I've said in several previous posts that I would expound on various subjects later and haven't gotten around to it, yet. Oops. Life has been throwing me curve balls and having me jump through hoops, lately, so I haven't had much chance to keep people updated on everything. I can barely keep up with myself, these days.
Here's the skinny...
I can:
-Regulate my own body functions performed by my lungs, kidneys, intestines, etc. (HUGE deal)
-Jump (sorta- I have the landing down, the take-off is still kinda rough)
-Run (it ain't pretty, but I can kinda, in a weird way, do it)
-Ride a bike (I rode all by my self on Monday!)
-Stand all day long
-Walk for a few hours
-Go weeks without throwing up, getting a bloody nose, or coughing up small woodland creatures
-Be outside for more than 10 minutes without my skin cracking and falling off
I don't have to:
-Measure out every thing I eat
-Manage my blood sugar
-Do blood filtering very often
I still:
-Get winded easily
-Feel a buzzing in my toe at all times
-Have to watch what I eat
-Get infections a lot
-Probably can't eat that
-Have hope that I'm going to beat this thing
I am:
-The least moldy I've been (my fungus is dying off!)
-Getting physically stronger
-On normal Candida levels (my yeast is back in check!)
-Exhausted
-Quitting my day job (tomorrow's my last day)
-Starting a company with my business partner (we've been working on it for about a year, now it's kicking off)
-Moving to TX for a bit and then moving to LA at some point I told you big changes were coming...
-Grateful
-Blessed
I'm headed to Texas for a wedding this weekend, for a week. Then I'll be back in San Francisco for a week. Then I'm off to LA for a week or so. Then to Texas indefinitely.
There. Consider yourself updated.
Showing posts with label Take a chance. Show all posts
Showing posts with label Take a chance. Show all posts
Tuesday, October 9, 2012
Wednesday, July 25, 2012
Every moment we have to live our life is a blessing
Last Friday there was a terrible tragedy in Aurora, Colorado, when a young man entered a midnight viewing of the new Batman movie and opened fire, killing 12 people and injuring 50 others.
Days like those force me to remember September 1999, when the Wedgwood shooting happened in my hometown, to people I knew. 7 people died that day. Their loss ripped through our community and still reverberates in our hearts. Every time there's another shooting I jettison back to that day. To the weeks and months and years after it. I think of my good friend standing next to her best friend, watching her die. I remember the fear and the confusion and the sorrow.
My heart goes out to Aurora, Colorado. I can imagine what they're going through. I've seen it firsthand.
Among the victims last week were a six year old, three young men who died protecting their girlfriends, and a young woman named Jessica. There are things about each victim that tug at me, but the one that really got inside me is Jessica. Jessica was an aspiring journalist from Texas, but that's not what made her stand out to me. After reading this article on Jessica and then reading her blog about how she narrowly escaped another shooting just a few weeks before she died, I couldn't get her out of my head. I've been thinking about her and what she wrote ever since.
This passage keeps replaying in my head: "I say all the time that every moment we have to live our life is a blessing. So often I have found myself taking it for granted. Every hug from a family member. Every laugh we share with friends. Even the times of solitude are all blessings. Every second of every day is a gift. After Saturday evening, I know I truly understand how blessed I am for each second I am given."
We aren't promised tomorrow. Hell, we're not even promised this afternoon. As my BFF likes to remind me, I could survive with my illness for another 50 years, and she could step off a curb and get hit by a bus today. Nothing is guaranteed. We aren't promised any definite amount of time. The only thing we have is right now, this moment.
And a single moment can define our entire lives, or even snuff it out. Your life can be going in one direction and then suddenly turn on a dime. I'm not sure that I can believe that everything happens for a reason. I don't think that bad things happen to teach us a lesson, either. I do believe, however, that reason can come from every happening, and I do believe that when bad things happen, there are things we can take from the experience. When tragedy knocks us off our feet, we have a choice: let it break us or make us.
One of the reasons I love Batman is that he rises every time he falls. He has made a career out of turning his tragedies into triumphs. He doesn't have any special powers other than his own wits and perseverance, and he is a self made man. He took his tragic experience and used it to shed light in a world where darkness and loss and pain can blindside you. Most of all, he brings hope. He shows us that heroes really do exist. This is evidenced in the young men who saved their girlfriends. This is shown in the actor who portrays Batman onscreen going to visit the surviving victims in the hospital. This is displayed in the outpouring of love and support from around the world for Aurora, Colorado.
I wish it didn't take devastating losses for us to stop and count our blessings, to take stock of our lives, to seize the day. I wish it didn't take people dying for us to truly begin to live. Unfortunately, bad things happen. But good things can be created from the wreckage.
Each of us has it in us to be our own hero. Every one of us has the choice to sit down and live in fear or to stand up and live our lives. We all have the opportunity to spread light and love in this world. All of us owe it to ourselves, and especially to those who are no longer with us, to live each and every day to its fullest.
Like Jessica said, "every second of every day is a gift." Are we going to let it sit, unopened, on a shelf, or are we going to unwrap it and put it to good use?
To pull from several of my favorite phrases and forge one amalgamated saying, this is my advice: Life is a daring adventure, so live it like you're dying, and take a chance; every second is a make it or break it situation, so be here now, and make it count.
We owe it to those taken too soon, to live extra in their honor. So be a hero, be a blessing, be truly alive.
Days like those force me to remember September 1999, when the Wedgwood shooting happened in my hometown, to people I knew. 7 people died that day. Their loss ripped through our community and still reverberates in our hearts. Every time there's another shooting I jettison back to that day. To the weeks and months and years after it. I think of my good friend standing next to her best friend, watching her die. I remember the fear and the confusion and the sorrow.
My heart goes out to Aurora, Colorado. I can imagine what they're going through. I've seen it firsthand.
Among the victims last week were a six year old, three young men who died protecting their girlfriends, and a young woman named Jessica. There are things about each victim that tug at me, but the one that really got inside me is Jessica. Jessica was an aspiring journalist from Texas, but that's not what made her stand out to me. After reading this article on Jessica and then reading her blog about how she narrowly escaped another shooting just a few weeks before she died, I couldn't get her out of my head. I've been thinking about her and what she wrote ever since.
This passage keeps replaying in my head: "I say all the time that every moment we have to live our life is a blessing. So often I have found myself taking it for granted. Every hug from a family member. Every laugh we share with friends. Even the times of solitude are all blessings. Every second of every day is a gift. After Saturday evening, I know I truly understand how blessed I am for each second I am given."
We aren't promised tomorrow. Hell, we're not even promised this afternoon. As my BFF likes to remind me, I could survive with my illness for another 50 years, and she could step off a curb and get hit by a bus today. Nothing is guaranteed. We aren't promised any definite amount of time. The only thing we have is right now, this moment.
And a single moment can define our entire lives, or even snuff it out. Your life can be going in one direction and then suddenly turn on a dime. I'm not sure that I can believe that everything happens for a reason. I don't think that bad things happen to teach us a lesson, either. I do believe, however, that reason can come from every happening, and I do believe that when bad things happen, there are things we can take from the experience. When tragedy knocks us off our feet, we have a choice: let it break us or make us.
One of the reasons I love Batman is that he rises every time he falls. He has made a career out of turning his tragedies into triumphs. He doesn't have any special powers other than his own wits and perseverance, and he is a self made man. He took his tragic experience and used it to shed light in a world where darkness and loss and pain can blindside you. Most of all, he brings hope. He shows us that heroes really do exist. This is evidenced in the young men who saved their girlfriends. This is shown in the actor who portrays Batman onscreen going to visit the surviving victims in the hospital. This is displayed in the outpouring of love and support from around the world for Aurora, Colorado.
I wish it didn't take devastating losses for us to stop and count our blessings, to take stock of our lives, to seize the day. I wish it didn't take people dying for us to truly begin to live. Unfortunately, bad things happen. But good things can be created from the wreckage.
Each of us has it in us to be our own hero. Every one of us has the choice to sit down and live in fear or to stand up and live our lives. We all have the opportunity to spread light and love in this world. All of us owe it to ourselves, and especially to those who are no longer with us, to live each and every day to its fullest.
Like Jessica said, "every second of every day is a gift." Are we going to let it sit, unopened, on a shelf, or are we going to unwrap it and put it to good use?
To pull from several of my favorite phrases and forge one amalgamated saying, this is my advice: Life is a daring adventure, so live it like you're dying, and take a chance; every second is a make it or break it situation, so be here now, and make it count.
We owe it to those taken too soon, to live extra in their honor. So be a hero, be a blessing, be truly alive.
Saturday, August 6, 2011
Take a Chance, Write Your Own Life
It's always amazing to me how certain things pop up in our lives just at the moment they're needed/relevant.
Enter 14 year old Emily Qvistgaard. This amazing girl has end stage renal disease and is waiting for a transplant. Recently my friend Dave Tweedie was able to help make her Make-A- Wish come true: recording one of her own songs.
You can download this song free on iTunes :)
Her insight and happy disposition are inspiring. I cried like a baby watching that video. I think we can all take a page from her book.
The parts that got to me the most are:
"Love life. Love the way you live it
Don't try, just keep on breathing
Wishing on a shooting star"
"If I could get away
I'd run away
and stay away
I'd walk right out that door"
Knowing what having a chronic illness is like, I say "Amen" to that
"When I get a chance, you know I'll take a chance"
"You are the writer of your life and
You choose how you want the ending
Decide how you want to tell it
Shine on, there's nothing to it
Release all your weighted regrets
Just let nothing get your hopes down"
I really identified with this song and couldn't have heard it at a better time.
In this article it states "through diet, and a daily dose of several medicines, Qvistgaard was able to stabilize her condition.
She religiously watched the amount of protein and salt she ate. Today, she even gives herself daily injections and lives with less than one-quarter kidney function."
Wow. Different illnesses, but strikingly similar circumstances. If I start to feel sorry for myself about my situation I'll remember Emily, who at ten years old, faced what I didn't have to deal with until age twenty-four. I had more than twice the life she did before getting sick. This girl is incredible and inspiring. I wish I could give her one of my kidneys.
So in regard to kidneys and taking chances, I have some updates:
-My kidneys are functioning at 60% so I will be cutting back on the hemeoperfusion(blood filtering)again and seeing how my renal function fairs. We've slowly been tapering it down this year, from every two weeks, to recently, every 4 weeks. Now it will be every 8 weeks. Hallelujah!
-I will be weaning off the steroids over the next 6 weeks. I'm going to apologize in advance for the Hulk behavior that is likely to arise from this.
-After I've weaned from the steroids I will be taking part in a clinical trial and will be taking a new experimental oral drug. I'm taking a chance. It's my life and I'm choosing how to write it. (Thanks Emily)
The trial is 6 months long (from Sept-Mar), so it will bring me to the 2 year mark of getting sick and to my 27th birthday. Two pretty significant milestones, I must say.
During that time I will be monitored very closely, all my specialized medical care and prescriptions will be covered (this is a HUGE weight off my shoulders), AND they will be paying off most of the enormous debt I've already accrued. I really see this as an opportunity to get my life back and I'm willing to take the risks to have that.
Please, any positive energy (prayers, thoughts, mojo, etc) you can put toward things going well would really help. Put some out there for Emily, too. We need someone like her around.
Enter 14 year old Emily Qvistgaard. This amazing girl has end stage renal disease and is waiting for a transplant. Recently my friend Dave Tweedie was able to help make her Make-A- Wish come true: recording one of her own songs.
You can download this song free on iTunes :)
Her insight and happy disposition are inspiring. I cried like a baby watching that video. I think we can all take a page from her book.
The parts that got to me the most are:
"Love life. Love the way you live it
Don't try, just keep on breathing
Wishing on a shooting star"
"If I could get away
I'd run away
and stay away
I'd walk right out that door"
Knowing what having a chronic illness is like, I say "Amen" to that
"When I get a chance, you know I'll take a chance"
"You are the writer of your life and
You choose how you want the ending
Decide how you want to tell it
Shine on, there's nothing to it
Release all your weighted regrets
Just let nothing get your hopes down"
I really identified with this song and couldn't have heard it at a better time.
In this article it states "through diet, and a daily dose of several medicines, Qvistgaard was able to stabilize her condition.
She religiously watched the amount of protein and salt she ate. Today, she even gives herself daily injections and lives with less than one-quarter kidney function."
Wow. Different illnesses, but strikingly similar circumstances. If I start to feel sorry for myself about my situation I'll remember Emily, who at ten years old, faced what I didn't have to deal with until age twenty-four. I had more than twice the life she did before getting sick. This girl is incredible and inspiring. I wish I could give her one of my kidneys.
So in regard to kidneys and taking chances, I have some updates:
-My kidneys are functioning at 60% so I will be cutting back on the hemeoperfusion(blood filtering)again and seeing how my renal function fairs. We've slowly been tapering it down this year, from every two weeks, to recently, every 4 weeks. Now it will be every 8 weeks. Hallelujah!
-I will be weaning off the steroids over the next 6 weeks. I'm going to apologize in advance for the Hulk behavior that is likely to arise from this.
-After I've weaned from the steroids I will be taking part in a clinical trial and will be taking a new experimental oral drug. I'm taking a chance. It's my life and I'm choosing how to write it. (Thanks Emily)
The trial is 6 months long (from Sept-Mar), so it will bring me to the 2 year mark of getting sick and to my 27th birthday. Two pretty significant milestones, I must say.
During that time I will be monitored very closely, all my specialized medical care and prescriptions will be covered (this is a HUGE weight off my shoulders), AND they will be paying off most of the enormous debt I've already accrued. I really see this as an opportunity to get my life back and I'm willing to take the risks to have that.
Please, any positive energy (prayers, thoughts, mojo, etc) you can put toward things going well would really help. Put some out there for Emily, too. We need someone like her around.
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