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So we are going to see our dietitian this morning. We are just hoping she has some advice or anything really because we are down to 89 pounds. We are honestly scared… Don’t want them to force us back into eating disorder treatment as this is a physical medical issue. Eating disorders don’t cause gastroparesis this severe. Hoping for the best and some good news or advice. Hoping she doesn’t just say there is nothing she can do and we have to wait to see the GI doctor on the 20th.
Ray
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 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 weight and food and medical our psych appointment
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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
new kitty!!
We are getting a new ESA kitty. His name is Eden. He is soooo cute!!! We are in California now, but we have just ordered all his kitty things!! Can’t wait to meet you again Eden!!
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 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
Frustrations with the healthcare system
Trigger warning eating disorder and I don’t know what else
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So, I spoke to my care coordinator, Courtney, at the insurance company, and she said that as long as the state isn’t forcing them to pay for anything, they’re not going to. She said residential treatment will not be covered no matter what we do. She said I was going to have to find intensive outpatient or partial hospitalization program options. I told her that the closest one was two hours away, and she said, “well we provide transportation. “ I told her that that was not the point, but partial hospitalization was not clinically recommended by anyone on my team. I said to her, “do things have to get really bad before insurance will do anything? Or are they just going to let me die? I know my providers won’t allow that to happen, but still, I still wonder this. Why does the insurance have to govern the treatment we get when they are not even the professionals on my team? It doesn’t make sense. I don’t want to have to get down to 89 or even 85 pounds and have to do this continuous loop From inpatient directly back to outpatient, skipping three levels of care, but I really don’t see that we have a choice. As long as money hungry people are in charge of making the decisions about what they will cover for my healthcare, then I feel powerless. This is beyond my insurance company at this point. It is at the state level. I don’t understand why the laws in Illinois aren’t protecting us from this cruelty and depravity. It doesn’t make sense! Not only that, but my physical health problems are being blamed on my mental health. Eating disorders don’t cause hypermobile joints or scoliosis or any of the other symptoms of idiots that I have which doctors refuse to diagnose because insurance again won’t cover genetic testing. Insurance won’t cover my prosthetics to be replaced which I’ve had for 10 years. I don’t understand what I have to do to get the healthcare I deserve as a US citizen. I feel like I’m fighting for everything I’m asking for. I fought to have us recognized as a system. We have been fighting insurance for over two years at this point. Can’t even go to the doctor for a physical health issue without them saying that I need to get the Mental Health treated first before they can help with the other stuff. I probably sound like I’m complaining too much. I should be grateful that I’m alive.
Ray
