Amy Has NMO and needs your help

My name is Amy Blair. I am a Registered Nurse and have spent the last 22 years at the bedside taking care of patients. I was recently diagnosed with NMO (neuritis mylities opticus) It is a rare demylinating autoimmune disorder. I spent most of December seeing specialist in Seattle, physicians and the emergency department, and north star for out patient infusions. The 16th of November I awoke to blurry vision in my right eye that progressed to complete blindness in my right eye over a course of 3 days. I am currently still blind in my right eye and there are no guarantees my vision will return even partially. I was able to leave Sweadish after a 9 day hospitalization on the 23rd of December and spend Christmas with my family. While I was there I recieved 5 rounds of PLEX(plasma exchange). I will soon be starting an immunosuppressive medication I will inject monthly. Since most people my self included do not know much about NMO I am going to try to explain it and provide a resource link if you are more interested. NMO was once thought to be part of the multiple sclerosis process but it was discovered to be a separate disorder since it does not respond to MS treatment. NMO is when your immune system has decided to destroy the mylan sheath that covers you optic never and spinal column. While there is no cure for this demylanating autoimmune disorder the goal for treatment is to prevent future attacks.

There are no warning signs when an attack is going to occur, and there is no way to determine what will be affected or for how long. This disorder is so unpredictable that I could be fine and go to sleep and wake up blind in both eyes or even some form of paralysis. We do not know if it would last days,weeks,months, years or be permanent with each attack. That is why preventing future attacks is the only treatment besides during an acute attack treatment is high dose steroids and plasma exchange.

It is very difficult and humbling for me to ask for help. I have always been the one to try to fix things, make things happen, and help when ever and with whatever I could. So for me to admit that this is something I can not fix or change is a very hard thing for me to accept. I am unable to work right, hopefully my body will plateau soon and I will have a starting point and know what capabilities I have available to me. I plan to return to nursing work of some sort as soon as I can. Unfortunately not working does not pay the bills or put food in the fridge. I am finally admitting I need help. Reaching out for help is very humbling it makes me sad I have to. Especially when I know times are difficult for everyone. I understand if you can not donate, if you could please share my story, I am grateful for any help I get from anyone. GuthreyJackson researchfoundation ://www.google.com/url?sa=t&source=web&rct=j&url=https://guthyjacksonfoundation.org/&ved=2ahUKEwiwzdb8n6L1AhV_IDQIHVG3A0QQFnoECBQQAQ&usg=AOvVaw1xHiaXK-xTmxbR6-8OreFc

Thank you

Amy