Where do you find support?
Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed over time? Where did you find "your people"?
I really haven't found much at all. Anywhere. Even the medical community
I've only seen the doctor twice in several years. Since my PM doctor did my pump refill steps wrong which overdosed me with enough fentanyl to kill a small town and that not an exaggeration basically I've been black listed. Thy treat me like it was my fault
! I will never ever accept any zero responsibility for their actions other than being there. I went from a fentanyl pump to nothing. Nobody will help with pain management. I've been left to my own devices...
Thani you for asking., wow, Jodi, that is not okay. Did you consult a lawyer to hold the doctor responsible and get some help from either the doctor or the hopital or state medical board to clear any false negative information from your file? - Warmly, Donna (Team Member)
Online and with NY neurologist.
My faith in God and His Word.
My Family
