Attitude is everything!

Well maybe not everything, but one should never discount the power of a positive attitude. I whole heartedly believe that a big part of my miraculous recovery is attributable to my relentless positive attitude and my intentional focus on all things that are positive. Some people, especially negative people, like to discount attitude as a contributing factor in any survivor's success or lack of such in their own recovery. It's probably because they don't want to admit that their "bad"/negative attitude is preventing and/or limiting their own recovery. In reality, they should be looking for ways to foster a more positive attitude that can only possibly aid in recovery. Attitude is something that you can control and change. With so many unknowns involved in brain injury and recovery, it seems crazy to deny the possibility that bringing your most positive thoughts and attitude could aid in your recovery. I've certainly never heard of anyone ever blaming a positive attitude for a failed or unsuccessful recovery. Some survivors also don't want to or are afraid of taking ownership of or responsibility for their recovery. I think that too is a mistake. Own it, drive it, force it, will it, demand it, make it happen. If what you are doing isn't working, change it, get new therapists, try new therapies, change your thoughts.Whatever you do, stay positive and think YOU CAN change it, unless you are happy and satisfied where you are at. Many doctors and therapists are pessimistic...there is NO room for that negativity in your recovery. When you give up, start buying into the restrictions and limitations negative people place on you, or stop trying with all your heart, it's OVER!! By no means am I saying, that ALL anyone needs is a good attitude and positive thinking to recover. There are many factors(age, area damaged both how much and what part/parts, what type of damage, inherent survivor personality, motivation, ability, prior physical condition, other medical issues, medications, on and on) involved aside from one's attitude. I'm basically saying that while some things are a given and not changeable like your age. Your attitude is one factor that you CAN control and it can help or hurt you.

If you or anyone you know is struggling with a negative attitude especially while faced with a health crisis....look for help asap. There is tons of research on the benefits of positive thinking and an optimistic attitude. There are also tons of ways to change your thought patterns.

Some people mistake a positive attitude for a Pollyanna "bury your head in the sand....no action" attitude. They are not the same....not even close. And denial can get you into trouble. You need to be able to objectively evaluate the situation in order to make the best of it.  Look at all the factors. What can you control? What parts are not changeable? What do you want to change? How are you going to get there? Do you have a plan with "SMART" goals? Are you noticing, rewarding small changes/progress along the way? Always remember what is going well, and aside from the "problem area/areas" what are you thankful for? Always appreciating is key to a positive attitude. Maintaining a positive attitude doesn't always come naturally....at least for me it didn't. It takes work. Most people are not perfect at it at first, practice makes perfect. It's starting a new set of habits, it will become more natural in time. And yes, we all feel crappy sometimes, don't ignore it, recognize it, feel it, express it, and move on. Don't get stuck in the  sh**. It will never help you to stew in the garbage too long. If you are struggling to move past the garbage, get help. There are psychological techniques that will help you retrain your brain to move along: thought stopping and CBT are two effective options among many. Finding the help you need is critical. For some strange reason, people are afraid of talk therapy/psychotherapy, but they will take heavy duty pharmaceuticals like candy. I don't understand it. Therapy is highly effective....it IS the fix....there are no side effects, and the results last a lifetime. Where as, pharma is a band-aid of sorts. It can help you temporarily, but it is NOT the long term fix. Sometimes people need medication to get started on therapy and/or to help with therapy....but....therapy is the long term fix.

I had the "luxury"(at the time it was an agonizing process but I'm thankful for the time I had and that I used my time wisely) of preparing for my very scary, risky brain surgery. The year leading up to surgery, I did an enormous amount of research on all types of recoveries. Most people are forced into "stroke recovery", totally unprepared. While I wasn't reading about stroke recovery specifically (I did read some but not much)..I never thought stroke would be my reality...I read a lot about brain surgery, especially deep brain surgery recovery.I also reached out to willing survivors from Angioma Alliance that served as my mentors and models on what to do, how to recover, etc. Thank you everyone for sharing and helping. I don't know where I would be without the tremendous outpouring of support I received from my AA friends! I also read about all kinds of miraculous recoveries...cancer, MS, TBIs, etc. Any type of triumph of the human spirit was game. I was interested in any story that involved: a miracle, someone attaining the unattainable, beating the odds, or doing something everyone else said couldn't be done.  I read and read, and then read some more. I read every inspiring, hopeful story I could find. Survivors typically have no idea what to expect, or what to do when they are faced with starting a recovery. I had a fair understanding of what to expect (except I was wildly unprepared for how devastating psychologically it is to rebuild oneself). I had a very good understanding of what I needed to DO to get better, which was a HUGE advantage to those that know nothing at first. I read a ton of blogs and personal recovery stories during my preparatory period. A common denominator in ALL of the amazing and crazy good recoveries was a reported positive attitude of the survivor. I knew that was an important model for me to follow. I never read, heard or watched one "success story" in which they credited a negative attitude as a driving force that contributed to success. In fact, sometimes the individual would credit a "turn around" from negative to positive and reported a "rebound" from plateau to increased gains. 

When my surgery did not go as planned,(I suffered a stroke as a result of the surgery) I woke up acutely aware that there was something terribly wrong. The doctor asked me to raise my right arm..ok..tough but I could do it. Then raise my left arm...  Arrrr....with all my might.....no movement!! Doctor says,"Too weak?" I agreed, "Ya, too weak." Drooling out of the left side of mouth as I spoke. My heart was racing and my mind scrambling for any explanation aside from the obvious. "Oh crap," I thought. I knew it was bad. As tried to move anything on the left....nothing.......ugh..... I didn't vocalize my concern or panic initially, but I kept trying to move something/anything....NOPE.... nothing on the left not even a toe not even a little. The doctor called it "weak", but I was completely frozen on the entire left side of my body.  I immediately became focused, fixated on all that was OK or good. I wasn't dead. I wasn't in a coma. I didn't have amnesia. I recognized everyone in the room. I could talk and understand everyone. I was able to somewhat assess myself ,sort of able to determine what was wrong and what was right. There turned out to be much more wrong than I initially suspected, but those were the details. Most things initially seemed pretty good except no movement on the left and my vision was really messed up making me vomit every time I opened my eyes. From what I read...that was all fixable by way of neuroplasticity. My immediate plan was to focus on all the stuff that was good and as soon as I can start working on what's wrong I will. And I WILL get better. I thought...., I know it's hard work. I am a hard worker..I was made for this kind of stuff...just stay focused on the positives ALWAYS. That will help!!! I actually was obsessed with surrounding myself in positivity. If it was negative, it was out during my immediate recovery. That is no time to be distracted. Being/living completely positive was not exactly "natural" to me....so I felt I had to come up to speed fast. It's hard to change old habits but I knew how important it was and that my recovery...at least the part I could control hinged on my attitude. In the year leading up to surgery, I fully immersed myself in positive books, songs, sayings. It was what helped me manage the terrible anxiety about my future. Well, that and a lot of deep breathing. I also grew more spiritual. When I felt what I was handed was too much I asked for help. I was raised Catholic and so I have long considered myself a "recovering Catholic"....it's a long way back to any type of spirituality when you have been subjected to 10 years of Catholic school. At times in the not too distant past I would identify more with an atheist/agnostic attitude than anything else. I hated religion and anything remotely close to it...don't even think of using the word God....it was like nails on a chalkboard. My Catholic upbringing really tainted my view on spirituality and my love of science helped me to stay that way for a long time. I can't buy into any belief system that denies the truths of evolution, or any other proven scientific facts. Whatever I'm going to believe needs to make sense to me. That year before my surgery really helped me to find myself and my spirituality. I was finally able to create a spiritual belief system that comforted me, and helped me meld science with spirit...two things that seemed mutually exclusive to me prior. So my asking for help outside of myself was a HUGE shift for me...just so you know I'm not, never have been, and never will be some sort of "bible banger"  wanting to convert the world. I understand how sensitive people can be about their spiritual beliefs. I was probably the most extreme "anti all of it", "keep your beliefs to yourself" kind of person before. People need to figure it out on their own, come to their own conclusions. Now I can filter it better. I'm not offended or turned off to as much as I was before. I can tune in or out a message better. Before, if the delivery involved any parts that were not agreeable....it was out...the bathwater and the baby. And so I digressed, but finding my spirituality and staying positive go hand in hand for me. It's easier to stay relentlessly positive and strong while feeling I have the infinite power and energy of the universe on my side and at my disposal. I believe the energy is there and we can access it to achieve the "unachievable". The energy is limitless. ( I just haven't figured out how to harness this energy to beat my fatigue yet...hopefully someday!)

Anyway, I knew I could potentially come out of surgery much worse than I went in, but it was a gamble I felt I had to take to reclaim my life before it was too late. Either I was going to take control with the help of the best surgeon in the world or my angioma was going to take control. I am a total control freak, so the angioma had no chance, and I hoped Dr. Spetzler would work his magic. The recovery was on me. Only I could do it, and I couldn't afford to mess it up. My husband and boy were counting on me. They needed me to be my best, and I wanted to be my best for our family....besides....being all messed up sucks. It's sooo hard. There was no way I could stay like that. I read about neuroplaticity and how to make it happen. Repeat everything a zillion times, stay positive, don't give up. And don't get depressed. Depression following brain injury is common. All your neurotransmitters are whacked, so do what you can to stay positive...it will help. Piling on the negativity with whacked NT is a recipe for disaster. So that's what I did, focus only on good positive things. It was easy for me because I'm surrounded by Jack and John..the two loves of my life! I know how lucky I am, and I'm appreciating every moment of not being dead, even when I felt like complete garbage which was most of the time. I tried to look my best and be my best everyday. I thought if somehow I looked better, I might feel better. I'm not sure that's the case, but it sure did surprise my nurses and therapists when I showed up all put together the first day of rehab...the best I could. In perspective I could have been worse, and I knew it. I was grateful for where I was at. Some stroke survivors are angry and unable to appreciate the moment,or find anything positive about their situation initially because the whole thing is dropped on them like a bomb overnight or in a matter of hours/days. I had time before to think, to evaluate, to form a perspective. I knew what I was going into....sort of....I was hoping for a normal 6 week recovery like the surgeon had suggested prior to surgery...but I was not naive. The surgeon was sugar coating it....giving me the best case scenario, but my surgery did not result in the best case scenario and I was faced with the challenge of recovering to the best of my ability. I took the challenge and fought back with all the knowledge I had about recovery, with every bit of energy that I could muster, with the best attitude possible, and with only one possible outcome....I WILL RECOVER!!

Now maybe I  was lucky, maybe this and maybe that. What I know is that I was messed up, and while I am "different" today....I have a lot of smaller issues and one monster fatigue....I am WAY better than I was and I think having a positive attitude helped in a very big way. Maintaining a positive attitude is much more natural now. It's my new habit. I'm not perfect at it 100% of the time, but when I get off track, I try to get back on asap. Besides thinking a positive attitude is helpful...., it just feels better. :) Think good thoughts!!!!

Think good thoughts

I am a HUGE fan of the power of positive energy and thinking. Jack's favorite artist of all time is Collbie Caillat or as he calls her "Bobo". We have been subjected to countless hours in the car with the same 2 cds repeating non-stop. While it gets annoying, hearing the same songs again and again... There is one song that never gets old. "Think good thoughts" That is the soundtrack that I want my brain to be programmed with. We have heard it time after time...but that's it...that's the message I want to think, practice, and remember always. I don't have time now, but I will post more on the power of positive thinking later.


                   "Think Good Thoughts"

I'm just gonna say it,
There's no using in delaying,
I'm tired of the angry hanging out inside me,

So I'll quiet down the devil,
I'm gonna knock him with a shovel,
And I'll burry all my troubles underneath the rubble 

When I'm alone in my dark dark room,
I have to tell myself to,

Think good thoughts,
Think good thoughts,
Imagine what the world would be if we would just,
Think good thoughts,
Stop the bad from feeding,

I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be
Na, na, na, na

I'm not saying that it's easy,
Especially when I'm moody,
I might be cursing like a sailor till I remind myself I'm better,

Cause words can be like weapons,
Oh and you use them, you regret them,
Oh but I'm not gonna let them take away my heaven

And when I start feeling blue,
I remember to tell myself to,

Think good thoughts,
Think good thoughts,
Imagine what the world would be if we would just,
Think good thoughts,
Stop the bad from feeding,

I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be

I just think rain on a summer night,
Stars filling up the sky,
Sunshining on my face,
Making a secret wish,
Finding my happiness,
That always makes me hold my head up high,
I wanna hold my head up high,

I wanna think good thoughts (Imagine what the world would be if we would just think good thoughts)
I wanna think good thoughts (wouldn't that be something?)
I won't let the negativity turn me into my enemy,
Promise to myself that I won't let it get the best of me,
That's how I want to be
Na, na, na, na

Heartbroken

It is with much sadness that I share the tragic loss of my sweet, loving, kind, witty, amazing sister Natalie Ann. We lost her a little over a week ago on Saturday, 7/27/13. Life will never be the same for our family.

This is what I tried to say at her memorial. I am so sad, it barely came out of my mouth and I'm not sure the words were audible between my sobs of despair...but I tried! Natalie we miss you and love you forever!!

In early 1983 I was an 8 year old girl. I was the “baby” of the family for as long as I knew, and I was happy in my role. But my mom told me life would change in 9 months time and there would be a new baby in the house. I was devastated at first, but my mom gently explained that I would always be her “baby” and soon our family would have more love to share. With me being completely obsessed with all things baby(For those of you that do not know me, I have always been and still am obsessed with babies. My dolls were the only toys that mattered). I was easily convinced that a new baby was just what we needed. The idea became more and more exciting with each passing month. My mom’s belly grew full with a perfect baby girl growing inside. We would read books and look at pictures of how “our baby” was developing inside. We would feel her kick and watch her move every night. I was completely enthralled. I could hardly wait for the big day when we could bring our baby home. I thought, “Wow, we get a real baby to cuddle, feed, and change.” My dolls weren’t nearly as fun as a real baby would be…I was sure! On November first 1983 it was a crisp morning, and the baby was finally coming. On the way to the hospital the sky was filled with the most amazing rainbow you have ever seen. It was a sign! The heavens were smiling down and illuminating to announce our precious angel Natalie Ann had arrived as a gift from God! She was the most beautiful, perfect baby I have ever seen and our family was now complete...it's so broken now. Over the years, I took great pride in loving and caring for my baby sister with all my heart. I wanted to help with everything. Everywhere we went people stopped us to look at and touch our "Gerber baby". As the years passed Natalie would sometimes complain that she felt she had 3 mothers and no sisters. While that made me sad, Juliet and I were so much older, I could understand her sentiment. No matter how she felt, I always loved her to pieces. I wanted the best for her. She grew into a smart, sensitive, witty, hard working, funny, kind, and amazing woman. With all she had going for her, I was certain she would find her way even as she seemed to struggle at times. I really thought she would work it out to live her dreams. I am devastated that she felt so hopeless and has left us prematurely. She wasn’t finished. There is so much more to life than she got to experience. My heart is broken and there is a piece missing that only she can fill. Dearest Natalie, please know how much you mean to us, how much you are loved, how sorry we are that we couldn’t help you, and know you are missed deeply until we meet again.

Cental Pain Syndrome resources

I consider myself very lucky to not be affected by the "pain monster" that is CPS. One of my dear friends is afflicted with this monster and she has put together a number of resources that she has come across. I am passing them along to you in hopes that if you have CPS, you can connect with others and benefit from this list Patti has assembled. If you know of any additional resources, please post them in the comments so that others may benefit from your wisdom.

CENTRAL PAIN SYNDROME (CPS) RESOURCES



Patients Like Me: Central Pain Syndrome
http://www.patientslikeme.com/condition ... n-syndrome

CPS UK (Central Pain Syndrome) Blog
http://centralpainsyndromeblog.wordpress.com/

Weeks after Stroke, Some Patients Develop Chronic Debilitating Pain

http://oc1dean.blogspot.com/2013/05/weeks-after-stroke-some-patients.html

Central Pain Syndrome Alliance
http://www.centralpain.org/

Fluoxetine Reduces Central Post-Stroke Pain: A Comparitive Pilot Study 
http://en.cnki.com.cn/Article_en/CJFDTOTAL-ZTYZ200405006.htm

I Have Central Pain Syndrome
http://www.experienceproject.com/groups ... rome/97371

Central Pain / Facebook
https://www.facebook.com/pages/Central- ... &filter=12

The Fires of Hell Blog
http://thefiresofhelldotwordpressdotcom ... com/about/

Central Pain Syndrome Foundation
http://centralpainsyndromefoundation.com/

Central Pain Foundation / Facebook
https://www.facebook.com/CentralPainSyndromeFoundation

What Central Pain Syndrome is Like
http://www.youtube.com/watch?v=vEV6FompwZg

CPS Sufferers Not Alone
http://www.youtube.com/watch?v=Y1TRXgW5jcw

Central Pain Syndrome "Message from Hell #1: How Are You?"
http://www.youtube.com/watch?v=h54Q5AQJ-Ss

A Day in the Life of Central Pain Syndrome
http://www.youtube.com/watch?v=8ed6hazqNYU

Central Pain Syndrome: lives in constant pain
http://www.youtube.com/watch?v=NIG0KywCwIY

Central Pain Syndrome: I am one among 100,000
http://www.youtube.com/watch?v=JD26ZAYh9Ck

Central Pain Syndrome: lifestyle changes
http://www.youtube.com/watch?v=aJQkfUrm ... tube_gdata

 
Patti's Ongoing Journey @ http://www.youtube.com/watch?v=gvtkxDFICO0


Patti's Story @ http://www.aans.org/Patient%20Informati ... strap.aspx



The power of Hope

I came across a blog that is new to me a few days ago, and I need to share it. I just LOVE, LOVE stories of hope, love, and commitment conquering the "impossible". Never let anyone steal your hope, dreams, and desire to achieve that which is labeled impossible. Doctors, especially neurologists, in my opinion, love to rain on your parade. It seems as if most of them take pride in sharing the doom and gloom in every situation. No matter what they tell you, your recovery does not have a deadline...it's never over until you say it is. If you want to get better,... do different, new, intense therapies, stay positive, and keep working. With hope....all is possible. The blog I found is called Hope Heals @ www.hopeheals.com  I love the name, the premise, and their story. It's a love story of a new mother and wife that suffered a massive brainstem bleed due to an AVM, and a loving devoted husband that supported and continues to support his wife every step of the way! In many ways it reminded me of our story, except her condition was much more severe than mine. They have put together a video telling their story, and it's very well done. Enjoy! 

All clear!!!!

Back in December, around my 2 year anniversary I had what will hopefully be my last MRI for a long time. We were elated to finally receive an all clear from 2 of the known cavernous angioma experts(Dr. Spetzler and Dr. Steinberg). I have had several "scary" reads in the past few years so finally getting the news we wanted to hear was almost unbelievable...but sooo good!! :) YAAY!!! My journey with cavernous angioma is finally over....hopefully forever!!! It makes it all worth it. All the stress, heartache, worry, frustration, and hard rehab work. It's all just part of the price we paid and I know how lucky I am. Not a day goes by that I am not filled with gratitude and appreciation for how lucky I am to be here and be as good as I am. 

Last year my report came in clear at the surgical site, but with a possible new angioma forming in my brainstem. At the time, I chose to just ignore the possibility...it was such an overwhelming miserable possibility. So the relief I felt when they changed their tune this year was unexplainable. Turns out what they are seeing on my brainstem is extensive brain damage, as evidenced by Wallerian Degeneration on the scans which can continue to evolve in the images for a long time. Lucky again! I have a ton of brain damage and really do very well anyway. They have said that individuals that exhibit this type of damage on MRIs typically experience poor recoveries which has not been my experience at all. Yes, I am still dealing with pretty severe fatigue, but when I get the crazy amount of sleep I require, I do pretty well. Thank God!!

The real significance in the all clear is that it allows us to move forward on "the next step" in our lives which will be detailed in my next post whenever I get a chance to write more.  Additionally, with cavernous angioma resections it is critical that the angioma be removed entirely because if even a single cell remains the angioma can and often does grow back and bleed again....Oh please....never again!!! At my 3 month MRI they called my resection a "partial resection" meaning only some was removed. I had hoped they were wrong, and as of the latest scan it looks as if the "entire angioma" was removed! Thank you, Dr. Spetzler and team!!!

As always, thank you to everyone that has offered support, advise, and kindness along our journey. We really appreciate all the love we received!!

2 Years

I missed my two year anniversary of my surgery/stroke on December 10th. That is a very good thing and is only possible because I am doing spectacular. I could have never imagined "forgetting" that date after only two years have passed since that very significant life changing event. I woke up from my surgery a complete mess, and not a day goes by that I do not feel eternally grateful for my current life and existence. I have spent the better part of the past two years working on my recovery. I still have a bunch of things that are "not right", but I know I am lucky. I worked crazy hard and I saw equally crazy good results. Even this past year, my recovery has slowed but I am greatly improved over last year. I'm going to list my current complaints as a point of reference for next year. These are the things that I am still working on:

Fatigue. This is the monster I fight everyday. I am soo darn tired all the time. I used to sleep a lot before my brain injury but I was also had lots and lots of energy and I could accomplish anything I desired. Now I get tired so easily and it actually feels painful I'm so tired. It's not normal, but it is becoming my new normal. This past year I saw some improvement in this, but it's still very far from normal. I am now awake twice a day for 5 hours...the rest of the time I'm sleeping. I have tried every single treatment option with little to no success...maybe this one is just time??

Left leg/calf/foot? I'm not sure what's wrong exactly, but my left shoe always falls off. Last year I struggled through still wearing my regular old shoes. They fall off with every alternating step (only the left foot...my affected side). My thought was that as I continued to wear them...my muscles would strengthen and it would stop. It didn't and so this year I bought new shoes with straps and a few pairs of boots. I asked my neurologist to send me back to PT to work on this because I would love to be all better...and she said no because well...I'm pretty darn good. No AFO, no cane, just a shoe that falls off. Grrr.Whatever...I know I'm lucky...just picky I guess.

Fine motor in left hand is not great, but I am right handed so it's not much of an issue. I can use my hand to carry something, open a door, etc, but small things are tough. Zippers, buttons, opening mail, those are reminders of where I have been because they still provide a challenge. John is often reminding me to "use" my left arm because it's mostly just hanging around. I should concentrate on using it more. I would probably get better; I usually just "forget" to use it.

Hyperacusis(crazy intense super hearing) This one is very annoying. My hearing is turned up way too much. Small sounds sound loud and loud sounds are painfully unnerving. This makes social situations more difficult. Restaurants are too loud. Parties and get togethers are draining. Music/TV background noise is like nails on a chalk board. Tiny sounds wake me up constantly even though I wear ear plugs and have a fan to drown out noise. This has improved some but is still a pretty big issue.

That is mostly it....lucky!!! I am certainly not complaining...just explaining where I'm at. I have some cognitive issues like slower than normal thinking, some difficulty with auditory processing, difficulty multitasking. I am also easily overstimulated visually usually while shopping, and by too much noise often. I'm so much better than I was and I'm getting better all the time. The cognitive issues are reminders to me, but nobody else would probably notice. I try to be patient with myself. Patience is a HUGE lesson for me and just one of the main take aways from all of this.