What a difference a year makes: Part 2

Here are some pictures that document the past year. While some of this is not "pretty", this is the reality of where we have been. I can not seem to load the video portions..so I will try to post that another time.

Pre-op 12/10/10

  Me holding a special rock from my Grandma. Asking God to be with me through all of this.

Recovery 12/10/10

 Alive after surgery, barely! Not feeling or looking good. I laid like that for a long time, barely opening my eyes because every time I opened them, I threw up. My neck and jaw were extremely sore. I was in a lot of pain. Glad that's over! :)

12/15/2010

Cruising the hallways of rehab with Jack.

12/15/2010

After I regained some use of my left arm, it remained bent up and "guarded" most of the time. I still have to think about relaxing at times..but I can relax it. :)

12/17/2010

 Tired after a long day of rehab, thrilled to be visiting with my boy who I missed so much! My best smile at the time.

12/18/2010

Working in the rehab gym...after hours.

03/05/2011

My first time "out" alone with Jack. I had to be strong enough and alert enough to keep him safe outside of our home. A very big achievement for me!!

10/31/2011

Our annual trip to the pumpkin patch. The only picture we can get with all of us.

The season of giving

It's that time of year that we often think about giving...not that our giving should be limited to the months at the end and beginning of the year...but it's often a time of reflection that leads to generosity. Prior to my diagnosis I always contributed to my employers annual "giving campaign". Previously, I didn't have a specific cause, so I always made my contribution to the American Cancer Society..thinking my money would go to good use there. Well, as luck would have it, I now have a cause(spreading awareness and trying to find a cure for cavernous angiomas), but I am no longer employed so I my meager donation will remain meager without the generous matching of my former employer. If you or someone you love is afflicted with cavernous angioms, or if you haven't found your cause yet please, please...send your donations to Angioma Alliance @ http://www.angioma.org/pages.aspx?content=109 They are the only organization that I know of that is working towards a cure for this nasty condition. They are very efficient with the donations they receive...almost every penny goes directly towards the cause. AA was one of my greatest resources when I was diagnosed with this rare and often devastating condition. They are working on drug trials now...in hopes they can find a drug that prevents these monsters from bleeding and growing. If the bleeding and growing can be stopped...surgery will be needed less often...and brain surgery is something that will be gladly avoided. Remember, "Without you, there can be no cure!"   

What a difference a year makes!: Part 1

As we celebrate the one year anniversary of my surgery and resulting stroke...I am flooded with emotions. This has been one amazing year!! I am so thankful for the course of events that have led to this day.
We had stayed the night before my surgery at a hotel across from St. Joe's Phoenix. We walked across the street in the early morning for my surgery. It was cold and windy. I couldn't believe what I was going there for. A major brain surgery, with more risks than I cared to think about. I was surprisingly calm. In the days, weeks, and months leading up to that moment I had spent much time planning, thinking, researching, and soul searching. The culmination of all my hard work had finally arrived. I was calm because I knew I was not alone...God was with me every step of the way...helping me to do what needed to be done. For those of you that know me, I do not consider myself "religious" in the usual sense, but I am spiritual and I have my own unique belief system that God's power is ours to do good. In my mind, you need to believe that there is a higher power to help you do things that you are not sure you can do alone, and to me Jesus is the prime example of how we can best live our lives.This belief can help to drive miracles. Proof of the power of miracles is in my MRIs. Every doctor that has looked at them before and after surgery, is typically awed by how well I am able to function despite significant damage to my brain. I asked God for strength and tranquility many times along the way to surgery and during my recovery and it was granted. By the time I arrived for surgery, I had done enough research to know that I NEEDED surgery as much as I didn't want it. My thoughts were that I HAD to do this, I've found the best team, let's get it done...and please don't let me die!! I felt I was prepared to deal with just about any other outcome...but death is a hard one to overcome. I had talked to John about some of the nasty possibilities...like if I ended up in coma. I am very sensitive to medication so I told him to be sure to take me off all medication before giving up on me. If there was any chance that I could fight my way back....trust me I'll fight. Just don't give up on me!! Well, much to my delight....I didn't die. I woke up pretty messed up but very happy. My surgery was on Friday and we found out on Sunday that I had a stroke as a result of the surgery. Oh...so that explains the left side facial droop, drooling, slurred speech, and paralyzed left side. It all made sense. While John and everyone else were pretty shocked and deflated, it didn't bother me because I was so happy to have survived and I thought I would get better. In fact, one of the doctors came in to tell me about the stroke and I was completely unfazed....not because I didn't realize my many deficits...but because I thought, "This is fixable...I've heard rehab is hard work...I'm a hard worker..no problem." As I found out later, rehab is hard but a very different type of hard. It was mostly hard on me psychologically. Trying to rebuild yourself as a person is very difficult emotionally. Trying to understand that things I have always counted on were different was very challenging for me. Growing up, my Dad would always say, "Don't count on your looks, for anything...some day that will be gone." So I always counted on my brain...never thinking it too might be gone prematurely! What is it exactly that you CAN count on? Integrity... and being the best you can be no matter what you're doing or going through in life. They say that individuals that suffer right sided brain injuries often lack insight and awareness of their deficits. While I was acutely and sometimes painfully aware of my many deficits,  I was so elated to be alive and to have the whole angioma  gone. They told me they were able to resect it entirely, which is critical. If any is left, it could grow back and I'm not up for round two! So that was the start of a very long year of reclaiming my life.

I spent the next week in Barrow's Neurological in-patient rehab. In that one week, the transformation began. I was wheeled in...too weak to walk and I walked out one week later! I was christened with all types of great therapy from experts in the field. Speech therapy was the most trying on my emotions and I cried often..realizing I had lost a part of my identity. Who are you..when you're no longer who you thought you were? It was an awakening. I practiced all my exercises in my room when my "therapy" was over for the day and every free moment that I was awake. I wanted to get back to my life ASAP, but I knew these therapists were experts in their fields, and I was a bit scared to leave knowing it would be hard to find such professionals at home. We came home December 21st, 2010. Such a wonderful day, but the day John really got put to work, not that any of this has been easy for him. I felt badly, knowing that I would create more work for him at home. He basically had to take care of Jack and I. While I was doing really well, considering the circumstances, I was discharged requiring 24 supervision. I wasn't safe to do much of anything alone. It then took about a month before I got into a rehab program at home. I was practicing all I could on my own at home, but there is no replacement for professional rehab. I finally started rehab in mid January but it wasn't the right fit for me. The place I ended up had a great reputation, but their patient population typically have far greater deficits than I did. They were "graduating" patients with less functional ability than I presented with. One of the therapists there told me to "lower my expectations" and that was it. I moved to a place closer to our home and it was a great decision. I continued all three therapies for months. I eventually added vision therapy, which was another miracle. My eyes were really dysfunctional and now they are almost 100% recovered. For eye problems I highly recommend finding a neuro-optomitist. I saw 5 eye experts prior to finding Dr. Garbus. While they all agreed, my eyes were messed up...none had solutions and some said my damage was permanent...I'm glad I kept looking for a solution. You can find an expert in your area at www. nora.cc Dr. Garbus  and tons of nauseating eye exercises saved my vision!! My new speech therapist was completely amazing too. She worked with me for an extended period of time knowing that I wanted to get all the way better. Another less experienced therapist probably would have discharged me much sooner, but she was committed to helping me meet my personal goals and she had the knowledge and experience to be successful. Working with high functioning individuals is different than most therapists are trained to treat and are accustomed to treating. She was amazing and a big contributor to my recovery. I attended rehab 3 days a week 3 hours a day for the next 7 months. It was a huge commitment and I'm eternally grateful to John for sticking with me through all of this and for helping me meet and exceed all the goals I set for myself. My mom was also a tremendous help, especially with watching Jack while I wasn't able to do so.
    
As I look back on all we've accomplished it's amazing!! I am very lucky!! I have had an amazing support system cheering me on and I am eternally grateful to everyone that has been a part of our journey. I like to focus on all the positives and goals that I have accomplished, but I am actually going to write a list of the things that still stand in the way of a FULL RECOVERY. After countless hours of physical therapy, speech therapy, occupational therapy, vision therapy, and my home therapy program I have accomplished so much at this point it is hard to identify all that is going right...almost everything! I have a few small remaining deficits that are livable and one big issue FATIGUE that I just can't seem to shake yet. I hope in time all my remaining deficits resolve. I will continue to rejoice and celebrate the wonderful success that has come my way this year. What a difference from last year.

We also received confirmation this last week that YES, in fact, my cavernous angioma is completely gone!! Hurray!!! There was some doubt after having a questionable 3 month follow-up MRI. I opted to skip a 6 month MRI...I didn't want anymore uncertainty or possible negative feedback.  This time, at one year, the results were unanimous. Everyone who looked at it agreed...it's gone!!! :) I am so happy to get the final good news. I had looked at the MRI myself prior to getting the report, but my MRI interpretation skills are rough at best. It looked questionable to me. There is still a ton of "white stuff" aka hyperintensity on the scan. I was expecting a black hole. Turns out the white stuff is not blood this time but particles from dead brain cells a common occurrence after brain injury also called Wallerian degeneration. I can handle that because I'm doing fine even with a big piece of my brain gone. AMAZING! When I first looked at my latest MRI, before we got the good news...I had decided....that's it...no more. There will be no more MRI's unless I feel something is terribly wrong. I have done all I could to prevent neurological decline, there will be no more surgeries, no more scans, no more stress, no more worrying about every little thing. I did my best to live and now it's time to get living!!! Then the news came, CLEAR! Tears of joy poured down my face..WE DID IT!! It's finally over. We have reached the hypothetical finish line. I almost can't believe it...I'm free of this dreadful diagnosis!! They always say that learning to live with the constant uncertainty is "your new normal" with cavernous angioma...not anymore for me...mine is gone! I still get the blessing of not taking simple things for granted, I know this life is a privilege...no matter what it brings. If I had not been able to find the courage to have this surgery I would have been left with that bleeding mess in my brain, relentless seizures, feeling horrible all the time and the real possibility of getting progressively worse. Not anymore. I'm getting better and better and the monster is gone from my head.

Yes, this year of recovery has been more challenging than I ever anticipated but it is worth it many times over. Thankful for everyday..more so than ever before! Blessings to all!

Stand...my turning point

Last year while I was preparing for surgery, at one point I was having a really hard time coping. I felt like it wasn't fair that I had to go through all this. (I know "life's not fair" BUT)  I felt like I had worked so hard to get to this place...exactly where I wanted to be...married to the best man ever, mother to a precious little boy...perfection. How could it be that my dream could end so suddenly? I was just getting started and completely happy and satisfied with my life. At my lowest point, I thought I might not make it...I couldn't handle all the stress or pressure of having surgery and maybe dying...leaving my sweet husband without a wife and my perfect baby without a mother. Then I heard Stand  by Rascal Flatts while I was driving coming back from one of my many doctor appointments...it hit me...I had heard the song many times before but on that occasion the lyrics resonated with me. That's exactly what I needed to do. Get strong. And Stand. I did. I was changed from that moment forward...choosing only to embrace the positive aspects and push everything else away. I was no longer crushed by the seemingly impossible feat ahead.There was NO WAY I was going to let any of this get in the way of my dream life. I wanted to be a great wife and mom more than anything and I get to do it now. Going into surgery I knew all of the risks,just hoped none of them would be my reality. Regardless, I fought my way back so that I could live the life I dreamed of.
There were many songs that inspired me during the past two years...but this one saved the day!

Another thanksgiving :)

Gratitude is a way of life...especially since my diagnosis. I thought I was always grateful...but some how things are different now. I don't take anything for granted. It often hits me when I'm doing something "normal". I think ,"Wow, I actually GET to walk over gravel or sand...AMAZING!" I tear up on a nearly daily basis when I get the opportunity to do something that seems so given to everyone else. I know how lucky I am! Not only do I get to live, I get to live in gratitude. :) This past thanksgiving we got to celebrate with John's side of the family. Rebecca and Tom were a huge help to us while I was in the hospital, and traveling back to Phoenix for a celebration of thanksgiving was surreal. Last time we were driving into the desert was in preparation for my surgery, and now almost a year later we're back to celebrate all of the blessings in our lives. My heart is filled with happiness...and gratitude! Thank you to all the wonderful people that have touched our lives...we appreciate all the love and kindness that has come our way more than I can express in words!!!

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.]

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. 





 

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. 

Unraveling?

Starting to wonder when it's safe to stop this whole routine of exercises without reversing? I have experienced great success in rehab and working my "at home" program. I was very enthusiastic doing everything a zillion times or more...I got better and then I thought I could stop. WRONG!! In the past few weeks I have noticed changes in my vision and returning spasticity(tight/sore muscles only on my left side). It's so frustrating because I thought I was done with all of this; I guess not yet. :( I just don't know when it's safe to go about my regular life. At least this time around, I know what to do because now there are no therapists to get me back on track. I started the nauseating eye exercises again, and am as disgusted as ever. I am most concerned about a possible unraveling of my cognitive function. That was the hardest to regain and I wouldn't even know where to start fixing that animal. So the big question is how long does all this go on for? Please tell me it's not forever!! 

The pathology report says it all

Finally!! I have been waiting for the pathology report from my surgery for months. They told me in the hospital that it was fine...just a cavernous angioma....but I wanted to see the report myself. I requested a copy many, many times and it finally arrived. Yes a cavernous angioma, indeed. But the report really says so much more. It's actually proof that my cm bled many, many times. There was blood of many ages found in it. The part of the report that sort of got me was the part that described the structure of the specimen they were looking at under the microscope. The said most of it looked like back to back tiny malformed blood vessels (AKA cavernous angioma) except the back part of the specimen that contained blood stained brain tissue. What I already knew, some how set me back when I read it. Yes, they had to cut a part of my brain out and part of it was in that little specimen jar they sent to the lab. They cut it out because it was already damaged by the bleeding that ensued in the years, months, days previously that caused all my symptoms prior to surgery. If they leave the blood stained brain, it will likely become an irritant because the blood absorbs over time but the iron (called-hemosiderin) from the blood always remains as an electrical irritant and often causes seizures(something I am all too familiar with)...so it's a good thing they took it out and they actually told me they couldn't get it all out (there was too much damaged brain tissue to remove, so they left part of it), it just made me feel a little weird when I read it.  The report confirmed what we already knew. My cavernous angioma HAD to come out. It was bleeding, growing, and damaging my brain. Thank goodness this part of our story is over!!!

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!!

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?!

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!!

"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!

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:
http://www.comixpress.com/store/index.php?main_page=product_info&cPath=0&products_id=1927

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. 

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!

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!

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.

Four month reflection!

A few days ago marked the four month anniversary of my surgery/stroke.We are very grateful for the progress that I have made and we realize there is still a long road ahead to get all the way back. Sometimes it seems unreal...all that happened. Sometimes, I can't even believe how "messed up" I was after surgery and how much better I am now. The brain is amazing!!!! Just four months ago, I was essentially paralyzed on my left side, not to mention all the other problems I had.. The doctors called it weakness, but I couldn't move my left arm or leg at all at first...Initially, all I did was think incessantly about moving anything I could. When I couldn't move my left arm, I laid in bed and moved my left arm with my right arm again and again. Same thing for my leg. I concentrated on wiggling my toes/fingers and was pleased with any movement. From what I had read ahead of time, I knew I had to get moving ASAP. It seems to have worked, thankfully!!!  I kept asking the nurses to help me get up, but they always told me that I was too weak.(I was probably driving them crazy!) I'm sure they were right, but I kept asking...hoping for a different answer.  Just four months later, I am thankfully able to take care of Jack(lift, carry, cuddle, and sometimes wrangle all 31lbs of his wild 2 year old body), alone, sometimes. I don't have the endurance to care for him all day as I had in the past, but we're working on it. Jack's a very spirited little boy and I think he could wear even a non-brain injured person out, so the goal of taking care of him entirely unassisted is a pretty high one in my mind.

We made some changes about a month ago in terms of rehab. I wasn't 100% pleased with the last rehab, so we interviewed and switched to a place closer to home...and so far it seems to be working out better. I also started seeing a neuro-optometrist a few weeks ago, to help with my eyes. He gave me the best news yet after the initial 3 hour assessment. (Yes, 3 hours at the eye doctor...crazy!!) He said that while I have a lot of problems with my brain-eye connection, he thinks I'm going to get much better if not 100%. One of the problems with working on the brain-eye problems is that for the exercises to work, you have to work yourself to the point of nausea...so it's really uncomfortable...and you have to do the exercises 6 times a day or more. Oh yay! So I feel like throwing up 6+ times a day, lovely!! There better be a pay off! I do notice some slight improvement already, which is so great! The new rehab happens to already work with the eye doctor which was another bonus in making the switch. Another new area of focus has been on my jaw. During the surgery, they cut one of my jaw muscles...and it was super painful at first. Now it's not so much painful, but I can barely open my mouth. Eating things like burritos, sandwiches, burgers...is pretty hard and something I would like to resume without discomfort. At the new rehab they are doing ultrasound and have given me new jaw exercises to hopefully restore my jaw range of motion eventually. The rest of my rehab is going well, I think. The cognitive issues(memory, information processing, attention, multitasking,  and distractibility) seem to be the slowest to resolve and the most difficult to work on...but I'm getting there. I did find out last week that I had forgotten how to do long division and subtraction. It has been so long, and I didn't imagine I wouldn't be able to do it....but I always use a calculator....so I figured I better try while I was working on my "homework". Sure enough, I got them wrong...several times! :( Glad to say, I have now remastered tying my shoes, telling time, long division, and subtraction ! It's moments like that, that hit me....what else did I forget??? And also, how lucky I am that I'm not worse off. We continue to take it one day at a time...never knowing what surprises the day will hold, and always thankful that we are blessed with the opportunity to live another day.

GIANT sigh of relief!

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!


My experience has been that cavernous angiomas are virtually unknown in the neurological community outside of a few really fantastic experts. This is one of the greatest obstacles in finding good treatment/care for this condition. Since my first diagnosis in Aug 2009, I have received so much wrong, dangerous, unreliable, and scary advise from countless doctors with a "neuro" as a part of their title whether it has been a neurologist, neurosurgeon, neuro-ophthalmologist, etc...you get the point. That's why it's so important to be an advocate for yourself if you carry this or any other serious medical diagnosis. For now...., I'm in the clear...and we like it that way! This latest scare is yet another reminder to always cherish those you love and to be thankful for everyday because everyday is such a gift and blessing.

Progress to report

Let me just start by saying, "Life is good!! Really good."I continue to be grateful for how good I'm doing especially considering where we were almost three months ago. We are thankful for all that I can do and continue to work on all the things I can't do yet...or can't do well yet. I have been in rehab for just over a month and for the most part it is going well. I am meeting/exceeding lots of goals and that is something that makes me very happy, especially because my #1 goal is to take care of Jack. I had missed him so much while I was in the hospital and even at home when I wasn't strong enough to pick him up. Well, I can pick him up now and I have been able to do so for about two weeks...huge accomplishment!!! and I feel like I'm getting my boy back. (tears of joy!!!) I got to take care of him by myself last Tuesday afternoon for the first time since surgery/stroke and it was like bliss. I got to feel "normal" again. Thrilling! He's also starting to know that I can do more too. He'll ask me to pick him up now, but he knows to be gentle and to help me when I ask him. He says, "Mama has an owwe on her head", and then he taps my head gently if I'm holding him. It's so precious. Sometimes when I'm carrying him I will ask him to help me by holding on and he does...sometimes I just ask him because it's so cute how he wants to help me and I love his tight squeezes. :) A few nights ago was another first. John was reading him books and putting him to bed, then he was rocking him like we always do. Normally Jack will request a certain song for you to sing to him and John thought he was requesting a new song, but it turned out he was saying, "I NEED Mama". Of course, I couldn't be any happier to fulfill his request until I figured out he was just playing us for more delay time. As soon as I got in his room to rock him and John left the room he said," I NEED Dada." My ego was instantly deflated ;)  So the short story is that I'm doing lots more with Jack and I'm super happy about it. As for rehab, I said for the "most part" it's going well and by that I mean occupational therapy and physical therapy are going well. Speech therapy...not so much. Speech therapy is the one area that has the least objective criteria, so maybe it's also more difficult to note progress, but according to John and myself there is much progress to be made. While I have made huge strides since surgery, my speech is still slightly slurred and somewhat monotone. We were working on what's called prosody and intonation in rehab in Phoenix, but they have not focused on that in this new place. I'm not happy about that because I feel like that is where your personality comes through in your speech, and I want to still be me once I'm recovered. I used to be pretty animated (maybe too much) and now it's the opposite, but according to the therapist, working on those issues are not priorities because they are not considered medical necessities. I have a ton of other deficits that fall into the speech therapist's realm too like information processing, focusing attention, multitasking, short term memory issues, and the list goes on. So to me speech therapy is really important, and I was pretty upset when she told me last week that she was going to reduce my time spent on speech therapy. In my opinion, I need more time in speech therapy not less!! John and I had a meeting with them last week to discuss this very issue and we didn't feel good after the meeting, so I'm not sure if I'm going to have to find a new rehab or maybe just speech therapy somewhere else. What I do know is that I'm not giving up on making progress on any of my deficits yet!! We'll see how it turns out, because I really don't want to start over with a new rehab altogether...but I'm not ruling it out either. Transportation (since I can't drive) has been a pretty big issue too so it just makes more sense to have all the therapies at the same place ideally. We'll work it out one way or another and we won't settle for any thing less than effective thorough therapy although at the end of the day, I'm just happy to be alive and as always, we continue to be be thankful for everyday!!

Sad news

We received some very sad news yesterday that Lisa, my roommate from Barrow's rehab had passed away last Friday. Although we didn't know her very well; we spent one very important week of our lives with Lisa and her very kind sister, Stacey. While everyone hopes for a private room in the hospital, sharing a room with Lisa was the next best thing. Lisa's endearing sister, Stacey, was by Lisa's bedside almost the entire time we were there, and she was perfect....sweet, quite, considerate, compassionate, funny, and completely dedicated to supporting her sister in her fight against breast cancer that had spread to her brain. Lisa needed a miracle and we were hoping she would get one! I had even given her the rock from my Grandma at one point hoping the power of the universe would heal her. It was very heavy to say the least! We had been hoping to hear good news...that Lisa had beaten cancer...after all, she was only 36...the same age as me....she had so much living to do!! Unfortunately, we didn't get that good news. Looking back, that was such an important week for us, and Lisa and Stacey were a big part of our everyday in rehab.Our thoughts and prayers go out to Lisa's friends and family during this difficult time. Lisa's story is yet another reminder of why it is so important to really be thankful for everyday and to never take life for granted!!

Rehab has finally started

And it feels good!!! I'm so excited to have finally started rehab this past week. My insurance never did agree to cover "day" treatment, but I am getting a ton of great rehab anyway. We now have a plan to get me strong enough to get back to taking care of Jack, which is my number one goal. I'm just so weak still (and he's getting bigger everyday), but I'm doing all the exercises I can to regain my strength and hopefully endurance will come with time.They have also figured out more of what is wrong with my eyes in 3 days than I have in the past two years despite multiple doctor visits in the last two years. I'm sooo thrilled with this  rehab team so far. I finally have a neuro-opthalmology appointment on Monday, so it will be very interesting to see what he decides is wrong since. The rehab said my eyes should get better, but maybe not 100% better because I've had these issues for so long already and there is a possibility that some of the muscles may have atrophied over the past two years, but I'm just going to keep working on them, and hope some of my eye issues resolve. On Friday they gave me a test for depth perception, and apparently I have almost none. She said, "It's amazing you are doing as well as you are. You don't fall down much do you? " I told her no. I haven't fallen down at all. I'm clumsy, but that is nothing new, maybe my eyes have been my problem all this time. :) It's just crazy to me how your body is able to compensate and learn how to do stuff despite major deficiencies. I just hope and pray that if I do everything they tell me to do at rehab, than I'm going to be better before too long. So far, so good.  

Getting into rehab is hard

We've been back from AZ for about a month now and I am yet to get started on an official rehab program. I have been doing all the work Barrow's suggested I can do on my own....but I am so wanting to be in a more inclusive program. I'm currently seeing a speech therapist near our home in SCV....and he's really great in addition to being super-nice. He has gone above and beyond to try to help me and we are very appreciative to have found him. Regardless, I've interviewed twice for a day treatment program at Northridge Hospital. From what we have heard, their brain injury program, is the best near us....and I really want to be a part of it... The program is very inclusive and runs about 7 hours a day of therapy. They do speech, physical, and occupational therapy as well as cognitive rehab.We are hopeful our insurance will finally approve it next week. It's been so frustrating for me waiting. I want to get back to my life....Jack most of all. I want to be able to hold him, carry him, and cuddle him before he's all grown up. We got the movie ToyStory 3 for Christmas and to me it resonates the message about how special every moment is with your child because in what seems like just a few minutes my little baby is going to be all grown up. He's already almost two, but it seems at times like we just brought him home from the hospital.Our little baby is going to be all grown up...and I feel like I'm missing a part of a part of it!!! I feel like they(the insurance company) are wasting my valuable recovery time and I'm wanting my brain to get reprogrammed ASAP, but I do not have all the tools to make that happen yet. I'm cautiously optimistic that this will be THE week that they finally approve me. On Monday I'm starting a part of the program, but I need to be approved to be involved in the whole program. We'll be crossing our fingers that we will finally get the good news we've been waiting for this coming week.

Mystery solved!

HI all,


For those of you wondering, we finally have an answer as to WHY I suffered a stroke during surgery. We had speculated but didn't really know why, until I spoke with Dr. Spetzler yesterday. I had seen Dr. Spetzler on many occasions while I was in the hospital, but I wasn't thinking clearly enough to ask the right questions at the time, once in rehab I did start to question WHY even though I knew there was the risk of stoke prior to surgery and answers as to what happened were not going to change the outcome or my overwhelming joy of getting this thing out of my head....but I still wanted to know....and now I do know. To explain what happened I should probably start at the beginning .As it turns out my cavernous angioma was in a very difficult location, in the middle of my brain in the insular cortex right next to the right basal ganglia....a place most neurosurgeons don't ever want to go. I knew this from the very beginning when the first neurologist read my first MRI 8/31/09  and told me," You have a very small cavernous angioma (CM)...something you were born with in the middle of your brain....it's nothing to worry about and you better hope you never need it out because they will not be able to get it out without causing you a lot of problems." She proceeded to tell me that lots of people(statistics show1 in 100-300) have cavernous angiomas and according to this first doctor they NEVER cause anyone any problems(sooo not true!!!!). I asked her if my complaints(dizziness, eye problems(can't see moving objects), and a strange feeling of being "out of it" that comes and goes 20-30 times a day(later determined to be partial seizures) were related to my CM....she told me ,"NO, this is an incidental finding....nothing to worry about and it's not causing your problems. You probably have an inner ear infection" and she sent me on my way with a prescription for sea-sick medicine which did nothing to resolve my complaints. I found it hard to believe that it was merely a "coincidence" AKA incidental finding that I had neurological complaints, they find a big mass in my brain and the mass is according to the first neurologists no way the culprit of my complaints. So glad I didn't take her word for it....and I started my tireless pursuit for answers after getting home and putting my MRI up the window to see if I could find the "tiny" thing she described. Well, I'm no MRI expert and I almost fell over after "finding" this tiny thing immediately. Turns out it wasn't tiny 2.4cm(2.2cm =1 inch) diameter to start and nearly 4.0cm(size of a ping  pong ball) a year later. Although, all my repeat MRI reports called the lesion "unchanged" they gave much larger dimensions with each scan.  This is where Angioma Alliance helped me tremendously...so many answers....so many kind, knowledgeable people that are afflicted with this condition sharing their experiences, struggles, and successes. After finding the first neurologist gave me quite a bit of inaccurate information I went on to see several more doctors that ordered different tests MRAs, an angiogram after my CM was clearly visible on MRA (cavernous angiomas normally aren't supposed to show up on MRAs because they are slow blood flow lesions, and only high blood flow lesions are supposed to show up on MRA) and one MD suspected an AVM . Turns out I didn't have an AVM, but like many/most people with the "sporadic" kind of cavernous angioma (means you only have one of these monsters in your head and you most likely do not carry the gene that passes theses onto your children) I also have a DVA(developmental venous anomaly)...very important to make sure your surgeon knows all about this and doesn't touch it if you have one. So as I kept a running list of questions and I saw doctor after doctor asking them all I could. The lack of awareness in the neurological community regarding CMs was glaring as I saw specialist after specialist. So many doctors gave me dangerous advice, but as I worked up the food chain of neuros and neurosurgeons I started to get more consistent correct answers, and more scary MRIs followed (every consecutive MRI showed more bleeding and growth). This is when watching and waiting started to seem like a bad gamble, even though I didn't want anything to do with such a frightening surgery. I contacted Dr. Spetzler in MAY 2010 half thinking he was going to tell me to not have surgery and then I could feel like I did the best I could for John, Jack and myself. If one of the best neurosurgeons in the world thinks I should leave this thing alone then that was going to be the end of the road, but his resident called me and turned our world upside down. He told me," Dr. Spetzler reviewed your scans and recommends surgery for you." I think I had to catch my breath for a minute. I felt sick to my stomach literally. How could I leave it if one of the the best specialists is telling me he thinks I'm going to better off  by having this scary surgery? John and I decided to go to Phoenix to interview Dr. Spetzler in person and get a feel....besides we were going to Phoenix for our nephew's graduation in May anyway....we just planned to extend our trip and see how we liked Dr. Spetzler. We saw Dr. Spetzler in May 2010 and he was great. The nicest, funniest, most personable surgeon we met....and by this point in time we had met quite a few. At least he looked at the MRI and didn't just tell me, “You look healthy, I think you're tired" like the last neurosurgeon told me. He answered all my questions...finally ...and gave us lots of time. Every previous doctor seemed at least partially irritated by all my questions. After we got home we thought...and thought....and thought. At one point I thought I was ready for surgery and I scheduled it, but as the date approached I just wasn't ready and we had a few other more pressing things to deal with at the time, so I postponed surgery and tried to get a few more opinions. My theory is that you can never have too many smart people give you their opinion. I sent all my stuff to Dr. Samson in Texas because I had heard great things about him, but he didn't feel comfortable giving me an opinion without him evaluating me in his office....which I was disappointed about, but totally understand. I also sent my stuff to Dr. Steinberg at Stanford because I had also heard great things about him. His office called me and was super nice and knowledgeable too! He also recommended surgery, and I thought for some time about having surgery with him, but the tipping point for us going to Phoenix was that we have family in Phoenix and we knew we were going to need as much help as possible considering we have an almost two year old to take care of  on top of this major brain surgery.(Tom and Rebecca....you guys are awesome!!! Thanks for all your help!) After getting Dr. Steinberg's opinion, it was finally clear that surgery was our only option and we decided that the risk of the surgery was less than the risk of leaving my "active, large" cavernous angioma. Anything that was possible in surgery was also a possibility of leaving my aggressive cavernous angioma that had bled 3+ times prior to surgery. I kept saying and thinking ", As long as I'm alive after surgery....I'm going to be fine"...and that holds true. I'm alive and I'm way better than fine...I'm wonderful even if my speech is a little strange or my smile is a little crooked....it's all getting better all the time anyway! There were many factors that went into this decision and this is a very personal decision for anyone facing this dilemma....but for us this was the perfect decision even though I ended up with a stroke....because I'm going to be 100% better eventually and if I never had surgery I don't think I could say that. I wasn't 100% before surgery  and in fact, I think I was getting worse for the last year and a half, but I think I'm going to get there now that we've "uncluttered" some space in my brain. So back to the point....why the stroke? I have almost 0 risk factors for stroke other than major brain surgery. Non-smoker, previously "healthy" weight....now maybe "underweight", low blood pressure, normal cholesterol, active lifestyle, previously(prior to becoming dizzy with every activity) very physically fit/active. As it turns out, the blood vessels in my brain happened to be in the way of the surgery. According to Dr. Spetzler there was a tiny normal blood vessel running through my cavernous angioma that had to be cut in order to take the cavernous angioma out. They made a decision during the surgery to sacrifice that blood vessel that in turn killed a small piece of my brain AKA "stroke" (they cut off the circulation of blood flow to a small part of my brain because there was no other alternative) in order to remove my aggressive cavernous angioma. Glad they didn't ask me my opinion because I would have been too afraid to make that call....but knowing how I'm recovering so well so far....I'm glad they made that call. I can only assume his experience and expert knowledge guided that decision, he must have known that he wasn't going to mess me up too badly. It also said in the post-op report that my age 36 (considered "young" in neurological speak) was a factor in their calculated decision to sacrifice that blood vessel. So that's the story. Feel free to ask any questions if I left out something you may be wondering.

As always, thank you to everyone that has helped us and continues to help us during this difficult time. We couldn't have gotten here without you and we still have a ways to go!!!

Best wishes to everyone!