What do you want others to know about EHE?
“The mental battle with EHE is monumental! The watching and waiting and the not knowing what it’s going to do in my body! That new pain in my ribs….could it be EHE? That weird reaction I had to something…could that be caused by EHE? I have one more week until I get scanned again….what will they find? Is it growing faster? And the list goes on and on! I’m learning to live in the moment and not dwell on the future, but that is hard. On the positive side, EHE has taught me that every day, every moment is precious! Life is precious! Embrace today and soak it all up! I’m not great at it, but I’m getting better. While I still have pain every day, all day, and I don’t want to give this dreadful disease credit for anything, ironically, I have to say thank you EHE for teaching me that every day is full of blessings and immeasurable goodness…the sound of my son’s voice saying “good morning, mom!”, a goodnight kiss from my husband, a call from my college student to say hello, feeling the warm breeze on my face on a sunny day, count it all as blessing because life is sweet and tomorrow isn’t promised! Just Live!!!”
~ Tonja Pektas