Living With Cavernous Angioma

Life 3 years out 3 kids

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Insomnia sucks, but it's given me the chance to catch up with what's up over here.  My small bleed and possible seizure have left me feeling isolated, contemplating gamma knife surgery, and still fighting intense migraines.  Sounds like I fit right in :)

Year 3 has also brought me the gift of knowing what caused this--my father's genetics.  I'm 33 years old and my kids are 11, 8, & 7.  The worry over what to do punches me in the gut.  I wonder how much LESS I would have done with the first 30 years of my life had I known.

While my brain may be all screwy and full of holes and blood, my mind is still so beautiful.  My Dad's mind amazed me when I was young too, and though he has not had bleeds, I wonder now if his CAs have shown him a different way of thinking.  I wonder what the CAs will do to his brain as he ages, what gives life to his newborn dementia?

In 3 years, 2 bleeds, 1 seizure, countless things wrong with my head, 1 overworked husband, 3 patient PB&J eating kids, 1 overworked mom, 1 kinda crazy-beautiful dad, 0 friends.  An ocean of tears, some physical pain, some emotional.

And here I am, still standing, working on my shoulder pain so much that my posture has brought me an inch taller.  Walking is still exhausting, but I'd crawl if it meant next time I could drive my kids where they wanted to go.  Because Mom is the one job that gives me purpose, even when I know I can't work another job, and maybe sometimes I'm so ill that I deserve a C- from the family.  I'll get a star, I know.

Things are way different than I imagined ever, but this last bleed/seizure is bringing me face-to-face with the new me, broken and fixed parts, healing and forever scarred.  I wanted to remind myself while I remind you all that it's all going to be okay, you'll learn so much.

problematic CA in L Thalamus, also 1 in L occipital lobe
I just noticed that you had mentioned 0 friends in your post.  I just wanted to make sure you knew that you have LOTS of friends within this site and I'm going to guess that your family are your friends, too.  I quite often think that I am the worst mom in the world to my kids (7 and 9) but as long as I'm here, I'm doing the best I can.  
Take it easy...
Hi DeeAnn,
My heart goes out to you on coping with CM's while at the same time doing the BEST you can as a mom and wife.
You are not alone @ this website.
Take care,

Hi Dee,
   I just don't know how you do all you do.  You are to be admired.  I had my big thalamus/hypothalmus bleed in 99.  One son had left for college.  Fortunately that only left one at home for two years.  Unfortunately he was a wild child and I could not help him much.  I don't know how you are managing 3 kids. Oh, I know if I had to, I would, but it must be a managing feat to work it all out.
    I don't know what your sleep problems are, but I had the kind where I could fall asleep with no problem.  I'd wake up around 2 and there was no going back to sleep.  Turns out the hypothalamus is in charge of keeping you asleep.  Those cells apparently went down in the flood.  A little klonipin works great for me.
     I really believe that someone has really settled into coping with having these when they can say " This isn't the life I expected, but life is good."  Sounds like you are there.  Being an old special ed teacher, I feel like I should give you a sticker!  :D  I truly am impressed with you!

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