Chronically Alive

I had been living in the Independent Living section of an Assisted Living Facility called Side By Side a little over a month when a woman named Rhonda called me.

Rhonda was my contact at Adlib who would be helping me with my Personal Care Attendant Hours awarded by Medicaid.   In Massachusetts, Medicaid is called MassHealth and the area that I live in uses a company called Adlib for the Personal Care Attendant (PCA) hours.

Rhonda called me to tell me that she wanted to set up a meeting to go over the awarded PCA hours, I was both excited and nervous.

Although I was only 24 years old I had multiple medical issues and disabilities. The assisted living I was living at was called Side By Side Assisted Living and while it was a pretty nice homey place to live it certainly had some oddball characters living and working … Find Out What Happens Next

Out of all my new friends I’d made since moving into Side by Side, Jeff topped the list. Jeff Harford was more than just friends with me, he was the man of my dreams. Jeff was the man I had met and secretly fallen in love with, when I moved into Side By Side Assisted Living from the nursing home my parents dumped me in right before my 24th birthday.

My parents basically did a dump and run, telling me I needed rehab and that I would go to the nursing home for a few weeks or months to get stronger before going home from the hospital I’d been trapped in for three months due to complications of my Small Fiber Autonomic Polyneuropathy. I agreed to go to Hillcrest Commons Nursing Home, and then a few weeks into my stay at the nursing home we had a family meeting where … Find Out What Happens Next

Once a week my mom came up to visit me at Side By Side, the Assisted Living that I had been living at ever since I left the nursing home. I had spent six months at the nursing home for rehab due to deconditioning from a hospital stay and a worsening of my disease processes. One of the diseases I had was called Small Fiber Autonomic Polyneuropathy and it was slowly killing me.

I missed my mom badly in between visits, but she refused to come more frequently saying she was busy and had work to do and it was a long drive. We did however talk on the phone faithfully, every day, and hearing the voice of my safety net in my ear was always reassuring to me.  One week in February when she was getting ready to leave I started vomiting for about 20 minutes straight with no … Find Out What Happens Next

In the middle of February 2016, I spent about a week in the hospital for a bowel obstruction due to my total digestive tract failure caused by my underlying condition, “Small Fiber Autonomic Polyneuropathy”. A few weeks after I got home from my hospital stay for the bowel obstruction I decided that I needed a way to make more money. 

One of my favorite things in the world was my build-a-bears. I didn’t really care that I was 25-years-old, I loved cuddling up with a teddy bear, dressing them in super cute outfits, coming up with personalities for them, making them talk to me, making them talk to each other, and even making them talk to my caregivers.  What I would do was I would order them unstuffed and then I would order polyfill weighted pellets and polyfill premium stuffing off Walmart.com and I would shave off the end of … Find Out What Happens Next

I woke up to the sound of her key in the lock. I opened one bleary heavy eye to glance at the time and then, when I realized it indeed was morning, opened the other.

“Hi Becca, Good morning,” Jackie one of my caregivers greeted me when she came into my bedroom the morning I was supposed to go with Jeff (my best friend and secret crush) to Umass Memorial Medical Center for his doctor’s appointment. 

I wiped the sands of sleep from my eyes, reached for the controller for my hospital bed, and sat the bed up a little.

Jackie switched off my Infinity tube feeding pump and it made a really loud beeping noise.  Then she flushed 30 ml of water through my J tube with a big syringe and handed me alcohol prep pads and a saline flush .  She also handed me a heparin flush to … Find Out What Happens Next