Thursday, September 3, 2015

August Update



It took until the first week of August to get Hopkins to verify that my insurance was now in effect. Now that the insurance was in line I expected it would be soon that I would be admitted (at least I hoped it was!)

I learned that they would not be able to give me more than 24 hours notice of when a spot opened up, and they also didn’t want to tell me where I was on the wait list. They kept giving me the answer of “it will be soon.” So I decided to pack up my life and get ready to literally drop everything and run.

I got the phone call around 10 a.m. on August 20th. As soon as I saw the number come up on my phone I knew it was Hopkins. They asked if I could be there the next morning and I said, “you bet!” I called my Mom and then had a rush of overwhelming, “Omg where do I start!?!?” I then peacefully reminded myself I already had 90% of my life packed and ready to go.  I finished up all the last minute packing and was ready to go.
Everyone’s reaction when I told them I was going was “yay, that’s so exciting, hooray!” I had one person tell me “don’t be afraid, you’re doing the right thing.” That was probably the best response I got that day. As much as I had longed for it, I knew it wasn’t going to be easy and I was so overwhelmed and had so much anxiety about the unknowns….would I wind up on a feeding tube? How long would I be there? What would treatment involve? Would it work, would my body respond?

I was admitted on August 21st for inpatient treatment and I was in for a real eye opener. The program was MUCH MUCH different from what the doctors made it out to be.  Upon arrival I learned that it would be like being in prison. This program is truly geared toward breaking any and every behavior that could possibly be linked to an eating disorder. Everyone is given the same food, they will NOT accommodate any diet needs or preferences (aka vegetarian, gluten free, etc) You must eat any and all food put in front of you in 45 minutes or else you are taken to an isolation room where you must finish the food.  The list of table rules was pages long. You can only cut certain foods, only certain ways, they tell you the order in which you have to eat foods, and it goes on and on.
Any rules you break will get you penalized and then you lose privileges. You can only have water at meal times and two other designated times during the day. You can only use the bathroom at designated times and a staff member watches you to ensure you are not purging. During the hours of 8 a.m. – 10 p.m. you are not allowed in your room. You must stay in the common area and participate in a rigorous schedule of activities throughout the day, that involve you sitting on your butt and not moving the whole time. Any form of movement or stretching is absolutely prohibited. When you sit both feet have to be on the floor, if you lift your heels it’s considered “exercise and an attempt to burn calories.” This schedule left no time to rest. In the chronically fatigued state I was in, this seemed impossible! You can only shower between 10 p.m. and 8 a.m. and you can only do laundry during those times. They confiscated my yoga and meditation books to read as they were “exercise materials.”

Upon explaining to the doctors that I’m here for a different reason, they said “we recognize that but everything in this program is universal. No exceptions are made for anyone.” Everyone must follow the same protocol and all rules are universal. I was beyond frustrated trying to explain to the doctors that my body is not digesting solid food at this point, and hasn’t been for over a year! They just kept saying, “everyone has to follow protocol, no exceptions.” I really did not think that shocking my system by stuffing it with solid foods and diary that it no longer knew how to digest would help me, I had tried it before and it just made the pain SO much worse.

My first meal didn’t go so well, as they sat a bowl of spicy raw peppers, raw onions, and vegetables doused in a spicy hot sauce in front of me. Two bites in I was in such pain and it was burning as I tried to swallow it. I was one meal in and already broke one of the rules! But I COULD NOT finish it.

My Mom wanted to take me home. Upon learning all this she kept saying, “that’s what people with eating disorders need but you don’t have an eating disorder.” She said she would take me home right then and there but I felt like this was my last hope and I had to try because I have no other options. Just going back home and returning to what I was doing was NOT getting me any better. I had already recognized and accepted that. So I wanted to at least give it a chance. It was overwhelming, I was EXHAUSTED, I had no idea how my body would handle trying to stuff solid food in me when my GI system wasn’t working as it was!

I wanted to curl up and cry that night. But I told myself I would try it for the first few days and see how it went. The day I arrived on the floor I would be staying on I met Ashley, before I was given any of these details about the program or talked to any nurse or doctor. Without Ashley, I may have left that day. She and I clicked immediately and she sat with my Mom a good portion of the day while I was with the doctors and comforted my Mom that I would be ok. We learned how similar we are right off the bat. Both dancers, yogi’s, both have a love for musical theatre and showtunes and so many other things in common. We have leaned on each other’s shoulders, held each other’s hand, and remind each other every day that we will get through this together. 
It has not been easy, but I am not giving up! 




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