparently.

For more than one reason.

But, anyway, the PT appointment went really well.

I really like the PT guy that I got.

He’s super cool – he said he’s a “glass half empty” guy, that he’s a realist.

I said I am too.

He told me I’ve got to work on both straightening out my leg – getting the back of my knee to touch the surface of whatever my leg is laying on when it’s laid out straight, and bending by leg.

I ordered a “yoga stretching band” with foot/hand loops, that’s what the photo is at the top of this entry.

It was $6 on Amazon.

He said it’d be easier to loop around my foot, and he’s right. 

It’s super handy.

It’s now Saturday and I just did my at home PT exercises.

I have two to do twice a day, and one to do once a day.

The once a day is a doozy.

It’s a straight leg lift.

Which, for most folks is nothing really, but for me is everything.

Dairen, my PT guy, told me (and I have heard a version of this before) that the big muscles leading up to the joints area in pain, will shut down if the pain signals are strong enough.

Mind. Blown. right?!

So, basically, my knees are sending signals to my quad and calf muscles to shut down every time I try to use them.

He said the muscles are there, that’s not the problem.

He said I have great quad muscles, and calf muscles.

But the knees are sending signals to them to shut down when I do the leg lifts, or try to bring my heel into my butt by bending my knees.

So, he told me I have to tell my body to override those signals – which can be done, it’s just very difficult to do.

It takes a lot of work.

He said if I do my “homework” with him, and I really put the effort in, I’ll notice a huge difference and when I go to do my total knee replacements, it’ll be much easier for me to recoup afterwards.

He said to go home and rest after surgery is old school teaching.

Now, they have you up and walking that same day – get the muscles working and used to the new equipment in there as quickly as possible.

And I gotta say, it makes more sense to be up and moving right away.

You don’t give your muscles a chance to shut down that way.

Anyway, it was eye opening, and I’m ready to give it my all and have exercises that I just have to do everyday now.

He said my pain levels will reduce if I follow what he says.

He said they’ll amplify at first, but then go down.

And it was so nice to hear that for a change.

So, I’m gonna do the exercises that he says to do.

I told him that I’ve done PT countless times in the past, but this time, I’m ready to really give it a solid shot – that this time is different.

He nodded and said he sees it all the time.

People get to a breaking point and have no other choice but to change.

And I said that’s exactly where I’m at.

I’ll see him on Monday and Thursday mornings for the next few weeks.

I really hope it does help as much as he says it will.

He said he’s been doing this for 30+ years, so I believe him.

Oh! Bruce had a vet appointment this week, and his bloodwork looked really good!

I was so excited!

I think the parasite, or whatever he got in the river last spring that was making his hair fall out, and affecting his kidneys, has run its course!

So that was amazing news!

He’s still gonna stay on the kidney diet – I told his doctor that his poos are way better on it, so she said that’s fine.

He hasn’t had any chunks of hair fall out in about 3-4 months either.

So I really think that whatever it was, has run through, and done its damage, and died off.

I’m really hopeful that that’s the case at least – especially after his bloodwork on Thursday.

His doc did up his anti-inflammatory a bit. 

Now he takes a full tablet both in the morning and in the evening.

He was taking a full tablet in the morning and a half tablet in the evening.

She said he’s sore, and needs an increase.

It’s amazing how they can tell that from just poking and prodding and lifting up his back legs a bit.

But all in all he had a great bill of health, and I’m excited about that.

I told her that he was having issues with his front legs giving out and him falling on his face – and how it started after the river thing…

She said hopefully that’ll stop since she thinks it’s over with now.

So, fingers crossed.

It is getting fewer and further between.

So that’s good.

So, there were appointments all around here in this household this week.

I feel like there’s always lots of appointments for me.

Here’s hoping that next week goes smoothly!

– Keren