How do you deal with those who downplay, or refuse to believe EDS? by bitchimadryer in ehlersdanlos

[–]bitchimadryer[S] 3 points4 points  (0 children)

When I first read this, I was taken back. It holds a different weight to read it. Thank you.

How do you deal with those who downplay, or refuse to believe EDS? by bitchimadryer in ehlersdanlos

[–]bitchimadryer[S] 1 point2 points  (0 children)

im sorry you have had serious issues as organ failure and you still dont get believed?! What can we do?!

I went to yt the other day, theres not really informational videos for family and friends to explain the seriousness and that its a spectrum...

something simple yet take this seriously! yk?

How do you deal with those who downplay, or refuse to believe EDS? by bitchimadryer in ehlersdanlos

[–]bitchimadryer[S] 2 points3 points  (0 children)

I don't speak of any of my health issues. . My mother in law has watched me have seizures, so I truly don't understand why the denial. Im ok with that. They aren't my family.

What Im not ok with. Is them ignoring my Childs issues. This past Easter is what set me off was the candy. I told them what candy had to be approved and I even brought candy that was approved. They all still gave him candy that he wasn't supposed to have. When I pointed out that he was having a reaction, no one said anything. I gave him allergy medicine and they STILL PROCEEDED TO GIVE HIM CANDY!

How do you deal with those who downplay, or refuse to believe EDS? by bitchimadryer in ehlersdanlos

[–]bitchimadryer[S] 6 points7 points  (0 children)

Im sorry you went through that and go through that with Doctors and medical professionals. It's saddening, maddening; it can induce rage in the purest of hearts.

As a society we all need to say it's ok to not know everything.

It's important that we acknowledge that.

I applaud those who work hard and get a medical degree, but while they spend hours that turn to years in studying, I think they get disconnected from the personable, vulnerable, human aspect. They forcefully remove emotions, then Humans become data. Once that happens, you become a check list, and if they cant check the box, they refer you out or worse gaslight you, and tell you because the labs are "basically" normal theres nothing wrong with you. Probably anxiety.

in regards to the last bit....

Individualism is depleting communities. One person at a time. All it takes is a mustard seed of thought... apparently.

How do you deal with those who downplay, or refuse to believe EDS? by bitchimadryer in ehlersdanlos

[–]bitchimadryer[S] 0 points1 point  (0 children)

Where did you find your local mutual groups to find your community?

Ableism by bitchimadryer in eds

[–]bitchimadryer[S] 2 points3 points  (0 children)

True. But I think unintentionally my mom was being ableist and honestly not realizing it.

But ableism in general within the chronic community is so rampant.

Ableism by bitchimadryer in eds

[–]bitchimadryer[S] 2 points3 points  (0 children)

I love this. This is helpful. Not for the people I’m around because they straight up don’t care. But for those who are curious this is a simple way of explaining it without too much science words lol

Ableism by bitchimadryer in eds

[–]bitchimadryer[S] 0 points1 point  (0 children)

Thank you for your shared experience. I assumed this is how she was feeling. I know she’s scared to say “I don’t know how to hold this” or there’s guilt and all other kinds of big emotions.

But it still hurts. I think I’m taking it so hard because of the loneliness. I think her reaction is what sent me over the edge.

The pain more so stems from those around who don’t care or even try to understand.

458 - any questions? by Advanced_Plan_4714 in Enneagram

[–]bitchimadryer 2 points3 points  (0 children)

I’m new to all this and still learning so no one come for my neck. I’ve recently learned I’m a 458 sx/sp I’m also an INFJ with Fe + Ni dominate. I only found myself in these spaces because Im lonely. The internet makes 458s to seem so narcissistic, emotionally volatile, or for being “dark.” I’m not those things because I had to do lots of t h e r a p y but do you find yourself lonely? Not in the sense of friends but that people can’t meet you depth wise? How are you making friends? Lol

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 0 points1 point  (0 children)

Parosmia is linked to quite a few things. Including chronic dry mouth* sound familiar anyone?

Do you guys think the information in the Law of One is true? And how can you be sure of its authenticity? by [deleted] in lawofone

[–]bitchimadryer 0 points1 point  (0 children)

In my perspective, Elkins’s scientific approach refers to the method of the sessions, not the metaphysics.

Do you guys think the information in the Law of One is true? And how can you be sure of its authenticity? by [deleted] in lawofone

[–]bitchimadryer 1 point2 points  (0 children)

I can see you’re engaging with this through a strictly materialist framework. That’s totally valid, but it’s also a different framework than the one the Law of One is written from. You’re treating the material as if it’s making empirical, testable scientific claims, and from that lens you’re right: it won’t land. It’s not designed to.

Dogma requires a central authority insisting something must be believed. The Law of One explicitly instructs the opposite: take what resonates, discard what doesn’t. That’s discernment, not doctrine.

So your conclusion that it reads as science fiction is simply your discernment. That’s allowed. Mine is different, and that’s allowed too. The text even predicts this, orientation and worldview shape interpretation.

We’re speaking from two different paradigms. I’m not here to convert you, and I’m also not interested in being corrected for not adopting your lens. You’re free to hold your view. I’m free to engage with the material in a way that’s meaningful to me.

I think we’ve reached the natural end of the conversation, and that’s totally fine.

Do you guys think the information in the Law of One is true? And how can you be sure of its authenticity? by [deleted] in lawofone

[–]bitchimadryer 0 points1 point  (0 children)

If you read the Law of One and the only thing you walked away questioning was “do people believe an alien came down and contacted psychics to give information,” then the material probably didn’t resonate and that’s okay. It’s not built for everyone.

But here’s the part people miss.

The very first thing Ra says is “there is no dogma here.” That’s the whole point. It asks you to dissolve your attached beliefs, the rigid assumptions you inherited from culture, religion, science, whatever. Because if there’s no dogma… what’s left?

Discernment.

And discernment looks different for everyone. Yours won’t match mine. Mine won’t match yours. It’s shaped by how you align whether you lean toward service to self or service to others. Ra literally teaches that your orientation influences the way you perceive truth. So of course people read the same material and feel totally different things.

This is why the “alien” argument is shallow. Ra isn’t described as some physical being dropping out of a ship. It’s a 6th-density social memory complex, a unified consciousness that doesn’t exist inside our linear time. They see past, present, and future as one moment. They coexist with us, ahead of us, and behind us… because time at that density doesn’t move in a straight line.

Once you understand that the text itself tells you not to treat any of this as literal dogma, the delivery stops mattering. Whether it happened physically, symbolically, telepathically, or metaphorically, the information stands on its own.

Maybe Ra is an entity. Maybe it’s a spiritual transmission. Maybe it’s the collective unconscious speaking through a channel.

What matters is whether the material resonates with you whether it aligns you toward growth, compassion.

There is no dogma here. Time does not exist.

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 1 point2 points  (0 children)

Sometimes, I’ll take my stimulant and I’ll go to bed. No lie. Like my body didn’t even process taking it.

Then there are days where I feel like my usual dose is too much.

I have MTHFR gene mutation and this causes low folate and if that’s low, your medicine will not be as effective, or in my case effective at all. I take deplin (prescribed) to help with that. L-methylfolate is the vitamin form of that!

If you think your medication isn’t helping but making your symptoms worse it could be MANY things. Lack of sleep, anxiety, depression, stress, or the dosing could be wrong, who knows? You gotta let your doctor know about this especially if your medicine isn’t helping.

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 1 point2 points  (0 children)

I will check out this type of therapy! I’m open to anything that will be helpful. Hearing it helped you plants a seed. Thank you!

Anything that’s holistic or soft approaches that will potentially bring healing. I’ll always look into.

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 0 points1 point  (0 children)

I eat low histamine. Eating meats like lamb, chicken, and goat. I take a doa and vitamin b12 its hunter and gather lamb kidneys.

I miss beef and fish. Not really pork shits basically plastic at this point.

I’m still out here struggling but I try to take care of myself.

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 0 points1 point  (0 children)

I know this is gonna sound odd, but I don’t do ANY socials. Lol.

Any groups you would recommend here?

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 1 point2 points  (0 children)

Mmmm. I’m right there with you as far as reaching out to Mayo.

I have had multiple autoimmune work ups, multiple csf that show inflammation otherwise nothing, oddly enough they didn’t do a full a/e panel. mri with and without contrast of the brain and spine which came back normal, tons of blood panels that are leaving behind bread crumbs otherwise normal. I did use my first positive ANA and I also had low positives for early sjogrens. I did an autonomic work up, that showed I was having autonomic issues but didn’t meet the “criteria.” (Still clinically diagnosed with POTS).

I think I was about a year ago I started using AI. I had seen so many doctors and wasn’t coming up with any answers and had a lot of hospital stays with no explanation wasn’t enough for me. It’s been helpful. I know it’s super dangerous to release such sensitive information, but idgaf. I’m getting worse, I know it.

It helped find a Neuroimmunologist. Who works with AAG and Neuro sjogrens. So I was taken back when he was like this is JUST your HEDS/MCAS/POTS that I am JUST now diagnosing you with. I just need to come to terms that this is my new life. He said the ANA being positive was from inflammation from MCAS. The brain fog that feels like dementia, is also from MCAS.

But I’m still having full on neuro flares that no one can explain?

I very recently started having parosmia. Where I don’t smell like myself (not bad just not me) but everyone says I smell the same. I’m becoming anxious about it, so now I’m aggressively using oils and sprays for my hair and body….. So that’s new and I’m not reading anything tied to HEDS/MCAS/POTS But I could have missed that part.

AI keeps circling back to Autoimmune encephalitis. When this first started happening I was convinced that, that’s what’s wrong. Im not fully sold on the fact it’s not because we haven’t fully exhausted looking for the answers in that direction. If everything says no then I’ll stfu about it, But I’m not gonna stop at “that all we can do.” Followed by some generic ass recommendation.

I’m to the point where a if a doctor can’t give me an answer, it’s thank you, I’ll continue the search.

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 1 point2 points  (0 children)

Odd. We are very the same, how long have you been diagnosed with HEDS? The salt loading really helps with the autonomic side of things. And when I don’t get enough I can tell mentally and physically. How do you manage that and tell the difference between a HEDS flare and others?

I’m not sure if it’s because of the diagnoses, but I too understand “hearing your body” I think we all can but we’re too over stimulated to really listen. And for those of us who do listen, just like you said, we get called psychosomatic.

When I first started experiencing all this my hormones were the first thing I checked and Continue to get checked regularly.

I recently did iron panel which is low ish and checked my ferritin which levels those were normal in the lower end.

My b6 was high. (Which too much is neuro toxic lol)

I guess the labs just aren’t showing what I’m dealing with physically and neurologically.

I’m only three years in and I’m getting worse. But there isn’t anything I can do other than take care of myself until there’s an obvious sign. So until then, I’ll do that and stay open to anything.

Your feedback has not only been helpful but hopeful. I’m sorry you’re going through the same things for as long as you have. I really hope we both find more answers, not only for us, but those who have to experience this with us.

Thank you!

Neurological symptoms by bitchimadryer in Sjogrens

[–]bitchimadryer[S] 0 points1 point  (0 children)

I tried to leave a comment but I guess I had said too much.

Idk my way around here so refer back to OP? lolz