Oscarisms

With some gentle encouragement  from some friends I decided to pursue getting my medical records from my illness.  I've thought about it often, but never been brave enough to carry through. I've even taken screen shots of addresses to write. On one occasion I even emailed for information to find out how. But I just never carried through. In late October for an medical appointment I had, I needed to complete a form.  I couldn't do it because I really don't know what all happened to me. My family didn't keep records, I certainly didn't know. In mid October on a Sunday afternoon I sat down and filled out three letters. One to a Red Deer Hospital, one to Foothills Hospital, and one to Alberta Health Care for a statement of benefits. Today I received that statement.  It's nine pages of itemized payments to service providers from Alberta Health.  It covers the time period of July 2012 to November 2014. Services for office visits, procedures, and consultations. ...

Long QT comes with it's own list of drugs to avoid. Print books are obsolete before they are printed.  In the age of internet it should be easier right? My favorite site Crediblemeds.org recently changed now.  Prior you could look up any drug at any time from any device.  It rocked.  Now not so much.  Under the guise of sending updates they now require registration.  The site has an absolute fit every single time I log in though. Every single time my drugstore logs in.  The registration page is poorly worded. Login is poorly worded. I'm just not happy with them.  Why make something that is essential to life so difficult to use. Doctors can't and won't register as login can't be saved. Passwords need constantly changed. It's something beyond virus detection, ease of use.  Then of course USA names are different than Canadian names.  Looking at Pulmicort Turbohaler (budesonide) and Mylan-BECLO AQ (beclomethasone), on google have quite th...

Austin and I are getting ready for bed.  I'm trying to explain to him that when I lose my temper and rage that it's not him.  That he's not bad, that my brain just isn't letting me deal with the situation.  I'm not rational. But how to explain that to a little boy? I don't want him to think he is the cause.  What he did may have started my meltdown but really it isn't him.  It's me. I'm trying so hard to explain why I'm not the same Mom I was before I died.  Talking and talking and talking.  I'm so very very glad I lived so I could see him and Alexis grow up.  We share big hugs.  I'm crying and so is he. Then in his little boy tentative voice he says. "I did the best thing I ever did when you died Mom". I hold him tight, and pull back looking into his eyes and ask him what? He tells me the Proudest Thing He has Ever Done...... "When you were in the hospital after you died; Dad and I went to the bank.  Dad started cr...

I'm a sudden cardiac arrest survivor (45) later diagnosed with an electrical issue long qt.  Essentially my heart is healthy just not always beating. I had a traditional ICD implanted shortly after the SCA.  Ten days later I collapsed hallucinating, blood pressure way low.  They fought to save my life for days while my body had turned septic. I had a blood infection, vegetation growth on leads. The ICD needed to come out but if the vegetation broke away it could hit my brain, my heart, or lungs and best case scenario kill me, worst case leave me a vegetative shell.  We were told I really didn't have a chance of survival leaving ICD in, or removing it.  It was an absolutely terrifying week. I was kept awake and talking or singing during the entire surgery and the vegetation broke off but didn't do anything. :) I was further kept in hospital in isolation on IV antibiotics for months while my body healed the blood infection, the sepsis, and other complications....

My young son last night tells me while I'm tucking him into bed "I wish you had never died Mom". I gave him a huge hug and said me too, me too. Within my dark shattered brain I often forget just what those around me went through. I get so focused on me, how the experience affected who I am, that I forget that others went through it too. I may have lost myself but they lost their Mom, wife, daughter, sister, friend. After all they went to bed on July 16, 2012 thinking Mom would be home the next day.  Instead the next day brings a call from the hospital saying I was dead, or dieing or would die. Their world forever changed that day too. Nothing is the same for me.  Who I am, how I think, my abilities, my personality, my actions and reactions.  It is all different. The hospitals and medical field did nothing to prepare my family for the stranger that was coming home.  They saved the body, they saved the life, they saved the beating heart but amidst all that the...

24/7/365 Twenty four hours a Day, seven days every week, and every single day of them 365. I am in pain. Pain from my S-ICD incision site. How to explain it more: Just existing has it hurting me. Laying on my left side is excruciating. Sitting in a hard back chair (concert seats, waiting room seats, kitchen chairs) creates such pressure and pain I could cry. Movements are limited and difficult.  If I bend over the grating feeling against my ribs from unit feels like muscle tearing.  Near the header area it's such a sharp pain I wonder if a scalpel was left in. I can go from tolerable pain, to gasping in tears from an innocent movement. My torso area is numbish. Yet my back area feels like it's on fire. The sharp short stabbing pain is always present.  The hot burning pain is always present. The small electrical buzzes like a tongue on a battery are intermittent. How do I explain the constant sawing action of the leads over my skin.  Back and for...

October 5, 2012 I was implanted with an S-ICD. Actually during that surgery I was implanted with two.  The first one had a failure after my heart spontaneously restarted after having it stopped for S-ICD testing. It was only through luck that there was a second one available for implant.  My surgery had been originally scheduled a week before. A rep from Cameron Health brought the S-ICD up with them.  Then my surgery was cancelled due to infection. The ICD was left. So a week or so later a different Cameron Health rep brought up a second S-ICD. The day of my surgery had the failed one and the one currently residing in my body.  I needed them both. The failure later caused a Dear Doctor letter and a software upgrade.  I still have an untested unit in me. The unit has caused me constant daily pain, impedes movement, interferes with sleep, I hate it with a passion I really haven't felt about anything since my SCAs. On the flip side it provides a measure of securi...

I'm typically a person that believes owning what you do.  You did it, you own it. I lived for 11 months believing that a med I took was at fault for my SCA.  That it was my fault.  That if it hadn't been for "me", I wouldn't have the brain injury, my family wouldn't be destroyed.  My medical team, my family, my friends, were all it's "your fault." Many still do. I recently had my occupational therapist tell me it wasn't my fault. A few days ago my daughter said it wasn't my fault.  Two friends said what happened to them wasn't their fault. So if it wasn't their fault, was it mine? I had a monumental (for me) realization early this morning. It's not my fault this happened to me.  It's not my fault I had many complications.  I didn't do anything to bring them on.   I also realized it pisses me off when people in groups constantly go "ICD is no big deal", "nothing ever goes wrong", "it...

Two years ago I collapsed at my doctors office.  I'd gone in to get the stitches for my ICD out.  I'd woken that morning disoriented, dizzy, and very tired.  Myles wanted to take me to ER.  I was hesitant at first as it was the ER that had led to my SCA. As the day wore on I became insistent, panicked, and outright belligerent that I wouldn't go to ER.  After all I had an appointment with Dr. E. In the afternoon.  I was seeing images of things, then doubles, and finally triples of things.  But I wouldn't tell Myles, as I was NOT going to the ER.  My mind would shut down at the thought of it. By the time we got to doctors office I couldn't even go inside on my own.  In the office the receptionist took me into a room immediately.  She wanted me to lay down, I didn't know how to get on exam table.  The floor sufficed.   Austin sat in the chair, over me, this little feet kicking back and forth over my head.  I wanted him take...

Today I was told if I didn't follow two recommendations put forth by counseling  that they felt there was nothing they could do. Her words were they would not be inclined to help further. The two recommendations are: 1) eliminate all TV, electronics, games, internet, social media, movies, computers 2) enroll the kids in as many activities as I can possibly schedule them into Fulfilling these two recommendations is supposed to fix my sons Aspergers. Doing this is also supposed to make Alexis and I all better.  It is apparently these things that are causing our issues. It's not that our family has undergone a humongous trauma over the past two years.  It's not that Aspergers seems to get worse at puberty. It's not that we have a genetic condition that won't just magically fix itself. Who wouldn't suffer severe anxiety under the circumstances? I'm frustrated. I'm overwhelmed. I don't know where to turn. I was seeking a safe, non-judge mental...

Humiliation comes in many forms.  Some times I think we are embarrassed more by those things out of our control than those things in our control. Take my illness for example.  I'm embarrassed that I died, that I caused this to happen o my family, even though it was completely out of my control.  So I got a brain injury, it's not my fault why be embarrassed. My son is autistic, it's not my fault or his fault so why be embarrassed? But: my weight absolutely completely my fault, yet it never bothered me. For 25 years it didn't bother me.  How did it not? Then this month, humiliation after humiliation regarding my weight just made it hurt so deeply;  it is my fault, I am humiliated. I'm embarrassed. And worse yet I'm ashamed.  I've slowly lost my strength and endurance. Not because of my heart, but because I don't.  Just because I don't.  Horribly humiliating. Visiting Calaway earlier this month and Austin wanted me to go on a ride with him. ...

I was fine with the days coming and going no big deal.  Then about 10 hours before I got all shaken, and teary, and thought two years ago I was one ill person.  It's weird how it hit me like that.  Really weird.  I wanted a cake, but didn't get one.  I would have settled for ice cream but didn't get any.  Not much going on the 17 or 18 but the 19 we went to WEM as a family and hit the galaxy land.  Yes, I even did the mind bender.  The one I really enjoyed though was the space spot.  It was awesome.

As a child I had a wicked temper.  A wicked one.  Never violent, just loud. As I aged it became a non issue and very seldom ever surfaced. Since my SCAs my temper is back.  Violence with loudness.  I've broken keyboards, thrown things at walls, slammed doors, stomped, and then the loudness.  My level of volume is in direct proportion to the frustration I'm under. Not just volume but the words I use.  I could curse with the best sailor out there. The real question is why? Why has it become so bad since my SCAs? Why is it impossible to control? It's not fair to my kids, or my husband or really even to me. It's like I see red and the words just pour forth. I can keep a tight hold on it for days, or weeks, or even a month, then in a single day it's just lost. I hate myself for it.

People that don't experience chronic pain are not able to understand what it is like.  They may be able to sympathize but they just don't know. 24/7/365 days a year my S-ICD site hurts.  That sounds like a pretty tame statement but it's pretty wild when you think about it.  Not an hour, not a minute, not a second goes by that I'm not in pain. The level of pain can vary. The intensity varies. The strangle your breathe and take it all away changes. Today was one of those days where tears ran freely down my cheeks. I told a friend I wanted to find the biggest sharpest, knife I could and cut it out. I'm scared one day I actually could.  It bothers me that much. Yet as much as it hurt it felt marginally better having as much pressure applied to it as I could with my arm.  I'd like to know why?

I got my ICD about 23 days after my SCA. My first SCA was July 17, 2012 and I had my ICD implanted on August 8, 2012.  Much of that time was spent in coma, being cooled, in cardiac ICU. My first memory was July 26, then again one on July 28 (Austin's birthday).  Then one memory of me calling Dr E to tell her to get me out of Calgary. That they wanted to cut me open and put a thing in me. I didn't want it. I wanted to go home. She should help me.  Dr E little did Calgary know talked me into the ICD. She told me I did need it. That I couldn't go home without it.  After talking to her I finally consented to getting it.   A person came around showing me the ICD toolbox. I got to hold it. I had no understanding that there were lead things that went in heart.  I thought the toolbox went in by my shoulder and that was it.  Was it a bad explanation? Was it my memory?  I look back at some of my social media posts between July 26 and August 8 a...

Smile. Put on a brave face. Be grateful you are alive. Fake it to you make it. Then for some reason the mask slips. You realize you haven't been fooling the world, you haven't even been fooling yourself. The tears fall, drip, drip, drip. Down reddened cheeks, off the chin, into the ears. Drip drip drip If tears are cleansing then I should be the cleanest around.  I can go months with nothing making me cry and then for some reason everything does. The world as a whole doesn't realize what the experience is like.  What it does to you, how it changes you, the profound affect it has on not only yourself but those closest to you as well. Is it wrong to cry? Is it wrong to dwell? dwell is the wrong word , what about revisit.? Why do the tears come. Is it grief for that which was lost or that which will never be realized? Or is it simply frustration? Or exhaustion?

A little over a week ago my kids and I participated in a Friday night "amazing race" community event.  Many different mini-events. Not intense but repetitive.  It was fun we all enjoyed it.  But the next day I hurt in places I didn't remember could hurt. Roll forward to Wednesday and my son learns to ride a two wheeled bike.  Huge accomplishment.  It's taken six years. Huge accomplishment.  Saturday I go to ride with him and falter getting started.  The pedal rakes the entire side of my leg and lodges behind my knee. I fall forward onto the crossbar. I hurt places that shouldn't be hurt. The handle bars jab me in the side getting me on my S-ICD.   I saw stars.  I came down hard and weird on my ankle trying not to fall. I hurt, am bruised and am limping. When will I learn I'm not his age?  I remember always resenting my mom as a kid when I was always told by her she was too old to do anything with me.  I was five years older whe...

Sometimes something will trigger a memory or at least give me a sense of déjà-vue. Austin wakes up and tells me he is scared.  I ask him why.  He is thinking of the time him and dad went to a bank and dad started crying. Austin says dad was so upset leaning on the counter he couldn't talk.  So Austin had to tell the lady he was crying because his wife just died.  But today almost two years later Austin is upset he didn't tell the lady that his mom had died. Innocence of children. This brought back to me waking in a hospital bed.  I'm thinking I should know that voice.  Why do I know that voice? Who is that? I'm looking past her out the window, thinking Red Deer doesn't have skyscrapers.  I'm in a white room. Hmmm. Why are there tall buildings? Who is this woman talking to me? Why should I know her? I'm a long way up. Hmmm why do I have needles in me? Why do I have an IV? This looks like a hospital room.  Hmmmm. Hey that's the Calgary Tower. ...

It turned out I had a blood infection from ICD placement.  I was sick. I was very sick. I was right back to where I'd started even being in the same room in Calgary. It was determined I had to have the whole ICD and leads pulled in order to beat the infection. However as testing was done it was found I had "stuff" growing on leads in heart. It couldn't be determined what it was. It was thought to be the size of a Canadian twoonie.  My husband and I were prepared daily for a week that if this "stuff" broke off during removal it could hit my brain and I'd either be dead or vegetable for life. If it broke off during removal it could hit my lungs with same results.  Or it could cross to other side of heart with deadly results. There was virtually no chance to come out the same way I went in. We were prepared for death or worse for a week. This week was a horrible week. I was so ill from the infection. I was thinking I'd die.  I'd just survived SC...

Two years ago, ten days after I had my ICD put in I collapsed.  My recovery had been going great. Then I woke up the day I needed my staples removed seeing double, or triple, and very confused and wobbly. I had an appointment that afternoon, so refused to be taken to ER.  I couldn't even go on my own from the van to the doctors office.  Myles had to borrow a walker to take me. I fell. I was out of it. The receptionist kicked someone else out of an exam room and put me right in one. I was instructed to lay down.  I said no way would I be able to climb onto exam bed. I refused to lay on floor because it was dirty.  Lol. I also said I wouldn't be able to get back up. Dr. E. Took my pulse and blood pressure and called the paramedics and ambulance. I wasn't even allowed to go the 1/2 block to ER with Myles.  I remember being very pissed at this.  I hated that my young son was in the room witnessing it. An IV was immediately started. Out of the entire 4 m...

My memory has improved substantially over time, which is really scary as it's what I consider terrible today. I don't have a diagnosis for it.  If it's from the SCAs, if it's from the hypothermia treatment, if it's an actual brain injury.   After my SCAs I didn't know what certain things were.  A pizza that had been in my life for twenty years, I had no idea what it was. I didn't know how to eat it, if I liked it, or even if I wanted to eat it.  Kids laughed at me.  I couldn't remember the simple letters ICD.  I called it "that thing". Spelling, grammar, punctuation, math all took a severe hit. I couldn't read a book. I lost everything from fall of 2009 till my SCAs in 2012. I can get senses of dejuvue at times but not the memorie.  Saying or typing a certain word escapes me.  I'll change an entire paragraph to avoid word usage. I can do things, or participate in a conversation, and a day, a week, a month later I have no idea it h...

Something someone said to me triggered one of those ah ha : lightbulb moments. I realized that I'm having such a hard time living in the present because I keep waiting for the other shoe to drop. There have been so many things go wrong over time.  Every time I finally start to think I can breathe a little easier, something else happens. And then something else, and it seems something sore. How can I enjoy the right now when I'm thinking the next second will bring more tragedy? Or another complication. Or something else will go wrong. How do I let go? How do I move on? How do I live in the now? Yesterday is history Tomorrow is a mystery Today is a gift that is why it's called the present.

S-ICD or  subcutaneous implantable defibrillator I had my S-ICD implanted in Oct 2012.  Special permission was needed as they were not approved then.  There is little data proving or disproving them and nothing long term yet on either the box or the leads.  While undergoing the implant surgery the first unit failed.  The error that caused it helped to trigger a world wide alert on them. A relatively simple surgery was complicated by this. My pain post op was horrendous.  I was not able to do the x-ray the next day I hurt so bad.  It was BAD. As time went on some pain resolved but most didn't. I am about 18 months post implant now.  My torso area is numb, yet my back area alternates between intense stabbing pain to hot burning pain.  I'm told it's nerve damage.  It "may" resolve at the time of battery change but most likely it will remain permanent.  My range of motion is severely compromised.  Bending to get stuff in bottom...

Frustrated at myself. Frustrated at life. Frustrated at circumstances that can't be changed.  Frustrated to the point of sobbing hot tears.  Do tears help? I don't know but I sure can't get them to stop.  The only thing I'm not frustrated with is the kids.  I love them with all my heart.  I want the world for them. Being dealt the hand of two special needs kids is hard.  Throw into that same hand my issues and I'm lost.  How does one move forward? Beyond the one breathe at a time that is? When love isn't enough what then? I often hear that everything is within our own power to change.  Tonight I call bullshit.   Fantastically hot smelly bullshit. All my power in the world won't make Austin less autistic.  All my power in the world won't make Alexis or I have LQTS.  There is nothing that can change those things.  Nothing. Absolutely nothing.

I've always been an outdoors person.  Growing up on a farm had me outdoors my entire childhood. There was nothing more fun than being out of doors.  Snow, sun, rain, cold, I loved it.  Being kept indoors was like a punishment. I've never been one to enjoy working out inside a gym.  I'd rather be out doing stuff outside.  Walking, hiking climbing. Stamina has been a struggle for me this year.  Is it the 40+ pounds I've gained in the last 12 months?  Is it the inactivity of our long extended snowy winter? Eight months of snow is excessive. Is it the heart meds I take? Taking Austin to Bower Ponds today and walking the trails had me huffing and puffing and gasping for air like a drowning guppy. He did better running with his asthma than I did just walking. There are some hills, but simple terrain.  I've been on these paths for the last 15 years. Why do they seem so hard right now? Last year I wasn't driving in the spring. I never had a chance to ...

Today is Autism Awareness Day. For my son Austin, be aware. He thinks differently, he acts differently, he behaves differently, he perceives things differently.  He is an absolutely wonderful little boy.  I love him the way he is.  I have to admit though that after I had my Sudden Cardiac Arrests I realized much more how he might be perceiving the world.  I had a brain injury from lack of oxygen.  Things were brighter, and lighter, and louder and totally overwhelming. Much like I think my son may be experiencing the world. Being overwhelmed often leads to the fight or flight complex.   I experience that so many times a day, I really believe it must be Similiar to what he experiences.  I had/have difficulty in expressing myself clearly and concisely. I grasp for appropriate words, inflections, meanings, spellings and even punctuation.  Communicating with ease no longer is possible for me and I believe that's the way it's always been for Austin...

Seeing my Mom unable to easily stand, or sit or move is hard.  Seeing my Moms mind fade away in front of me is even harder. Visiting Lilly in the Manor House last Mothers Day was scary. Looking around seeing seniors unable to move, tied into chairs, flopping around, drooling, no abilities left. Terrified me. I've thought about that a few times over the last year but this week I've fixated on it. I don't want to grow old, I don't want to become incapacitated, I don't wht to become feeble.  I don't want to be a strong mind in a weak body. I don't want my mind to slowly discintigrate from within. Living currently with a injured brain, living in pain, living with reduced mobility, I don't see me having a promising future.  That scares me.  How to live life today? How to fully experience life?

Aren't you better yet? But that happened a year ago? You should be over it? Why aren't you working? My family doesn't get it, people I thought were my friends don't get it, but I've gained friends that I thought were just acquaintances. Sometimes my husband gets so frustrated with me.  It hurts. We fight too much way too much :(  Fears? I found out I have a genetic condition that can stop my heart at any time.  Then I found out my 13 yo daughter has it too. I fear.  I fear daily, but I try not to live in fear.  Some people accuse me of being paranoid others cause me of being complacent.  I cant win when it comes to others,  I have to live my life to the best of my current ability.  Others have quit expecting me to live my life to best of my old ability. Support whether it be mentally, physically, or something would be nice but Ive learned not to expect it. It makes for a very lonely life.

I have a love hate relationship with my S-ICD.  I absolutely hate it but know logically I may one day need it.   I have long qt a heart arrythmia that caused me to have SCAs. After my SCAs and first ICD implant I developed blood infection. Then many other complication.  I fought so hard to live.  I had five surgeries in 4 months. Spent July - October 2012 hospitalized.  I lost my strength and endurance.  My scars are not pretty.  I have permanent nerve damage from my S-ICD.  It just literally sucks some days. But I'm here to see my 10&13 year olds grow up.  To me that makes it worthwhile.   My scars I consider badges of endurance. But how do I get my mind back to a happy place.  Did lack of oxygen cause my happy place to disappear? Is that even possible? M Y strength my endurance how do I get them back? 

I'm not really a believer in luck.  Either good or bad.  I believed we controlled our destiny through the choices we made.  I did believe in God but I was soured on mans interpretation of religion. I had turned 45 that year and hated the thought of getting older and hated the thought of death. I was in a private room not monitored when I had my first SCA. The nurse had been in to check my vitals and stuff that morning.  I'd told her I was going to have a nap. She said she had other morning stuff to do. 10 minutes later she told me she had an overwhelming urge to go back to my room.  There was no need to, but she had this urge to. She found me dead. Started CPR. My resuscitation was long drawn out not an easy thing.  I was cooled but the next day had another SCA.   The next day while my husband held my hand, I had my third separate SCA.  He said at that moment he said dear God please don't take her away.  He had not believed in God for his a...

What does the world looks like when you can't identify anyone that cares? how is that even possible? When those that are related to you by blood abandon you? When those that you gave birth to tell you that they hate you? When your significant other chooses to not love you? What does it look like? When those in charge of your care don't get it right? When people you thought were when  friends wlk away? when your very best isn't enough? It's empty, and broken, and desolate.  It is without hope, or energy or care.

Someone said this week that when they get up in the morning they make a determined decision to be happy that day. I read it, passed over it, but it stuck in my mind. Mi went back and reread it a few times trying to decide just what he meant. I had a conversation with Alexis today.  It was a very heavy one about fear, and life, and death, during the conversation it came up that I always look on the bright side of things. I don't ever think I will need my ICD. I don't worry about death. I don't believe Alexis will ever have events or be symptomatic. I want to believe these things, and so I do.  Alexis said I live in a fantasy world. That it isn't right to do that. That I have to look at the worst case scenario and expect that.  If I dothat I can't be disappointed when it happens.  My outlook is for me not to expect the worst to happen to focus on the positive possible outcomes.  Is it fantasy, or is it just deciding to be happy every single day.

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.