fbpx

Tag: pain meds

A Trip to the Edge of Life

Living at Hell-Crest Commons was a nightmare. After a three-month-long hospital stay at my local hospital for a flare up of my autoimmune-mediated small fiber autonomic poly neuropathy (that was getting worse and worse every few months) I had gotten really deconditioned.

“You need a whole lot of PT and OT to get you back to a point where you can function at home and in the community,” the doctor and case manger both had explained to me months ago. My impression of the situation was that I was going to Hillcrest Commons for a few months for therapy and then going back home.

After three months at the nursing home, we had a big meeting and they dropped a bombshell on me. My parents weren’t going to let me come home. They didn’t want to take care of me anymore because they wanted their ffreedom. I was a burden … Find Out What Happens Next

{ Add a Comment }

Missing a Safety Net: De-nial Not Just a River Anymore

Myself getting prepared for a long day of testing at Mass General Hospital with my mom who is my safety net waiting in the car

My Safety Net

My safety net was what my whole life manageable.  My life was pretty much one big medical issue. Luckily I had two parents and two brothers to support me.  My safety net was made up of two people, my mom, and my dad. 

They didn’t always make the best decisions for me, in fact, sometimes their decisions messed things up for me really badly, but they loved me 100% unconditionally and always tried their hardest to make the best decisions for me.

It all started when I was eight and began dealing with muscle fatigue, then when I was ten I first got diagnosed with gastroparesis (a paralyzed stomach) and had to have emergency surgery to have 2.5 inches of dead bowel removed and then had to have an NJ tube placed.   

My NJ Tube

An NJ tube is a tube that goes in through your nose … Find Out What Happens Next

{ 2 Comments }