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

appeal letter from HFS

So I got a letter in the mail from HFS saying I had an appeal on March 3rd at 10 AM and if I didn’t answer the phone, the appeal would be dismissed. Megan doesn’t know why we got this letter as the appeal they filed was with Morgan County, not with HFS. I swear if HFS screws this up, I could scream. I think I’ve found a place that will accept me even if we have to get a feeding tube. It’s called the Emily Program in Minnesota. They were very understanding about the gastroparesis. They have to talk to their clinical team to see if they can accommodate me. I really hope they can. So I’m talking with Megan today at 2, and hope we can get things figured out, because I’m thoroughly confused!!!

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

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

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 hearing results

So today we had the hearing. We didn’t get the results we were hoping for. Meridian tried to throw some off-the-wall legal crap to derail our plans, and it worked. My attorney’s have to do more research to try to combat their arguments. The treatment center also said that a PHP program will not benefit us that we need residential treatment. My entire treatment team is angry with them, and Medicaid has some ludicrous laws about paying for residential treatment. I guess only Illinois has these laws. We are going to use the parody law argument to hopefully help our case. I really hope that something happens, or eventually we will be going to the media.

Ray

a breakthrough!!!

so i have really good news!!! we’re very highly likely going to be going to be going to Aloria Health to go to treatment for the eating disorder. we’re filling out an application for Project Heal today and have already done the intake and hopx to hear back from Aloria today as to if we got in or not. Also, we get to keep our Social Security benefits and sece it’s not being paid for by insurance, there isn’t a limit on how long we get to stay there. i just have to go today to the indccpendent living center so someone can help us fill out the applicaity. Has anyone ever been to Aloria? What was your experience? So excited to start my recovery journey!!

Ray