Oscarisms

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 adult life.  He did things on his

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.