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.

Tuesday, June 28, 2011

The best therapy I ever had....JACK!

It's amazing how little things just all of a sudden make perfect sense. Jack is a very busy little boy and caring for him has been a bit of a challenge since....well... probably forever, but since surgery it has been a huge challenge for me to take care of him by myself. He's really heavy, busy, and has way more energy than I do.  Last Friday I had a special therapy session that involved grocery shopping with Jack and my speech therapist. She wanted to see how I could manage him and finding all the stuff on my list. Jack was on his best best behavior which made it look easier than normal but it was a success, achievement, accomplishment none the less. I got almost everything on the list and I was able to attend to Jack's needs simultaneously. I forgot to ask the checker for postage stamps...checking out is the hardest part...Jack's done by then, I have to manage the money..and a lot is going on at the end. So, I did really well and I was happy with my ability to manage multiple things at the same time. My speech therapist said that she thinks if I could manage all of what I did that she thinks I'm ready to drive...so that's a BIG deal. I still need to do the driver's evaluation and maybe a class, but being cognitively prepared to drive is a huge accomplishment. As I was thinking about it the only way I think I'm getting there is by practicing attention and multitasking constantly while watching Jack. He is an extra busy boy and that is exactly what I needed to get better. Watching him is the perfect therapy...in every way. He pushes me to my limit every day...and I WANT to rise to the occasion..so I do. At first I was too weak to lift him, so I practiced my weights a million times a day, many times even late at night when I was so tired I thought I was going to drop dead,  trying to get strong enough to lift him. Holding and lifting him was something I wanted so badly...it just HAD to happen....and it did! Jack was my personal physical therapy exercise and motivation. Also, I think reading to kids is really important and Jack loves books, so it was a perfect match to improve my tone, intonation, and prosody, by reading to him with passion. Who wouldn't strive to emote dramatically when your "therapist/sweet little boy" is hanging on every word with the excitement and glee of a two year old? I could hardly wait to read Thomas and the Great Race for the zillionth time with more excitement than any time previously. This was the best speech therapy in town! Same deal for attention and multitasking...which were huge deficits for me post stroke. Jack is always on the move...trying to get into everything and anything. Attention is a full-time requirement and no therapy would have been this demanding. Watching him has been difficult but so super rewarding in every way. Point is Jack is exactly what I needed and I feel so blessed to be his mom. So now I know why I got a wild boy...because that's exactly what I needed!!

Saturday, June 11, 2011

The "acute" phase is over: 6 months

I can't believe it!! Yesterday marked 6 months since the day I had surgery and a stroke. December 10th 2010 was a rough day...in every way...the anxiety leading up to surgery was unreal..and when I "awoke" from the anesthesia I would hardly call that state of mind awake. I was in a bad place, a really bad place. I was sort of able to talk in a very slurred drooling sort of way. I was in a ton of pain from my jaw muscle being cut and my neck being held in an awkward position during surgery for hours. I didn't open my eyes very often because every time I opened them, I puked. I couldn't move the left side of my body...and I was pretty scared about that. At the same time, I was immensely grateful that I was alive, I still knew who I was, who my family was, and all of what just happened to me. If I would have lost Jack in my mind...I would have lost my single greatest motivation for recovery. Crazy how he helped to save my life!! What an amazing little spirit he has! 6 months later, I can say I have worked super hard and I am much better. There are some things that are not just as they were, but I'm not giving up yet...I have a long life to live. I have some days that are better than others, but even the days that I'm not feeling well it's mostly fatigue I'm dealing with. My endurance is still pretty terrible. I'm always trying to push myself to increase my endurance, but I actually think I probably push too hard and then regret it later. I don't seem to be able to gauge my endurance either...I just reach the point of being done....and it's too late. Once I reach the too tired spot everything starts to fall apart: my thinking, speech, posture, facial expression, body movement, vision....everything! Point being, I need a lot of sleep and rest. I hope this continues to improve with time because it's not exactly functional to require 10 hrs. of sleep and 2-3 hour naps. As John says, I'm sleeping half my life. At least I get to live the other half! :)

Most researchers and experts on brain injury indicate that the first 6 months after a brain injury is the "golden" recovery period. Not to say that at 6 months, you're done; but the greatest amount of recovery typically occurs in the first 6 months. From what I have read, most "spontaneous"/effortless recovery is usually over by 6 months. The first outpatient rehab I attended seemed somewhat lackadaisical about the significance of early and vigorous intervention. They actually told me at times that I needed to "lower my personal expectations". I totally disagreed and that's mostly why I left. Since switching to an out patient rehab closer to our house, I have continued to progress consistently. I'm not sure if switching rehabs has helped to prevent me from reaching a plateau...or I have just been lucky...but I have noticed continued improvement throughout the entire first 6 months...and I hope it continues.

I have had an amazing recovery and I credit a great deal of that to the team that was/is behind me. John, in particular, has been completely amazing!!! If not for him and Jack...I wouldn't want to see the outcome. From my first diagnosis, working through the decision to have surgery, preparing for surgery (deciding to have and preparing for surgery were the hardest steps for me), and actively engaging in my recovery and therapy....John has been here for me...supporting me, cheering me on, and I am forever grateful. When we were driving to Phoenix for surgery we had a talk about recovery (thinking and hoping I would have a routine 6 week deal)...and we agreed that whatever it takes we're committed to getting me better. I would have never imagined my recovery would last this long or cost this much, but John made a commitment to me and he's honoring his word.  He's that kind of guy and I love him more than ever. We're in this together and that makes this really hard thing so much easier. There have been a ton of other people that have walked through this with us, especially: my mom, my Auntie, Rebecca, Tom, everyone from Angioma Alliance,and my amazing team of health care professionals. We truly appreciate all the love and kindness that has come our way. Thank you is never enough but THANK YOU anyway!!! :) 

As far as my original goal of 100% recovery, I think I have changed my mind a bit about that. I don't know how I would be able to measure that anyway or if it's really all that important to me. Don't get me wrong...I'm not giving up on getting better it's just that my perspective has changed some. I don't think anyone is ever really as they were...it's a natural process...we're all always changing. If you're older than say 28 you're probably not as quick thinking or as fast as you were at 28...but you have something else to replace that speed with...WISDOM and LIFE EXPERIENCE. As I have been reflecting, I decided I may not think quite as fast as I did before, but what I have gained from this whole experience is so much more than that. I almost think that if I totaled up the pluses and minuses...I might even be ahead of the game at this point. My endurance, mental fatigue, and attention continue to be huge deficits which I DO hope to continue to improve upon. I do not want to feel limited by my deficits and right now I still feel limited somewhat...so the recovery and the hard work continues for as long as it takes. I have often thought about my dear 90 year old Grandma during my recovery. She has such a special way about her. I'm sure she is not pleased about her physical decline due to normal aging. Her ears don't hear well, her body aches, she doesn't walk as well as she once did, but boy is she wise!! She isn't quite what she used to be either, but she's really so much more. This is all part of life...it's the way it goes...it just happened to me faster!!! Maybe in some twisted sort of way it's a gift?!

Sunday, June 5, 2011

Boo whoo...Last day of physical therapy

I have always been a "cry baby" and all of these recent changes have not changed that. Last Wednesday was my last day of physical therapy, and another emotional day for me. I knew Wednesday was going to be my last day for several weeks and I thought I would be ok with it when the time came...WRONG! As I said goodbye to the therapists that have so kindly helped me to regain my abilities, I wanted to give them a hug and a heartfelt "Thank You". Rather as I said goodbye...tears poured down my face...I said "Ut oh"...and I ran out as fast as I could as to not be embarrassed by another emotional meltdown. I guess since I'm running out without any assistive devices (walker, cane, wheelchair, etc.)...that means I'm good, right? Yes, I am very good, so why the tears? I am so pleased with my physical recovery, but I'm not 100% and I want to be! I feel that without professional guidance I am going to have a much more difficult time progressing. I have read several books, a few of my favorites:Stronger after Stroke and Rewire your Brain Rewire Your Life in the past few months on stroke recovery, so I do know that my recovery will continue beyond the 6 month acute phase and without professional intervention. It's just a matter of setting goals and continuing to push hard to meet and exceed them. Thank goodness for magical neuroplacticity! I have been working on a plan for some time knowing that my formal rehab would not continue forever or as long as I would have liked. No matter what...I have come a long way...I know I am lucky and thankful to be doing as well as I am...and only time will tell how much improvement I am yet to make. So I guess I need to go back in and give them the thank you I intended. At least speech therapy has not ended yet. :) I still need it!!