poetry from Ciara 13

Paralyzed by fear,
don’t move, 
don’t speak
don’t scream.
Let them do what they must
can’t escape so i escape into my mind
and then,
split, someone else comes to take my place.
he breaks me and molds me to what he wants me to be
i’m just laying there, alone.
is that all I’m worth?
to be used and abused?
Am I unlovable?

 

 

Thanks for reading.
Ciara 13.

memories

I hate memories of the past. I just hate them!!! Ugh!!!

Amanda 12

FROM MYRA TW TRAUMA

TW TRAUMA AND MEMORIES.
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HI EVERYONE,
I HATE TRAUMA MEMORIES. THEY REALLY SUCK. I HATE THINKING ABOUT ALL OF IT. THE MEMORIES ARE TO GRAPHIC TO TALK ABOUT ON HERE. I JUST FEEL ALONE WITH THEM, AND IT IS NOT FUN. IS ANYONE AROUND? COULD REALLY USE SOME SUPPORT.
MYRA

FROM MYRA TW FOOD

TW FOOD

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HI, IT’S MYRA. I WISH I COULD EAT SOLID FOOD. I MISS IT SO MUCH. I MISS CHOCOLATE AND CHIPS AND ICE CREAM. IT JUST MAKES US SO SICK TO EAT IT. IT’S NOT FAIR. WHY DOES OUR BODY HAVE TO DO THIS TO US? WHY CAN’T WE JUST BE NORMAL? WHY DOES IT HAVE TO BE SO SO HARD? I’M STRUGGLING TO SEE HOW OUR BODY DOING THIS IS NOT LIKE THE TRAUMA WE WENT THROUGH. MY HEART HURTS FOR EMMIE AND HER PARTS TO. THEY ARE STRUGGLING SO MUCH WITH ALL OF THIS. DOES ANYONE HAVE ANY ADVICE?

MYRA

scared TW medical and trauma and death

TW trauma and medical and deatht
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Please read carefully, from a concerned Ray and system,
We are freaking out about the Corona Virus, and not only that, but we are worried about the state of us medically. We are 88 pounds now, and we can’t get enough fluids or calories. We emailed our POTS specialist yesterday, and he is going to send our PCP some recommendations for IV fluids as a standing order or even home IV infusions. Yesterday, our heart rate got up to 141, even after taking our heart rate medication, and our blood pressure was 80/50. We are damn scared. We don’t want to die!! Our dietitian isn’t going to our GI appointment with us after all. She didn’t see the point. She said it wouldn’t be feasible. We spoke to the social worker for our course and to our instructor, and they are verry supportive and understanding. They said they wouldn’t let our DVR counselor take us out of the class. If we didn’t have that course, we would drive ourselves crazy with to much time on our hands thinking about everyting going on right now for us. During the day, our heart rate goes into the low 40’s at times. It’s scary, but the local hospital won’t do anything. We just have to wait to see the GI doctor. And now that we might be needing a feeding tube, Meridian has agreed that they will pay for the out-of-state treatment that we have been trying to get them to pay for for the past 3 years, but here’s the problem with that now. If we get the feeding tube, no residential place, or even River Oaks for that matter, will accept us because they don’t have the medical oversight to manage a J-tube. So, we are so close, but yet so so far away. We don’t want to die!! This is medical neglect. This is bringing up a lot of trauma stuff for us as well. We are trying our hardest to just hang on and not be swept away by all our emotions. We know we need help, but the medical system is failing us, big time!! Not sure how much more of it we can take, both physically, or mentally. We have no backup crisis plan, because no one knows what to do, and no place will take us because we are to complex and considered a liability. We can’t do standard eating disorder treatment programs, because we have an almost completely paralyzed stomach, so we are just told to wait and see GI. We were given a list of foods to avoid and ones to try by our dietitian, but the list is in print, and she just said it’s about trial and error. We were only able to finish half of an 8 ounce shake in her office on Monday. She could tell we were struggling, and she said she didn’t see an eating disorder when she looked at us. She also saw the results of our gastric emptying study, and she said an eating disorder wouldn’t cause results that severe. Doctors don’t know enough about this condition, and there is not enough research being done on it. We are desperate for some kind of hope. 
We also found out that our worker that comes 4 days of the week can no longer work for us, so it’s back to not knowing who will come the next day except for Tuesdays. Ugh!!
Ray et al

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

Spoke to our primary care providers office yesterday trigger warning medical

Trigger warning medical not sure……So, yesterday, we called our primary care providers office and asked her for help. We asked if they could place an NJ tube, but she said that she could not do that. She had said we had to wait for the G.I. consult on March 20. She wants us to drink three protein shakes per day diluted with water to make them easier to swallow as well as eating three full-size meals per day. This is nearly impossible. We can barely manage some days to eat some applesauce and some chicken broth. Why can’t we just get help? I also found out why I haven’t been seeing my dietitian. My primary care provider never sent in a referral to her when I switched providers. So I have not seen her since January 7. I called her and asked her for her advice yesterday, and I asked her if she could prescribe a feeding tube, and she said if it was eating disorder related, maybe. She told me to also wait for the G.I. consult. I am just getting so frustrated at this point. I just need nutrition! Dammit!Ray

Brave

Trigger warning: trauma

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We are all so brave. We survived so so much. We are all shining lights for the rest of the world. Our scars make us beautiful. They tell our story, but they don’t define where we came from. Our scars make us beautiful.

Ray

Trigger warning weight and food and medical our psych appointment

Trigger warning

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So, yesterday, we had our psychiatrist nurse practitioner appointment. We were talking to her and discussing our situation. We told her there were no more medications they could try for motility issues. She said it is super frustrating to feel like you’re not even in control of your own body. I told her that yes this is exactly how we all felt. I told her we wished they would just put in a feeding tube already because we are so exhausted from all of this. Even drinking water makes us feel nauseous. We don’t really know what to do. We are already down to 92 pounds, and our dietitian said that if we got below 90 we would have to go back to inpatient for eating disorders. None of the other people on our team is recommending that. They said that with the other medical issues we have going on that if we had to go into a psych hospital, it would have to be one with medical facilities attached, and we don’t have many of those. None they will except us anyway. We are trying our best and doing what we can, but we don’t know if it will be enough. Our gastric emptying study isn’t until February 5.

Ray

Just because you’re on vacation TW trauma

Trigger warning: trauma 

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Just because we’re on vacation, doesn’t mean our trauma stuff stops. We shared a link that someone else on Facebook shared, and it was about child abuse, spacifically that a 13-ear-old girl had died giving birth to her father’s child. I posted about it to spread awareness. Of child abuse, and someone commented on the post telling me to take a break, that i was on vacation, and if she were on vacation, she wouldn’t post about such topics. Ugh!!! This person always likes to start drama no matter what i post. So frustrating. And other proof that your problems don’t just disappear when you’re on vacation, my heart rate was 143 when i got out of the shower even though i took my med before i got in the shower. So just because you’re on vacation, doesn’t mean your problems go away. Enough said. Rant over.

Dilia