Saturday, July 27, 2013

Visiting Family and long lost friends



Hello my wonderful people! 

Right now, I am in my hometown with the kids.  Family and friends other than my parents and sister who visited in Cincinnati didnt see them for 6 years. After losing 2 grandmas that didn't get to see them again and all that happened this year...nothing is more of a blessing to see them again and I am so very grateful to be here. 




The kids are growing so fast and so wonderfully, before I know it this precious time will be gone. As for me, it feels great for the soul so it helps the body. Haha We miss Jay but we know he is happy that we are and quiet time sure can't be bad! He deserves it and his mom has been with us a year now so they get to spend time alone:-) I'm feeling good. I get frustrated still that I don't have the never ending energy or strength I use to have, like carrying only one bag of grocery instead of 10. hahaha but I remind myself very quick that I was told it would be so much worse for a much longer time. I feel very blessed and still have survivor guilt when I hear of others... Everyday is different as far as focusing, remembering, processing and all that Neuro stuff goes but I try to be patient with myself. I never know what kind of issue I'm going to have that day when I wake up. One that is consistent is still having to focus quite a bit on things that was so natural before. However, I am forced to rest plenty here so my slur speech, occasional headaches and numbness only starts happening in late afternoon. I find it quite fascinating! I think it's a great sign that it's only when I need to slow down,because it's telling me that it really goes hand in hand with how rested I am and not just damage I can't help. So when my hand gets numb,I know if I don't chill I will start talking crazy. Hahaha. My right hand never came back but I made myself a brand new signature. It's really bitter sweet when I see older papers or recipe cards with my handwriting on it. I can't express enough how thankful I am that today's writing is more typed than written. Papers I do have to fill get very sloppy but at least it's not totally impossible for me to do and I'm just so thankful for that. 


Well here was my update and I hope all of you are having a wonderful summer!! I am here until August 11 and should be back home in Cincinnati around August 15-16.   This summer is going by so fast... heck this whole year feels like a blur to me... I look back and I am so confused when it comes to time frame, months, days... Ah!!

My last post was about an request for prayer for Chrissy, who was going to have surgery by Dr.Spetzler.  I didnt update you because she decided to wait until she was 100% confident to have the surgery. I would of never left you hanging otherwise!  Handing your life over into the hand of a surgeon, no matter how skilled, is not a decision that is to be taken slightly.  She too was told it was inoperable, as Dr.Spetzler is the king of inoperable surgeries :)   I am proud of her to listen to herself and not go forward with it until she has no doubts. Being fully ready and prepared is so important for a positive recovery!   I have no doubts that being ready and happy made a huge difference in my own recovery.  The mind and how we emotionally feel is so important. Studies have proven that the brain heals much better and quicker when there is little to no stress.   Having to options to have this surgery is very nerve wracking... and there is no way to know the results until you are there, so being ready to face any scenario without regrets is crucial.   Let's keep praying for Chrissy, that her Cavernoma wont bleed and cause more damage until she is ready to get this monster out and recover!  


You can pray for me too, as I am experiencing some very intense stress swing. Is  it not mood swing, its stress swing. haha I have never been one to stress and going thru my day feeling stress is something I am not used to... I was less stress stuck in a hospital bed not being to move than now.  Makes no sense, but I cant control it... and that is something else I am not used to... I have always had full control of my emotions/stress.  


Did I tell you I cant drink coffee anymore? That was so tough! I loved coffee... shortly after getting home from Rehab, I noticed I felt terrible not even half way thru a coffee.   Its like I drank 10 coffee and not half of one.  Heart palpitation, sweaty, dizzy and this internal jittery feeling. It makes no sense to me but that's what it is. So I drink Decaf, but it does the same, just not as strong.   So, RIP coffee... I miss you!!  


My sister and her boyfriend are on their way here from Montreal!  Its going to be a full house!  Its going to be so much fun! Only Jay will be missing.  My brother and his girlfriend live here in town. 


I will let you go with a few pictures :) 






With a childhood friend in Brockville,Ontario


In font of my sister apartment in Montreal


With Angelina


Here we are :)



Tuesday, July 9, 2013

Please Pray for a future fellow Cavernous Malformation survivor II

Update!!! Chrissy decided not to go thru with the surgery at this time. I will keep you posted :) 


A few months ago, this incredible young woman contacted me via this page  She found out she had a cavernous malformation in 2005, as a young lady in her early twenties. She too, has been told by her doctor that it was inoperable. She did what I did, and just went home. Hearing about Dr.Spetzler thru this page, she took her own health into her own hands and had a new MRI done last May and sent the results to Dr.Spetzler. You guessed it, he came back with a confident "Operable", his assistant even telling her that if she was his sister, he would tell her to have the surgery. It does involve some risks, but he is very confident she will be ok and will not need rehabilitation. Her Cavernoma is on the upper spinal cord. She is flying from West Virginia to Arizona tomorrow and her surgery is July 12. I am asking you to please keep her in your thoughts and prayers. Its nerve wracking and even though I have full confidence in God and Dr.Spetzler, the power of all of us coming in prayer together is powerful. I have no doubts that my surgery and recover would not of been this amazing without all of you thinking and praying for me. Pray for a successful surgery, but also for Chrissy to feel at peace, and know that she will be ok. Pray that she doesn't have too much pain and can go home sooner than later. As strong as she is, she needs support right now  I will let you know how she is doing as soon and often as I can!



Tuesday, July 2, 2013

Accepting death


I want to talk about death... and how it feels to have to accept it for yourself.  It's a subject that I just have been thinking to myself, but somehow i guess i just feel like talking about it, sharing my thoughts; not that my thoughts are that important, but i guess this is more of a journal writing than a blog writing tonight.  Accepting my own death is something I didnt talk about with anyone.  Not just because I didnt want anybody to think I really thought I was going to die, because I really kept positive the whole time. Its more because its a very personal feeling that was thrown at me. My husband couldnt do it for me, my kids and friends couldnt do it for me. I was on my own on this one. Maybe they accepted the fact that it was a strong possibility that I would, but as far as accepting MY own death, it was all on me and how I came to that.

I just realized this afternoon that today marks 4 months since my surgery on March First.  So of course that brought back the subject to my mind. Time flies so much!! Not only since my surgery, but considering at the same time last year, I felt so sick but also at the point I had believed that there was nothing to do for me, because that is what I was told.  I didnt tell anybody how bad this could be either. I would of never thought at this time, that I would be where I am now today.


Since all this, I learned so much. Just naturally learn, weither I wanted to or not.  One thing that I so deep in me now, and i never thought it could ever be possible to this extend, is to accept your own death.  As much as you want to live, as much as you think your children absolutely need you, as much as you think there is no way this can happen to you... when given time, you end up not only accepting your own death, but understanding that its ok. That everybody is going to be ok. At first, when you get to understand how much of a possibility it is, its scary, surreal and impossible to process.  However, when given time, the survival of one's sanity kicks in and you realise it is actually easier to accept it.  For example, when I learned what was wrong with me last year, it seemed impossible, a mistake. When I struggled to breathe and swallow in February and realised what that meant, I was scared, but mostly sad, not like a "crying sad", but like a "I wanted to stay longer" sad... I know there is a proper word... Its like i was grieving the loss of my future I guess. But when I went for my surgery, the night before, the morning before, I was not scared anymore.   At the same time, I also believed I would be ok. Everything was a possibility, and I was ready either way.  It was both thought at the same time. A full acceptance of either way.


Accepting can take a while.  When  I learned more about my condition and didnt know how long I would live after I understood what my symptoms meant and how advance it really was, (or at what quality of life that was going to get me before I turn 40 if i lived thru it) I vaguely explained it to people who asked me.  I never told anyone how serious this was going to get, if everything went according to the text books.  To the  few curious people that were really interested, I just said it was a malformation and could give me a stroke, hemorrage or aneurysm at any moment, or just slowly disable me like MS does.  This was the truth, but I didnt talk about death, or how horrible I felt. I continued my life as normal as I could.   Weeks after weeks I felt worse, and I knew it was real,  but I always believed in doing what you have to do, and the body and mind adjust. It becomes stronger, and stronger. I somehow thought I could always overcome what came my way just by training my body to deal with it.   Not become victim of how I felt and let it take me over, but overcome it by being stronger than it.   I did feel  better once the summer was over, because the bleed I had in April 2012 was becoming thing of the past.  I was walking normally again, driving, and even wearing my beloved high heels. The new lovely deficits I had to live with were kept pretty much silent and I delt with them.. well in silence!


Accepting death for me came in 2 steps.  Both seperate and mixed together. Its something I cant even understand myself...   After I started feeling better last fall, I thought maybe it was a mistake, that I was going to be fine for a lot longer than I was told. So much than when I started feeling pretty bad again in January, I just beleived it was not related, since that is what I was told here... but deep down I knew better.


Anyway, its been 4 months that this was removed from my life. 4 months ago, I was expecting, and more than ready, to deal with the deficits that were about to come my way if that meant I had a chance at seeing my kids grow up. I was ready to come out of surgery and face a very long recovery.  One year, if I am to walk and live close to normal again, it would take about one year...  I was ready to begin the process.  I had spent way too much time reading stories of brainstem hemorrage/bleeding/surgery that left the person disabled and dependant of others forever, or a very long and painful recovery that didnt go well at all.


I feel guilty at times when I realise that i have come so far in so little time.   It is 4 months, which is plenty to recover from a lot of things, but brain  injury/ surgery usually take much longer since it affect the whole body, its like every part of your body having had surgery on. Everything has to recover.  Once I woke up, I never questioned for one second if I was going to fully recover or not.  I dont know if it was some kind of denial, but it worked. I know they are so many people out there that feels the same.... that waking up with such a long road to go is just a motivation to regain all that they have lost.


When I was first diagnosed, a dear aunt of mine sent me a facebook message. She said "Don't accept this, refuse it, don't believe it, don't listen"  and for some people , that may sound silly, as most times, accepting the truth is better for you... but that is how I felt , too.  I smiled big when I read her letter, and wish she was next to me to give her a big hug.  She felt the way I felt; she had the attitude I had.  I do believe the mind is powerful.. but I also believe that some people do take this approach and still die... because, in February, when all hell broke loose out of the blue, it was so surreal to me.  I had to face the "truth" after denying it so strongly, and that truth was that I had a very strong chance of dying.  It was so surreal.. I know you all have heard people say that... but you really don't understand of how surreal it feels until you are there.   Actually, yes you can. Right now.  Right now, pretend you are told you have an illness that is going to kill you between now and 5 years. Just for one minute, close your eyes, and tell yourself that.  Got  it?  Do you believe it?  It is real?  No.   That is exactly what it feel like.  Whether your doctor tells you that, or I tell you that right now, it sounds the same. You feel the same, you hear the same words.  Hearing it from a doctor does not make it more real. It gives it more credibility, but it doesn't "feel" real.   Of course,  the body starts showing you that its reality, but as far as the way you "feel" inside... No.... You don't "feel" its real. You don't "feel" that you will die.  Not until the body overtake the mind you don't.  


However, God works in mysterious way, and the human mind is so powerful, so strong...  If someone tells you tonight "you have one week to live and you will accept it and be ready", you wouldnt believe it. In no way will you ever be "ready"...this cannot happen to you, not now, not this young, not with your kids still needing you.  But it happens every day!! People, Young, with kids or not, die, with them and all those around them NOT ready!  Its not that you are not ready, its that you do not think this can happen to you!  Even if you know it humanly can, you still cant believe it.   Anyway, it is a very strange feeling to come to the point where not only you know it can happen to you, but you think its happening and I dont know how God does it, but its a overwhelming sensation of "seeing clear" .. seeing the big picture, that you are not indispensable, that the world will go on just fine without you in it.  Its not this sad story you hear in the news of some unfortunate accident claiming the life of a young mother that breaks your heart, but you as much as you feel for them, you move on, you forget.  This time, its you.  Its real.  It's permanent.


I had gone months thinking  I would beat the odds and live 50 extra years, and that kept me positive and happy, but now I had to accept that I may very likely die and accepting it was going to keep me positive and happy. It is so weird to accept your own death. I didnt talk about it... but I know how i felt physically... and I know what dying feels like.  I am still shocked of how strong of a feeling it was, and how I am still here.  Maybe you have gone thru some incident where you were in a lot of pain and you thought to yourself "Oh my gosh I am going to die", but this is not about physical pain that makes you think its too painful for human life.. its about a very deep feeling of slipping away in your mind, your soul.


I dont like to sound dramatic. I dont like to drag stories and talk about traumatic event forever.  I read some stories sometimes of someone that have been thru something traumatic and before I find out that this was 8, 13, 18 years ago, I would swear it just happened the week before.  So you really dont have to expect me talking  using the "dying"  and "dying" word again anytime soon. haha  I have just been doing a lot of thinking about this lately... and ever since these events in my life at the beginning of the year, every time I hear of someone tragically losing one's life, especially with enough time to know what is happening, it not only breaks my heart even more than before... but I feel the pain, the deep pain that comes with accepting your own death.  Its not  a pain of sadness and certainly not a pain of self pity, it was not for me anyway, but a pain of understanding how important life is, and how so very short it is. It's the pain of realising that you actually accept it. Its a feeling of tremendous loss that  leaves you feeling deeply vulnerable.

There are so many sayings that I fully grasp now... even tho I always thought i did. Sayings that the majority of us do understand and appreciate greatly, but let me tell you, they become so deep.... to infinite dimension, when you experience something like this...

One day at a time


This could happen to me


Life is short


Nothing is more important than family


These 4 sayings/truth we all think we know. I thought I did. Now, they not only are so deep to me, means so much, and are so true, but they are too deep for me to try to explain.


There are a lot of things I am very grateful and feel very blessed thru all this and yes, a successful "inoperable" surgery and a better than expected recovery surely is part of it, but its more than that.  I come out a much better human :)  Yep, human. I have always been a very compassionnate person... I really do care about people and I hurt to see someone hurt, even a stranger.  However, feeling what it is like to face death so close, or to be paralysed, to not feel your body at all, and not being able to move.... just to have all this given back to you, was not just a physical blessing, but one for the soul.  I feel like God allowed me to experience this just for a short time, so I could become even more compassionate, feel the pain of even more people.    I will never be able to explain how we feel after waking up of this surgery... the way we hear, the way we see, the way we talk (or try to) the way we feel , both physically and emotionally.. We are the same, same thoughts, same dreams, same desire, but this body is not ours. It truly is like being prisoner. We've seen movies, documentaries. We've heard people talk and think we have a pretty decent idea, but to experience it.... was very special.


Its foolish of me to say that, i know.. because I was lucky enough to regain all that, to not be condemned to live the rest of my life like that, just holding on to the hope that I can move and walk again. It breaks my heart that I was this blessed, and others are not... but I am talking about my own personal experience... Waking up from a "inoperable" surgery, not being able to move and feel... accepting your condition very naturally, almost happily, because it means you are still here, it means that your husband wont have to tell his children that their mom has died.   Then, going thru the process of re learning how to walk, the wheelchair at the foot of your bed being your ultimate goal, because that would mean you can "move around"....  In the end, I am glad I got to experience this. I understand how strong the will to survive is, not only physically, but emotionally. I understand how people accept their new life. I understand completely how people are able to smile and laugh in these condition.  Guess what? Those laughs were the happiest I have made in my entire life. Its pure, heartfelt, natural, without efforts, laughter.  I understand the power of the mind to keep one's sanity... of automatically accepting you cant feel your legs or move them, and making the choice without even thinking  of any other options, that its okay!    Survival of the mind kicks in so strong... I didnt have to talk myself into accepting this.  I have no merit, no credit.  I naturally accepted it, with no efforts at all, no struggles with myself, no choice to make.  I dont feel strong, I feel I didnt do any effort at all.  I just accepted because that is what my instinct did. The human instinct to survive and the sudden clarity of what life really means becomes so so strong. To have fully experienced and seen that, I am so incredibly blessed.


Now having time to accept your own death, or being striked with death with no warning, quick... which one would you chose?  Most of us would chose the second... but I can guarantee you, as painful as it was, I am glad I got to live the first. I will never EVER live life the same. Long term... the way we came to live life...nothing is important, nothing.   So.... I will live my life doing my best to live up to the expectation of the ones I love and this society,because its important to them..  but in my heart, nothing is important but my God, and my people. That's it.  It makes me very sad... painfully sad sometimes... and I cry, when i see the world and how we live it... it is so much more than that... i feel like everybody is missing the point... but that is a totally different post.





Go kiss your children as they sleep.  Smile to a stranger.  Tell the girl infront of you in line that she has pretty hair.  Say a sincere thank you when a guy keep a door open for you. Call a friend you haven't talked in a while and when they ask "why are you calling?" simply say "no reasons, just you".  Penpal with someone.  but most of all....

Don't stress... chances are, what you are stressing about right now, wont matter at all in 10, 5 and even one year.   Stress about loving the ones you love and making sure they know... if you really need to stress about something :) spent time with them. Give them of yourself, your energy and time, thoughts and effort.  Its free :)


SMILE