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Christmas 2013

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. The saying goes that the giv

Looking back and forward

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 decisions

Truly being Thankful

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.

Meeting a Doppleganger

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.

Migraines and LONG QT

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.

Weird things revisited.

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 there were no beds. What would have happened if

Dreams

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 my arm and dripping from my fingers.   The

Laughter from the heavens

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 eliminated by the pros so now he has a

Snow, Snow, snow

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?

The Worst day of my life

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.

Viewpoint of a little boy

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.

October 19......huge stepping stone

Last year on October 19, 2012 I was released from the hospital.   It was the ending to a four month long nightmare.   Or so I thought.   I was so weak I had to crawl up the stairs to my house on my hands and knees like a baby.   Weak was something I had never been.   I had just successfully waged a war with death.   How could I let any weakness into my life. I learned though that I could no longer do things on my own, I needed help.   I needed help physically, mentally, and personally. The next year was a precious year.   Experiencing so many firsts over again.   Relearning simple things, to trying to regain stamina. I started out in a wheelchair, moved on to a walker, took advantage of scooters, bought a pair of running shoes, and started walking.   A very slow drawn out process. Then there was the therapy.  I attended cognitive therapy, neuro-physical therapy, and cardiac rehab. I went to Calgary for S-ICD interrogations and to see my cardiologist EP.  Also for numerous genetic

Thanksgiving Weekend Canada Style

Last year as I lay in my hospital bed angry at the world, Thanksgiving passed without any thankfulness.  I was angry.  Very angry.   It's weird how a year later, a year filled with clouds and fog, that I remember how angry I was. I was angry I was there in the hospital.  I was angry at the horrid hospital food. I was angry I had no control in anything that I called my life. I was angry if the sun shone, I was angry if the sun didn't shine.  I was just plain angry. I was angry at myself, I was angry at those around me.  I was mad.  How could I be the one that all that "stuff" was happening to?  How?  Just how? A year later the anger has somewhat abated. The rages that I often experience are somewhat passing. I have a little bit more control.  A little. The clouds and fog that shrouded my mind and vision lift a little each month.  A little. Yesterday the kids and I attended CPR and AED training.  On the Saturday of the long weekend.  I'm thankful I was here to be

Grumpy cat in love

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Valentines day

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Something for me

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