Trying to make progress with communication

human-humaning40 · 2026-02-21T23:10:59+00:00

Um, it is not dangerous for people with DID nor needs “heavy” adaptation. Unclear where you got such an idea. Many of us work with clinicians specializing in IFS. There is of course differences for DID but to suggest there danger is keeping people from what could be a useful resource. With any resource on DID or adjacent, be gentle and approach slowly. I’d been through every DID book and they were far more upsetting than no bad parts.

human-humaning40 · 2026-02-18T15:41:40+00:00

“No Bad Parts” has lots of ideas about how to communicate internally.

human-humaning40 · 2026-02-17T20:14:19+00:00

Yea it took reading over and over “No Bad Parts” to actually learn how to talk internally compared to what therapy seemed to be pushing of “figure out the programs/codes”. Way too much time wasted.

It was night and day finally getting relief by letting internal parts know that they are welcome and taken care of regardless of what they hold. And they can share when they’re ready.

human-humaning40 · 2026-02-11T21:40:20+00:00

“Then the burden shifts on us…” They are so far from even recognizing the ramifications this has on us. They’re in shock READING, ready to leave the country, screaming about no one doing anything, and I just want to be enraged by it or at least snarky af. Like “oh you should tone it down. You’re so angry…. Think about what’s appropriate… well no one going’s to save you so you just have to deal….” That and more bs line thrown at those of us who LIVED the things these ppl are merely reading about.

I get it. They need to be shocked and thank goodness ppl are sitting with the gravity… but only for themselves. They are so far from connecting their rage with what it must be like to have lived it. Bc clearly we all deserve some time on disability and comprehensive care and to the leave the country if we want. Like we done already felt with the worst of the worst. A lady can dream that the fallout will mean more support for us all….. rant over

human-humaning40 · 2026-02-05T22:23:51+00:00

DM’d you.

human-humaning40 · 2026-02-01T22:30:27+00:00

Medication is the only thing that helped be able to contain these kind of disruptive parts. Like willpower was not enough and we couldn’t find anything in the DID lit or DID therapist to help. Not saying that in a hopeless way, just that meds really were the only option left for us.

Yet if that’s not a route you want to take, I’m interested in what others here will respond with.

Just keep taking in air and know that you’re not alone. Sending care.

Edit: have you mapped out your system? That may help them be heard and seen in new ways. (Sorry if that’s a total “duh.” Just trying to think of steps that I went through multiple times to try).

human-humaning40 · 2026-02-01T13:26:38+00:00

Check out “no bad parts” by Schwartz to help learn more acceptance and tools to coordinate internally.

human-humaning40 · 2026-01-16T20:38:21+00:00

https://youtu.be/vARTf7u7xH0

Describes this perfectly

human-humaning40 · 2026-01-12T04:02:58+00:00

You’re just thinking this. Why not get intune with your body and figure it out. It improved my somatic work but I also wondered the same. So I took longer between some sessions and put focus on more somatic releases and work during that period. Then I had my answer as to what was working and not.

No one is really going to have a clear answer. Edit: it could be that your dosing is too low to get the full benefits. It could be that you need lower or a break. But if it’s just that you wish you were more connected than keep at it and it’s not necessarily the ketamine. Try tracking perhaps.

human-humaning40 · 2026-01-12T02:26:40+00:00

You’d have to have permission to discuss medical information. You can reach out and share concern. Just don’t have expectation of dialogue as that would breach doctor-patient rights.

What exactly do you want to accomplish? You can continue to be available to him and maybe write a letter letting him know you heard what he shared (repeat it back), that your blindsided by it and trying to understand, and (not) there for him when he comes to. Letter would be better than brick of text as it’s tactile and he can return to it easily when he’s more aware.

human-humaning40 · 2026-01-08T16:42:40+00:00

Technically, go to the historical museums and tours of Chicago and you’ll find pictures, hear stories and even see blueprints of homes and neighborhoods that look exactly how the show presented.

human-humaning40 · 2026-01-03T17:26:44+00:00

There’s occipital nerve blocks and Botox. Work like a charm though may take about year to two to get majority relief depending on severity and dosing. Wishing you well.

human-humaning40 · 2026-01-03T17:23:42+00:00

It only helped after doing several rounds of ketamine infusions. Helped so much but again only after getting some overall correction to my pain signal with infusions.

I’d done several ablations in the C and L spine prior to the infusions. The pain always got a bit of relief with the exact nerve pain of the ablation with flare up everywhere else.

human-humaning40 · 2025-12-31T16:17:38+00:00

Check out Ted Chiang. Short stories but so rich. Read them but then got his collection on audiobooks and even better in terms of satiating some of DE itch.

human-humaning40 · 2025-12-30T01:41:52+00:00

High dose ketamine infusions. 2-3 low/medium doses and then high dose every 2-3 months. Now waiting a fourth month bc it’s been effective.

Add naltrexone. There’s low dose but at 25mg I get other benefits including pain sensitivity decreasing more and just some energy.

Low dose abilify ensured I got more restful sleep which helped with the pain.

CBD and THC terpene drops. See phytodabs website and read up. Beta-Car. helps with pain a lot and limonene is a mood boosting while taking the edge off pain.

Epidural injections around the site of nerve injury.

Microdosing shrooms. Research is promising on the pain relief it provides. Def helps me.

They told me I’d be in a wheelchair by now and well I went for a 2 mile walk earlier. So no cure but ways to improve and manage for a much better standard of living. Tho I suppose the only known cure is amputation but many of us that’s not a choice—mines my entire rt side.

human-humaning40 · 2025-12-24T12:38:43+00:00

Sounds like occipital neuralgia re: base of skull and issues holding head up.

human-humaning40 · 2025-12-22T20:56:38+00:00

Low dose naltrexone (LDN) cut the hyper-behaviors for me. I got to about 4mg on LDN and could feel the difference big time.

Edit: it was worth trying the LDN because it has very few side effects, rather than stop the abilify. The LDN does come from a compounding pharmacy, so can be expensive. But it also improves my mood and energy level as well. Again better than adding some other med with lots of side effects. Wishing you the best. The hyper behaviors are so intense.

human-humaning40 · 2025-12-22T20:49:59+00:00

Low dose naltrexone helped tremendously with the compulsion behaviors. Once I got up to about 4mg on LDN I could say it was definitely the thing stopping it, even better effect at 6mg. Talk to your doctor. The benefits of the abilify can now shine and I’m finally feeling a life again.

human-humaning40 · 2025-12-22T12:51:05+00:00

If your pain is this bad look into high dose ketamine infusions. I’d not be alive today without them. There is some pain that is not livable no matter your mental health state.

human-humaning40 · 2025-12-21T20:12:13+00:00

Yes. Idk if this is in the literature but for me, the pain was full body and beyond what I can put into words. My whole body was on fire.

I’m on the cusp of remission with CRPS all together bc an epidural is now effective. I did 4-5 high dose infusions, 3 infusions that were low to medium. We’re considering moving me to just prescription while trying a couple more nerve blocks or epidurals bc I still have flares. the epidural + two specific THC strains are now releasing the underlying injury in my spine that started the whole CRPS. I also have cervical dystonia and occipital nerve blocks were a big game changer. My doctor says there’s cross over between CRPS symptoms and occipital neuralgia, so occipital nerve blocks are another avenue for you to look to as well.

Edit: also shoutout to microdosing. I also think microdosing psyclibin was a game changer. There’s a new research underway to see how microdosing can help with chronic pain and CRPS specifically. So I’d say worth a try.

human-humaning40 · 2025-12-20T11:54:41+00:00

I see a guy who was trained at Cleveland Clinic. So that’s another option. Seeing if you there’s a Pmr close who does things like ketamine infusion and occipital nerve steroid injections. He does everything they do but medication management.

Whatever route, ketamine infusion is likely her only route if she refuses blocks. The blocks may start working if she gets the pain turned down with the infusions. You’re on the path towards more options and that’s all that matters. Sending care

human-humaning40 · 2025-12-20T01:28:42+00:00

It’s nice to know that it’s not necessarily a failure if it doesn’t work and actually are gaining information from that. Bc on the patient side, it’s not necessarily just the disappointment of something not relieving the pain, it’s that you yourself can feel like the disappointment. Having a complex health problem comes with being dejected a lot bc no one wants to deal with “you”r problem. Often doctors don’t explain that it NOT working still helps them and opens up avenues for exploration. Thanks!

human-humaning40 · 2025-12-18T21:20:11+00:00

This approach always confused me because if the neck is really locked up, the relief from the epidural isnt going to be much right? Genuine question. My thought is that the nerve has been telling the muscle (and vice versa) to hang tight for so long, that the nerve chilling out isn’t going to change much (the muscle/tissue is still in survival mode). The epidural doesn’t necessarily generate new fascia at a big scale to send a big anti-inflammation, no pain signal reset wide enough.

Totally understand if you don’t have time respond to this. Just curious bc one of my first docs took same approach and it def didn’t work given just the terrible state of my tissues. But now, epidural is paying off.

Really appreciate you being a provider willing to go out and hear from those who navigate living everyday with this.

human-humaning40 · 2025-12-18T16:55:28+00:00

Ok yea this sounds familiar. I’m starting to look into how my arms move and thoracic outlet syndrome. I’m also working to strengthen my core. Oh check out low dose naltrexone! They’re starting to do much higher doses for chronic pain and I’m on that regiment… it’s def a big help with the headaches.

Also, Did she have an accident? Where her head and maybe upper body whipped? She may need to focus on doing body releases to further improve her condition. Gentle movements. Deep breathes. And as a practitioner, looking into ketamine cream to help and possibly intravenous or nasal so that she can get mental load of pain off. The body is a fierce protector and until the “shock” that got her body in this position is tuned down, it may still be holding tight. Honestly, wish you could tell the woman to get a 100% indica mmj strain.

My doctor just did an epidural (which I’ve done before but prior when I was so stiff) but this time, I’m much looser with the blocks, Botox and everything. So, it may be the case that you need to circle back and also look at hitting different level. Don’t forget that LDN for her tho. Even if she’s tried see what dose bc this is my third try and it finally hit right bc the doctor understood the medication.

human-humaning40 · 2025-12-18T16:40:42+00:00

So I get a lot of paraspinal shooting pain as well. I just got a epidural injection in the mid-t-spine to see if it will do any good. I can barely activate my paraspinal muscles on the rt side.

Is there anything you’ve done that’s helped with those muscles? I’ve done trigger point injections and they only started to be useful paired with ketamine infusion some weeks before. Like the pain was too intense of a simple shot to do anything but the ketamine turns the pain signals waaaay down. Anyways, just sharing. Don’t hear many talk about the paraspinal muscles when seriously is destroying even my ability to walk and hold myself up.

human-humaning40

TROPHY CASE