Oscarisms

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 month hospital stay, SC

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 cupboards or fridge is intense agony

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 go to Bower Pon