My life has never been what you would call easy or simple. Every day was a struggle to even attempt to maintain normal vital signs. Doctors unfamiliar with Small Fiber Autonomic Polyneuropatny had no idea how to treat me. Over the last few years, I had been losing more and more mobility. At this point, I was wheelchair-bound. I needed one or two people to help me stand and pivot to transfer in and out of my wheelchair.,
Because of my gastroparesis, I could eat nothing by mouth and was on tube feeds 24/7. My body was starting to reject the tube feeds. The problem was, I had such a poor immune system that the doctors were reluctant to start me on TPN (IV nutrition). Because of the high sugar content in TPN, it is a breeding ground for infection. In addition to the … Find Out What Happens Next
People might think that living at an Assisted Living at the age of twenty-four would be miserable, but I was living in one of the Independent Living apartments, and it was like having my very own apartment. It was a huge improvement on the nursing home I’d been in for the six months prior. I had made friends with a man named Jeff, who was so cute and attractive and I was completely in love with him (but too scared to say anything), and I’d also made friends with a man named John. I had Lesley, a really kind and caring private aide, taking care of me every day, I was finishing my last few projects for school and then I would be graduating summa cum laude with a GPA of 3.98 from Elms College with a BA in writing.
Six months after my admission to Hell-crest Commons I was finally preparing to leave. I wasn’t going home. My relationship with my parents had changed completely. But I was preparing to leave. My feelings about the situation were very mixed, but I was very happy that I would no longer be living on a medically complex floor of a nursing home. No matter how nice and buddy-buddy Jillian the nurse practitioner at Hell-crest Commons had tried to become with me, I would never be comfortable with her. Not after everything she had put me through.
However on Monday, the day before my official discharge date, she found me in my room early in the morning and pulled me into her office.
“Can you transfer yourself into that crappy nursing home wheelchair and meet me in my office?” she had asked me.
My friend Laura came to pick me up and bring me to the synagogue (Shul) every Saturday for the Jewish Sabbath services and every Jewish holiday. When she came to pick me up the day after I’d been promised by Tanya, the social worker at Hell-Crest Commons the nursing home I’d been living at for almost six-month and Jillian my main provider at the nursing home they would figure something out, I was far from settled. I had been forced to take a break from calling places, and asking questions (because it was the weekend), but I was still busy making lists and doing more research, and worrying my brains out of my head. It was like my brain was a washing machine set on the highest spin cycle and someone had put too much laundry soap in it so it was spraying bubbles everywhere.
Tuesday morning a woman from a place called Adlib came up to my room to introduce herself to me and do an intake meeting. She was a sweetheart. Her job was to figure out if I was appropriate to get support serviced from Adlib one of which would be getting into an Assisted Living called Side By Side. For the last six months, I had been living on the intensive medical/Ventilator floor of Hell-crest Commons, but now they were kicking me out because although I had made a whole ton of progress in PT and OT I had made about as much progress as was humanly possible for me in my condition and my progress had plateaued. I had spent over two weeks trying to figure out where I was going next, now that I was going to be discharged from the nursing home, as my parents were refusing to … Find Out What Happens Next
My nerves were humming so loud that I could feel them vibrating from inside of me, or maybe that was just my heart that was still always beating too fast no matter what medication I took or how much IV fluid got infused into me.
After six months of living in a nursing home that I not-so-lovingly referred to as Hell-Crest Commons I was going to visit Side By Side Assisted Living and meet with one of the Nurse Managers there, whose name was Chrissy. Tanya the social worker had also arranged for my weekly scheduled visit with my mom to be that day as well. I had no idea what to even begin to expect.
Side By Side was just a few minutes from the nursing home and it was a big main building that was actually two houses combing together and then a bunch of other houses in … Find Out What Happens Next
My future was looking brighter than it had looked in a very long time. After six long months, I was getting ready to leave Hell-Crest Commons, the nursing home I’d been imprisoned in.
Side By Side, where my mom, Anna (the contact my friend Laura’s social worker friend had given me) and I were interviewing with Chrissy (the nurse manager)seemed like it would be the perfect fit for me. Especially because Anna was getting me the special PCA (personal care aides) services that MassHealth (Medicaid) provided to help take care of me and help me function and be more independent without needing to rely on my parents for everything.
My mom was discussing rent and pricing with Chrissy and Anna. Chrissy was saying that normally the apartment was $1000 a month, but because I didn’t eat anything she would bring it down to $900 a month. That didn’t seem quite … Find Out What Happens Next
My life hung in the balance as I waited for 24 hours to hear back from my mom about whether my dad was going to give the final yes or no verdict about whether or not I could be discharged to Side By Side Assisted Living and have some sort of future.
I needed my parents to pay for private duty CNA care, three hours a day for the next 2 to 4 weeks so that I could go the assisted living. Otherwise, Side by Side was completely off the table because I needed someone to be able to carry me up and down the four steps leading into my apartment in addition to helping me with all of my care. If my dad said no to this, I was going to end up in a homeless shelter. Because I am 100% dependent on IV fluids, tube feeds, oxygen … Find Out What Happens Next
During a three month long hospital stay for a flare up of my autoimmune-mediated small fiber autonomic polyneuropathy I went downhill so fast that I couldn’t even sit up on my own, I could barely lift my head off the pillow some days, let alone bear weight and transfer into my wheelchair, I went in ambulance for an hour-long ride down to Hillcrest Commons the nursing home/rehab that I was supposedly going to for a few weeks or months for intense rehab, so that I would get enough strength to function outside of a hospital or nursing home environment.
Hillcrest Commons is located in Pittsfield which is in the Berkshires (part of Western Massachusetts) so it’s a very beautiful location. It’s right on the border of upstate New York and it’s near the Vermont border as well.
About an hour earlier I had arrived at the only rehab/nursing home in the area that would take someone as medically fragile and medically complex as I am. The nursing home was called Hillcrest Commons, but I had started to call it Hell-crest Commons. From the moment I rolled in the door I knew I was in trouble, but when I med with the nurse practitioner that would be in charge of my case while I was there, her name was Jillian, I had full force alarm bells going off as loud as possible in my head. She basically told me that my disease wasn’t really as bad as I thought it was and that I didn’t need my tube feeding or my IV fluids. I knew this was wrong, I knew what the leading experts in the world on my disease had said about my treatment and I was … Find Out What Happens Next
