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

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

When you have Medicaid and an eating disorder

When you have Medicaid and an eating disorder, it is next to impossible to find treatment if treatment is not available in your state. What the people at Medicaid either don’t realize or don’t care about is that 20% of anorexics will die. My insurance company told me that sometimes people died because they don’t cover the services they need when I told them this fact. So I am taking things day by day keeping an eye on my heart rate as sometimes when I walk it goes as low as 46 or even 43 bpm which is not normal for someone who is walking around the store. I just pray every day that my body does not decide to give out before I can be helped to get the treatment I so desperately need. I go to my providers who are scrambling and telling me to go to each other with no result because no one knows what to do to fight the monster that is Medicaid. All I hear from the emergency room is either go out of state for treatment or stay home and die. What is this world coming to? All I know are money hungry insurance companies who don’t care about the person but all they care about is the profit and the money they will save by not paying for someone’s much needed treatment. Actually, they are spending more money on crisis stabilization programs that I keep going in and out of when it would be far cheaper for them to pay for the treatment I need that would also be the most effective. Instead, they are constantly telling me that I need this or that for their appeal process and so we have been waiting for over a year languishing and suffering because they want to find a lower cost medically necessary alternative. I find it interesting that there a denial letter says the services that we are requesting are a non-emergent when in the appeal itself it says if we do not get treatment I am at risk of death. How is that not emergent? And the person who reviews the appeal is a psychiatrist, but do they specialize in eating disorders? The short answer is no. They also say that we need to find treatment at a lower cost medically necessary alternative which by the way is breaking state and federal parity laws. They cannot impose a fail first policy meaning they cannot tell us that we need to complete treatment at a lower level of care and fail first before they will approve a higher level of care. They are hoping that by drawing out this appeals process, we will give up trying, and even though there are some days that yes, we want to do just that, we will not. I just hope our body can hold out. Also, they say if we need immediate treatment to go to the local emergency room, but that is a dangerous thing to say because the local emergency room knows nothing about eating disorder treatment and will give a liter of fluid in one hour which for someone with an eating disorder can kill them. I do not nor will I ever understand the logic of a government insurance, and I almost wonder if this insurance company that is run by the government isn’t put in place to continue ritualistic abuse whose goal was for the person to die which is exactly what will happen if we do not get treatment. Coincidence? I think not. The only thing I wanted for Christmas this year was to get into treatment, but that is not going to happen. At least I will be around people I love. We have a long battle ahead of us, and we just hope that physically we can hold out to see it through.

Ray

Dietitian appointment

Hi everyone,

So we had our dietitian appointment on Friday, and it was good news but not good news. They said their program was not going to be enough to help me that we needed an inpatient level of care and they would document that. We have a place that has excepted us, but Medicaid refuses to pay. I don’t know what we are going to do if we can’t get them to pay. We are essentially without a dietitian and an eating disorder therapist for now. Not sure what’s next, but this road is so long and confusing and scary.

Ray

Intake with eating disorders therapist

So, we had an intake with an eating disorder therapist at the weight loss and wellness center. Apparently they have an eating disorder’s team. I’m supposed to see her every two weeks. I am seeing the dietitian there this coming Friday, and after that the clinical team will discuss the case to see what needs to be done from here. The therapist did say that inpatient would be ideal right now considering everything we have going on. Will keep you posted.

Ray