Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Monday, April 23, 2012

What brain injury survivors want you to know

Here is a great article  that explains what it is like to deal with a brain injury. This article is directed at family members and loved ones but anyone can gain understanding and insight if they chose to. Thanks to Patti G. for passing it my way.
http://www.brainline.org/content/2011/07/lost-found-what-brain-injury-survivors-want-you-to-know.html

I look forward to the day when this article is no longer relevant to me personally. That day has not come as of right now. This article details a number of the "issues" those of us with brain injuries face on a near daily basis. To use my mom's phasing..."I'm not complaining...I'm explaining." Really! I am completely grateful for where I'm at today and how far I've come, but the reality is I still have a number of things I would like to see improve.
I recently attended Easter festivities with a large portion of my family. It was one of the first "family functions" that I have attended post-stroke. I have been to a few other events, but none quite the same as Easter. It was difficult. I came home basically in tears and somewhat disappointed about how hard it was for me.  While I knew it might be challenging, I wasn't entirely prepared for how hard it turned out to be. When I get upset with myself for not doing as well as I wished...I come right back to where I started. It was a bad place. I have come so far, and I am doing really great no matter what.  I am so grateful for what I can do and for the things that I can do well. Turns out, large social functions are on the list of still needing improvement. I am always hoping that these situations will just get better in time. This article acts as a reminder to be more gentle and patient with myself as I slowly try to regain all that I lost. It is certainly hard for my family to understand what I am dealing with, as I didn't even expect it to be such a challenge.

6 comments:

  1. I learned to stop being so hard on myself when I started to think of the first time I try something new as a rehearsal. Even professional musicians make mistakes when they rehearse. What is encouraging is that I ALWAYS do better the second time I try that new task.

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    1. I have read that advise from you on your blog, but seem to forget it when the situations actually present. I still always expect to be perfect...forgetting that I am still working on many things. Thanks for reminding me again! Attitude/expectation shift could make all the difference.

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    2. Hi Elizabeth,
      I LOVED this article too & am always happy to share info w/friends! :)
      I'm anticipating a family get-together w/in-laws I love & adore, but they're unaware of the 'new me.'
      While we've shared this article & explained ahead of time how fatigued I get & the need for time-outs, mobility limits, etc., we know it won't really 'register.'
      Frustrating, but am hoping to just enjoy the get-together moments & just be myself. ;)
      Patti

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  2. Elizabeth, yes, you have come SO far! And the better you get, the more we want. It's natural. I did not go through nearly the same experience as you, but I know in my recovery I made mental lists of what I wanted next to improve on. You have goals, and that's wonderful. I'm sorry Easter was exhausting...I can't imagine the energy that took from you. And as with any brain injury, we typically look much better from the outside than we feel on the inside, which makes it even harder for family to understand. Hang in there, and it's okay to want MORE - just don't beat yourself up. You have the best attitude; I hope you're feeling better since writing this entry.

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  3. Congratulations!! Really cute boy!!!

    On another note...Would you be so kind as to post this reminder to your bloggers to tune and call in for our first interview! Details below. Thank you!

    A reminder to tune in and call in this Sat. May 13, from 7pm to 8:30pm. Call in to Blog Talk Radio & speak with the host and us at (347) 850-1527 within 15 minutes of show time. Save this date and time and mark your calendar. Thanks!
    Dave & Charlene Nassaney, Authors of One Arm One Leg 100 Words, Overcoming Unbelievable Hardships. (Stroke Survivors for over 15 years)

    http://www.blogtalkradio.com/joyce-lest/2012/05/13/momma-joyce-messages-of-hope-2012-3

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