I am complicated. I have Lupus, Chiari 1 Malformation, severe Gastroparesis, POTs, Hoshimotos, and a really bad spine with five tarlov cysts at S1-2. Throughout the past couple of years having been brushed off with Chiari in 2010 by a neurologist and finally figuring out in 2015 what was wrong the damage was done. I had brain surgery in April 2016. Vagus nerve damage and a brain bleed as well. I have the best neurosurgeon in the world. one of the only doctors that truly does have compassion. I have been in and out of hospitals like the majority of you. The lack of compassion is mind blowing.
I am almost 54 years old. Two days ago I went for a lumbar puncture. I got a call from a nurse and she was as sweet as she could be. She walked me through what would take place. The problem wasn’t the nurses. The problem was the doctor. He didn’t care I had a feeding tube. I had to miraculously find a way to lay on my stomach.
Just last week I went through two tube changes. One where they cut the stoma to fit a larger tube because they refused to order my tube that I had. So I had a tender belly already. I had to prop my 83 pound self up using my weak arms and legs during the procedure. Then the impatient doctor didn’t wait for the numbing meds to take affect. He proceeded even after I told him I was in pain multiple times. Seriously? I shook in pain. I cried in silence. More trauma totally unnecessary because one man chose not to have compassion.
This is just one story. I have too many stories. I could fill a book. Our hospitals lack compassion. Sadly it is becoming the norm.
