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.

Friday, May 27, 2011

"Brain fog" returns

I was hoping last week that the daze I have been in for the last two years had finally passed. No such luck! :( Last week was great and provides me with hope that someday, I will not always feel strange. It had been so long since I felt good, I almost forgot what it feels like to be "normal". I'm not sure what happened last week that made such a noticeable difference. Unfortunately, this week it has been more of the same old routine: dizzy, spacey, "out of it", confused, like I'm in a daze. It sucks, and I'm tired of it! At least there is hope that I can feel better, last week was a first..now if we can only recreate last week's magic. Crossing my fingers!

Friday, May 20, 2011

Celebrating my brother's accomplishment

My brother is a really great guy. He's sweet, compassionate, considerate, and simply "good people". He is a super talented artist too. He has been working on his baby...a comic book for as long as I can remember....well maybe that's not a good analogy...since I do have brain damage but my long term memory is perfect. :) My brother, Christopher, really has been working on his comic book for years and he just got it printed /published and available for sale today. I am so happy for him, to see him really coming into himself, following his passion and dream in life to have a career in art. Here's the link to check it out:

Maybe I can talk him into creating a character that has a brain injury and a "super power" to over come all the deficits from the brain injury. I guess "super heros" probably wouldn't get brain injuries though, so maybe that's a bad idea but, sometimes I wish I had that exact "super power"!!!
As far as an update on my condition, I'm feeling the best I have felt in the last two years. I noticed a dramatic improvement this past week, and we are obviously very happy about that. My vision in particular, is MUCH better! My eye doctor, Dr. Garbus, even said that he thinks I'm clear visually to drive again. I'm not cognitively prepared to drive, but my vision is getting so much better! :) I'm not done yet...but we're still moving in the right direction and that feels good. 

Saturday, May 14, 2011

Occupational therapy graduation

Hold the balloons, and the champagne...it is a bittersweet milestone. While I am happy to have completed one part of my formal rehab program, it is with some degree of disappointment that I am discharged from some part of my therapy and still not 100% recovered. While I do know the statistics,"It is very uncommon and pretty unrealistic to think I'm going to ever be back 100%"...I still hold onto that hope and dream in my heart. At the same time, I know how lucky I am to have made this much improvement already. I also know that just because one part of my formal rehab has concluded, that does not mean that my opportunity to improve is over! It just means that I'm going to have to work that much harder and really step up my game to make changes. Last Wednesday was my last day of occupational therapy, not because I'm "cured" or all better, but because I have met all the goals that were laid out and partially because I think they are not used to having patients that are as "high" functioning as I am. Many people are discharged, sooner, and with less ability to function. I have been very lucky(not to say it came easy, this rehab stuff is hard work...mentally and physically). I can now do so many things, which is awesome!! But don't expect me to do more than one thing at a time...just not happening yet. As part of my last OT assignment they had me cooking something and trying to manage distractions. I'm not sure how exactly they rated me as doing "well" because while I did make some really yummy Smores cupcakes, I left the stove AND oven on. Whoops! This is not the first time, I leave the stove on almost every time I cook. They suggested I set a timer to remind myself about the stove, but I forget to set the timer. ;) Still trying to work on that, and in the meantime I never cook when Jack is awake...way too dangerous. I just can't remember anything....it's one of my biggest obstacles. I'm really thankful and grateful that my speech therapy is not over yet...she said she will be working with me for at least another month and I hope to continue to progress. No rest for the weary around here.  As always, we'll stay focused on how much better I am and all the things I can do!! And of course, still, thankful for everyday!

Monday, May 9, 2011

Mother's Day

Yesterday was Mother's Day and as all things are sweeter since prior to my diagnosis, surgery, and stroke....Mother's Day was no different. It was a wonderful celebration of what matters most to me! I feel so lucky to be able to not only participate in mothering Jack, but to REALLY be there in every way for him. Being Jack's "mama" is the most important job and privilege I've ever had, and being messed up in the hospital was devastating to me mostly because of him....I would cry and think ,"How am I going to take care of my sweet boy like this?" He has motivated  me to be my best throughout this whole process. He is why I had surgery in the first place because if I didn't have surgery I didn't think I would be well enough for him as time passed, and I want to always be my best for my boy! It's amazing how a two year old boy could get me to move mountains....So lucky! What a blessing!

Thursday, May 5, 2011

More seizures?

This past week has brought continued awareness to the reality of what we are dealing with....constant uncertainty. Now that my surgery is over and my rehab is well underway...we are always looking toward the future wondering what it will hold. As an eternal optimist, I am always certain that I will make a full recovery or at least keep getting better and that all this craziness will someday be a thing of the past...then just like that...another test reveals that may not be the case...at least not so soon. Anyway, I had an EEG (a test that measures electrical activity..seizures.. in your brain) this week and to make a long story shorter...I am still having abnormal brain activity..AKA seizures. Bummer! The positive side note is that I am not feeling them like I was prior to surgery, but the reality is that they are still occurring quite often (about 10 in the 20 mins. I was being tested). This is pretty significant because for many people that undergo surgery, relief from seizures is sometimes a positive outcome after the surgery. I was hoping to be lucky in that respect. Not yet, maybe in the future. I will just cross my fingers and pray that I remain asymptomatic because while I am having several seizures a day they are not currently affecting me much except maybe contributing to my fatigue. As for now, it's the same routine....work on getting better, and continue to look to the future in an optimistic light. Focus on the positive, disregard the negative, and work on the things we can control/change. We'll just have to retest in another few months and see what happens then.