September 27, 2022 | By Angie Fitch
Introduction from the IAES Blog Team:
The staff at IAES is proud to share with you a poem written by an amazing AE warrior that has been battling AE since the Fall of 2020. Each one of us feel the emotions, the ups and downs and roller coaster like ride AE takes us on. Thank you, Angie, for so eloquently putting pen to paper the feelings we all share!
Good, bad, up, down, round and round.
I feel as though I’m on a merry-go-round.
Full of uncertainty if it will ever stop spinning; Full of frustration as I remain on my couch sitting.
I just want to live.
I just want to die.
I just want to do more than just survive.
I just want this nightmare to finally subside.
Convincing others and myself to remain positive and hopeful, when deep down inside I feel the opposite and woeful.
Confused, angry and sad is what I feel; But never reveal; All I can do is hope that I heal.
Why me, why now, why at all? The pity party sets in as I continue to fight and pray that I don’t give in.
The fatigue, the limitations, the pain and loss of ambition; The debilitating life that I have been given.
I will live; I will thrive; I will ultimately win and survive; This is what I tell myself; This is what I tell others as my pain remains undercover.
My strength then comes back; It’s going to be alright; it’s going to be okay; I will continue the fight day to day; I will keep the hope and learn to cope; I will continue my way up this slippery slope with hopes of support and love of some sort.
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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.
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International Autoimmune Encephalitis Society thank you❣️thank you for all of the support, information as well as an additional private group that we can all share in. Your hard work and dedication means the world to all of us🦓