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.

Saturday, December 4, 2010

The other AA

For those of "us" that have a cavernous angioma (or maybe many cavernous angiomas), AA means something very different than you (someone without a cavernous angioma) might think. AA to "us" means Angioma Alliance. Angioma Alliance or simply "AA" has been the single greatest resource to me upon receiving this life changing diagnosis. I am so grateful for finding this organization; and undoubtedly, finding AA helped to change my life.

After having my first MRI that reveled a large cavernous angioma in the middle of my brain, I visited specialist after specialist searching for answers to my "list" of questions. Invariably, every time the "big day" of my next doctor's appointment would arrive, I would be so excited... thinking I was finally going to get some answers. And of course, I always had my list of questions ready to go. Visit after visit, I would come home disappointed, frustrated, and disillusioned. Most times none of my questions were answered...or if I got any answers they were often, "Maybe...we don't know..anything is possible."  Mostly what I got was,"You "look" healthy to me." Too bad the things that are wrong with me are "in my head"...you can't see them and I'll tell you... I might "look" ok but I sure don't feel how I used to! These specialists often never even looked at my MRIs and... needless to say... I never went back to them! The uncertainty and lack of awareness surrounding this condition was glaring. How could so many doctors be giving me so much wrong and dangerous information? I couldn't believe it!! I'm a nurse. I look for answers. I need answers. I thought many times, "Where are all the people with the answers? How could I have a diagnosis, multiple pictures of this big thing in the middle of my brain, and NOT get answers?" It was beyond perplexing to me.

This is where AA helped to straighten me out, keep me sane, and always encouraged me to remain motivated in finding the "best of the best doctors"....doctors that really know and understand what a cavernous angioma is, how they work, and how they can effect you. Angioma Alliance supports patients afflicted with this condition in so many ways: by connecting patients with other patients, educating health care providers and patients alike, funding research, and on and on. For me, connecting with other people that share this diagnosis and reading their stories has helped me to understand so much. Thank you to everyone that has shared their stories, experiences, struggles and successes! What I was (and am) going through was (and still is) frightening at times, but somehow by speaking with others that have "been there, done that"...traveling down this road no longer seemed (seems) quite so impossible. Not to say that I now have nerves of steel....I'm the same wuss I've always been  :)  ...but at least I am able to do what needs to be done for my amazing husband and precious little boy. Thank you Angioma Alliance and all my AA friends! I can hardly wait to be well enough to give back!

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6 comments:

  1. It seems a lot of nurses hang out on AA - I thought for a second that maybe people in this field were, for some reason, more afflicted than us commoners ;) Then I realized that nurses are obviously interested in medical conditions :) It almost seems to me that since you are a nurse that you should not be allowed to have a condition like this. You are the caretaker...

    My first neuro appointment post hemorrhage I had a migraine. I told my neuro that since I went through all of this that I shouldn't be 'allowed' to have migraines anymore...that was my last one luckily. I haven't had one since. I digress.

    AA is a very informative resource center and support group. Everyone is patient with our fears, questions and concerns. Without AA, I'm sure we;d all be bumbling about wondering if today is going to be our last, that we may never get better. We probably wouldn't even be able to explain to others in a concise manner of what our condition is.

    Your surgery is in 6 days!!

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  2. Elizabeth UntermannDecember 9, 2010 at 12:04 AM

    Hi Elizabeth and Family, I am so glad you started this blog to let us all know how you are doing. You guys are amazing and going through more than anyone should have to. Elizabeth you have have shown grace and courage through this and I know you will continue to do so. I love seeing a recent picture of Jack, I see so much of Elizabeth in him...especially in that smile! We are sending prayers and good thoughts your way! xoxo, Elizabeth

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  3. Jacks picture is Beautiful:)
    Elizabeth you are almost there!
    I'm so very proud of you Elizabeth.
    This journey has been a long one and watching you prepare for this has been such a lesson for me. You have taught me that Love is truely what we need. Sharing stories of Aunt Toni has surely been a blessing to me. You have asked me so many times about her PEACE. Anytime I get to talk about my sister and Jesus I'm happy, The Lord was her faith and was what she held on to. Your support group truely has been a blessing for you. They have understood and listened to you. I'm so thankful for them because I know they get you. Please know how thankful I'm to have you as my niece. You are a beautiful wife and mother. I'm so glad that you are are going to truely be free. Grandma can't wait to come see you and your sweet family. Jack and Great-Grandma have so much fun together. She wants you to know how much she loves you xoxo Love, Hope and Thanksgiving Auntie,Uncle Nick, Nicholas, Chelsea, and Dominick. xoxoxoxo
    John thank you for you beautiful e-mail you are AMAZING

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  4. Elizabeth...

    Jenna, Teagan and I all wish you the best and a speedy recovery after the surgery. I know in my heart and soul that tomorrow will be a great success, and that once you fully recover you will live a wonderful happy life together with John and Jack. We were def sadden to hear about what was going on with you... And look forward to the good news ahead.

    Jenna, Teagan and Josh
    (the knight fam)

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  5. Your surgery is todayyyyyyy!!! I'm thinking of you!

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  6. We can definitely relate to the experience of talking to doctors and feeling like we're going in circles. There are so many unknowns about stroke recovery, and there is no way to predict how far my husband will progress, and how long it will take. I will be following you and no doubt, relating to many of your experiences.

    thanks for visiting my blog. I have another one, too, that's devoted more to the story of therapy after Al's stroke: http://postcardsfromtherapy.blogspot.com

    :) Jen

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