In the past eleven months I have faced the devastating reality of what struggling with this disease for so long can do to ones body, mind, and overall life more than I ever thought I would. I entered the ER on January 3rd of this year. Upon my arrival, I had planned to receive fluids to hydrate me and give me the strength to get on a plane to California the following day to enter inpatient treatment for my eating disorder. I had no idea that that night would change my life in the way that it has. As every routine visit to the ER comes with my labs were drawn and reviewed. In less than 24 hours I had become extremely unstable, to the point where the doctor no longer found it safe for me to travel, and he admitted me to the medical floor of the hospital right away. I thought that this would be a temporary stay, but with time came more news that it would take longer for me to stabilize than I had thought. My plans to go to treatment were put on hold. My life was about to change drastically and I really still had no idea at all. After some time in that hospital with no psychiatric care, I began to deteriorate more. My boyfriend, his family, and my own family saw me as defiant when I refused some of the specific care that was being offered to me by the under informed doctors at this hospital. I fought the system and tried to stay alive as I watched my close friends and family leave my side as they were convinced I was choosing to die when I wouldn’t listen to the professionals. My heart broke as I felt more and more alone amidst all of the turmoil and chaos. I received a blessing when a friend came to help me transfer to another hospital in the Saint Louis area that was more equipped to help with both the medical and psychiatric issues that are a part of my struggles. Had this not occurred I might not still be alive. Upon arriving to that hospital, I was admitted to the medical floor once again. I was given the first round of "bad" and unexpected news. My eating disorder has caused severe damage to not only my body, but also my heart, something that the doctors at my first hospital had failed to even acknowledge or look into. I was in the early stages of heart failure and I faced the realities of refeeding syndrome as well as life threateningly low blood sugars. I was placed on an all-liquid diet to ensure that I was reintroduced to nourishment in the safest way possible and to regulate my very unstable blood sugars. This was a slow process and my doctors reminded me everyday that, “slow and steady wins the race.” Little did I know just how slow I was going to need to accept this process was going to be. After a month in the hospital I was cleared to make a direct transfer to the Eating Disorders Unit at Princeton Hospital in Princeton, NJ. It was proposed that the safest way to do the transfer would ultimately be to have a medical transport arranged, but that unfortunately was not financially possible. This would require roughly $50,000 that was not at all covered by insurance, and to be completely honest I don’t know many people with that kind of money lying around. With the doctors reluctant blessing I was allowed to take a direct flight with a travel companion to New Jersey only if I were the make it a direct transfer to the EDU. I will never forget the fear in the attending psychiartists voice when she warned me not to get on that plane. I knew it wasn’t safe, but I knew that I had to do it. I had to find the strength to get on that plane and to survive until I got to the EDU. I had high hopes that this would be the beginning of my treatment that I had so desperately hoped for, but unfortunately that wasn't the case. Looking back, there was a huge part of me deep down that knew that I was risking my life getting on that plane that day, but I also knew in many ways that if I did not take that risk I would risk dying in that hospital in STL. I arrived in New Jersey and went straight to the EDU. Upon my admission, they drew labs and started the process of admitting me. Within a couple of hours the nurses received my lab results. They showed a blood sugar in the teens and I was immediately met with intervention via oral and intravenous glucose. I was unfortunately deemed too unstable to stay on the EDU at this point. The flight was unfortunately too difficult for my fragile body to withstand. I was transferred to the telemetry floor. They began treating the medical aspects of my eating disorder complications right away as they were trained to do, but unfortunately, they had no idea how to manage or support my eating disorder and I began to lose strength once I was there, and within a couple of days I lost the capacity to stand up on my own. This was so scary for me, but I put my faith in God that he would take care of me. Being back in the medical portion of the hospital was difficult. Not having support around nutrition was hard and the doctors poured all of their time and effort into stabilizing my labs to get me back to the EDU where I so desperately needed to be. After a couple of days I started to struggle to swallow and soon after that I began losing all movement in my body. This was terrifying for me. I was alone and unable to tell my family that something was wrong. I can look back in my phone from the notes I used to type to the doctors because I was too weak to speak and feel the fear I felt. I became more and more unstable with time, I dropped a significant amount of weight, and one night I stopped breathing in my sleep and aspirated into my lungs. I had gotten pneumonia and had become septic. My heart was functioning around 15% and my liver was shutting down. I was intubated as I had become to weak to breathe on my own. My sister and dad got into the car and drove 12 straight hours to be with me that next morning. It was advised that I be transferred to UPENN ICU to be treated by doctors who specialized in what I was going to need treatment for. Medical transportation was arranged, and I was sent to the next phase of my process. After I was settled in at UPENN my family had to leave me. I remember saying goodbye to them that day thinking it would be the last time I would see them. I spent the next, lets call it two days, waiting to take my last breathe. I lied there not allowing myself to sleep. I repeated the same thing over and over again in my head trying to put the picture in my head of what the last thing I would want to see in my life was. Then, a miracle showed up by my side, my best friend from across the world. At this point things were as bad as they could get. I was no longer breathing on my own. I was no longer able to move at all. I was hardly able to keep nutrition in through even tube feeds. I needed a miracle, and thankfully over the next couple of weeks I would have a few. After a failed attempt to remove the ventilator, the doctors advised my family to have me undergo a tracheotomy. This would allow me to be more confortable and give me more time to regain strength to see if I could become strong enough to breathe on my own again. I was also going to receive a PEG tube during the procedure to give a more long-term solution to my lack of nutrition. After the surgery, I was sent to Good Shepard for Long Term Acute Rehab. I was there for a couple of months. During my time there things started looking up. My infections were clearing slowly, I was doing physical and occupational therapy three times a week and I was slowly getting stronger. Next, it was time to wean me off of the ventilator slowly. It took some time to get me to the point where I could trust my body to breathe for itself, but before long I did it. After that, it was time for me to learn to swallow and eat again on my own. After I got that back for myself it was time to transfer to ACUTE rehab. Unfortunately, my insurance days were up and the only option became for me to go to a SUB-ACUTE setting. This was not so good news, seeing as no one thought that this was the best option, but it had to be. It was arranged that I was to be transferred to a SUB-ACUTE rehab in New Jersey. The transition was difficult, and after about two weeks at the nursing home it was decided that they were unable to support me with the necessary care that I needed. I was transferred back to the medical portion of the hospital at Princeton. I was still struggling in a lot of ways to ambulate on my own, but I was finally stable enough to eat my meals on my own, although they were not nearly enough to help re-nourish my body, and receive nutrition through my tube overnight to keep my blood sugars stable. After a week on the medical floor the EDU physiatrist came and evaluated me to be transferred back to the unit. I was hesitant to believe that it could be real, after six months I was finally going to make it to the unit to receive the care for my eating disorder that I was so desperately looking for at the beginning of all of this. I was admitted back to the EDU officially on June 14th. My time on the EDU was a blessing. I am forever grateful for the amount of treatment that I received, after my insurance cut payments after my first three weeks there. I was able to overcome many obstacles that I did not imagine being able to overcome. I was able to stabilize my heart, labs, and nutrition. I began walking and became about 90% independent in my ambulation. I restored to 85% of my ideal body weight, and I was deemed eligible and ready for discharge. My discharge from the EDU was set for November 17th, 2017. My plan was made to go to outpatient after months of battling and failing to find a scholarship opportunity to go to residential level of care, the level of care that I desperately needed beyond a reason of doubt. I felt terrified by this idea. The one main thing that I was so terrified about was the lack of therapy that I had received and also the lack of aftercare planning that had occurred for me. The unfortunate reality was that I had achieved all of the milestones necessary for progressing out of the inpatient level of care, yet I had done very little if any work on what had gotten me to the life-threatening place of my eating disorder that had gotten me there in the first place. With a heavy heart, and a forced smile of confidence I walked out of the EDU as planned on my discharge date.
Fast-forwarding back to where I am currently at, I have been home for roughly three weeks now. I am not going to candy-coat it, I have struggled, as I anticipated I would. I know that I need more support, and I came home with full intentions of fighting for my recovery and following my treatment teams advice of pursuing further treatment. I have applied for four different kinds of scholarships and grants, with no success at all. I have called nearly every single treatment center in the United States on my own behalf, I have emailed people, I have refused to stop reaching out, and with every conversation that I have had with each and every treatment center there has been one closed door after another after I mention that I have Medicare. It is infuriating, frustrating, exhausting, and devastating. I have gotten excuse after excuse, even having one of the largest treatment centers in the country that claims to be the most capable of helping even the most hopeless eating disorder cases, claim that they were just too small to offer scholarship funding at this time, what a joke! Others have told me to pursue private insurance and check back with them. I will be completely honest, I have tried that route, but what they fail to also explain is that even in doing that, if Medicare remains your primary, as it will if you are on disability, they are still unable to bill your secondary insurance unless they are willing to first bill Medicare, which most are NOT. Lastly, the other response I have commonly heard is to pursue a private lender. The average cost of one month of residential treatment could cost roughly $50,000, and that is the MINIMUM recommended stay for residential level of care, that is not even factoring in the other levels of care that I mentioned above. I am going to just be completely honest in saying that I have thought about it, but when you really think about the reality is that in theory that might be a great idea, but I don’t know one loan company that would be willing to give someone with no income outside of disability a loan.
Where I am at currently is trying to reach out and share my story as much as I can. I do believe that by sharing my story a door will open. Maybe I will raise enough money to afford private insurance next year which will cost me an average of $350 a month with around a $6500 deductible, or maybe the “right” person will read my story and open their doors to their treatment center so that I can receive care. All I know is that I am not stopping until the answer is no longer, “no,” and it becomes a “yes.” My story is not over yet.
A huge thank you from the bottom of my heart to all of my friends and my family who have gotten me this far, and who continue to fight alongside of me.
- Lori Grem
- Nicholas Bernard
- Christine Cole
- Laura Benson
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more