dietitian today TW

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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

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

Got an EGD

So we went to the hospital for an upper endoscopy G.I., and then were admitted for observation for 23 hours. We were supposed to get a CT scan of the abdomen and pelvis with contrast, but insurance denied it first on an outpatient basis, and then when we were admitted to inpatient, they did the same thing saying we need an ultrasound first. The doctors confirmed that an ultrasound would not show what they needed it to show. They need to rule out superior mesenteric artery syndrome. They are pretty sure it is gastroparesis, but a gastric emptying study is needed to confirm this. My anorexia diagnosis was changed to avoidant restrictive food intake disorder ARFID. The nurses and techs were lovely and the doctors were really nice and understanding about my situation. They didn’t even flinch when we told them about the dissociative identity disorder and PTSD diagnoses. This hospital is by far the one that has treated us the best. They were just as frustrated by our insurance as we were. They said that the best bet is to get the gastric emptying study in two weeks. We are already severely underweight, but really nothing to do about that as it is hard for us to eat more than six or seven bites without getting full early, bloating, and feeling nauseous. POTS and Ehlers-Danlos syndrome were confirmed while we were there. I touched my thumb to my forearm on both sides, and the doctor said, “yes, that’s classic Ehlers-Danlos syndrome.” They already suspect gastroparesis. I hate stupid insurance. I hate that insurance dictates the medical care we receive.

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

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

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

Home from inpatient

We are home from inpatient. We are already struggling. Some others inside are already using behaviors. We contacted a residential treatment center who has worked with our insurance before, and when we told them that we were discharged straight back to outpatient with no one who specializes in eating disorders, they were completely flabbergasted. They said we never should’ve skipped three levels of care. We are going to be seeing a therapist who specializes in eating disorders online. We will take anything we can get at this point, because even she says we are still any vulnerable. With our health. We were only there for 2 1/2 weeks. We made a lot of art pieces while we were there. We liked the art therapy and the dance movement therapy, but we were not allowed to talk about why we were struggling with meals because it was trauma related. We were not allowed to be ourselves there. I guess we did get some benefits from it, but somethings obviously not right since we are still struggling.

Ray

Linden Oaks excepted

Linden Oaks excepted us! We are waiting on my insurance to hopefully do a single case agreement. We are still hoping this actually works. It is the only facility in our state that has excepted us.

Ray

WHAT ABOUT US?

QUESTIONS TO PONDER AND MY THOUGHTS: FROM ENIGMA

SOO, I’VE BEEN THINKING, WHAT ABOUT US WHO ARE UNDERWEIGHT AND SUFFERING MEDICALLY BUT WHO HAVE GOVERNMENT INSURANCE LIKE MEDICAID? LIKE WHEN THERE IS NOTHING IN THE STATE TO TREAT OUR EATING DISORDERS? WHAT DO WE DO THEN? THEY ALWAYS SAY THAT IT’S THE PEOPLE IN BIGGER BODIES THAT GET STIGMATIZED AND DISMISSED, BUT WHAT ABOUT THEE DOCTORS THAT DON’T WANT TO FIGHT OUR INSURANCE COMPANIES BECAUSE IT TAKES TO MUCH OF THEIR TIME? WHEN DO WE GET HELP? WHY DO WE HAVE TO BE TOL BY INSURANCE COMPANIES THAT THEY KNOW THE RISKS OF EATING DISORDERS, BUT THAT SOMETIMES PEOPLE JUST DIE BECAUSE THE SERVICES THEY NEED AREN’T COVERED? WHY DO WE HAVE TO SUFFER WITH LOW LAB VALUES BECAUSE THE INSURANCE COMPANY WANTS TO SAVE A FEW DOLLARS? WHAT ABOUT OUR LIVES? DON’T THEY MATTER? THE MEDICAL DIRECTORS WHO ARE MAKING THESE DECISIONS DON’T ACTUALLY GET TO MEET THE ONES WHO THEY ARE MAKING DECISIONS ABOUT. THEY JUST MAKE DECISIONS BASED ON WHAT THEY SEE ON PAPER. THEY MAKE A DECISION ABOUT COVERAGE FOR A MENTAL ILLNESS BASED ON PHYSICAL FINDINGS. IS ANYONE WILLING TO FIGHT FOR US, THE UNDERSERVED? OR, ARE WE TO “COMPLEX” FOR YOU TO EVEN TRY? WHO WILL TAKE THAT LEAP OF FAITH TO HELP US ON OUR RECOVERY JOURNEY? ALL WE ARE ASKING FOR IS HELP, AND I THOUGHT THAT WAS SUPPOSED OT BE OK. PEOPLE SAY TO NOT BE AFRAID TO ASK FOR HEP, BUT NOW THAT WE FINALLY ARE, WE’RE BEING TOLD WE ARE TO COMPLEX.

ENIGMA