I had my fourth embo on August 3...my final one...yes I am cured of this avm; I was in the hopsital some extra days as I some minor problems with hearing and now vision; the hearing was two fold; hearing loss (which is back to normal because of steroids) and vision which oh well, I need new glasses..some facial nerve damage....I cannot and will not complain as if I had not had this surgery it was reiterated to me that I would have died so once again I am so grateful to God, my doctors, my best friend, and all of you. Whether you realize or not I was in such denial to join this site and yet it was and will always continue to be a blessing to me. I learned volumes from you... While I may not need any procedures as my AVM is resolved I am not going anywhere and wil. continue to be on all of your journeys as you have all been on mine. Special love goes out to Tony....we will celebrate down under someday soon....Grace who inspires me and who I love and LeeAnne, I love you so much my sister...you will see good things come from Dr. R...
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....
Again I am filled with humble gratitude for your friendship, your support, your loyalty your prayers...I sit with tears in my eyes as again I will always keep you all in prayer and be here for you forever. We will find a cure for these AVMs and those in the tristate area Spring 2011 please remember I will do a fundraiser to raise money for research so someday we will say AVMs...they are something of the past.
Peace and love,
Mare