Replies to This Discussion

ModeratorPermalink Reply by Swami Jim on January 15, 2012 at 5:09pm

You and I have been through 12 years! So you are a tough cookie too. And ruptured like myself. Already I like your style. Setbacks...I was in the fog for a long time, I could barely talk, read, write my own name. Quite honestly, I didn't care to live or die. I had next to nothing to live for. Now I'm back in the saddle, planning to help others. Take a look at the discussion; Manifest a Dream....I refuse failure. God bless you min, I'm right beside you!

Stay focused and healthy!

Jim

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Permalink Reply by min on January 16, 2012 at 2:06am

Hi Jim

We've been through 12 years and we're still going strong!I am so proud of us and especially you for not giving up. I like the way you put it "I refuse failure". That's my motto too. Except you summed it up beautifully in three words. I will check your discussion. God bless you too. We'll look forward and work towards our dreams. I promise you I will stay focused. Thank you for your response.

Pepper

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Permalink Reply by Allan on January 17, 2012 at 7:13pm

12 years.... That is the longest I've heard. It's been 3 years now since the burst. I felt the same way before the surgery.... I just hoped that it would be quick. Check in or out. I did not want to be a burden to anyone. At one point, I did not care to live or die but now realized I have a goal to accomplish. I have kids. They need me. I cannot die yet. I still have a use but have issues. I guess my question is how long can we go on with this inconveniences? More power to you all...

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ModeratorPermalink Reply by Swami Jim on January 17, 2012 at 7:22pm

Allen, some after affects never go away, but you must stay positive! From what we all have been through, it does take time! I know that. It took me a few years to really get back to where I need to go. And I still just getting closer and closer! Never give up for nothing. If ya gotta....Fight like a Scalded Dog! WOOOOF GRRRRRR!

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Permalink Reply by Allan on January 17, 2012 at 7:56pm

Fight like a Scalded Dog! WOOOOF GRRRRRR!
I like this advice.... I appreciate it so much..I will follow this and bite back..

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ModeratorPermalink Reply by Swami Jim on January 17, 2012 at 8:00pm

A pack of Scalded Dog! That's who we are!

GRRRRRRRRRRRRR WOOOOF!

Lead, follow, or get out of our way!

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Permalink Reply by brid browne on January 19, 2012 at 7:47am

Hi just though I would let you know I'm 20year avm free. I had a full out bleed and an 8hour opperation at 8years of age. I am now perfect,well dont think I was ever perfect but you know what I mean. Other then a pain in my head every now and then I have no side effect and on no medication. I know I am very lucky to be at this stage so keep fighting on and know that we are all here to help. I hope my story can help you alone.

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ModeratorPermalink Reply by Swami Jim on January 19, 2012 at 2:16pm

BINGO! That's the perfect attitude brid browne! Go with your self!

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ModeratorPermalink Reply by Trish on January 16, 2012 at 8:16am

Min, I applaud your being able to work alongside others for all of these years and do well. I was not able to do that after my bleed. I did try but I only lasted 2 weeks before I realized that I couldn't do it. I guess the most obvious "disability" I have as a result of the bleed is that I have a visual field cut on the left in both eyes (hemianopia). I'm also like you. Memories before my bleed are intact but my short term memory is weak. It's very random also. I never know what it is I'm going to remember and what I won't. My stamina certainly isn't what it used to be. I tire very easily. Like you said we have to work so much harder to do things that others do with ease. I also still get dizzy a lot of times. I'm very unstable walking. I get lost very easily even in my own neighborhood. I also am not able to drive. It is frustrating to realize that no one understands how difficult it is because we look perfectly fine on the outside. I guess for me the way I deal with it is to accept my limitations. I used to be very hard on myself when I couldn't do something or when I forgot something, or when I fell down or bump into something because I can't see it. Now I tend to laugh it off. It's just who I am now. No point in getting upset about it. It just is what it is and I can't change it. I'm much more forgiving of myself. When I get tired, I rest. Even if it's just sitting in a quite room. I don't push myself to keep up with everyone else. I just can't. I'll be intersted in seeing the responses you get.

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Permalink Reply by min on January 17, 2012 at 4:00pm

Sorry, what I meant by work includes school work too. Thank you for your kind words. I agree regarding the randomness. We can never predict what we'll remember and what we'll forget. It really does affect ones self-esteem. I do get disorientated too. It takes me more time to recognise places. On random days, I do forget my directions. I agree with what you say about accepting it. Except, I do push myself to keep up or better others most of the time. That is probably why I get frustrated. I do it because I have this need to prove to myself and others that I'm not really dumb. I just take a longer route. Will the visual cut in your eyes get better with time? I really do hope so!

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Permalink Reply by Allan on January 17, 2012 at 7:23pm

Thanks Trish for the message. I have the same issues. I am Electrical Engineer by trade before my position was terminated due to this ailment. The frustration is there where I cannot concentrate anymore in addition I am being really clumsy. I still cannnot complete what I start. Slowly I am loosing my technical capabilities. I take about 2 hr naps to relieve the stress.

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Permalink Reply by Leslye Wilson on January 16, 2012 at 1:44pm

Hi Min,
Wow..twelve years! That's a long haul. It's wonderful that you've stuck with your job for so long. I like how you continue to fight, and have a positive outlook on work and life.

It has been a little over three years since my AVM bleed. The disabilities or limitations that I experience are short-term memory weaknesses, minor speech problems, some intellectual limitations (people would ask me a question, and I think that I giving them the answer that I want or answering correctly, and they'll repeat the question, adding emphasis in a way that used to make me feel like some kind of idiot), and the peripheral vision in left eye being affected (my vision is slowly coming back, but the process have been so slow). I held on to my Receptionist job for almost two years, until my boss had given me a two month notice. It has been tough to get back into the swing of things because of my intellectual limitations and speech problems, but I was finally able to overcome it almost completely. For about seven months, I've been working in Sales Support for a national sign company. I keep a checklist for all of my tasks, just to make sure that I do not forget to complete them before the day is through. I attend school part time an still maintain a 4.5 GPA (I work twice as hard to maintain that these days).
I can understand nobody really understanding the difficulties and things that we go through as AVM Survivors. That was the case in my last job. They knew what happened, but did not completely understand. I assumption was "She's alive, she looks fine, therefore she must be fine." If I answered a question wrong, or said something (that did not completely made sense, or poor wording) I would get treated like an idiot, or some crazy person. At the time, I was tempted to yell: "HELLO! I have a brain injury!" Nowadays, I just let it roll off of my back. Being a part of this network has helped me, knowing that I am not alone.

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