Getting My Sister to Denver ACUTE

I'm starting this request for help on behalf of my very talented and intelligent, yet very sick sister. 

As of last week, she has been accepted into Denver Health's "ACUTE" eating disorders unit. They are the only medical based unit dedicated solely to complications related to eating disorders in the entire country.

For the first time since pre-existing illness clause was banned by insurance, she has commercial insurance that will actually cover what she needs. However, she's on disability and the out of pocket costs are incredibly high.

The plus side: The policy then kicks in at 100% and covers her needs until the end of the calendar year.

I probably know my sister better than anyone else on the planet. Due to a of childhood family chaos, I was her primary caretaker much of the time. I'm 7 years older than her and was in "mom" role while our mom was in school and working night shifts growing up. Our dad worked away out of state.

Honestly, Heather was weird from the beginning. She has always had gastrointestinal distress and selective & picky eating. Around the age of 4, she threatened her life when a change of schedule occured, disrupting her routine. She's always been a rules and routines person. She began solving division before she ever went to school. She said she could just "see" it. At age 18 or 19, she picked up an instrument for the first time and taught herself how to play it. She's been in a band for 10 years and still can't read music. She says she plays by heart? She has all of these talents but lives tortured by her own beautiful mind.

She's been in and out of eating disorder clinics across the US and Canada since 1996. While they forced a few pounds on her, most of the time she came home in a worse mental state.

I pretty much accepted my sister was going to die last fall. We discussed her wishes for her final arrangements, but the little stubborn figher in her convinced me to call a new program for adults with chronic eating disorders.

It's called "NEW FED TR" at The Center for Balanced Living in Columbus, OH. It was a 5-day family based program that I completed with her last December.

Now, I'd heard her come up with a lot of crazy ideas for getting help over the years, but something in her voice convinced me to call them last fall. After my first call with intake, even I knew it was different. They got it. I didn't know yet what they got, but they got my sister. I was confident for the first time in at least a decade, my sister was going to at least manage this disease and have some sort of quality of life. 

She started a GofundMe last winter so we could go. We raised just enough money to get her there, but nothing for the strongly recommended aftercare.

She's been on SSDI with Medicare & Medicaid for a few years. Before we got to OH, they recommended we get her in a PHP program for aftercare. During the week we were in OH, they began a negotiation with NC Medicaid to get her covered for their PHP so she could stay. The state denied her.

She still left with a sparkle in her eye.

NEW FED TR changed her spirit:  I know because I went with her. It was the first time in her twenty years of treatment that I understood what she was going through. During the week, we had repeated moments of our jaws dropping in tandem. All the crazy things my sister had said over the years, they were explaining to us from decades of brain imaging research. If this doesn't give you chills, she knew she was different back in the early 2000's and participated in the very brain studies that NEW FED TR created it's treatment model from!

I saw my sister's eyes sparkle over and over, "I told you!"  We laughed a lot; we cried a lot. We left with hope. 
 
Though she had already figured it out herself a few years ago, no one would listen to her. ..My sister is on the autism spectrum. Her eating disorder is "atypical" and she wasn't ever being treated for the right things. I had heard her say it's in her brain so many times, but I didn't know what she meant. She never really saw herself as fat like her peers in treatment. In OH, I finally got it.

Heather lived alone, 12 hours away from us. I didn't know what would happen when we drove separate ways, but we had hope. Unfortunately, that unraveled one month at a time and then one week at a time and then one day at a time.

She wasn't given any counseling, nutrition therapy, or PHP Ohio urged she would need. There weren't any Medicare-Medicaid providers who felt comfortable taking her because they didn't understand eating disorders, let alone when paired with sensory integration dysregulation.

For months and months, she would cry and text and say, "They won't take me either." She had case managers on both the medical and mental health side of her Medicaid who admitted they couldn't do much for her. They had her apply for single case agreements, personal care services, etc. All denied in the end. She even reached out to legal aid.

All the while, she has also been managing debilitating chronic pain. She's complained of pain for years, but in the last two years, these complaints became more troublesome than those about her eating.  She finally went to a chiropractor who did Xrays and explained she had Degenerative Disc/Join Disease & Osteoarthritis in her neck. She took the Xrays to her MD at the time, and he wouldn't even look at them. Like all the other "doctors", he said if her pain was real, it was nutrition related.

It wasn't until 8 mos after she left NEW FED that she got approval to see an MD out of town at Duke. Duke was the new lifeline. They said she had ANS dysregulation, Sensory Integration Dysregulation, Pelvic Floor Dysfunction, Bradycardia, and scanned her Xrays so she could get a local NP to order MRI's. Last month, she was diagnosed with Bradycardia, Right Branch Bundle Block, and told she is at high risk of refeeding disorder. Last week, her MRI report confirmed: DDD/DJD, osteoarthritis, herniated disc, and perinueral cysts. Sources of REAL PAIN.

She now has excellent health insurance. NEW FED TR will take her back. She doesn't live alone anymore. She has an amazing person in her life who is helping with caretaking day to day.

Before she can go back to NEW FED TR, she has to be medically stabilized. Denver ACUTE will accept her. This program provides all 1:1 services and can meet all of her needs until she is strong enough to step down to tackle the mental aspects of living with these problems for so long.

The treatment plan from Denver ACUTE will be incremental step down care over a period of several months. We already have all of the programs and providers lined up.

I told her to just get to Denver for now. We will figure out the money one step at a time.

I want to show you what my sister can do. This is what makes my sister come alive: MUSIC.

https://www.facebook.com/SelahDubb/videos/

She can hardly play music or do yoga or anything at her current state. I know what she is capable of but she's never been given the chance because during all of her treatments she has done, she's never been treated for the right thing.