going to California

Hello everybody,

So today we are going to California to visit a friend. So so excited!!! Yay!! Can’t wait!! Our flight leaves at 7:20 this morning!! Yay!! Have to get up in about 45 minutes to get ready to leave. So an early morning. We are all packed and ready to go. We are taking our MacBook Air with us for editing videos that we will be recording there. So so excited!

Ray

from Lilianna food TW

Trigger warning: foodt
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hi everyone, i hate food, it causes me so much pain. i hate it i hate it. i hate being in so much pain physically. i hate our achy joints. i feel like my body is punnishing me for doing what im supposed to, which is eat. ugh!!!
Lilianna

from Miranda

Hi, it’s Miranda. I’m 16. I don’t like being in pain. i hate it so so much. pain makes me feel sick. ugh!!!! why do i have to b in pain? 

Miranda

chronic pain is my companion Trigger warning

chronic pain and medical stuff trigger warning:

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chronic pain and fatigue is my constant companion. I retain urine, it hurts when I eat, I constantly dislocate my shoulders, ribs, and fingers; my hands and feet are constantly cold; if I stand to long, my legs hurt because of the blood pulling; my jaw hurts after eating or chewing; I just want to be normal, but chronic pain is my companion. Brain fog is always an issue. I just feel so alone.

I had to cancel therapy yesterday because of the fatigue. I also woke up yesterday with a dislocated rib and shoulder which I had to put back in. I knew it was going to be one of those days. I hated to cancel therapy, but it was necessary. Thanks for reading.

Ray

from Lilianna a teen part TW

Trigger warning: trauma and PTSD

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Hi its Lilianna. im 13. i hate trauma. i hate remembering. i hate flashbacks. i know we need to weigh more. i know we are to thin. i dont know how to help with stuff. i am just not sure how to stay out of the memories. 

Lilianna

eating issues and medical stuff TW

Trigger warning: eating and digestive issues and chronic pain and medical stufft
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Hello everyone,
so we are really struggling with eating because of pain from eating because the food just sits there and doesn’t move for a while. Also been struggling with heart rate and blood pressure issues. I do think this is related to EDS (Ehlers’ Danlos Syndrome). All alters as far as i know have agreed to try with eating, but the physical stuff is making it really hard. We haven’t used laxatives in a few months which is good, but now we are finding it hard to even try a lot with eating because of the physical pain. The fatigue is a lot to handle. Heart rate the other day went from 82 to 132 from laying to standing. I do understand that there are mental health things going on, but there are also physical things going on as well which complicate the mental health stuff. I don’t even know where i was going with all this, except to say that we are very frustrated. The Reglin isn’t working anymore either. Ugh!! Blood pressure was 89/46 the other morning. Our new worker is recovering from anorexia, and she doesn’t understand all the physical stuff we have going on, so when she asks us if we’re hungry, and we say no, she thinks it’s because of the eating disorder, but it’ really because we know how much pain eating causes us. I wanted to be honest about this with people and hope you understand that there is more to this eating issue than just an eating disorder. We’re just really complex patients. Hoping the new PCP can help figure some of this out. She is referring us for genetic testing. I’m just at a complete loss.
Ray

getting referred for EDs?

My new PCP is finally referring me to a geneticist for EDS!!!! Yay!!!! So excited that this is finally happening!!! She asked me why no one had referred us before. We told her about our mom having joint issues and the fact that we were born early because her membranes ruptured early. That’s a sign of EDS when combined with the other issues with the joints and the skin. Finally, someone gets it!!!!!

Ray