Setting aside all arguments, not getting caught up in the understanding (or lack of), choosing to dwell on the hope of all hopes, resting in pure goodness. This is what my belief looks like today.
Today I am reminded that I am not the only one who has been amazed, bewildered and surprised after being disillusioned, despaired and demoralized.
Today is a good day.
Monday, April 9, 2012
Sunday, March 25, 2012
Tethered to reality
Today I went to lunch with friends to the Dam deli down by the Ocoee Dam desperately needing to get out of the house, tired of being inside. I wore my oxygen, carrying my portable tank like a backpacker out for a hike. I am accepting that I need O2 for comfort. I describe this like a luxury, an accessory, like I prefer my tennis shoes over my heels because they are more comfortable.
Before today I chose not to wear my oxygen, I didn't "need" it. I could compensate. I used to front; to make up for my shortness of breath by slowly walking. I would stop every 10 feet or so to catch my breath, standing still, trying to appear casual, looking closely at a bush or a sign, taking my time strolling. This used to be more comfortable for me for once I got where I was going, once I set down then the shortness of breath would go away and I would go about life like everyone else; Almost....... I got along fine as long as I did not move too much, talk too much or God help us all, laugh too much. Any of these activities could trigger a coughing fit that would violently shake, rattle and roll my body until everything settled down once more.
Fronting is not an option right now, strolling does not work, Walking for just a short distance leaves me gasping and coughing, not a pretty sight. So today I chose to wear the nasal cannula tethering me to earth, my lifeline that keeps me grounded. You can't avoid looking sick when you have O2 flowing up your nose. It's quite apparent something is wrong. The secret is out, all the world knows you are not right. I suppose I will get used to this new level of exposure. I struggle with people knowing something so personal about me so quickly, first impressions and all that. They see a sick woman.
I am sick AND I am so much more. After resisting for so long how sick I am slowly coming to terms. Again. I am at a new level of need, perhaps permanent, perhaps not, time will tell. May I accept reality as it. May I stay tethered, learning to live within my limitations and soar above the challenges at same time.
Before today I chose not to wear my oxygen, I didn't "need" it. I could compensate. I used to front; to make up for my shortness of breath by slowly walking. I would stop every 10 feet or so to catch my breath, standing still, trying to appear casual, looking closely at a bush or a sign, taking my time strolling. This used to be more comfortable for me for once I got where I was going, once I set down then the shortness of breath would go away and I would go about life like everyone else; Almost....... I got along fine as long as I did not move too much, talk too much or God help us all, laugh too much. Any of these activities could trigger a coughing fit that would violently shake, rattle and roll my body until everything settled down once more.
Fronting is not an option right now, strolling does not work, Walking for just a short distance leaves me gasping and coughing, not a pretty sight. So today I chose to wear the nasal cannula tethering me to earth, my lifeline that keeps me grounded. You can't avoid looking sick when you have O2 flowing up your nose. It's quite apparent something is wrong. The secret is out, all the world knows you are not right. I suppose I will get used to this new level of exposure. I struggle with people knowing something so personal about me so quickly, first impressions and all that. They see a sick woman.
I am sick AND I am so much more. After resisting for so long how sick I am slowly coming to terms. Again. I am at a new level of need, perhaps permanent, perhaps not, time will tell. May I accept reality as it. May I stay tethered, learning to live within my limitations and soar above the challenges at same time.
Tuesday, March 20, 2012
Sticky keys
The 'h" and "g" key sometimes stick on my lap top. I will be typing along not even realizin tat I am missin out on tese keys until i proof read later. It's better that way, if I proof read while I am typin then I will be constantly correctin myself. Te flow is missed.
Rite now I am missin the flow of my life. Seems like I am constantly stoppin, assessin, am I doing tis or that right. If I try harder, ponder more, smell te roses, rest, play, work and perfectly balance my life will I be appier? more satisfied? tranquil? ealty?
The last one is particularly tricky? ow much do I ave to work at being healthy. Work being te operative word here. Feels like I am always fitin a slippery slope of disease. I spent 3 weeks in te ospital in February. Wen I left I did not feel "riht" but tey had done all they could do; a full course of antibiotics.
Wehn I went for my follow-up appointment te culture came back positive. Te bacteria in my lungs was still there. Time to start anoter round of anitibiotics, tis time outpatient; tis time accompanied by a nitly fever, more congestion, lower oxyen saturation levels and no enery.
Today I laid on my deck all day, te oxygen teterin me like te man on te moon so I don't float away. I am very aware that I am limited rit now, tryin to live my life within different parameters. I can only ope that witout all my keys the messae will still come through; although I'm not quite sure what I am sayin. I'm just sayin.
Rite now I am missin the flow of my life. Seems like I am constantly stoppin, assessin, am I doing tis or that right. If I try harder, ponder more, smell te roses, rest, play, work and perfectly balance my life will I be appier? more satisfied? tranquil? ealty?
The last one is particularly tricky? ow much do I ave to work at being healthy. Work being te operative word here. Feels like I am always fitin a slippery slope of disease. I spent 3 weeks in te ospital in February. Wen I left I did not feel "riht" but tey had done all they could do; a full course of antibiotics.
Wehn I went for my follow-up appointment te culture came back positive. Te bacteria in my lungs was still there. Time to start anoter round of anitibiotics, tis time outpatient; tis time accompanied by a nitly fever, more congestion, lower oxyen saturation levels and no enery.
Today I laid on my deck all day, te oxygen teterin me like te man on te moon so I don't float away. I am very aware that I am limited rit now, tryin to live my life within different parameters. I can only ope that witout all my keys the messae will still come through; although I'm not quite sure what I am sayin. I'm just sayin.
Sunday, November 6, 2011
The Struggle
Sometimes You scare me by what You cause me to see
And I'm afraid of knowing who I am
Although You've changed me there's still a whole lot of old wineskin
And to open up would destroy the me I'm afraid to show
One part of me doesn't want to grow
But I'm tired of this lingering winter
Tired of ground so hard and cold
Plow Your way through, I'm asking You to, Jesus
Lord, You're my only hope
And I'm afraid of knowing who I am
Although You've changed me there's still a whole lot of old wineskin
And to open up would destroy the me I'm afraid to show
One part of me doesn't want to grow
But I'm tired of this lingering winter
Tired of ground so hard and cold
Plow Your way through, I'm asking You to, Jesus
Lord, You're my only hope
Without You . . . I can't face myself
My pride wants me to hide inside myself
But I love You an' I don't want our love put on the shelf
I'm tired of fighting to be who I am
Jesus, make me what You want me to be
Because of You I desire reality
A love for You is what I'm dying to receive
Though I hate what I am I understand what You've promised me
You've promised me freedom in the truth
But I can only face myself when I've faced You
An' I'll be ready to face myself when I face You
-REZ
Tuesday, September 20, 2011
THE CALL
Andrew.
Waiting.
Hoping.
Dying.
Waiting.
in ICU, out of ICU, home, in ICU, out again, home.
How much longer?
Time goes by.
How much longer?
Will too much time go by?
When will the music change? the beat of life to a distant drum that resounds in the night- thump, thump, thump, slowly it stops. Someone dies, someone gives.
THE CALL comes. Andrew lives. The beat continues as the lungs breathe new life into a tired body. Thump, thump, thump.
Waiting.
Hoping.
Dying.
Waiting.
in ICU, out of ICU, home, in ICU, out again, home.
How much longer?
Time goes by.
How much longer?
Will too much time go by?
When will the music change? the beat of life to a distant drum that resounds in the night- thump, thump, thump, slowly it stops. Someone dies, someone gives.
THE CALL comes. Andrew lives. The beat continues as the lungs breathe new life into a tired body. Thump, thump, thump.
Wednesday, September 7, 2011
Missing the Minutia
It's 2:30 in the morning. I'm eating potato chips and drinking coke. I'll probably be up another hour or two. I become nocturnal when I am in the hospital.
Tomorrow (which is actually today) I will sleep until noonish, awakened occasionally when the nurse changes my IV's, or my breakfast of rice crispies is delivered. I might even open an eye to the cleaning lady mopping my room but for the most part I will be out of it. I have even taken nebulized medicine while in slumberland; just put on the mask and breathe deep.
Staying up most of the night and sleeping during the day helps me. I know I'm not missing much at this hour. If I were home I would be asleep. My family is asleep. The pets are asleep, everyone's out.
During the day I am aware of what I am missing. I miss waking up next to my husband. I miss stepping outside to see what the weather is like, wondering what kind of day it's going to be. I miss the sweet faces of my kids. I miss not being able to go to my Uncle's funeral. I miss watching Austin at soccer practice. I miss our pets. I miss the mundane minutia of life.
So I sleep, to make the day go faster.
Tomorrow. I'm so thankful it will come again. Soon I will be home, the end is in sight.
In the meantime I am grateful for chips, soda, facebook, scrabble on line, the telephone, medicine that makes me feel better, email, blogs, good nurses, good doctors, a cool room, a comfortable bed with three pillows and the hypnotic hum of the IV machine.
Tomorrow (which is actually today) I will sleep until noonish, awakened occasionally when the nurse changes my IV's, or my breakfast of rice crispies is delivered. I might even open an eye to the cleaning lady mopping my room but for the most part I will be out of it. I have even taken nebulized medicine while in slumberland; just put on the mask and breathe deep.
Staying up most of the night and sleeping during the day helps me. I know I'm not missing much at this hour. If I were home I would be asleep. My family is asleep. The pets are asleep, everyone's out.
During the day I am aware of what I am missing. I miss waking up next to my husband. I miss stepping outside to see what the weather is like, wondering what kind of day it's going to be. I miss the sweet faces of my kids. I miss not being able to go to my Uncle's funeral. I miss watching Austin at soccer practice. I miss our pets. I miss the mundane minutia of life.
So I sleep, to make the day go faster.
Tomorrow. I'm so thankful it will come again. Soon I will be home, the end is in sight.
In the meantime I am grateful for chips, soda, facebook, scrabble on line, the telephone, medicine that makes me feel better, email, blogs, good nurses, good doctors, a cool room, a comfortable bed with three pillows and the hypnotic hum of the IV machine.
Monday, September 5, 2011
Life in the ICU.
One of the things I hate most about this disease is the lack of control I sometimes feel. Yes, I admit it, I like to be in control, master of my domain, grab life by the horns and ride into a glorious sunset. Psh....not happening today. Instead of watching fire works with my family from my hospital window, I am headed to ICU. Major disappointment.
I don't like to be in the intensive care unit, it's so, well, intense. It's a place where very sick people go, a place where people go but sometimes they don't come back; for goodness sake it's a place without wifi.
I need to change medications, the one I was using, colistin, was wreaking havoc with my kidneys. So now I will try zosyn, a drug in the penicillin family which I am allergic to.
The process of desensitizing involves introducing the offending drug to the body very slowly. The nurse has to change the IV bags every 15 minutes for 2 hours, then every 30 minutes, each time adding a little more medicine over a six hour period. I am hooked up to a heart monitor with 5 different lines attached to various parts of my body. I also have two IV lines and an oxygen monitor connected. All of this makes going to the bathroom quite the rigamarole.
With questionable kidney function they have a need to collect and measure my pee. So I have to aim and shoot into a small container called a hat while simultaneously holding onto the various chords that are attached to me, this is very discombobulating. Think about an octopus on crack squatting over a can and you get the not so pretty picture.
I don't like to be in the intensive care unit, it's so, well, intense. It's a place where very sick people go, a place where people go but sometimes they don't come back; for goodness sake it's a place without wifi.
I need to change medications, the one I was using, colistin, was wreaking havoc with my kidneys. So now I will try zosyn, a drug in the penicillin family which I am allergic to.
The process of desensitizing involves introducing the offending drug to the body very slowly. The nurse has to change the IV bags every 15 minutes for 2 hours, then every 30 minutes, each time adding a little more medicine over a six hour period. I am hooked up to a heart monitor with 5 different lines attached to various parts of my body. I also have two IV lines and an oxygen monitor connected. All of this makes going to the bathroom quite the rigamarole.
With questionable kidney function they have a need to collect and measure my pee. So I have to aim and shoot into a small container called a hat while simultaneously holding onto the various chords that are attached to me, this is very discombobulating. Think about an octopus on crack squatting over a can and you get the not so pretty picture.
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