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

caseworker leaving TW maybe? food

TW just in case food…

Hi everyone,
So our caseworker Sarah is leaving her job. She is going to be a care-coordinator for Meridian. This makes us very very sad. We will miss her. We also got hooked up with another person from Healthy Jacksonville. They’re going to try and get us a nurse during the afternoon to monitor our vitals, but there was a big emphasis on meals. The lady asked me how much weight i needed to gain, and then proceeded to talk about BMI, and I told her that BMI was aload of crap. I told her it didn’t determine a person’s health. I guess now they’re going to motitor how much we’re eating… They don’t understand that there are other physical issues going on besides the eating disorder. This is all so complicated. 
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

treatment…. never happening…. trigger swear word

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So, I called a few places to plead my case and to ask if they had financial assistance, and told them we had a state based medical program, and you know what they said? They said that since we had and qualified for state insurance programs, we didn’t qualify for their financial assistance program even though our insurance didn’t cover their program. What a load of crap!!! So because of my economic status, we can’t get treatment, because we’re not privelleged enough to be upper-class citizens of America. Ugh!! Damn it!!!

Ray

HFS final ruling

So, HFS issued its final ruling and we received the 20 page letter today. They said that the insurance company did not have to pay for the treatment we needed and our request was denied. They also said that it did not find that what we were requesting was within their jurisdiction. They said it was more a grievance that we were saying that our insurance would not find an alternative treatment plan. So now, we have to first try appealing to the circuit clerk court in Morgan County, and if that doesn’t work, we take it to the district court, and then, if that doesn’t work, we go to the supreme court. So we are looking at another year maybe more before we can get the treatment we need. For now, we are focusing on school. We are getting a new Windows laptop from the Illinois assistive technology program next Wednesday we have no choice but to keep going. We are not going to give up even though some days that is what we want to do. We will fight as hard as we can. They won’t take us down without a fight!

Ray

the evaluation

Hi everyone,Hope everyone is doing well!!

Ray

So today, as we speak right now, we are sitting on a train on the way to Chicago to the psychogolical evaluation. We are so excited to get this done. So excited to finally meet Megan!! After all these nine months, we finally get to meet!!! Yay!!!

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

hopeful update about the appeal

So got an email from Megan yesterday, and it said.. they will be sending a draft of their appeal letter to their supervisor and finalizing it, and then they will send us a copy. God, i hope this appeal goes through and we finally get treatment.. Should know something by Monday or Tuesday if they got the appeal and then the hearing has to be scheduled with the state. That could take a few months, but hope not!! we just need a break!! i hope against all hopes and odds that we will finally get the help we need!! 

Ray