March 22, 2023 | By Shadazah (Daisy) Brown
The staff at IAES is excited to present the sixth 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:
I am here! I am still fighting every day, and I sometimes feel this Autoimmune Encephalitis(AE) road to recovery is one rough ride! I suppose on many days and in many ways, I could be called Rough Rider Daisy!
This past year has certainly had its share of ups in downs along the road of my AE journey. I have had several relapses that have proved difficult emotionally, mentally, and physically. But I continue to ride this road with positivity!
I have been in and out of hospitals due to seizure activity and AV fistula issues. My seizures are usually preempted by what many of us call an aura. Many AE Warriors can relate to this phenomenon. They can come about quickly or slowly. Sometimes I try to calm my brain and thoughts if I feel an aura but sometimes, they come so quickly, and the seizures come so quickly I have no time or warning. The bottom line with all of this is ongoing anxiety and fear. You never really know when an aura and then a seizure is coming so this can cause fear and anxiety. Somedays I find it difficult to eat, sleep or do simple acts of daily living because of the anxiety. At times I can remember what was happening prior to a seizure and I can remember an aura and sometimes I cannot, but they are all scary.
Many of you may remember the video blog I did for IAES about a year ago about my AV fistula and how helpful having one has been for me. Overall, the fistula has been a godsend and made medication management like getting plasmapheresis much easier. As with most things in life, nothing is perfect, and I have had fistula issues requiring surgery during this past year.
AE can be a rough ride at times. The road can have difficult mountains to climb and beautiful valleys to see. Once again, I will persist and ride this rough road. I will be positive and be Rough Rider Daisy!
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.