What is a cavernous angioma anyway?

I just came across this video and found it to be really informative. The medical community knows little to nothing about this condition, so thank goodness for Angioma Alliance...they are funding research, educating physicians and patients alike, and helping patients connect with others afflicted with cavernous angiomas. These nasty things that lurk in some people's brains can be devastating...sure glad mine is gone! :)

Fatigue needs a better name

At this point, the biggest obstacle to being back to my old self is probably this ridiculous fatigue. I don't know why it's called fatigue. It sounds so ordinary, and there is nothing ordinary about this type of sheer exhaustion that I feel most of the time. It's as if my arms weigh a thousand pounds each and I try to struggle to carry myself from one activity to another. The smallest task feels like it takes enormous effort. Besides the physical aspects of my fatigue, there is the cognitive side that leaves me feeling in a daze or as I have called it before in a "brain fog" most of the time.  I have tried pushing myself, exercising, building endurance....nothing works. I sleep like crazy and could sleep more. When I don't sleep my crazy needed amount, I feel sick literally. How long will this go on? Nobody knows. How does one overcome this? Nobody knows. I am hoping it's just part of the waiting game. It has improved since coming home, but it is still not anywhere near normal nor where I would like it to be.  

Emotional recovery

As I embark on the ninth month of recovery it is finally the time to refine my focus on my emotional recovery. After all, I am hoping for a complete recovery in terms of body, mind, and  spirit..whole person/being recovery.  My physical:body recovery has been amazing. My cognitive:mind recovery has been slower...but none the less amazing too. I'm getting there one baby step at a time. My emotional:spirit recovery is only beginning. Ahhh...how daunting??? This whole process has been so beyond challenging both mentally and physically. And there is one big giant piece left in my recovery. The lucky thing is I get to do it.. I'm alive...after all this I can do anything! I am a very emotional person, and no this is not a result of my brain injury...it is who I am at my core, it's a big part of what defines me, and I am very glad that my emotional side was not lost with everything else. I have always been this way and hope to always be this way. I think being emotional is a very good thing. All of this brain stuff has definitely impacted my ability to process my emotions as they came though. I was so afraid of getting depressed that I chose to put all the scary, sad emotions aside and only focus on the tasks that were going to yield me recovery in the measurable sense. I couldn't handle all of the emotion associated with agreeing to have my head cut open, all the risks associated with that, and the intense focus that was required for maximum recovery. It was really hard to be all messed up and fully aware of all my deficits. The whole experience was very humbling and I was determined to not let it be crumbling. The months leading up to my surgery were grueling as I tried to accept what might be and plan accordingly. I was petrified only to find out after surgery that the unimaginable had in fact happened. I thought many times: O' God...help me be ready for this!!! As much as I wanted to be prepared...one can never be ready for this. So as panic set in, I checked the emotion and got down to work...,"Send me to rehab...I'll figure the rest out later". Well, now is later and there is so much to deal with. The good news is...I'm alive and really darn good!!! The not so good news is that everything I couldn't deal with is still waiting. Couldn't some of it have just disappeared by now? Nope, it's all still waiting for me on the back burner where I left it. Many times along my recovery, I was asked, harassed, and burdened by others trying to get me to take on more than I was prepared to handle, and because I am the patient and this is MY recovery...I dismissed all requests to put more on my plate, not because I am rude or insensitive but because I knew I wasn't ready to take on anything more. If you ever feel overwhelmed by too big a job, break it down...only do what you can...eventually you will get there one piece at a time. Working on difficult relationships with people that were seemingly not supportive leading up to surgery and in some cases even afterwards were at the bottom of my list as I worked ferociously trying to reclaim my life (walking, talking, taking care of Jack, etc.) I have often wondered if these relationships are of any value, if they didn't care then...why should I care now? Oh, I know why...because they are "family" and somewhere in between all the hurt, pain, and disappointment that I felt is that mysterious strange thing called "love" that was either shown or rather not shown on many occasions. Regardless, I had a strategy to work on a focused recovery plan and it worked, and I believe in love (although my idea of love looks very different than most of my family's version). This is why I have enlisted the help of a professional at this point...to help me deal with the difficult relationships now.

Even though I have "looked" good for some time, I am not "recovered", but I'm convinced I will get there. Most of what has been and continues to be wrong is in my head...you can't see it, but there is much to be done. So as I embark on my spiritual recovery, I am hopeful the process will once again yield amazing results. It seems like it is taking forever...yet I just started working on this part a few weeks ago. I have to remind myself that patience is the virtue to behold. 

Stroke recovery is like a marathon

Except you don't exactly train for it and you never really pass the finish line. Or if you do pass the finish, when do you know you're there? For many survivors, it just seems to go on and on endlessly....way better than the alternative. :) I'll continue to be in the race for as long as it takes and in my ferociously competitive nature..I'm going to win..even though I'm only competing with myself...which is how much of this recovery thing has gone. I'm constantly trying to best myself. Can I lift more weight, do more reps, last longer, be faster, and on and on. I guess having a competitive heart has served me well in this instance. The other successful attitude has been persistence. I may not be the smartest, strongest, whatever...but I am crazy persistent and that's what this takes.
Previously, I have said I wanted to run a marathon in my lifetime. I don't even like running. It just seemed like an accomplishment of the mind to me. Something you prepare for as much mentally as physically, then you push yourself to complete the goal. Sounded like a fun challenge. Well, not anymore. No other marathons for me, thanks. This is the only one that matters, and it's not over yet.

Keep the good news coming

We just got some really great news. My latest EEG did not show any seizure activity(abnormal activity, yes, but seizures, no), and my seizure specialist doctor said I can stop taking Keppra! That is so exciting to me for many reasons. Probably the first reason is that this helps us put all this bad stuff behind us. Having a seizure free EEG is not something that would have happened without surgery because of all the old blood I had in my brain that was irritating everything. Prior to surgery I was having 20-30 seizures a day. It was really hard to deal with...and that is over!!! While the risk will always still be there, now due to scar tissue and old blood from the monster that was in my head, I am so relieved to hopefully have this bad part in the past. If for some reason the bad feelings (seizures) come back (which they never will), I was instructed to start taking the Keppra again and follow up with the doctor ASAP. It was a heartfelt goodbye, hoping I will never see him again...even though he's a really nice doctor. I just felt like this was one big part of this whole thing done! We made it. At times I wasn't quite sure I would live to do all of this, so every time a goal is met I am brought to tears...happy tears...so truly thankful for everyday...this is such a wonderful gift to appreciate every day life to this degree. I can't even explain it. This also means that I may be able to have another pregnancy in the not so distant future. I would rather not take any medication if I am able to have another baby, and now we are one step closer to that reality. I am also hoping my fatigue will improve without the Keppra. When I first started taking it I was really groggy, eventually "adjusting" to it, but maybe now I can "re-adjust" to not having it and have bounds of energy once again!! At least I'm hoping for that. :) So here we are, reaching another milestone of success. So wonderful to be coming back to life!!!

What I am

Who knew Sesame Street would provide inspiration for stroke recovery?? Jack and I have been enjoying this lately. Love when he asks for Will.i.am Elmo! That's the goal exactly: be the best me that I can be and keep on gettin stronger.

On the road again

Well, sort of. Yesterday, I had my driver's evaluation and I PASSED!!! We're pretty excited as this is one of the last really big things that I wanted to do to return to my "former" life. This is also so huge to me because just 8 months ago, I wasn't even safe to walk alone much less drive. Amazing!! I have worked super hard in rehab trying to get all my deficits to disappear, and while there are still some things that are not right...if they are not limiting my life...I can accept that (and for the things that are limiting...I will continue to work on them for as long as it takes). Although I am still not able to drive according to the law, I am one giant step closer, and realize it's only a matter of time now. At least I am cognitively prepared to drive..that's the biggest issue. The process involves reporting myself to the DMV, since none of my doctors reported me, and hoping the DMV will not revoke my license at this point. Chances are less that they will take my licence away now that I have "proof" that I am a safe driver. I'm not sure how long it will be before I am legal to drive again, but I do know I am a lot closer to that goal now than I have been in the last 8 months.

The evaluation was very stressful and expensive so I am trilled it's over and I passed. It involved four hours with an occupational therapist that specializes in driver preparation after brain injury. The first 2 hours were in her office, testing. I was a bit nervous about the eye testing and I passed but some parts were rough. I still have no depth perception, but am completely functional without it. :) I guess I have adapted. Some of the other tests she had me do were timed and while my accuracy was very good, I am still processing information pretty slowly, but she said it was fast enough for driving. The second 2 hours were spent in the car driving with the OT and a driving instructor. I hadn't driven in 8 months so I was a little nervous and it was an unfamiliar car, but I did really well anyway. They said I was driving kinda slowly. I thought it was better to go slowly than make a mistake, and the area they had me driving in was very busy with cars, pedestrians, kids, construction, blind corners, etc. It required all my energy to be safe, but I did it!! Crazy thing is I used to drive all day for my job and now it's one of the hardest things to do. I wouldn't even think about it before and now I know it's a really high level cognitive process...involving so much of what I lost and have slowly regained: attention, multitasking, coordination, visual scanning/processing.

Driving is super important if you plan on doing much of anything in Los Angeles, especially while toting a 2 year old along. Sure you could try to take the bus, but who has all day to get where you need to go, much less carry around a giant car seat and all the stuff you need to care for a 2 year old away from home. When I first came home from the hospital, I tried to figure out how to read the bus schedule...turns out those things aren't designed with brain injured individuals in mind...heck John couldn't even figure it out. I did take the bus/train combo a few times going back and forth to rehab, but it just didn't work. The bus would run late and then I'd miss the train and end up waiting for hours in a bad area. Thankfully John agreed to be my personal chauffeur and brought me everywhere I needed to go...what a guy!! I'm sure John is just as thrilled to not have to be my personal driver for much longer. While I will miss our extra time together, I will relish in my reclaimed independence! As I finished up yesterday and was paying, I started to cry again. Happy tears!!! I'm doing it, getting better. The intensified appreciation that I feel is so overwhelming at times, I'm sure the cashier was thinking I must have failed or I was completely crazy, but I know...I have just taken another big step back into my life and I'm am so appreciative of every milestone.