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jojohope

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I am a young woman who had my first pontine stroke at 23 and my second at 31, and survived to tell my story. It is very rare to survive two strokes in the pons, and to survive requires the fight of a warrior. After my first stroke, I was diagnosed with a brainstem arteriovenous malformation (AVM). It is unclear how often an AVM will bleed. I've heard every eight years. The risk of bleeding climbs by 2% each year, and there is a 1% chance every year that it will bleed. I knew I would have a second stroke, the only problem was I didn't know when or where it would occur. My arteries are too small for the standard treatment of embolization, and an attempt to surgically remove it would kill me due to the location of my AVM. They performed stereotactic radiosurgery twice after my first stroke, which was obviously unsuccessful, and a third more aggressive attempt after my second stroke. A third stroke is guaranteed if the radiation does not work (yikes!). My body is not strong enough to survive a third attack; it would kill me. Brain cancer is also a possibility from the radiation. If this happens, there is nothing that can be done. I am married to a wonderfully supportive husband. Having a stroke is hard and has affected both of us in separate ways. We have had our challenges, but we love each other and would rather work on us than quit as many often do; it contradicts the wedding vow "til death do us part". Being 100% "normal" or being different in any way doesn't make us worthy or unworthy of love. My husband is my biggest fan. He still tells me, "good morning, beautiful". I also have an awesome buddy, Taz, that I could not do this without. He encourages me and is always in my corner, cheering me on. I have awesome friends that are always rooting me on, and my faithful dog, Lyla, who means the world to me. She is always loyal to me and is always laying next to my wheelchair. She wags her tail and smiles when she sees me, and has learned to come to my left side. She is always patient and there to love me when I need it. I would be lost without her. Since we decided to not have kids due to my condition, she is my child with fur. My second stroke was massive, and has affected me emotionally, physically, and mentally. It has left me in a wheelchair, unable to move my dominate right side much. I have no sense of balance. The left side of my face is paralyzed, and I am unable to blink my left eyelid. I have bouncing of both eyes (nystagmus) which causes movement of objects in my vision (oscillopsia). My voice is different, due to a portion of my vocal cords being paralyzed and my speech is hard to understand, and there is no feeling on my right side. I shaved my head, so I look totally different. I could go on and on about what is wrong with me, but what is right with me is my painting. This is my freedom. I used to be an avid runner, which was my outlet. Now I am unable to walk let alone run. Someone suggested painting abstract paintings. I had never painted before, and it turned out to be perfect fit for me. My love of creativity can be explored. I use my left hand to paint, and since the jerking and shaking on that side from the stroke does not matter in my paintings, I do not feel discouraged.

http://www.wetmtv.com/news/local/story/Disabled-Elmira-Woman-Paints-to-Help-Others/PlDFFrGd40GI8DW0wYDQQg.cspx

http://www.weny.com/News/local-news/strokes-of-hope-4-4-13

http://binghamton.ynn.com/content/top_stories/655237/the-power-of-love-and-a-painting/

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hey Joan :

 

welcome to best online support group & wonderful world of blogging. you are quite fighter & inspirational, also blessed to have wonderful family & friends by your side to come out of that tunnel.

 

Asha

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Welcome Joan. I'm sorry you have been through so much. You are truly an inspiration to those who have been through similar strokes. My prayers are with you in your recovery.

 

Julie

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Hello Joan, welcome. This is the best site you have found. No one judges you, and you can come and vent, if you want too, or tell us how your recovery is comming along. We are here to suppost you.

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