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, November 21, 2011

Finding a cure for cavernous angioma: Action alert!!

If you are affected by cavernous angioma you must act to be part of the cure! This condition is too rare and without active involvement of those affected there is little hope of a less invasive cure. You and all those you know with cavernous angioma NEED to register with Angioma Alliance. Oh, I would have loved to have another option to treating my angioma that didn't involve major brain surgery!!! Today brain surgery is the ONLY treatment...but it doesn't have to be that way forever. They are getting very close to drug trials, but the lack of patient population is a huge road block to expedited drug trials and solutions!!! Please, please...read the section below from Connie Lee of AA....and make sure you and everyone you know with cavernous angiomas registers no matter where you live. This is an international registry, so finding lots of people all over the world should not be that difficult. Like Connie says,"Without you...there can be no cure."

The Take Away Message from the 2011 Scientific Workshop by Connie Lee
The big topic of this year's workshop was treatment. Angioma Alliance, as an organization, is committed to being part of an international consortium for clinical drug trials. There are many roles that we will play, but foremost is our obligation to provide participants for trials. As I wrote in the final day summary on the blog, we were told it would take, at a bare minimum, 1500 people, and this is if we are willing to spend extra time pre-testing medications before human trials. If we want to start sooner, we need more people - 30,000 isn’t too many. If everyone who is eligible for a drug trial were to register today in our online Patient Registry, there would be no delays for additional animal testing, no difficult decisions about which medications not to test. Scientists wouldn’t have to feel like they have just one shot to get it right. We’d start working on getting a trial approved tomorrow. While I am very grateful to everyone who has taken the time to register, at this point, the lack of registered potential participants is the obstacle that is causing the most concern and is potentially the most disruptive.

This is Thanksgiving week in the United States, a time when families come together. Please consider using this family time as an opportunity to discuss the importance of participating in finding a cure with every affected member of your family. Heck, set up a laptop in the den near the TV and make sure everyone gets a chance without having to miss a play. Want to find a way to end that conversation with cousin Earl? Try “Oops, look at the time. Let me see if it’s my turn to register.” Same is true if you are trying to get out of that Thanksgiving chore. “Sorry, I can’t wash those pans right now. Gotta register.” If you live outside of the United States, don’t wait for your next family reunion – register today. It takes no more than 10-20 minutes to fill out the Patient Registry form at http://www.angioma.org/registry. My Thanksgiving wish would come true if we could announce to the scientists on December 1st that hundreds more of us have stepped up.

It would be tragic if what held up a non-invasive treatment was not science or money or bureaucracy, but rather us and our unwillingness or apathy. For common illnesses, it is quite possible to sit back and wait for other patients to participate in trials. For cavernous angiomas, there just aren’t enough eligible people to allow anyone with a cavernous angioma to play the waiting game. We’ve been adding “Without you, there can be no cure” to many of our messages this year. I’m not professing to speak for everyone in leadership in the organization, but I mean that statement literally. If you have a cavernous angioma and choose to sit back, there will be no cure. Period. It really is that simple. Now go register. And have a great Thanksgiving.

[Please note that if you have already signed up for the registry, you might want to go there now (yes, right now!) and make sure that your information is up-to-date. I just did, and found a number of things that had changed since I first registered.]

Sunday, November 6, 2011

A day in the life after brain injury: the spoon theory

The "spoon theory" came to be by a woman living with Lupus. While brain injury and Lupus are two very different conditions we share common ground in experiencing extreme lack of energy or "fatigue". While I am always grateful that I have had an amazing recovery and in the big picture...I am doing quite well...my life is changed drastically. I am now a true energy conservationist...not in the green, granola sense, but rather the practical, physical sense. I try to think of the "easiest" (least energy expenditure) way to do everything now. I try to come up with activities that are still stimulating for Jack...but cost me little energy. We read a lot of books, color, practice writing, play puzzles, play with Playdo, and we have enjoyed his water table all summer. I am so happy to be able to be raising my little boy, even though I think my parenting style has changed to adapt to my limitations. Watching him grow and thrive is like medicine for my soul, and the greatest gift in the world! This rigorous energy conservation and trying to gauge my energy is a whole new concept for me. I'm not very good at gauging my energy...I just seem to reach the place of being DONE with little or no warning. I have run out of energy a few times and thankfully John was able to save me, but it is something I now think of on a daily basis. Unless you are in or have been in this situation, I think it is hard to understand or relate to. I hope someday it improves or resolves, but for now the "spoon theory" pretty much sums up what a day in my body feels like....Of course...I'm still eternally THANKFUL that I get another day...no matter how limited it might be! This certainly beats the alternative or a number of the worse scenarios we could have been faced with. I think one bonus of this whole new perspective is that the things I "get" to do have an infinitely greater meaning...there is no wasted energy around here only thoughtful desired activities get done these days.