frum Raina TW me tinks me no kno

TW stuf? me not kno wat to putt
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me no lik dis nite. me no want da bad dreems. me no wanna go back der me hate dem bad peeples. no wanna go back der agin!!!!!!! it be so reel!!! not wanna tink abowt it!!! sumone hug me? me wants a mommy!!! me want a blanky!!! me want my dolly, but me no hav one!!!!! me no wanna be skard!!! me no lik the dark!!!
Raina 4

dietitian, psych APN and doctor?

So, today, we have a day full of appointments. We are talking to our psych APN at noon, then we see our dietitian at one, then we see our primary care provider at 2:20 PM as a follow-up from the ER visit we had on Thursday. Going to be a very busy day indeed. I wish we could get some answers, because our treatment team is scrambling to come up with a stable treatment plan that will work on an outpatient basis when they know we need residential care. Wish us luck.

Ray

from Ray ER and depression and eating disorder?

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I don’t believe my low electrolytes the other night were because of our eating disorder. We have not used laxatives in approximately one month. The paramedics gave us 1 L of fluid in half an hour. Then they took our blood. We contacted the international Society for the study of trauma and dissociation, and they didn’t have any ideas for us either. Heard from our attorney yesterday that even with her closing argument, she did not think she could convince the hearing officer to force insurance to pay for our treatment. We cannot go back to Linden Oaks, we just cannot!!! They didn’t except us for who we were. They didn’t let us fully participate in art therapy because it did not fit their standard mold of how things should be. We could not talk about why we struggled with meals, so really, no real healing took place. We just wish there were something someone could do to help us. Just feels like we are trying to climb a brick wall with slippery wet stones and quicksand beneath our feet. We are trying so hard so so very hard. I just don’t know. I don’t know what else to say. For context, we had to go to the ER on Thursday afternoon and we were there for seven hours. They had to give potassium and magnesium through an IV. The paramedics gave us 1 L of fluids in half an hour and then when we got to the ER they took our blood, so no wonder our electrolytes are out of whack! The potassium going into the IV burned a lot. We could not take potassium orally as the oral tablets make us sick. Wish we didn’t have state-based insurances or that our issues weren’t so complex that we don’t fit into a nice neat little box and no one knows what to do with us. Wish we weren’t so broken!

Ray

trauma and depression

Trigger warning: depression and trauma
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Oh how I wish I could help Lacey. I know she struggling so so much. I just wish I could take away her pain. I wish I could take her out of the memories and flashbacks and take away the feelings. I wish I could help her want to live. She started out by protecting me, but now I am protecting her. How is that possible? I don’t know. I just know so many of us are in so much pain. I’m trying to hold things together as best I can.
Ray

struggling TW from Lacey

TW trauma and sadness
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im not ok. i hate memories. i hate flashbacks. im back there again. i dont wanna feel. i wanna be safe. i hate this. hate being so sad. just feels like a black hole. thoughts in my mind so bleak and dark… just wanna feel numb.. hate this time of year. it still feels like 2005. can hear my grandparents yelling and screaming.
Lacey 13

trigger warning: medical stuff and still more waiting

Trigger warning: medical stuff and eating disordert
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So today, we saw a different nurse practitioner as our primary care doctor is on vacation until Monday. We don’t know what we are going to do from now on because my primary care provider was seeing me once a month until the residential treatment got approved, so now I guess they are going to talk and figure it out. I also think the nurse practitioner is going to refer me to a geneticist to get tested for Ehlers-Danlos syndrome but she believes I most likely have. I also have to see the ENT again because we have ear infections in both ears. This is not good as ear infections in the past have caused our eardrum to rupture which the left one already is. We are very fatigued and in a lot of pain both because of EDS and body memories. I hope my team can figure something out. I’m hoping that I can go to the geneticist and maybe get some answers. They might need an echocardiogram before they can get it approved, but not sure yet. Think we are going to go to sleep for a while, and hopefully when we wake up, we will be in less pain. Doesn’t help that we are on our period.
Ray

Going on vacation and possibly moving? What?

So, in December, and for New Year’s, we are going to California to visit our friend Synica. Her dad has frequent flyer miles that he is allowing us to use to be able to fly there. They have four units or apartment like places that her grandfather owns, and in six or eight months, two of them will be remodeled, so Synica and I can share a living space! When we go there in December, Synica said we could walk around disney. She is completely supportive of us and wishes we could get out of Illinois to. I know California has a lot more options as far as treatment and their medical program is better than Illinois. Can’t wait to get a much-needed vacation in the sunshine. The weather in California is supposed to be really awesome! In other good news the department of vocational rehab services has agreed to pay for me to get online assistive technology certifications. These classes will only take 10 weeks to complete, and after that, I could potential he get a job and get off of SSI and Medicaid once I worked my way up. Plus, the schooling would give me something else to focus on other than insurance. Our Littles are excited because Synica has a ton of toys including Barbies! Yay!Ray and Little’s

Is it ok?

What more can we do to get the treatment we need? What more can we do that we haven’t already done? Is it ok that we’re struggling with food and stuff and trauma right now? Is it ok or understandable that we aren’t making a lot of progress? Just feeling so defeated…
Ray