is disability inevitable? feeling kind of down

Discussions of issues related to living with cavernous angiomas

is disability inevitable? feeling kind of down

Postby Mae » Mon Oct 11, 2010 5:48 pm

heidihi wrote:
Mae wrote:Congrats on your anniversary, and thanks for sharing your story. It is inspiring. After reading many of the posts, I have been rather down the last few days, thinking disability is inevitable. And if so, why should I go to the trouble of finishing my doctorate and hoping for a more challenging job if I do? Part of me knows that it is futile to think like that. None of us knows our destiny, medical or otherwise. But I am the worst-case-scenario type, a consummate worrier. I have decided to get another opinion.

Thanks for listening...wondering if any of you think this way and how you cope. :?
Mae

tell me more Mae, tell me your story.... It's probably here somewhere, if so point me there and then I'll get back to you~! Hang in there, I know how ur feeling...


Hi Heidihi I never tried this quotation process before so don't know if I got it right ... I also pasted this into a new topic
Thanks 4 the support. am typing with 1 finger today cuz i just cut my hand badly. :oops: i have been soooo lucky with my ca, but reading these posts reveals some really scary stuff and it seems like everybody is on disability. Is disability inevitable? I am working my tail off to get my doctorate :ugeek: plus working full-time, but wonder now, what is the point? Feeling kind of down, but then feel guilty about that feeling because I haven't experienced what most of you have. What right do I have to have feel sorry 4 myself or even worry? Maybe I just need a good kick in the pants. You can read my story @ http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
:( :( . Thanks Mae
Mae, CA right parietal lobe removed 12/17/10 @ Barrow. Cav mal found to have 3 distinct parts & to be heavily calcified-- called "brain rock" by surgeons.
http://angiomacommunity.org/forum/viewtopic.php?f=1&t=315
http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
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Re: is disability inevitable? Clarification

Postby Mae » Mon Oct 11, 2010 6:18 pm

Just to clarify---I sliced my finger by accident in the kitchen. I am feeling down, but it was NOT intentional. I am not that down. I didn't want you to worry.
Mae
Mae, CA right parietal lobe removed 12/17/10 @ Barrow. Cav mal found to have 3 distinct parts & to be heavily calcified-- called "brain rock" by surgeons.
http://angiomacommunity.org/forum/viewtopic.php?f=1&t=315
http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
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Re: is disability inevitable? feeling kind of down

Postby kirkmc » Mon Oct 11, 2010 6:44 pm

Disability is certainly not inevitable. I'm on partial disability, and I'm very happy to be so, and there are many people here on full disability. But all bleeds are different, and I know I had at least two major undocumented bleeds before I was diagnosed and I continued working, though each time I was pretty messed up for several months.
Two brainstem CAs in the pons. Big Bleed in July 2005, previous, undiagnosed bleeds in 1982 and 1987, and several smaller bleeds in the past few years. I live in a town in the French Alps. http://www.mcelhearn.com
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Re: is disability inevitable? feeling kind of down

Postby heidihi » Mon Oct 11, 2010 10:23 pm

Hi Mae,

LIfe is so short and we really don't know what tomorrow holds... I've come to realize this and even with my weakness I am still helping at Church lately. I've been saying that life has to go on and I still have to be a mom, wife and friend. Keeping myself buisy (of course carefully) is helping me to cope. Recently my husband and me realized that there's no way I am ready to go to work at this time. This was so hard for me but my health is so much more important. I NEED to do what's right for me and you need to do what's right for you. Enjoy your life, make every day count and try not to worry about inevitables- they are not going to go away, there will always be something. Hope you find some solace in this and it helps somehow. I do know how hard it is to not know or wait.
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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Re: is disability inevitable? feeling kind of down

Postby Mae » Tue Oct 12, 2010 12:28 am

Thank you for this knowledge and wisdom, and for that found in other posts. It helps.
Mae, CA right parietal lobe removed 12/17/10 @ Barrow. Cav mal found to have 3 distinct parts & to be heavily calcified-- called "brain rock" by surgeons.
http://angiomacommunity.org/forum/viewtopic.php?f=1&t=315
http://angiomacommunity.org/forum/viewtopic.php?f=16&t=48
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