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Tag: Small Fiber Autonomic Polyneuropathy

Suicidal Ideation, A New Safety Net, and Action Planning

Jeff, the man of my dreams (although, at that point, I hadn’t told him how I felt about him), was waiting for me at my spot near the fireplace when I got off the elevator and turned the corner into the dining room in the main building of Side By Side Assisted Living.  Lesley, my private duty aide, parked me right next to him.  He had a big impish grin on his face, but when he saw I’d been crying, his grin melted away and he looked concerned.

Jeff with his impish grin

“What happened Becca?” He asked me.

“I’m not allowed to say,” I told him, “But I’m not allowed to have any men in my apartment anymore.”

“Who said that?” he asked me.  “Your parents?  They shelter you way too much, you know I-”

“It wasn’t my parents it was Eve (the owner of Side By Side),” I … Find Out What Happens Next

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Fresh Apple Lotion and Getting Molested by My Best Friend

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.

John and Jeff would come over to my house in … Find Out What Happens Next

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Telling Fragile Secrets Post Acute Sex Trauma

I hadn’t even been living on my own for a full week, and already, disaster had struck.  About five days earlier I had been discharged from the nursing home that I not-so-lovingly referred to as Hell-Crest Commons where I had been held prisoner for six months, I had then moved into the Independent Living section of Side By Side Assisted Living in Pittsfield. While I had been loving, living at Side By Side, earlier that morning I’d been molested by a man that I thought I could trust.  I’d been molested by a man that I thought was my friend.

Not knowing what to do, I had called the main building, and Marina, the overnight staff had picked up and was on her way over from the main building to my apartment to help me out.

I just sat there in my chair waiting for her.

My heart was still … Find Out What Happens Next

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Side By Side With a Handsome Stranger

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.

“Sure,” I had told her, assuming she was just … Find Out What Happens Next

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(The)First Aid in the First Apartment

In December of 2015, I was finally discharged from Hell-Crest Commons, the nursing home that I’d been living in for the last six months, and I had moved into the Independent Living Section of Side By Side Assisted Living where I would be getting something called PCA care which basically meant people that I chose myself, and that I was the boss of and would train would be coming into my apartment at Side By Side to help take care of me. because it would be 2 to 4 weeks before the PCA care kicked into effect my parents had agreed to pay out-of-pocket for a private duty aide until then.

Lesley, the CNA who was going to be my private duty aide, was right on time to meet Christy, my mom, and me, over at my apartment on the evening of the Tuesday I moved in.  She drove a … Find Out What Happens Next

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A Sweetheart, A Horny Old Man, and a Set Up For Disaster

When I got over to the main building of Side By Side Assisted Living on my first morning officially living there, I had Lesley, my private duty aide (that would be working with me for the 2 to 4 weeks before my Medicaid provided PCA hours kicked in) wheel me into the dining room where the fireplace I’d fallen in love with on my tour a few days earlier was.  That woman who had asked me if I was in school the other day was sitting in one of the chairs by the fireplace with her knitting.  Lesley moved the empty chair that was next to her so that she could park my wheelchair in its spot.

“You can’t rearrange the furniture,” the woman who was knitting told Lesley.

“I just want to move this chair a little bit, so Becca can sit by the fireplace.”  Explained Lesley.

“Well she’s … Find Out What Happens Next

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Meeting the Love of My Life, Another Nursing Home Parolee

For the two days after I spoke with John, a very tall big man who walked with a serpent cane, all I could think about was meeting Jeff officially.  John had informed me that he was really good at fixing computers and was in charge of the internet and computer system at Side By Side Assisted Living the place where I now lived despite the fact that I was only 24 years old. John had noticed the internet was down in my apartment and offered to fix it. We had a long conversation where he somehow picked up from me that I had a major crush on Jeff.

“Jeff and I go way back,” Jonh told me. “He’s amazing with computers himself. How about I bring him with me when I come over to fix your internet, and then the three of us can just hang out?” he suggested.

“That … Find Out What Happens Next

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Will We Ever Be More Than Just Friends?

I was hanging out in the dining room of Side By Side Assisted Living which had been my new home for several days now since I moved out of that awful nursing home that I referred to only half-jokingly as Hell-Crest Commons. Although I’d only been at Side By Side a few days I’d already commandeered myself my only little spot by the fake fireplace that actually emanated heat. It was the perfect spot for finishing up finals for my BA in Writing from Elms College.

Everyone else was eating dinner, but because I have gastroparesis and global dysmotility I am unable to eat by mouth and instead am fed via a tube that goes through a hole in my abdominal wall into the middle part of my intestines called my Jejunum. Because my intestines are affected as well I have to run my tube feed at a really … Find Out What Happens Next

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Being a Professional Patient is Hard Work

When you have any sort of severe life-threatening chronic illness, there is a terrible feeling of being at the mercy of the medical system.  If your doctor is in a bad mood it could be the end of your life. That is not an exaggeration.

I suffer from a disease called Small Fiber Autonomic Polyneuropathy, which is a very rare condition that most doctors have never even heard of, because of that I often get denied the proper treatment even though I know what the right thing to do is. The doctors don’t like to admit they don’t know something so they just plow forward with their ideas and I’m the one that gets hurt or sicker or almost dies (not an exaggeration, I’ve lost count of how many times I’ve almost died due to doctors who don’t know about my illness deciding they know more than me and going … Find Out What Happens Next

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Welcome to Hell-Crest Commons

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.

Skilled Nursing and Rehabilitation | Hillcrest Commons

I tried to talk to the paramedic, that was sitting in the back … Find Out What Happens Next

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