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The Chronicles of a Rebel BrainMy journey with a cavernous malformation in the brainstem.
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My journey with a cavernous malformation in the brainstem.
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My journey with a cavernous malformation in the brainstem.
brainrebel.blogspot.com
The Chronicles of a Rebel Brain: January 2012
http://brainrebel.blogspot.com/2012_01_01_archive.html
The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Saturday, January 21, 2012. Thursday, January 12, 2012. Its odd how my brain rebels. Granted its dealing with the cavernous angioma displacing bits on the inside, but its brainstem, core physical wiring type stuff, not cerebral. Subscribe to: Posts (Atom). Start from the beginning. Click scan for more. International Cavernous Angioma Patient Registry. Book: Cavernous Malformations of the Nervous System.
The Chronicles of a Rebel Brain: Well that sucks
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The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Friday, March 16, 2012. Anger, frustration, disappointment, annoyance. There have been a wide spectrum of feelings gone through today. Gloomy view from waiting room, foretelling. The visit to the neurosurgeon today was full of hope and promise with the recent discovery of the small hole in my brainstem to access my cavernous angioma. Well guess what, it ain't BIG enough. Elizabeth, John and Jack. K Maxwell Klee III.
The Chronicles of a Rebel Brain: February 2012
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The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Wednesday, February 29, 2012. Continuing through Monday and Tuesday I get twinges of vertigo when I turn too quickly and do mundane things like unloading the dishwasher. Its not pleasant and I cannot do much of this before needing to lie down and let the nausea subside. Saturday, February 25, 2012. I had the best couple of days here with my family. Pushed myself a bit and it was great. First, Friday we go ice skat...
The Chronicles of a Rebel Brain: October 2011
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The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Saturday, October 29, 2011. I have had dinner with my dad recently as he was in town for a conference. He has been hearing what a pressure cooker work is and can relate himself. He also has personal experience with the sacrifices of burying oneself with work, the hard work ethic runs in the familiy :) He is a doctor and actually he has always worked much harder than I ever have. Ironically my initial response is o...
The Chronicles of a Rebel Brain: January 2011
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The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Friday, January 28, 2011. One Month Anniversary - Appt with Neurologist. I have an appointment with a neurologist at Palo Alto Medical Foundation. I don't have a referral and get the appointment pretty quickly a few days before. I get the MRI the same day even though my case is tagged non-urgent. God bless America, where private insurance can you get the best of care quickly! Saturday, January 15, 2011. Discussing...
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thankfulforeveryday.blogspot.com
Thankful for Every Day!: Cental Pain Syndrome (CPS)
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Thankful for Every Day! Welcome to our blog! Friday, June 22, 2012. Cental Pain Syndrome (CPS). Elizabeth, John, Jack, and Luke. Labels: Cental pain syndrome. June 23, 2012 at 6:23 AM. Im so lucky that my central pain is restricted to my hemiplegic foot and that Tylenol gives me relief when I cant fall asleep. Elizabeth, John and Jack. June 24, 2012 at 11:15 AM. June 24, 2012 at 9:25 AM. As always, thank you my dear friend for your support and for doing so much to help others. You are so appreciated!
thankfulforeveryday.blogspot.com
Thankful for Every Day!: February 2015
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Thankful for Every Day! Welcome to our blog! Monday, February 2, 2015. I can totally relate to this! This is so me when I get too tired, except I would never say I don't need a nap. What a smart big brother! Elizabeth, John, Jack, and Luke. Links to this post. Subscribe to: Posts (Atom). Elizabeth, John, Jack, and Luke. Just a little family feeling lucky to be here everyday! View my complete profile. The big circle on the left in the picture is my cavernous angioma. Learn about cavernous angiomas. My New...
thankfulforeveryday.blogspot.com
Thankful for Every Day!: May 2015
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Thankful for Every Day! Welcome to our blog! Monday, May 18, 2015. The problem with a rare disease diagnosis. Stroke symptoms, hemorrhages, and headaches. She said BBPV and prescribed meclazine,(which did nothing to help), and exercises to "settle the crystals in my ears" from the BBPV. I scribbled down the words cavernous angioma and felt relieved for a moment, not knowing how asinine her words were at the time. While statistically that can be assumed, sort of. Yes, most times. Links to this post. We we...
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Thankful for Every Day!: July 2013
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Thankful for Every Day! Welcome to our blog! Friday, July 26, 2013. The power of Hope. In many ways it reminded me of our story, except her condition was much more severe than mine. They have put together a video telling their story, and it's very well done. Enjoy! Elizabeth, John, Jack, and Luke. Links to this post. Subscribe to: Posts (Atom). Elizabeth, John, Jack, and Luke. Just a little family feeling lucky to be here everyday! View my complete profile. Learn about cavernous angiomas. Leading a Healt...
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Thankful for Every Day!: 6 word story
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Thankful for Every Day! Welcome to our blog! Wednesday, May 6, 2015. I am never short on words. So asking me to tell my angioma story in 6 words is really hard. Here goes,. Cavernous angioma changed my life, FOREVER! Here is a beautiful video illustrating other's stories. Please share with everyone. Having a "rare disease" makes it so much harder to get good care. Thank you Connie for all you do. This made me cry and is so well done! Elizabeth, John, Jack, and Luke. Subscribe to: Post Comments (Atom).
thankfulforeveryday.blogspot.com
Thankful for Every Day!: The icing on the cake
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Thankful for Every Day! Welcome to our blog! Monday, January 6, 2014. The icing on the cake. Ohn would say he wanted 3 kids, I always wanted 2 and was clear that 2 was my maximum.so 2 was the goal. Well, since my first pregnancy/delivery somehow aggravated my angioma (that I never knew I had).I knew I would not risk another pregnancy unless my angioma was gone. I also wasn't willing to undergo such a risky surgery just so we could have another baby, but I needed. Surgery and a baby could be a huge bonus!
thankfulforeveryday.blogspot.com
Thankful for Every Day!: September 2014
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Thankful for Every Day! Welcome to our blog! Thursday, September 25, 2014. Supporting Angioma Alliance and finding a cure for cavernous angiomas. All you SoCal folks and anyone willing to travel.Here's your chance to come out and support Angioma Alliance and all the wonderful work they do. There is an upcoming walk in Pasadena. It's part of the W. I will add the details as I am made aware, but right now, you can sponsor me. I will be there positively! Elizabeth, John, Jack, and Luke. Links to this post.
thankfulforeveryday.blogspot.com
Thankful for Every Day!: Insight from an old friend
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Thankful for Every Day! Welcome to our blog! Monday, September 15, 2014. Insight from an old friend. The benefits to having a cavernoma. On a lighthearted note.I have been trying to get past the shock and be more positive about things. These are some things I've gained from having a cavernoma and I would love to hear yours! 10 I don't have to look like a wimp when I don't want to ride a roller coaster. 8 I now have a chauffeur to take me places (aka husband, mom, friend, etc.)! 4 More sincerity in prayers.
thankfulforeveryday.blogspot.com
Thankful for Every Day!: August 2014
http://thankfulforeveryday.blogspot.com/2014_08_01_archive.html
Thankful for Every Day! Welcome to our blog! Friday, August 29, 2014. Life is good and a new logo for AA. Luke continues to be the sweetest, cuddliest, easiest little baby. He is such a treat! Angioma Alliance has just launched a new logo that I think is really awesome. Previously they had a "little red guy" and now they have a bleeding bubble brain that I think tells the story so much better! That's why we need a cure! Elizabeth, John, Jack, and Luke. Links to this post. Subscribe to: Posts (Atom).
thankfulforeveryday.blogspot.com
Thankful for Every Day!: January 2014
http://thankfulforeveryday.blogspot.com/2014_01_01_archive.html
Thankful for Every Day! Welcome to our blog! Monday, January 6, 2014. The icing on the cake. Ohn would say he wanted 3 kids, I always wanted 2 and was clear that 2 was my maximum.so 2 was the goal. Well, since my first pregnancy/delivery somehow aggravated my angioma (that I never knew I had).I knew I would not risk another pregnancy unless my angioma was gone. I also wasn't willing to undergo such a risky surgery just so we could have another baby, but I needed. Surgery and a baby could be a huge bonus!
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The Chronicles of a Rebel Brain
The Chronicles of a Rebel Brain. My journey with a cavernous malformation in the brainstem. Wednesday, May 2, 2012. The Experiment Continues with Atorvastatin. A quick update on my statins experiment. Initially I tried going on simvastatin. 20mg, taken nightly before bed. It was a disaster. So I have been trying 5mg daily atorvastatin. And already found a limit there after 5-6 days where symptoms especially nausea are not tolerable, but no where near how bad the simvastatin was! Wednesday, April 11, 2012.
Brain Reboot: Thoughtful Political Cartoons: July 11, 2011: Eligibilty for Dummies
The Main Page/Today's Cartoon. Contact Us with Cool Ideas. Brain Reboot: Thoughtful Political Cartoons: July 11, 2011: Eligibilty for Dummies. More Awesome Cartoons. Get 'em now! Today's Cool Cartoon: Eligibility for Dummies. Recently one of the sites the regularly complains about Terry published a faux cover that is to say the least, unflattering. So we created a response below. Send it far and wide. Click here for a hi-res press-ready version. Click here for a web resolution version.
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