TW stuffs from littles ear pain

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My ear herts. Im not sure why. Ttink something to do wif our eardrum. Reminds me of wen mommy putted a ring in my ear but don’t know why she do that. We not hear good wif that ear. It is the left one. Me no lik be in pain. No see doctor until June fir it. Not good. Not wanna herts. Not feels good.

Littles

from Mimi

hi its mimi. i luv da kitty. he bes so cute. he luvs me so so much. he be so soft. he lik be petted.

Mimi

from Emmie TW exhaustion

TW fatigue and stuff

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I know we need to do work for our course, but we are just so so exhausted. I just wanna sleep and sleep. Don’t want to be tired. just don’t wanna do work today.

Emmie

from Enigma TW suicide

TW suicide

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Why do we keep trying to get doctors to listen to us? Why do we have to be in so much pain? Why do we keep trying? Just why?

Why does the insurance have to determine when and where we go to treatment? Want to be a bird and fly high into the sky and just…. Disappear!!!!!

No matter how much we advocate, we are still not in control of when or where we go for treatment. It doesn’t matter that we have lawyers involved. That doesn’t even seem to matter. We are trying so damn hard.

Enigma

Rayette Rucker

World Services for the Blind

Assistive technology instructor online trainee

Google Voice Number: (314) 637-9985

from Eliza TW trauma and sexual abuse

TW trauma

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Hi, it’s Eliza. I’m 14. I hate memories. I hate trauma. I hate that I have to remember all the things my father did to me. I hate feeling like I’m there again. The memories of being sold to all those men and having to unload my dad’s drug shipments that he got after I was raped repeatedly, over and over and over again, day after day. I hold so so many memories that the others don’t know about. Just don’t want to keep remembering this stuff.

Eliza 14

me wants choclate

me wants choclate but it makes our tummy hurt. me really really wants choclate!!!! not fair! why tumy hav to be hurting? why jus why?Lila

Trigger warning medical

TW medical . . . . . . . So, I spoke to Alsana today, and they do not take people with feeding tubes. They said if i got a feeding tube, I would need a higher level of care. I also spoke to Eating Recovery Center, and they said that they do feeding tubes on a short-term basis. So, basically, if I needed a feeding tube long-term because of gastroparesis, no place would accept me. So once again, we don’t fit into a box of criteria. So why even try to get into treatment? Also, Medicaid is coming up with a list of places they believe will meet my needs, and they are giving that to Meridian next week, so we don’t even get a choice in the places they choose. Everything just feels out of my control!!! Eating disorder programs don’t understand chronic illness, and I was even told by Alsana that in eating disorder treatment programs, you have to eat food, and if I went there, they would need a menu of foods from my GI team that I could eat, because i couldn’t have a tube during programming. The thing is, I can’t take the only motility med they prescribe which is Reglin. She also said that people on feeding tubes are just existing, not living. I’m half tempted to ask Megan to stop pursuing the eating disorder treatment. Ray

trigger warning medical update on us mentions cancer

TW Medical stuff mentions c*ncer. . . . . . . . . . . . . hello everyone,So, we went to what was supposed to be our dietitian appointment and an appointment with a physician assistant yesterday, and it ended up being an adventure. First off, we had the time for the appointment wrong. We thought it was at 2, but it was at 1. Got to love dissociation.So, we called Karen, and she said that her 2:00 patient might not show, so we took this opportunity to see if we could get ,the EKG done that the doctor in Chicago needed done. We got to the cardio floor only to realize that the hospital receptionist had given us ‘the wrong fax number to give our doctor in Chicago, so they never got the order. The person in registration at the hospital called my doctors office and got the order refaxed. We were so grateful to her. So, we got the EKG done, but when we called Karen back, she said she had to reschedule, so we never saw her.We then went to our follow-up appointment, and the ladz was really nice. The nurse we worked with also has two daughters with EDS and is in one of the Facebook groups we are in to!! This was really amazing!! We went to the secood appointment, and Chribbsy as she likes to be called, prescribed us some Omiprizole for acid reflux and some Zofran for We got some of the results of the scope we had done earlier, and we have an irregular Z-line which is caused by acid in the esophagus. The Omiprizole is supposed to help with the acid stuff. TW cancer mentioned. . . . . So we looked up what irregular z-line is, and we found that it can lead to Barrett’s esophagus and then possibly lead to esophageal cancer. This scared us a lot… We have to have repeat EGD’s every three years.
On another note, we were supposed to have therapy two weeks ago, but we had a doctor’s appointment so couldn’t make it.We had another one this past Friday as well, so Lily said she could meet on Saturday, so we were looking forward to that. She then texted us on Saturday to say she had a family engagement and couldn’t meet and asked if owe could meet on Tuesday. We had to say no, that we had a doctor’s appointment, so owe are meeting on Friday. We have our gastric emptying study on Februarz 5th, and hope to get the results back a few days after it. The meds will only be a Band-Aid solution as they won’t speed up the emptning of my stomach. We will see how it goes though. Sorry this is so long. Saphire is still struggling. She’s struggling with and flashbacks feeling so real, and with all this medical stuff going on, Emmie is having a hard time to. Thanks for reading, and sorry if this was triggering.Ray

email to Lily

Hi Lily,

We want to do therapy the right way. But is there really a “right” way to do therapy? We want to heal, but we also don’t want to put ourselves in an even worse place. we know we are not at the right level of care. I mean, an ED therapist couldn’t even work with us because we need a higher level of care. We don’t want to do things the wrong way, but is right now the right time to be processing trauma? I can barely think to even get this out on paper to try and explain some of our fears. We have no crisis plan if something were to go wrong. No matter which way you look at it, there is no place that will take us because we are to much of a liability. We just want to heal, but it seems the medical system and healthcare system is totally against us!!! Sorry for ranting..
Ray 

our new kitty!!

We gots our new kitty! He luvs us!! We luvs him. He be so cute!! He be cudly. He sleepd wif us last night!!! He be so warm!

Amber 5