August 11, 2021 | By Shadazah (Daisy) Brown

The staff at IAES is excited to present the fourth in the blog series by a mighty AE Warrior in her ongoing quest to get all of herself back! Previous posts in Daisy’s journey are linked below:

Part 1: https://autoimmune-encephalitis.org/post/?highlight=Shadazah%20Brown%20

Part 2: https://autoimmune-encephalitis.org/my-continued-story-about-having-autoimmune-encephalitis-2/?highlight=Shadazah%20Brown%20

Part 3: https://autoimmune-encephalitis.org/daisys-ongoing-journey/

Being in and out of various hospitals has become second nature to me. The hospitals and staff are like my second home and family in many ways. Between getting weekly infusions and having issues with high and low blood glucose levels due to AE has me in various hospitals all the time. I had surgery last year to put an arteriovenous (AV) fistula in my arm. The surgery and recovery process were difficult.  The twenty staples used to secure the fistula and the discomfort took at long time to heal from and then to work properly. It is now used for my weekly plasmapheresis infusions! My AV fistula and I are like close dependent friends!!!

I am starting to understand what things I can and cannot do and am trying my best to remain positive. Some days are better than others, but I have found that when I feel a bad day coming or feel down, I can listen to music, write, and talk to new and old friends. I have met many wonderful new people while on this road to getting better and many old friends from my childhood call and check in on me often. My new and old friends are like sisters and brothers to me, and it is wonderful to have them to talk to.

Sometimes I do feel sad or feel like my 20’s is flying by, and I am only able to watch and not actually participate. Sometimes AE makes you feel mad or heartbroken. Sometimes AE is difficult for those around you, and they come and go from your life. But each morning when I open my eyes and wake up to another new day and new possibilities, I feel blessed.

I am learning to have patience with this brain disease. Each one of us with AE is different and we all go thru different stages. I am learning to manage ‘me’ and I am determined to get all of ‘me’ back!!

Your generous Donations allow IAES to continue our important work and save lives! 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.