Hi Awesome,
It is important to find the right doctors. I know you are waiting for your doctors, but sometimes it is important to get other opinions on your own. If your doctors are talking to UCLA, then they should be talking to Doctor Martin. He is very familiar with AVM. One of thing I did was send my films to Dr. Spetzler at the Barrow Nueroscience in Phoenix. He will review your films and give you feedback In 48 hours.
I will keep you in my prayers.
Awesome possum, I like that,Happy Halloween, oops, missed it by thisâŚmuch. Oh well, the story of my life. Well at least for the last almost 10 years now. My rupture happened when I was 40 and enjoying the time of my life, which was always. I worked a lot, ALOT but still found time to spend quality time with the wife and family. Very active and loved sports. That all came to a screeching halt that December morning. Spent 2 years where I couldnât do anything. Wonât bore you with all the medical details but it is still in my brain and still active, so like you, wake up wondering, is today the day, or go to bed at night thinking will I wake up in the morning, may be why I donât sleep much or because I donât want to miss anything. My baby girl is getting married in December and my Son and his wife are having our first Grandchild in January. I think Iâm too young for this but my memory was messed up somehow so I still think itâs 2004, even wake up sometimes thinking Iâm late for work, but havenât been able to since the incident. My wife calls it an accident. I say, I didnât slip and and rupture the AVM so it wasnât an accident. Keep having fun, we never know when the last day will be because of the AVM or because the big guy upstairs decides itâs time to go, so live life to its fullest. If people have problem with you, whoâs fault is that. Thatâs right, theirs. You be YOU and let them be whoever it is they think it is they want to be. Oh and if you get the chance to eat some opossum, try it, itâs pretty good.
Awesome, you are awesome and everything youâre feeling is real, valid and there is no shame in that. The guilt you feel for having negative emotions is no doubt helpful at times when you need to fight but itâs poisonous when you are punishing yourself for experiencing the rainbow of emotions the AVM rollercoaster entails. Let whatever feelings come up happen, allow sadness, grief, anger, resentment - they all have a justified place after everything youâve endured. Take comfort in the knowledge that the ride wonât always be horrible twists and turns, some will be enjoyment, gratefulness, joy and occasionally the rollercoaster will stop to reload and take stock of new thoughts. Go with it. And just be kind to yourself through it - you sound pretty darn amazing .x.
Yep, riding that every day too.
'We're all in this together' and what you describe I (we all) can relate too. I've found for me that to accept that the lows come around, to try and offset them with emotional highs. My kids, friends, wife have had to put up with a lot but without them, things would be very difficult.
So, your new life is normal, everything before was different, that's what makes yo special!
wishing you luck on your 'ride of life' - we're in the cars behind you - just turn and look!
Thank you for sharing your feelings:) I really can relate to almost every feeling you have. You explane it so well. Its veeery hard to live with all this emotions. I get very tired of feeling sorry for myself, I dont want to, but I do. Its hard to accept that my life is going to be like this. Very hard. I cry every day.
I have 2 beautiful kids, but cant go anywhere with them alone, without their father, a painattack can come at any time. Its soo frustrating.
And when people ask: âwhere do you workâ? Hate that question. Sometimes I just say I wont talk about it, cause I get so tired of trying to explane. Its almost like its the most important thing in life, that you have job.
Anyway, I think its very smart to write all this emtions down, and try to âget it outâ. Maybe it will help a little bit:)
I have not found out have Im going to deal with this emotions, but some day it will get better:) for you too, sharing with us is a good start:)
I'm so glad that you are sharing your experience with us. I hope you realize that you are a unique individual and we share a common condition, and that's AVM. I understand the feelings and emotions you go through. The ups and downs, the anger, depression, impatience, the pain, the "why me?".... it is hard to understand for other people who don't have the condition, but we fully do. I hope you feel better soon with the new you!
I understand how you feel. I was 16 when I collapsed after doing my English project. I was even in a coma 3 days. When I woke up I couldn't say a word & i was crying the whole time. Before i collapsed, I was very active like you too. I was active in school, I had a job as a student for my pocket money & all of it gone just like that. I kinda could relate how you feel. I still feel the same even after a year since the collapsed. But yeah, some days are quite rough. Just fight those feelings, laugh all the way you'll be fine. Think about people who cares about you. May you get well soon! be happy always okay? :)
I was 24 when my brain bled and went through every emotion youâve listed, except I never allowed myself to grieve the loss of the person I was before it happened. It was a mistake. I built walls and tried to keep smiling for everyone I loved. I was too strong, but not for myself, for them. The problem was, that only kept me from dealing with any of those feelings right away. It kept people from understanding what was already impossible to understand.
Feel what you need to feel, when YOU need to feel it.