frum Nina 6

hi its nina. im 6. i hate all the bad pictures in my head. the noises. i dont wanna go there agin. i dont lik it. da pictures mak me sad and skard. i not lik them. i kno how to type but not how to spel good. im wake now cuz of bad dreems… no fun.Nina 6

reflections for this morning

So, these are some of my reflections for this morning as I sit here listening to music. 

God, are you there? I ask this question all the time. As I sit here thinking about all the chronic illnesses I’ve been dealt. I could be angry and resentful that God would let this happen to me, or I could see that he made me like this to help other people and to see that maybe he wants to use me to help others, because after all, my story does matter and i matter.

Why did I have to go through trauma and be diagnosed with DID? Well, I can tell you this, I have DID because it makes me stronger and each of my alters are a testament to that strength. They each are a piece of the puzzle that may at times seem complicated and hard to solve, but it is a beautiful masterpiece made in God’s incomprehensible beauty and wisdom. So, on the hard days when trauma and flashbacks are overtaking me, I remember that I am made in His image. He decides the plans for my life, and nothing happens without a reason, whether that be to teach me a lesson, or whether it be for me to gain more wisdom, there is a reason for everything. If you are going through a hard time, God wants you to know that he’s not finished with you yet. He has so much more planned for you, more than you will ever comprehend or know. Much love,

Ray

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

explaining to littles

How do I explain to my littles about chronic illness? How do I explain that it won’t ever go away or that we will always be in pain? How do I explain that I can’t make their pain go away? I’m just at a loss? And how will I explain when we have to get a feeding tube?

Ray

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

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

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

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