u/AdhesivenessOk5534

Just found this sub, was anyone else also sold to a pedophile?

I have alot of health issues, and a few days ago I thought I was having intractable nausea, so I took my nausea meds and tried to calm down because I felt very odd and panicky and my heart kept racing, and I had severe severe severe nausea, this terrible feeling of my limbs being too filled with blood, and then sudden impending doom out of nowhere.

One thing about me is Ill out a dislocated joint back in place at home, so I dont go to the er for my regular excruciating daily symptoms. So every time I get the "youre going to die, go in NOW" thought i always go in

I go in they take me back get an ecg, my qtc is 570, I was having deadly arrhythmias, and severe drops in blood pressure and I thought I was just in a POTs flare

I have long qt syndrome, and my main nausea med zofran isnt helping I have severe nausea 24/7 without it and I know at one point im going to have to sit down and ask myself should I put my already 99% bed bound life on pause and stop zofran or continue taking it to have some QOL

I have a ton of issues and one of those being a steady leak of pottasium making me constantly walk around with critically low levels off of iv pottasium. I once got 6 bags overnight and my pottasium went from 2.6 to 2.7 and then continued to fall under 2. Ife had it for years but its gotten worse, it used to be intermittent now its refractory and causing damage to my heart

Im very traumatized, and im panicking everytime i feel slight nausea because im now terrified that its building up into a cardiac episode

Ive never ever ever had cardiac anxiety, and the fact that this is happening is making me tweak

I cant afford to buy exclusively certified anymore, Ive even gone down to eating just food that contains no gluten but having to forgo the cc risk to make the food a little cheaper and even a little is a LOT

People talk up and down about grocery prices and not once in that conversation has our disease came up and the fact we are spending damn near 3x more than they are

Im 22, im disabled, bed bound, on ssi, cant have any sort of income other than ssi because im too sick

I spend half my check on a months worth of groceries that would cost max 180 for non gf food, i had to do that because of my level of sensitivity I cant afford it

I cant afford to make sure im not damaging my body more, its too expensive and this is an issue.

Omg i didnt expect to start crying while writing this but oh well

I am so close to fully beating this phobia

It no longer controls my life, I no longer do things with the "what if I puke" thought in mind

I eat when im nauseated, I laugh when I panic bc its just vomit lol

I have a surgical feeding tube (g j) and can vent anx drain to help the nausea, basically sucking the would be vom our because my stomach and intestines are very much paralyzed

Handling my stomach contents on the daily was great exposure, being on the verge of vomiting every day almost all day without meds for the past year straight (ive cut down on zofran because I no longer take it as a preventive, only when I need it) was great exposure

Pushing myself to eat while nauseated

Sitting there for a bit while nauseated before draining to feel the uncomfortable and not react

Sure I have my times here and there where im like "oh i hope I dont puke" but they have gone down in frequency

Its annoying if anything at this point, sometimes I wonder if puking would be faster than syringe draining lol and then decide against it bc of my RCPD and I dont want to risk dislodging my 17 inch long tube

Im so much happier, I feel free

There have been times where I was like "oop might lose the fight here" but as the months pass the next thought isn't "omg omg omg what if I puke im so scared omg" it's "let me grab that towel in case I cant make it to the toilet in time" its so casual

The way I think about vomiting is so casual

Yesterday I was saying how its bad that I have basically an inability to puke, thats bad if I were to ingest poison if I didnt have my tube there is no way for it to get out

First time ive ever said that instead of "its a blessing to not be able to vomit"

Its possible guys, its doable

Cw: abuse, sh, mental health, weight loss with numbers, mentions of vomit, mention of potential death

**this one is very long due to the sheer amount of background information that is 100% pertinent to the situation**

Heres some background info:

Out of the past 8 weeks, ive spent 5 of them hospitalized. The first admission happened in South Carolina, I soent a couple of weeks there due to total gi failure, and inability to tolerate my tube feeds, and at that time a 15 pound weight loss in a month.

At the end of the admission my abusers (adoptive parents) kicked me out, I had to scramble to find a place and ended up leaving the state and moving to Atlanta, Georgia in under 72 hours. Thankfully a bio relative immediately took me in once he heard about the situation.

Tbh he was itching to take me in due to the continous sexual and other kinds of abuse that has been happening since I was 7 (yes all of this background info is important trust). Ofc when someone is going through that, and already has genetic mental illnesses (bipolar 1 with pyschotic features **i am in full remission for bipolar, medicine and treatment complient**) theyre going to be a pysch regular.

And thats what I was, a revolving door pysch patient. By the time I was 18 I had been inpatient over 30 times, had a slew of **incorrect diagnoses** that had been accumulated over the past decade I was in the mental health system. I was a "lost cause" nobody expected me to get better, I would hear "honestly this (the admissions) are going to happen for the rest of your life" this was said to me at 19 during my 7th admission of the year (2023)

They were absolutely, and completely wrong.

When I met my now fiancé in March 2024, I started taking my meds every day because I didnt want to cheat on him, as that was a habit every time I was manic. My dosage of Lamictal got upped to 200, my depressive episodes stopped, my self harm went down in frequency.

Fast foward to January 2025, I start therapy. My diagnoses get revamped, and I only ended up with 7 mental health diagnoses, one of those being dissociative identity disorder (DID) the amount of trauma, and suffering I went through was so bad it was deemed *intrafamilial childhood torture*, and after 18 was classified as severe domestic violence (family violence), so that diagnosis was correct, and something that was 10 years in the works. This was the determining facotor in my SSI approval so please dont accuse me of faking this i went through hell as a child, teen, and an adult none of these are lies you can scroll through my profile its not curated

I was originally misdiagnosed with BPD, and schizoaffective (despite my pyschosis *only* being in the presence while I was manic)

The BPD diagnosis has been haunting me, ive called and called and called every hospital trying my best to get it off my papers explaining that it was DID and CPTSD as well as ASD, all of those resembling BPD.

In September of last year, I almost died due to gastroparesis that I didn't even know I had until I had a GES (gastric emptying study) it was very mild at first barely meeting the cut off for gastroparesis (for context a normal stomach digests food in 4 hours, in 4 hours 10% or less is digested if there is over 10% its deemed delayed gastric emptying, my 4h retention rate was 11% in September) anyways I spent the next few months malnourished as my gastroparesis got worse and worse, I got a feeding tube placed (g j) on November 24th, and was doing well with tube feeds until this May.

I also was informed that I unfortunately have Classical-like Ehlers-Danlos Syndrome type 1, an exceedingly rare subtype of Ehlers-Danlos Syndrome affects less than one in 1 million, needs a faulty gene from BOTH parents. The main complication of this subtype is catastrophic GI failure that follows a specific pattern:

In childhood severe constipation is present

Adolescence- acid reflux, and other esophagus issues start

In the early 20s gastroparesis starts

In a few years time intestinal failure starts

Thats the pattern.

Ive gone from a pysch patient to being very very very very very very very very very sick but my pysch records haunt me (istg all of this is super important information)

Fast fowards to July, im in Atlanta and ultimately have to go to the er. I get there, my potassium is at 2, and other labs indicated my 6th time in metabolic acidosis, acute kidney injury, severe protein calorie malnutrition, and GI failure.

They admit me, I was peeved because it was my 6th hospital admission since January.

Everything was going great, they put me on TPN telling me that they dont know when or if im able to come off of it, and they were trying to find a specialist to sign off on it outpatient so I dont continue starving. At this point ive lost 40 pounds, 160 in May and now im under 120, I look visibly malnourished, there is visble wasting, and labs indicate severe malnutrition.

Then they get my records from SC....which included my pysch records. The tone in the notes (i can see every note written even if im not supposed to with this app called Guava) changed dramatically

"Patient is unable to tolerate tube feeds, evidenced by severe intestinal motility that was found during an attempted small bowel follow through" the small bowel follow through was canceled because I received some water soluable contrast only 15mls of it, I was told it would move out of my body in under 4-6 hours, it was still there 72 hours later so the first hospital discharged me saying they cannot deal with a case as complex as mine and to try MUSC but then yk I was kicked out so

Its the day they receive my records, im watching my notes turn into a "this is a pysch issue" despite there being no evidence of me being in an acute mental health crisis. They accused me of having an eating disorder because there was a "past mention of it" yeah ARFID because im autistic thats a common comorbidity. They said my "labs indicated it" yeah my labs are going to indicate malnutrition when im malnourished, thats common sense I fear. They started saying I have cannabis hyperemesis syndrome, I remind them that I physically cannot burp (RCPD) and I cannot puke because of it.

Im getting upset at this point, I am frustrated, im losing weight rapidly, and I feel terrible and I was so disheartened to see my ossues that havr genuine radiographical proof of my "ClaiMs"

I request to speak to a doctor this lady comes in. Im in awe, she looks like she stepped out of a black panther movie. Had the most gorgeous tribal markings, loads of jewelry, and other african related things. She has a calm voice, so Im thinking that she was listening and understanding. She was not.

When she left, I was calm and wasnt crying or anything just sitting there. A nurse came in a couple minutes before dinner, and asked me if ive been siphoning my Lamotrigine out of my j port (genuinely impossible thats literally 17 inches into my small bowel) I told her. "No???" explained how thats not true, she said that someone "saw me do it", I explained that my intestines are paralyzed and they probably saw some backage leaking out as yk my organs do not work. My medicine has been dribbling out due to it backing up.

They check my lamictal levels, they come back supriseeeee in range. But I suppose that wasnt enough.

I was picking at dinner (I can eat some foods but I drain everything i eat out of my g tube to stop nausea, and acid reflux also I have gastric failure so my stomach is just gone forever so no use keeping it in there). A nurse comes in with some nausea meds to take before I eat, and I stand up to empty the container I put my stomach contents in, I get up too fast and get dizzy (POTs) and spill my container on the floor and nurses shoes. I was mortified, I apologized profusely, grabbing towels to wipe it up. She gave me my meds and left the room.

Im sitting there, eating some pudding and mashed sweet potatos when the door to my room opens. There are AT LEAST 12 people with gloves on flooding my room, ripping furniture out, gathering my belongings. Of course I start panicking, im like "??? Whats going on??" They tell me the doctor (the african lady) placed me on a pysch hold because I was "threatening to rip my central line out and my g j tube", i never said that also why would anyone do that, i also have a port so its impossible for me to rip out an implanted device and my tube is 17 inches long into organs that are failing I wouldn't mess with that if someone payed me a billion dollars

They take everything, im crying and panicking on the phone with my uncle because ive been in this before, i was so upset because I did the work, I went to therapy, I stayed on my medication. The doctor comes in and basically alludes to another reason why they did this to "see if my sickness was being exacerbated by myself" yes they literally accused me of that. They also accused me of assaulting a staff with bodily fluids.....I accidentally spilled my puke bucket I understand getting gastric contents all over your shoes is upsetting but I did not at all do it on purpose.

Once the morning comes, the internal medicine doctor immediately lifts the 5150 because there was no evidence that I said that, my lamictal levels were in range, security footage was reviewed, and on top of that I never got a risk assement prior. Thats like the mental health equivalent to an officer not reading someone their Miranda rights. There was 0 evidence to support that I was in an acute crisis, he managed to pull records from my old therapist which showed how much progress I made and how most of my pysch disorders are in remission.

The doctor who sectioned me refused to sign off on TPN outpatient despite 4 doctors spending hours upon hours trying to plead my case. All of them sounded so disappointed when they came to talk to me, apologizing saying they tried to approach the situation at every angle with the GI doctor (the african lady) but she wouldn't budge and kept insisting that since there was nothing wrong with my g j tube I can continue tube feeds despite me not being able to do so in months, she accused me of having cannabis hyperemesis syndrome, and recommended in my discharge papers to stop smoking weed. Now CHS comes with pretty definable symptoms, sugh as irratactble vomiting (which yk...) and nausea and stomach pain that is alleviated by hot showers. If I go into a hot shower when im nauseated it makes me infinitely more nauseated, also weed is the only pain management I use and I partially dislocate my own joints several times a day so. They lost a very important thing, my 24/7 heart rate tracking band, I was like "ok wtv"

I got discharged ultimately, and it wasnt until last night that I checked the front pocket of the bag I had at the hospital looking for an ENFIT syringe cap to take my meds, im rummaging around in there, and realize that my engagement ring was nowhere to be found at all.

When they searched my stuff it more than likely fell, or got misplaced.

How am I supposed to accept that my engagement ring is just gone due to mental health prejudice, and just an astounding amount of carelessness.

If anyone in this comment section accuses me of still being mentally ill, condones the staffs actions against me, or even so much as insinuate my physical ailments arent real youre getting blocked im already in a pissy mood because of this.

I cant even call them because they wont care.

I hate that hospital, my ring was my most prized possession.

Seeing the mild Ehlers-Danlos Syndrome symptoms he experiences is so so weird

I was adopted (unfortunately) at 6 and finally found my bio family at 21, now at 22 I live with one of them

I told him about clEDs1 and how he carries a part of the mutation but not the full TNXB deletion

My bio mother on the other hand received the clEDs1 diagnosis because she has CAH-X syndrome (we both saw different doctors so im not quite sure how this one worked but oh well)

I encouraged my family to get tested for my other comorbidities, and genetic testing to catch the TNXB haploinsufficeny (prob butchered that spelling but dw that one person yk who you are lol) in the sub will comment with more information about clEDs1, and TNXB haplo shout out to them! They research TNXB related disorders!)

But yeah im finding all of this rather interesting, lmk if anyone else with an autosmal recceisve subtype has the same or similar experience!

I have a really severe case of Classical-like Ehlers-Danlos Syndrome type 1, and deal with excruciating bone, muscle, and neuropathy on my skin and often other places

I also have a family history of addiction, a kinda moderate phobia of vomiting, inability to burp and vomit and a gj tube id rather not dislodge while puking

I just wanted to see if anyone has some indica dominant strain recommendation, I can sometime handle 50/50

Forgot to mention sativa makes me genuinely so anxious and paranoid, and I am an experienced stoner ive been smoking for 5 or 6 years now so high potency strains I can handle

I also have some recommendations of my own

Im very disabled and ill, she is 9 she follows me around everywhere and cries and barks when she cant see me or shes in her cage

I moved in with my uncle a week or so ago, and ever since then he said that she slept by my door the other night and when my uncle came home she greeted him then went back to my door

Her name is Karma, I love her just want to know if its possible dogs can love ppl this quickly?

Im so tired of people assuming I cant eat and then getting angry or upset at me because all I can eat is mainly "junk food"

Like its not my failt that those foods dissolve easy and are easier to drain out, I also get weird looks from people when I mention how I cant keep anything on my stomach longer than 20 minutes or it try (and fail cant burp or puke) to come up and sit in my esophagus and suffocate me

Ig to some people thats better than me draining, its weird how some people want me to sit and suffer ive literally had multiple people ask me what the "harm is for letting my food sit there for days"

I think the issue lies in the fact gastroparesis ≠ gastric failure

I have gastric failure, I will never regain the function of my stomach back due to the reason why it broke in the first place (clEDs), im not even a candidate for botox, gastric pacemaker, or gpoem bc of that fact

I eat and drain so I dont go insane from the hunger especially since I smoke weed for pain and nausea relief

I have Classical-like Ehlers-Danlos Syndrome type 1, this subtype is very very very very very very very very very very rare and known for GI failure more so than the 12 other subtypes including oi/eds overlap

I was wondering if anyone else has Ehlers-Danlos, and if so what type?

100% confident eds is the reason I cant burp

I made it out.

My "parents" will no longer be in my life, I did it i wish I could hug my younger self

Yes you heard me correctly, hospitals suck at allergen protocols. They usually fall short in terms of cross contamination or what I was unfortunately a victim of today- giving the wrong tray.

On the order list "gluten free" is bolded its listed as an allergy but I have celiac disease so its autoimmune

Ive been in the hospital for a week and packed snacks and doordash things

Worst part is im here bc im having trouble keeping my weight up after beinf unable to tolerate tube feeds they put me on TPN but ive always been a very hungry person

I eat some things by mouth but drain them out. So my intestines are already having a terrible time, and then to top it off i got served the wrong food and its going to cause my immune system to attack the healthy cells in my small intestine aka the place where I usually put my tube feeds.

So now im fucked²

The level of cross contamination avoidance with someone with celiac disease should be the exact same level of caution and care of someone trying not to cross contaminate someone with a peanut allergy

Its also airborne, if i breathe in flour and things in that realm ill get sick