Oscarisms

amnesia  ( æmˈniːzjə; -ʒjə; -zɪə ) n 1.  (Medicine) a defect in memory, esp one resulting from pathological cause, such as brain damage or hysteria * Progression of Anoxic Brain Damage   Copyright © Nucleus Medical Media, Inc. Definition   Anoxic brain damage is injury to the brain due to a lack of oxygen. Hypoxia is the term to describe low oxygen. Brain cells without enough oxygen will begin to die after about four minutes. I haven't been diagnosed with either. In fact I can't get any medical people to do anything or say anything about this. After my SCA we knew my brain was fuzzy, things like not knowing pizza existed, or knowing about friendships, or friends dieing. But overall it was reasonable. But after my near fatal collapse from the blood infection I had huge chunks missing.  Significant portions of time. Significant events had disappeared from my memory. No...

A couple nights ago I was watching Muppets Take Manhatten, with my son. Kermit the frog gets injured, has amnesia, forgets everything, then miss piggy decks him and he gets his memory back. If only it was that simple. The loss of long term term (2009-2012) for me, then the SCA fog, and subsequent broken short term memory has severely impacted all aspects of my life. Doctors say, what I get back in two years is what I get back, but that's so not helpful. But that huge three year hole in my life is so detrimental. It's like I went to sleep with a 6 & 9 year old and woke up with a 9 year old and a teen. Friends died, babies were born, people married or divorced. I met people, friendships ended. And omg technology advanced. I bought furniture, and clothing. And really it's like I walked into a strangers life the day I left the hospital. For as much as its hard or inconvenient for those around me, it's absolute he'll on me. Every single minute.  It doesn't go aw...

Today I had two complete moments of clarity.  Unusual for me, but I had them. 1) Toothless - little black dragon, from the movie how to train your dragon.  I've loved him for the last year.  Something Austin and I watched together.  I bought myself a little figurine of him on my birthday.  Cute little dragon. Kids were bugging me that the show wasn't called Toothless but Dragon Rider.  I said its Toothless.  Kids are Ask why I like him so much.  They are throwing reasons at me from all directions.  He is cute, he is a dragon, you can ride him.  No, no, no. So why? I like him because he was broken and someone took the time to fix him. The kids never said another word. 2) a friend 4 years after her SCA went back to her old job.  I told her I  was proud of her.  Very very very proud and I am.  BUT: I realized that I'm proud that she took the risk to try.  Not that her short term memory was good enough to do i...

Today is my birthday my real one. I'm 47, I'm now officially closer to fifty than forty....lol. I hated turning 45, I thought the world was ending.  I wrote about it in my journal I keep.  At 45 I was closer to 50, I thought it was horrible.  I wanted no acknowledgement of that birthday, no cake, no presents. I wonder if I was fore-shadowing events yet to come. Just five months and three days later I died.  For the first time.  The next three days saw me have more sudden cardiac arrests. I don't remember any of that year.  I don't remember the angst of turning 45, I've just read that journal I kept, talked to friends, and loved ones. I didn't want to turn 45. Now two years later, I'm grateful I'm here to celebrate 47. I'm enthused I'm here to celebrate it.  I want to infect everyone with my enthusiasm.  I could scream it from the rooftops. I want to shout, and dance and be doted on, and showered with hugs and kisses, and hearts and presents ...

Growing up I hated the over- objectification of a heart in February, hearts on valentines day.  I could never understand what a dang heart even had to do with it.  It didn't look like a heart. It didn't resemble a heart.  It was a weird shape.  It looked like I was destined to have to tolerate hearts on my birthday though. Now that I have (you guessed it) a heart condition, I really want a non heart birthday.  

I can go for days with nothing planned then a day like today. Both kids had dentist appts and cleanings.  Austin was in trouble at school. So I got scolded in front of entire fifth grade class, the dentist scolded me for their poor brushing habits. :( Then took my mom to her genetic counseling appt for long qt. then had to get my blood tested since I was at hospital anyway.  Then find out A& A almost killed each other while mom and I gone.  Both bruised, both drew blood. Then spent hours doing one page of grade 5 homework.  Work he knew but refused to do.   Just arrrggg my mathematical capabilities are almost non existent.  I don't know my times table and can't remember it. Ive Explained long qt to mom for the hundredth time then she tells the genetic counsellor that she doesn't know anything. So the explanation goes on and on. Telehealth works great. Then at the end after telehealth ended I'm explaining the degrees of who could be infected if she ...

My one little word for 2014. Energy. The less I do the less I feel like doing.  Need to change that. Positive energy.  Need more of that. Stamina need to rebuild this, I really do.

Memory is a very basic function right.  One of the first things a baby does is remember Mom, Dad.  Simple, easy right? Until something comes along and messes it up. Age, trauma, lack of oxygen. Having three sudden cardiac arrests definitely played foul with my memory.  Then adding insult to injury I had a collapse from a near fatal blood infection.   Sometimes I think that did more damage than the cardiac arrests did. Three weeks after having the cardiac arrests I came home.  I could remember Hawaii, but I didn't know what a pizza was. Ten days after that I had the collapse. Then I didn't remember Hawaii either. But the iPad I hadn't remembered previously I did remember. Waking up and not knowing what year it was was weird.  Let me restate that.  Waking up thinking it was September 2009 and not July 2012 was weird.  I had a 6 & 9 year old.  Not a 9&12 year old. I was a happily employed accountant in a job I loved.   Not a fi...

A new year.  Full of promise.  What will the next 365 days bring? More of the old? Or some new? One guaranteed thing is that the time will pass.  Meet it head one and get it before it gets you. For that one needs energy. Energy is a many faceted word. Verb, noun, descriptive.   I think energy covers it all. Positive energy in which to live, full of energy to live.  Mental, physical.  Energy about summit up.

The stockings were hung by the chimney with care..........doesn't that just draw the prettiest picture?  I wonder how many places are actually that picture perfect then I get on pinterest and see the perfect pictures and shake my head. Reality is far from picture perfect in my life.  I often think that Murpheys Law (if something can go wrong it will) actually was written about me.  I believe it even more these dye. But I still find humor and beauty in the small things.  I found it laugh out loudable that my sister told mei was hosting Christmas next year whether I died again or not.  The nettinei die it better be permanent so i guess I'm hosting from the other side. Driving home in the dark and slowing down to see the beautifully lit yard was an experience. Truly this Christmas was made possible for us by local charities and the friendship and generosity f people from around the world.      It's a very humbling situation to find yourself in. T...

I was in no place to know what my rights were when the decision came to getting an ICD.  Having one or not having one was never presented as an option, not as an either or, it was presented as you get this or you die. I had no desire to die permanently.  Knowing then what I know now, I may have chosen differently.   Would I have been so blasé about getting one the first time or getting the second and third one? Not on my life. Blasé would not have existed. Informed, participatory care would have been the order of the day. My case has been a disaster: actually one disaster after another throughout this whole thing.  People tell me all the time I'm negative, I'm actually not, I'm just willing to talk about the complications that can happen, because most people don't survive the complications. Knowledge is power. I want everyone to make informed decisions, to know as many facts as possible, not to make decisions based on half disclosed information. Not to base decisi...

Ever since we received Alexis diagnosis of Long QT in October I've been writing letters to organizations trying to find help in getting one.  It seems I've written, and written and written.  I've researched grants, and contacted people. I've had two return replies the rest have gone completely unanswered.  Very detecting. This morning at 8 I contacted the Mikey Network and at 2:30 they called me back saying they would be sending one out to Alexis next week. Complete tears of gratitude. Such a huge weight lifted off of my shoulders. There are such simple things in life to be thankful for.  A beating heart, a breath of air, charity, kindness.  So many intrinsic things.

An amazing thing happened today.  I was able to meet a lady who was a sudden cardiac arrest survivor, has an ICD and has long qt.  we met at Starbucks and talked for hours.  It was a first for her and a first for Alexis and I.  Very humbling, sobering, but so amazing to meet and discuss such huge dramatic life events.

Apparently experts say that there is no correlation between headaches and Long qt.   I wonder about beta blockers and migraines.  Is there a correlation there? Or is it brain injury and migraines that correlate? Long qt can cause arrhythmias.  Arrhythmias cause impeded blood flow. Impeded blood flow causes migraines. Or Beta blockers alter your body's adrenaline production.  Migraines? Or brain injury? Lack of oxygen during SCA causes huge issues with brain injury.  Could a brain injury cause migraines? All I know is I didn't have them before but now I do.  Is there a correlation there? Severe enough to cause rage, vomit, motion issues? Or am I just blessed to get them? The frustration of not having answers to my questions is huge.

A month after my SCA I was back in the hospital in the same ward after having collapsed from my ICD blood infection.  I even met the nurse that was my nurse the day I had my SCA. She was a young student nurse.   On the day of my SCA she spoke to me at 7:10 am. She did her morning checks on me, and I told her I was going back to sleep for awhile. I'm so not a morning person.   She said she had an overwhelming urge to go back into my room at 7:20 am.  Which is when she found me blue, with no heart beat, no breathing, no pulse.  She thought I was dead.  She jumped on me and started CPR.   It was hard to hear that story one month later when once again I was there because of the complications from my ICD surgery and critically ill.    Weird things:  1) the only reason I was on that ward after my kidney stone surgery is because the hospital was at capacity in other basic wards.  I'd spent days in the ER prior to my surgery because t...

Horrible nightmare about my CD today.  I woke up from a nap on the couch with my back hurting so bad.  I stood up trying to ease the pain but could feel something under my tshirt above my jeans.  I asked Myles to check it out.  It hurt so bad.  He pulls my tshirt out of my jeans and he says there something mechanical back here a box.  I asked him to open it. I can hear things sliding and opening.  I ask him if there is blood back there he says no, but my left arm is just covered in blood, it's dripping from my fingers to the rug.  My front is covered in it. :(  I ask him what it is, he gets very quiet.  I can hear the kids starting to come downstairs, I yell at them to stay upstairs but they don't listen. The blood is just running down my arm, it's so deep redish. I ask Myles what is it? Very very quietly he says I think it's your ICD.    I start feeling dizzy and faint and my eyes are glued to the red blood running down m...

I loved being pregnant.  I absolutely revelled in it.  I might not have glowed but I certainly thrived on it.  Myles and I never wanted to know the sex of the baby.  It was just getting popular to know, but we wanted the surprise.  The ultrasound tech always told me she wouldn't be able to tell us even if we wanted to know as the babies were shy.   Not sure if it was true or not but it made our decision much easier.  But so many people wanted to know. It was like it was their right.  We always laughed and said it didn't matter to us as long as the baby was healthy. We must have said that hundreds of times. As long as the baby is healthy.  We never stopped to consider what if the baby wasn't healthy. Never even considered it. Now 13 years later baby #1 has a genetic sudden death syndrome called long qt.  an electrical default in the heart which can cause sudden death. Baby #2 has autism. He had the diagnosis aspergers but that was e...

We had an epic snowstorm over the weekend.  Roads are crap.  Close to 11 inches.  Roads are crap.  Did I mention roads are crap?  Which leads me to anxiety.  Just the thought of stepping outside the door leaves me clammy and sweaty.  I'm not really sure why.  But I'm just freaked about it.  High anxiety.  Why?

1) the day I died.......no not that day cause I lived 2) the day my genetic tests said I had long qt.  that day rocked my world. 3) the day as a Mommy that you are told your child has long qt. So far in my life that has been the worst day ever.   It's a phrase you hear often.  People venting, people letting of steam.  Stomping their feet saying thesis the worst day ever.  But really the majority of those days are pretty dang good.  Sure there can be actual worse days for some people, but for me, for where I am at in my life, today was not a good day.  At all.

Austin is cuddled up next to me on the couch tonight.  Not sure if something prompted him or not but he says I sure wish I had a Grandpa. That is one thing about waiting later in life to have kids.   The grandparents just aren't able to do what younger ones can.   Myles Mom was 80 when I had Alexis and Austin was 10 years older than her.  My Mom was 30 when she had me and I was 33.  It makes for elderly grandparents. Then Austin says I'm sure glad I still have you Mom. Made my heart melt. But it brings to my mind the worry and issue of the kids if something happens to me, or worse if something happens to Myles.   We have no family that would be good for the kids.  It's a very scary proposition now that I'm diagnosed with a sudden death syndrome.   Throw in that the kids could have it, and future care is a huge issue. There are heavy heavy thoughts that I don't know where to take.