I received this note from a member of AVMSurvivors.org, part of the Ben's Friends patient support networks for rare diseases, after she finished her final treatment and has been pronounced healthy. These notes are the main reason I help build the patient networks. They're so beautiful. Although it's long, it's touching and I thought I would pass it on to you..
"Some things I learned through this experience/blessing:
1. Never give up hope in your treatment; never let one dr. decide your future...there are too many out there; medicine is a practice and lets face it, AVMs are so rare we are making futures in treatment.
2. Allow those who want to help, help. It may heal is wound in something in their life and for those who don't want to help don't be upset realize they may not now how to deal with the situation wherein it is their issue not yours and just let it go....negativity is way way too heavy....
3. Breathe....life is too short to sweat the small stuff...when it all gets crazy and you are not sure what to do ....breathe, meditate...create some me space. Silence is a great healer and you will learn to hear much in silence....
4. Pray...to God..He listens. He is on this journey with you too and loves you and its okay if you get angry with him..He already knows it; and if you are afraid, its okay..He will always put people in our lives just when we need them...trust me and just be open to it.
5 Fight insurance companies...I did....nothing is set in stone and we must fight this rare conditoin and deserve the best care avaible....your life is priceless.
6. Cry...best soul cleanser in the world...and if someone sees you...its okay....ask them to join you....shoulders were made for crying on..
7. Know in your heart who your best friend is and let them in...don't think you are a bother or don't want to know....they do and you are not a bother to them...they are on the journey with you....they want to be .
8. Don't make excuses if you don't feel well...if you don't feel well physically, mentally, spiritually emotionally....its okay take time fo ryourself...if some don' understand, again, their issue not yours. Remember God gave us two ears one to let negative comments in another out...
9. Challenges are blessings...yes we all have challenges in life but we need to learn from them, its why they are there and will enrich your life even more...be open to it.....and while it can be difficult at times...you will see it is a blessing.
10. LOVE LOVE LOVE....love with the most deepest passion you can....people, God, your work, most importantly love yourself! Hug all....recycles human energy! You are a gift to the world and a survivor! Love is the best healer....God is love. Love with your whole heart and soul...fills you with peace, peace, peace...."