Sesame Street...P is my favorite letter
Click on the above link to watch the video clip.
P P P P P P P
Click on the above link to watch the video clip.
P P P P P P P
As I was thinking about my goals for the next few months, I noticed that several of the words I was using start with the letter P. That made me think of Sesame Street and how each episode would feature one letter and one number.
That led me to spend about 5 hours watching old Sesame Street segments on You Tube. Best 5 hours I've spent in a while...
Anyway...
The next few months for me are going to be a time of working hard to get stronger and RUN AS MUCH AS POSSIBLE. I'm feeling a lot better after my recent round of rituxan infusions. So, as I was running recently, and thinking about how I needed to write a blog post to share what's been happening, the first words
that came to mind were...
that came to mind were...
Patience
My brothers and sisters, when you have many kinds of troubles, you should be full of joy, because you know that these troubles test your faith,
and this will give you patience.
~James 1:2-3
and this will give you patience.
~James 1:2-3
Persistence
Be alert. Continue strong in the faith.
Have courage, and be strong.
~ 1 Corinthians 16:13
Have courage, and be strong.
~ 1 Corinthians 16:13
Perseverance
For whatever is born of God overcomes the world. And this is the victory that has overcome the world—our faith.
~ 1 John 5:4
You are of God, little children, and have overcome them, because He who is in you is greater
than he who is in the world.
~ 1 John 4:4
For whatever is born of God overcomes the world. And this is the victory that has overcome the world—our faith.
~ 1 John 5:4
You are of God, little children, and have overcome them, because He who is in you is greater
than he who is in the world.
~ 1 John 4:4
It's going to take patience, persistence and perseverance to get myself back to the running level I had attained before the 2014 lupus war. Which wasn't really all that great, but it was something. It's not going to happen all at once, it's going to take a dedicated effort and...
some of it is really going to stink.
Pain.
Pain starts with P.
But, this is mostly good pain. It's mainly self-inflicted, lol. I'm hurting some because I'm pushing myself, not just because lupus is pushing me around. I do have to be careful not to push too much, because then lupus will
kick me when I'm down.
kick me when I'm down.
I also think this period of training is going to be a time of...
Praise
The Lord is my strength and shield.
I trust him, and he helps me.
I am very happy,
and I praise him with my song.
~ Psalm 28:7
The Lord is my strength and shield.
I trust him, and he helps me.
I am very happy,
and I praise him with my song.
~ Psalm 28:7
Prayer
Lord, I give myself to you.
~Psalm 25:1
Lord, I give myself to you.
~Psalm 25:1
Pacing
There are three things which are majestic in pace,
Yes, four which are stately in walk:
A lion, which is mighty among beasts
And does not turn away from any;
A greyhound,
A male goat also,
And a king whose troops are with him.
~ Proverbs 30:29-31
There are three things which are majestic in pace,
Yes, four which are stately in walk:
A lion, which is mighty among beasts
And does not turn away from any;
A greyhound,
A male goat also,
And a king whose troops are with him.
~ Proverbs 30:29-31
Peaceful sleep
(because I'm pooped)
"I can lie down and go to sleep, and I will wake up again, because the Lord gives me strength."
~ Psalm 3:5
(because I'm pooped)
"I can lie down and go to sleep, and I will wake up again, because the Lord gives me strength."
~ Psalm 3:5
I really hope it is NOT a time when
lupus is a P.I.T.A.
lupus is a P.I.T.A.
We won't be needing any PROTEIN in our PEE or blood in our POOP. We shall not be having any PLEURISY and our PANCREAS will be behaving. No PUS from sores in our mouth and nose. The PACE of our heart will stay in the normal range. And we won't be needing any PURPLE hands and feet. Our car won't have to stay PARKED because our brain will continue working better and we're not afraid to drive.
My most recent appointment with my rheumatologist brings up another P word...
Pause
I remember what the Lord did;
I remember the miracles you did long ago.
I think about all the things you did
and consider your deeds.
God, your ways are holy.
No god is as great as our God.
~Psalm 77:11-13
I remember what happened long ago;
I consider everything you have done.
I think about all you have made.
I lift my hands to you in prayer.
As a dry land needs rain, I thirst for you.
~ Psalm 143:5-6
I remember what the Lord did;
I remember the miracles you did long ago.
I think about all the things you did
and consider your deeds.
God, your ways are holy.
No god is as great as our God.
~Psalm 77:11-13
I remember what happened long ago;
I consider everything you have done.
I think about all you have made.
I lift my hands to you in prayer.
As a dry land needs rain, I thirst for you.
~ Psalm 143:5-6
Ben always tries to come with me to my appointments, infusions, injections, labs, etc.
At this appointment, I was telling my doc that I felt things were improving. She expressed that she was glad after the awful time I've had over the last year. Ben piped up and said, "Yes, she's doing better than she was. I thought for a while we really might lose her."
"I was worried about that myself," my doc replied.
That kind of hits home.
Click the above link to hear the song.
"Don't Fade On Me"
I remember you so clearly
The first one through the door
I return to find you drifting
Too far from the shore
I remember feeling this way
You can lose it without knowing
You wake up and you don't notice
Which way the wind is blowing
Don't fade
Don't fade on me
You were the one who made things different
You were the one who took me in
You were the one thing I could count on
Above all you were my friend
Don't fade
Don't fade on me
Well your clothes hang on a wire
And the sun is overhead
But today you are too weary
To even leave your bed
Was it love that took you under?
Or did you know too much?
Was it something you could picture?
But never could quite touch?
Don't fade
Don't fade on me
The first one through the door
I return to find you drifting
Too far from the shore
I remember feeling this way
You can lose it without knowing
You wake up and you don't notice
Which way the wind is blowing
Don't fade
Don't fade on me
You were the one who made things different
You were the one who took me in
You were the one thing I could count on
Above all you were my friend
Don't fade
Don't fade on me
Well your clothes hang on a wire
And the sun is overhead
But today you are too weary
To even leave your bed
Was it love that took you under?
Or did you know too much?
Was it something you could picture?
But never could quite touch?
Don't fade
Don't fade on me
So...I guess more than any other P word,
I'm PLEASED to be alive.
Psalm 116:1-9
I love the Lord, because He has heard
My voice and my supplications.
Because He has inclined His ear to me,
Therefore I will call upon Him as long as I live.
The pains of death surrounded me,
And the pangs of Sheol laid hold of me;
I found trouble and sorrow.
Then I called upon the name of the Lord:
“O Lord, I implore You, deliver my soul!”
Gracious is the Lord, and righteous;
Yes, our God is merciful.
The Lord preserves the simple;
I was brought low, and He saved me.
Return to your rest, O my soul,
For the Lord has dealt bountifully with you.
For You have delivered my soul from death,
My eyes from tears,
And my feet from falling.
I will walk before the Lord
In the land of the living.
Psalm 116:1-9
I love the Lord, because He has heard
My voice and my supplications.
Because He has inclined His ear to me,
Therefore I will call upon Him as long as I live.
The pains of death surrounded me,
And the pangs of Sheol laid hold of me;
I found trouble and sorrow.
Then I called upon the name of the Lord:
“O Lord, I implore You, deliver my soul!”
Gracious is the Lord, and righteous;
Yes, our God is merciful.
The Lord preserves the simple;
I was brought low, and He saved me.
Return to your rest, O my soul,
For the Lord has dealt bountifully with you.
For You have delivered my soul from death,
My eyes from tears,
And my feet from falling.
I will walk before the Lord
In the land of the living.
Click the above link to hear the song.
"I'm Alive"
It's been a long time since I watched these lights alone
I look around my life tonight
and you are gone
I might have done something to keep
you if I'd known
How unhappy you had become
While I was dreaming of you
With my heart in your hands
And I was following though
With my beautiful plans
Yeah now I'm rolling down this canyon drive
With your laughter in my head
I'm gonna have to block it
out somehow to survive
'cause those dreams are dead
And I'm alive
I want to go where I will
never hear your name
I want to lose my sorrow and be free again
And I know I've been insane
When I think of places I could have been
But I was dreaming of you
With my heart in your hands
And I was following through
With my beautiful plans
Standing here by the highway side
Watching these trucks blow by
Inches from my face
Yeah thinking 'bout the time I've wasted
And the pleasure we once tasted
Looking up and down this road
I've been here before
Can't be here no more
Yeah now I'm rolling down California five
With your laughter in my head
I'm gonna have to block it out
somehow to survive
'cause those dreams are dead
And I'm alive
Hey look at the way I believed in you
And loved you all these years
Now you can fill a swimming
pool with all my salty tears
If you'd have told me what was in your heart
Instead of all your lies
I thought that it would kill me
But I'm alive
Yeah, I'm alive
I look around my life tonight
and you are gone
I might have done something to keep
you if I'd known
How unhappy you had become
While I was dreaming of you
With my heart in your hands
And I was following though
With my beautiful plans
Yeah now I'm rolling down this canyon drive
With your laughter in my head
I'm gonna have to block it
out somehow to survive
'cause those dreams are dead
And I'm alive
I want to go where I will
never hear your name
I want to lose my sorrow and be free again
And I know I've been insane
When I think of places I could have been
But I was dreaming of you
With my heart in your hands
And I was following through
With my beautiful plans
Standing here by the highway side
Watching these trucks blow by
Inches from my face
Yeah thinking 'bout the time I've wasted
And the pleasure we once tasted
Looking up and down this road
I've been here before
Can't be here no more
Yeah now I'm rolling down California five
With your laughter in my head
I'm gonna have to block it out
somehow to survive
'cause those dreams are dead
And I'm alive
Hey look at the way I believed in you
And loved you all these years
Now you can fill a swimming
pool with all my salty tears
If you'd have told me what was in your heart
Instead of all your lies
I thought that it would kill me
But I'm alive
Yeah, I'm alive
About a week ago I was POWER-WASHING my PORCH and I started crying because I was so happy. I was so happy that I had the strength to wash down my filthy porch that didn't have a thing done to it last year because if I wasn't in the hospital or at a treatment or at a doctor's office or at a lab I was at home in my own bed.
I went to the nursery and PICKED out PLANTS! Ben POTTED them and PUT some of them in the ground for me.
They're so PRETTY!
Okay, okay...enough with the P words.
They're so PRETTY!
Okay, okay...enough with the P words.
I guess what I'm really trying to express is that I've learned some things from the journey I've been on over the last 18 months or so. I've learned to really appreciate the small things in life and the joy they bring.
Fflewddur Fflam says, "Life is a special occasion!"
Click the above link to hear the song.
JUST DO IT.
Well the moon moved past Nebraska
And spilled laughter on them cold
Dakota Hills
And angels danced on Jacob's stairs
Yeah, they danced on Jacob's stairs
There is this silence in the Badlands
And over Kansas the whole
universe was stilled
By the whisper of a prayer
The whisper of a prayer
And the single hawk bursts into flight
And in the east the whole
horizon is in flames
I feel thunder in the sky
I see the sky about to rain
And I hear the prairies
calling out Your name
I can feel the earth tremble
Beneath the rumbling of the buffalo hooves
And the fury in the pheasant's wings
And there's fury in a pheasant's wings
It tells me the Lord is in His temple
And there is still a faith
That can make the mountains move
And a love that can make the heavens ring
And I've seen love make heaven ring
Where the sacred rivers meet
Beneath the shadow of
the Keeper of the plains
I feel thunder in the sky
I see the sky about to rain
And I hear the prairies
calling out Your name
From the place where morning gathers
You can look sometimes forever 'til you see
What time may never know
What time may never know
How the Lord takes by its
corners this old world
And shakes us forward and shakes us free
To run wild with the hope
To run wild with the hope
The hope that this thirst will not last long
That it will soon drown in the song
Not sung in vain
And I feel thunder in the sky
I see the sky about to rain
And with the prairies I am
calling out Your name
Click the above link to hear the song.
"May I Suggest"
May I suggest
May I suggest to you
May I suggest this is the
best part of your life
May I suggest
This time is blessed for you
This time is blessed and
shining almost blinding bright
Just turn your head
And you'll begin to see
The thousand reasons that were
just beyond your sight
The reasons why
Why I suggest to you
Why I suggest this is the
best part of your life
There is a world
That's been addressed to you
Addressed to you, intended only for your eyes
A secret world
Like a treasure chest to you
Of private scenes and brilliant
dreams that mesmerize
A lover's trusting smile
A tiny baby's hands
The million stars that fill
the turning sky at night
Oh I suggest
Oh I suggest to you
Oh I suggest this is the
best part of your life
There is a hope
That's been expressed in you
The hope of seven generations, maybe more
And this is the faith
That they invest in you
It's that you'll do one better
than was done before
Inside you know
Inside you understand
Inside you know what's yours
to finally set right
And I suggest
And I suggest to you
And I suggest this is the best
part of your life
This is a song
Comes from the west to you
Comes from the west, comes from
the slowly setting sun
With a request
With a request of you
To see how very short the endless
days will run
And when they're gone
And when the dark descends
Oh we'd give anything for
one more hour of light
And I suggest this is the
best part of your life
Click the link to hear the song.
Oh, What a Beautiful Mornin'
Music by Richard Rodgers, lyric by Oscar Hammerstein II
Copyright © 1943 by Williamson Music
Copyright Renewed.
International Copyright Secured
ALL RIGHTS RESERVED.
There's a bright golden haze on the meadow,
There's a bright golden haze on the meadow,
The corn is as high as an elephant's eye,
An' it looks like its climbin'
clear up to the sky.
Chorus:
Oh what a beautiful morning,
Oh what a beautiful day,
I've got a wonderful feeling,
Everything's going my way.
All the cattle are standing like statues,
All the cattle are standing like statues,
They don't turn their heads as
they see me ride by.
But a little brown mav'rick is
winking her eye.
Repeat chorus
All the sounds of the earth are like music,
All the sounds of the earth are like music,
The breeze is so busy it don't miss a tree,
And an ol' Weepin' Willer is laughin' at me.
Repeat chorus
Click the link above to hear the song.
Sun is up, a new day is before you
Sun is up, wake your sleepy soul
Sun is up, hold on to what is yours
Take up your spade and break ground
Shake off your shoes,
Leave yesterday behind you
Shake off your shoes,
But forget not where you’ve been
Shake off your shoes,
Forgive and be forgiven
Take up your spade and break ground
Give thanks, for all that you’ve been given
Give thanks, for who you can become
Give thanks, for each moment and every crumb
Take up your spade and break ground
Break ground, break ground, break ground
"Just wasted an hour of my life staring at the wall.... The Facebook wall. I need to take a step back and re-analyze my life. I could have used that hour to stare at the sky."
~Joy Christina, via Facebook
"The Night Inside Me" by Jackson Browne
Click the link above to hear the song.
I used to lay out in a field
under the Milky Way
With everything that I was feeling
that I could not say
With every doubt and every sorrow
that was in my way
Tearing around inside my head
like it was there to stay
Night in my eyes, the night inside me
There where the shadows and
the night could hide me
Night in my eyes
Sky full of stars turning over me
Waiting for night to set me free
I caught a ride into the
city every chance I got
I wasn't sure there was a
name for the life I sought
Now I'm a long way gone down the life I got
I don't know how I believed
some of the things I thought
Night in my eyes, the night inside me
Here where the shadows gather to decide me
Night in my eyes
Out at the end of light and gravity
Waiting for night
It takes the night to clear
all of this mess away
The obligation, the burden
and the light of day
It takes the night to fall
between the world I obey
And a world where I hear angels play
Maybe I should go back to Spain
I walk around inside the questions of my day
I navigate the inner reaches of my disarray
I pass the altars where fools
and thieves hold sway
I wait for night to come and
lift this dread away
Night in my eyes, the night inside me
Here where the shadows and the
light divide me
Night in my eyes
Night full of promise and uncertainty
Waiting for night to set me free
I love to look at the stars at night.
That's something I need to do more often.
I also love to run, and running is something I always--always--thought that I could enjoy doing. Even back in my early teenage years, I could see myself becoming a runner. Why did it take me 39 years to work up the courage to try running? I enjoy it so much and think of the years of enjoyment I've missed because I was too self-conscious to try. I was too worried about what other people would think about me while I was 'trying to become a runner.'
Because I'd never done it before.
Because I'm not fast.
Because, at times,
I've been really heavy.
Since I've become a runner, I've discovered that when we people who run see someone else working to become a runner...WE THINK THEY ROCK. We don't think about how they look or how slow they go or how far they run or if they have to walk sometimes. We're just excited that they have the courage to listen to that little voice inside their head (and heart) that says, "try it...you might like it...you might love it...it might make you feel more alive..."
"I have come that they may have life, and that they may have it more abundantly."
John 10:10
Click the above link to hear the song.
I want to live in the world,
not inside my head
I want to live in the world, I want to stand and be counted
With the hopeful and the willing
With the open and the strong
With the voices in the darkness
Fashioning daylight out of song
And the millions of lovers
Alive in the world
I want to live in the world,
not behind some wall
I want to live in the world, where I will hear if another voice should call
To the prisoner inside me
To the captive of my doubt
Who among his fantasies harbors
the dream of breaking out
And taking his chances
Alive in the world
To open my eyes and wake
up alive in the world
To open my eyes and
finally arrive in the world
With its beauty and its cruelty
With its heartbreak and its joy
With it constantly giving birth to life and to forces that destroy
And the infinite power of change
Alive in the world
To open my eyes and wake up
alive in the world
To open my eyes and
finally arrive in the world
To open my eyes and wake up
alive in the world
To open my eyes and
finally arrive in the world
“And, while Cinderella and her prince
did live happily ever after,
the point, gentlemen,
is that they LIVED.”
~ Ever After, the movie
And so...may I take this opportunity to encourage you to try that thing you've been dreaming of doing! Try painting, or writing, or swimming, or photography. Eat that octopus! Buy those tap shoes! Book that trip! Volunteer at the library or humane society. Climb to the top of the lighthouse. Chase your buffalo.
Jump out of that airplane.
(well...that's something to think about, maybe...)
And if you find that it makes your soul smile...keep on doing it! Give God the glory for allowing you to experience it. Encourage other people to do the same.
Chase the Buffalo by Pierce Pettis
Click the above link to hear the song.
Indians of long ago
Followed after buffalo
They found a use for every part
Everything except his heart
I have wandered like those herds
Lost in music, lost in words
But the hunger leads me on
Seductive like a siren's song
And I can put my ear right to the ground
Just to hear those motors humming
The pounding sound of hoof beats
Like a thousand guitars strumming
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
People in these halls and bars
They wish on me like I'm a star
But I can never fill that hole
I am not their buffalo
And the gravity of the situation
makes me start to fall
My guitar like a fire alarm
is ringing off the wall
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
East of Eden, west of the night
The sun lies bleeding in a dying light
And the lady in the Cheyenne moon
Is singing out her mournful tune
So I chase the herds again
Smear the warpaint on my skin
Riding west with all my might
Where the sun is holding off the night
I cannot name this passion
Don't know where this stuff comes from
Maybe its a trail of tears
Or just a trail of crumbs
But there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
"The glory of God is man fully alive..."
~ Sara Groves
Click the above link to hear the song.
Spending my time sleep walking
Moving my mouth but not saying a thing
Hoping the changes would take
By working their way from the outside in
I was in love with an idea
Preoccupied with how a life should appear
Spending my time at the surface
Repairing the holes in a shiny veneer
There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
I'm going to live my life inspired
Look for the holy in the common place
Open the windows and feel all
that's honest and real
Until I'm truly amazed
And I'm going to feel all my emotions
I'm going to look you in the eyes
I'm going to listen and hear until it's finally clear
And it changes our lives
There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
Oh, the glory of God is man fully alive
Oh, the glory of God is man fully alive
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
Look what I've been missing...
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die,
discover that I had not lived."
~Henry David Thoreau
I totally love working with puppets, too, and I need to find a way to do more of that.
No, seriously.
I NEED TO FIND A WAY TO DO MORE OF THAT.
Here's me with my newest puppet friend...
I have photos of myself with puppets when I was just 3 or 4 years old. I used to take them with me in the car to keep myself company. (Literally, I kept myself company...lol.) My mother got me my first puppets.
She died when I was nine.
My step-mother also loved puppets. She used to put on special puppet show birthday parties at our local library. Now, that sounds a bit weird, doesn't it? But she did it anyway. Because it was fun for her. Because she enjoyed it. Because it made her happy to make little kids happy.
So she did it.
SHE DID IT.
She arranged for me to meet a woman who designed and worked with the puppets on Mr. Rogers Neighborhood.
I'll never forget that.
My step-mother definitely "threw some seeds of her own..."
"Into a dancer you have grown,
from a seed that someone else has thrown.
Go on ahead and throw some seeds
of your own..."
~ Jackson Browne
For a Dancer by Jackson Browne
Click the above link to hear the song.
Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real
by playing the clown
Now you're nowhere to be found
I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear
playing right in my ear
That I can't sing, I can't help listening
And I can't help feeling
stupid standing 'round
Crying as they ease you down
'Cause I know that you'd
rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)
Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
another's steps have grown
In the end there is one dance
you'll do alone
Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning
you might have found
Don't let the uncertainty turn you around
(The world keeps turning around and around)
Go on and make a joyful sound
Into a dancer you have grown from a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive and the time you go
May lie a reason you were alive
but you'll never know
Sun is up, wake your sleepy soul
Sun is up, hold on to what is yours
Take up your spade and break ground
Shake off your shoes,
Leave yesterday behind you
Shake off your shoes,
But forget not where you’ve been
Shake off your shoes,
Forgive and be forgiven
Take up your spade and break ground
Give thanks, for all that you’ve been given
Give thanks, for who you can become
Give thanks, for each moment and every crumb
Take up your spade and break ground
Break ground, break ground, break ground
"Just wasted an hour of my life staring at the wall.... The Facebook wall. I need to take a step back and re-analyze my life. I could have used that hour to stare at the sky."
~Joy Christina, via Facebook
"The Night Inside Me" by Jackson Browne
Click the link above to hear the song.
I used to lay out in a field
under the Milky Way
With everything that I was feeling
that I could not say
With every doubt and every sorrow
that was in my way
Tearing around inside my head
like it was there to stay
Night in my eyes, the night inside me
There where the shadows and
the night could hide me
Night in my eyes
Sky full of stars turning over me
Waiting for night to set me free
I caught a ride into the
city every chance I got
I wasn't sure there was a
name for the life I sought
Now I'm a long way gone down the life I got
I don't know how I believed
some of the things I thought
Night in my eyes, the night inside me
Here where the shadows gather to decide me
Night in my eyes
Out at the end of light and gravity
Waiting for night
It takes the night to clear
all of this mess away
The obligation, the burden
and the light of day
It takes the night to fall
between the world I obey
And a world where I hear angels play
Maybe I should go back to Spain
I walk around inside the questions of my day
I navigate the inner reaches of my disarray
I pass the altars where fools
and thieves hold sway
I wait for night to come and
lift this dread away
Night in my eyes, the night inside me
Here where the shadows and the
light divide me
Night in my eyes
Night full of promise and uncertainty
Waiting for night to set me free
I love to look at the stars at night.
That's something I need to do more often.
I also love to run, and running is something I always--always--thought that I could enjoy doing. Even back in my early teenage years, I could see myself becoming a runner. Why did it take me 39 years to work up the courage to try running? I enjoy it so much and think of the years of enjoyment I've missed because I was too self-conscious to try. I was too worried about what other people would think about me while I was 'trying to become a runner.'
Because I'd never done it before.
Because I'm not fast.
Because, at times,
I've been really heavy.
Since I've become a runner, I've discovered that when we people who run see someone else working to become a runner...WE THINK THEY ROCK. We don't think about how they look or how slow they go or how far they run or if they have to walk sometimes. We're just excited that they have the courage to listen to that little voice inside their head (and heart) that says, "try it...you might like it...you might love it...it might make you feel more alive..."
"I have come that they may have life, and that they may have it more abundantly."
John 10:10
Click the above link to hear the song.
I want to live in the world,
not inside my head
I want to live in the world, I want to stand and be counted
With the hopeful and the willing
With the open and the strong
With the voices in the darkness
Fashioning daylight out of song
And the millions of lovers
Alive in the world
I want to live in the world,
not behind some wall
I want to live in the world, where I will hear if another voice should call
To the prisoner inside me
To the captive of my doubt
Who among his fantasies harbors
the dream of breaking out
And taking his chances
Alive in the world
To open my eyes and wake
up alive in the world
To open my eyes and
finally arrive in the world
With its beauty and its cruelty
With its heartbreak and its joy
With it constantly giving birth to life and to forces that destroy
And the infinite power of change
Alive in the world
To open my eyes and wake up
alive in the world
To open my eyes and
finally arrive in the world
To open my eyes and wake up
alive in the world
To open my eyes and
finally arrive in the world
“And, while Cinderella and her prince
did live happily ever after,
the point, gentlemen,
is that they LIVED.”
~ Ever After, the movie
And so...may I take this opportunity to encourage you to try that thing you've been dreaming of doing! Try painting, or writing, or swimming, or photography. Eat that octopus! Buy those tap shoes! Book that trip! Volunteer at the library or humane society. Climb to the top of the lighthouse. Chase your buffalo.
Jump out of that airplane.
Jump out of that airplane.
(well...that's something to think about, maybe...)
And if you find that it makes your soul smile...keep on doing it! Give God the glory for allowing you to experience it. Encourage other people to do the same.
Chase the Buffalo by Pierce Pettis
Click the above link to hear the song.
Indians of long ago
Followed after buffalo
They found a use for every part
Everything except his heart
I have wandered like those herds
Lost in music, lost in words
But the hunger leads me on
Seductive like a siren's song
And I can put my ear right to the ground
Just to hear those motors humming
The pounding sound of hoof beats
Like a thousand guitars strumming
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
People in these halls and bars
They wish on me like I'm a star
But I can never fill that hole
I am not their buffalo
And the gravity of the situation
makes me start to fall
My guitar like a fire alarm
is ringing off the wall
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
East of Eden, west of the night
The sun lies bleeding in a dying light
And the lady in the Cheyenne moon
Is singing out her mournful tune
So I chase the herds again
Smear the warpaint on my skin
Riding west with all my might
Where the sun is holding off the night
I cannot name this passion
Don't know where this stuff comes from
Maybe its a trail of tears
Or just a trail of crumbs
But there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
Chase the Buffalo by Pierce Pettis
Click the above link to hear the song.
Indians of long ago
Followed after buffalo
They found a use for every part
Everything except his heart
I have wandered like those herds
Lost in music, lost in words
But the hunger leads me on
Seductive like a siren's song
And I can put my ear right to the ground
Just to hear those motors humming
The pounding sound of hoof beats
Like a thousand guitars strumming
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
People in these halls and bars
They wish on me like I'm a star
But I can never fill that hole
I am not their buffalo
And the gravity of the situation
makes me start to fall
My guitar like a fire alarm
is ringing off the wall
And there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
East of Eden, west of the night
The sun lies bleeding in a dying light
And the lady in the Cheyenne moon
Is singing out her mournful tune
So I chase the herds again
Smear the warpaint on my skin
Riding west with all my might
Where the sun is holding off the night
I cannot name this passion
Don't know where this stuff comes from
Maybe its a trail of tears
Or just a trail of crumbs
But there is music in all this
It is all material
Before the beauty melts like snow
Chase the buffalo
"The glory of God is man fully alive..."
~ Sara Groves
Click the above link to hear the song.
Spending my time sleep walking
Moving my mouth but not saying a thing
Hoping the changes would take
By working their way from the outside in
I was in love with an idea
Preoccupied with how a life should appear
Spending my time at the surface
Repairing the holes in a shiny veneer
There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
I'm going to live my life inspired
Look for the holy in the common place
Open the windows and feel all
that's honest and real
Until I'm truly amazed
And I'm going to feel all my emotions
I'm going to look you in the eyes
I'm going to listen and hear until it's finally clear
And it changes our lives
There are so many ways to hide
There are so many ways not to feel
There are so many ways to deny what is real
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
Oh, the glory of God is man fully alive
Oh, the glory of God is man fully alive
And I just showed up
For my own life
And I'm standing here taking it in
And it sure looks bright
Look what I've been missing...
"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die,
discover that I had not lived."
discover that I had not lived."
~Henry David Thoreau
I totally love working with puppets, too, and I need to find a way to do more of that.
No, seriously.
I NEED TO FIND A WAY TO DO MORE OF THAT.
Here's me with my newest puppet friend...
I have photos of myself with puppets when I was just 3 or 4 years old. I used to take them with me in the car to keep myself company. (Literally, I kept myself company...lol.) My mother got me my first puppets.
She died when I was nine.
My step-mother also loved puppets. She used to put on special puppet show birthday parties at our local library. Now, that sounds a bit weird, doesn't it? But she did it anyway. Because it was fun for her. Because she enjoyed it. Because it made her happy to make little kids happy.
So she did it.
SHE DID IT.
She arranged for me to meet a woman who designed and worked with the puppets on Mr. Rogers Neighborhood.
I'll never forget that.
My step-mother definitely "threw some seeds of her own..."
"Into a dancer you have grown,
from a seed that someone else has thrown.
Go on ahead and throw some seeds
of your own..."
~ Jackson Browne
For a Dancer by Jackson Browne
Click the above link to hear the song.
Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real
by playing the clown
Now you're nowhere to be found
I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear
playing right in my ear
That I can't sing, I can't help listening
And I can't help feeling
stupid standing 'round
Crying as they ease you down
'Cause I know that you'd
rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)
Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
another's steps have grown
In the end there is one dance
you'll do alone
Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning
you might have found
Don't let the uncertainty turn you around
(The world keeps turning around and around)
Go on and make a joyful sound
Into a dancer you have grown from a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive and the time you go
May lie a reason you were alive
but you'll never know
For a Dancer by Jackson Browne
Click the above link to hear the song.
Keep a fire burning in your eye
Pay attention to the open sky
You never know what will be coming down
I don't remember losing track of you
You were always dancing in and out of view
I must have thought you'd always be around
Always keeping things real
by playing the clown
Now you're nowhere to be found
I don't know what happens when people die
Can't seem to grasp it as hard as I try
It's like a song I can hear
playing right in my ear
That I can't sing, I can't help listening
And I can't help feeling
stupid standing 'round
Crying as they ease you down
'Cause I know that you'd
rather we were dancing
Dancing our sorrow away
(Right on dancing)
No matter what fate chooses to play
(There's nothing you can do about it anyway)
Just do the steps that you've been shown
By everyone you've ever known
Until the dance becomes your very own
No matter how close to yours
another's steps have grown
In the end there is one dance
you'll do alone
Keep a fire for the human race
Let your prayers go drifting into space
You never know what will be coming down
Perhaps a better world is drawing near
And just as easily it could all disappear
Along with whatever meaning
you might have found
Don't let the uncertainty turn you around
(The world keeps turning around and around)
Go on and make a joyful sound
Into a dancer you have grown from a seed somebody else has thrown
Go on ahead and throw some seeds of your own
And somewhere between the time you arrive and the time you go
May lie a reason you were alive
but you'll never know
I had rituxan infusions on April 24 and May 8.
These infusions take all day.
Seriously.
We leave our house around 5:30 a.m. and get back home around 6:00 p.m. I usually schedule the infusions for a Friday, so that Ben can take off work more easily to be with me for the infusion and then over the weekend. Saturday I don't feel too bad. Then Sunday...not so great. Monday...yikes. Yikes continues until about Thursday, when I feel...less like death. I'm super tired for the next week and then...it's time to do it all again. Eventually...about 25 days after the initial infusion, I start to feel more normal again. And then, about 5 weeks after the initial infusion...I feel like someone gave me the go juice! The rituxan really kicks in, and if I don't get any infections during the waiting time, I end up feeling really good for a while.
While we're talking rituxan, here's what ONE treatment costs...and I get 6 of these babies a year! Ridiculous!
Now, when I say I feel "really good," I don't mean I feel all better. I still have to deal with daily pain, fatigue, and sometimes flares. I have to deal with issues related to my kidneys, heart, lungs, blood. I have to have labs drawn. I have to take serious medication on a daily basis. I still have lupus. But compared to how I feel when the rituxan wears off...it's pretty much night and day.
Or at least 2:00 a.m. and 10:00 a.m. ;)
I still have days when I feel like this...
So anyway...I'm running again, for about three weeks now. I started with just walking a couple of miles, and I'm working in periods of running now. And also dance breaks.
And air guitar breaks.
My longest run thus far was 5.3 miles, and I did it with negative splits. In runner-talk, that means each mile got faster. Which is a good thing! I'm trying not to concentrate very much on my speed and just try to get my mileage built up again, but we runners are usually pretty curious about what our pace is.
Running, at times, is challenging enough by itself. Being a runner with lupus and hypoglycemia has its own particular set of challenges. There's the sun, which happens to be out a lot in the summer time. I'm photosensitive, which means the sun actually stimulates lupus activity in my body. So, in addition to a sunburn, getting too much sun can cause me to have fevers, rashes, joint pain, and inflammation and damage to other parts of my body like my lungs, heart, kidneys, brain...etc. The medications I take also make being out in the heat and sun tricky and sometimes dangerous. If my CNS involvement is more active, I have headaches, dizziness, blurry vision, weak parts of my body, etc. Not exactly conducive to training for races. Hypoglycemia can cause my blood sugar to plummet quickly into dangerous regions. This morning, for example, I ate peanut butter on a flax pita 15 minutes before I left to run. Lots of protein and some complex carbs. 20 minutes into my run, my sugar was 57. BIG FROWNIE FACE. I wear a monitor to alert me when it's falling quickly and I never leave home without my medical ID, phone, and about 20 pieces of hard candy. I never race without those items plus my medication list, water, some type of snack and an
emergency glucogen pen.
Maybe you've heard the saying,
"You don't quit when you're tired;
you quit when you're finished."
Well...sometimes you quit when you're tired.
Sometimes you never even start when you're tired.
Runners use the acronym DNF for races that we "Did Not Finish." Some of us have another set
of words for that acronym...
"Did Nothing Fatal."
Most runners train to make progress; keep getting faster and going farther. My training is basically to make up the ground I lose every time I flare and/or have treatments. If I can just maintain my mediocre pace and get back to the mileage level I was able to do before the most recent flare/treatment...
that's kind of progress for me.
In the coming months, I'm hoping to...
Continue building mileage and possibly increase
--or at least maintain--
my pace per mile.
Run the "Twilight 5 Miler" on July 10 in Morgantown.
Complete a half marathon in Columbus on August 9 (which has no time limit and is on a shady and FLAT path
next to a river.)
Take another round of rituxan infusions in
late August/early September.
Do another 5K in September, hopefully the Lupus Loop on September 19 in Pittsburgh.
Possibly do a half marathon or a ten miler at the end of September. That all depends on how much fitness I can regain between now and the next round of rituxan, and on how quickly my body bounces back after those treatments. So, that's a big if.
Do the EQT 10 Miler at the end of October in Pittsburgh.
That race has a strict time limit. I usually avoid races like that, but I REALLY want to run this one, as it's in Pittsburgh. I want to run those bridges! Anyway...I have four months to mentally prepare myself to finish last, or at least very near to the back of the pack. And that's ok. Who knows? Maybe I'll surprise myself.
Find a half marathon in November or early December. There are two I'm really interested in--
one in Rehobeth, DE, and one in Atlanta, GA.
Then it's time for another round of rituxan in late December. My doctor has decided to move the infusions to every four months. I had been getting them every six months. Around the end of month four, I was requiring a lot of extra steroids to help keep flares in check until the next rituxan infusion. The hope with getting them every four months is that I won't need as much extra steroids to get me through. Hopefully I won't experience such a severe "drop" in how I'm feeling every 4 months. Just a little dip.
I hope it's true.
I just started going to the gym twice a week, too, to lift weights. That seems to wear me out more than running. I'm also planning to start using my weight hula hoop (yes, that's a thing!) to help strengthen my core.
One of my favorite parts of returning home from a run through the neighborhood is that this little fella is always waiting for me at the door...
John Cougar Mellencamp
Click on the above link to hear the song.
You can laugh and joke and make
fun of your friends
Spin in the middle when your troubles begin
Take it nice and easy and always pretend
That you're cool, so cool, so cool
Say, I'm gonna hold onto that a while and I will and I'll be tame
Talk like a jerk on educated brain
Be an old girl drivin' the young boys insane
Be a joker, a preacher, it does not matter
Everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
Everyone just needs a hand to hold on to
Havin' good luck with your
financial situation
Play the ponies, be the
President of the United Nation
Go to work and be a Hollywood stud
Drive your four wheel drive
right into the mud, but
Everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
Everyone just needs a hand to hold on to
And in those hours when you're alone
And there's nobody there except yourself
I know it you wanna pick up the phone
And say, "Talk to me, talk to me
Somebody please talk to me", yeah
Oh yeah, everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
LUPUS AWARENESS MONTH 2015
LUPUS FOUNDATION OF AMERICAN AWARENESS VIDEO:
KNOW LUPUS VIDEO
click the above link to watch the lupus awareness video.
One ongoing issue is that my serum protein electrophoresis is consistently low. This could be from lupus making antibodies which are attacking the proteins in my blood. It could also be a result of lupus attacking my kidneys. I'm having more testing done to see if the cause can be determined. If lupus is attacking this component of my blood, there is a medication I can take which will replace the component. It's an IV treatment called IVIG.
I really hope that's not necessary.
Given that my legs often look like this...
Click the above link to hear the song.
Baby, I see this world has made you sad
Some people can be bad
The things they do, the things they say
But, baby, I'll wipe away those bitter tears
I'll chase away those restless fears
That turn your blue skies into gray
Why worry?
There should be laughter after pain
There should be sunshine after rain
These things have always been the same
So, why worry, now? Why worry, now?
Baby, when I get down I turn to you
And you make sense of what I do
And, no, it isn't hard to say
But, baby, just when this world
Seems mean and cold
Our love comes shining red and gold
And all the rest is by the way
Why worry?
There should be laughter after pain
There should be sunshine after rain
These things have always been the same
So why worry, now? Why worry, now?
These infusions take all day.
Seriously.
We leave our house around 5:30 a.m. and get back home around 6:00 p.m. I usually schedule the infusions for a Friday, so that Ben can take off work more easily to be with me for the infusion and then over the weekend. Saturday I don't feel too bad. Then Sunday...not so great. Monday...yikes. Yikes continues until about Thursday, when I feel...less like death. I'm super tired for the next week and then...it's time to do it all again. Eventually...about 25 days after the initial infusion, I start to feel more normal again. And then, about 5 weeks after the initial infusion...I feel like someone gave me the go juice! The rituxan really kicks in, and if I don't get any infections during the waiting time, I end up feeling really good for a while.
While we're talking rituxan, here's what ONE treatment costs...and I get 6 of these babies a year! Ridiculous!
Now, when I say I feel "really good," I don't mean I feel all better. I still have to deal with daily pain, fatigue, and sometimes flares. I have to deal with issues related to my kidneys, heart, lungs, blood. I have to have labs drawn. I have to take serious medication on a daily basis. I still have lupus. But compared to how I feel when the rituxan wears off...it's pretty much night and day.
Or at least 2:00 a.m. and 10:00 a.m. ;)
I still have days when I feel like this...
But, thankfully, I also have days when I feel like this...
So anyway...I'm running again, for about three weeks now. I started with just walking a couple of miles, and I'm working in periods of running now. And also dance breaks.
And air guitar breaks.
My longest run thus far was 5.3 miles, and I did it with negative splits. In runner-talk, that means each mile got faster. Which is a good thing! I'm trying not to concentrate very much on my speed and just try to get my mileage built up again, but we runners are usually pretty curious about what our pace is.
Running, at times, is challenging enough by itself. Being a runner with lupus and hypoglycemia has its own particular set of challenges. There's the sun, which happens to be out a lot in the summer time. I'm photosensitive, which means the sun actually stimulates lupus activity in my body. So, in addition to a sunburn, getting too much sun can cause me to have fevers, rashes, joint pain, and inflammation and damage to other parts of my body like my lungs, heart, kidneys, brain...etc. The medications I take also make being out in the heat and sun tricky and sometimes dangerous. If my CNS involvement is more active, I have headaches, dizziness, blurry vision, weak parts of my body, etc. Not exactly conducive to training for races. Hypoglycemia can cause my blood sugar to plummet quickly into dangerous regions. This morning, for example, I ate peanut butter on a flax pita 15 minutes before I left to run. Lots of protein and some complex carbs. 20 minutes into my run, my sugar was 57. BIG FROWNIE FACE. I wear a monitor to alert me when it's falling quickly and I never leave home without my medical ID, phone, and about 20 pieces of hard candy. I never race without those items plus my medication list, water, some type of snack and an
emergency glucogen pen.
Maybe you've heard the saying,
"You don't quit when you're tired;
you quit when you're finished."
Well...sometimes you quit when you're tired.
Sometimes you never even start when you're tired.
Runners use the acronym DNF for races that we "Did Not Finish." Some of us have another set
of words for that acronym...
"Did Nothing Fatal."
Most runners train to make progress; keep getting faster and going farther. My training is basically to make up the ground I lose every time I flare and/or have treatments. If I can just maintain my mediocre pace and get back to the mileage level I was able to do before the most recent flare/treatment...
that's kind of progress for me.
In the coming months, I'm hoping to...
Continue building mileage and possibly increase
--or at least maintain--
my pace per mile.
Run the "Twilight 5 Miler" on July 10 in Morgantown.
Complete a half marathon in Columbus on August 9 (which has no time limit and is on a shady and FLAT path
next to a river.)
Take another round of rituxan infusions in
late August/early September.
Do another 5K in September, hopefully the Lupus Loop on September 19 in Pittsburgh.
Possibly do a half marathon or a ten miler at the end of September. That all depends on how much fitness I can regain between now and the next round of rituxan, and on how quickly my body bounces back after those treatments. So, that's a big if.
Do the EQT 10 Miler at the end of October in Pittsburgh.
That race has a strict time limit. I usually avoid races like that, but I REALLY want to run this one, as it's in Pittsburgh. I want to run those bridges! Anyway...I have four months to mentally prepare myself to finish last, or at least very near to the back of the pack. And that's ok. Who knows? Maybe I'll surprise myself.
Find a half marathon in November or early December. There are two I'm really interested in--
one in Rehobeth, DE, and one in Atlanta, GA.
Then it's time for another round of rituxan in late December. My doctor has decided to move the infusions to every four months. I had been getting them every six months. Around the end of month four, I was requiring a lot of extra steroids to help keep flares in check until the next rituxan infusion. The hope with getting them every four months is that I won't need as much extra steroids to get me through. Hopefully I won't experience such a severe "drop" in how I'm feeling every 4 months. Just a little dip.
I hope it's true.
I just started going to the gym twice a week, too, to lift weights. That seems to wear me out more than running. I'm also planning to start using my weight hula hoop (yes, that's a thing!) to help strengthen my core.
One of my favorite parts of returning home from a run through the neighborhood is that this little fella is always waiting for me at the door...
In the last three months I've gained about 8-10 pounds. Which is a good thing. Never in my life have I been able to say that gaining weight is a good thing. And even though I know it's a good thing, sometimes it's still hard to see the number on the scale go up. I've always had a struggle with my weight. I've been 100 pounds and I've been 230 pounds. Both of those kind of stink,
but in very different ways.
click the above link to hear the song.
BOTH SIDES NOW by Joni Mitchell
Bows and flows of angel hair
and ice cream castles in the air
and feather canyons everywhere,
I've looked at clouds that way.
But now they only block the sun,
they rain and snow on everyone.
So many things I would have done
but clouds got in my way.
I've looked at clouds from both sides now,
from up and down, and still somehow
it's cloud illusions I recall.
I really don't know clouds at all.
Moons and Junes and ferris wheels,
the dizzy dancing way that you feel
as every fairy tale comes real; I've looked at love that way.
But now it's just another show.
You leave 'em laughing when you go
and if you care, don't let them know,
don't give yourself away.
I've looked at love from both sides now,
from give and take, and still somehow
it's love's illusions that I recall.
I really don't know love at all.
Tears and fears and feeling proud,
to say "I love you" right out loud,
dreams and schemes and circus crowds,
I've looked at life that way.
But now old friends are acting strange,
they shake their heads,
they say I've changed.
Something's lost but something's gained in living every day.
I've looked at life from both sides now,
from win and lose, and still somehow
it's life's illusions I recall.
I really don't know life at all.
Even now at ~116 pounds, I feel pudgy. I feel soft (which I really am. I need to build some muscle.) I realize that this could signal something very unhealthy, and I'm watching myself closely, as are Ben and a few friends. I've seen the number on the scale go up for no reason other than lupus and I've seen it go down for no reason other than lupus.
I guess it's the complete lack of control over it that is most frustrating. Even when you're doing everything right, medications and lupus itself
can make your weight rise or fall.
Which has a real impact on your self esteem, even though so, so, SO many people say it shouldn't.
Well, it does.
Click the above link to hear the song. Great live performance.
Joey
By Concrete Blonde
Joey, baby - don't get crazy
Detours, fences...I get defensive
I know you've heard it all before
So I don't say it anymore
I just stand by and let you
Fight your secret war
And though I used to wonder why
I used to cry till I was dry
Still sometimes I get a strange pain inside
Oh, Joey, if you're hurting so am I
Joey, honey - I got some money
All is forgiven. Listen, listen
But if I seem to be confused
I didn't mean to be with you
And when you said I scared you
Well I guess you scared me too
But we got lucky once before
And I don't want to close the door
And if you're somewhere out there
Passed out on the floor
Oh Joey, I'm not angry anymore
And if I seem to be confused
I didn't mean to be with you
And when you said I scared you
Well I guess you scared me too
But if it's love you're looking for
Then I can give a little more
And if you're somewhere drunk and
Passed out on the floor
Oh Joey, I'm not angry anymore
Angry anymore, angry anymore
Songwriters: Napolitano, Johnette Lin
© Sony/ATV Music Publishing LLC
For non-commercial use only.
"What else should I be? All apologies..."
~ Kurt Cobain
Click the above link to hear the song.
What else should I be
All apologies
What else could I say
Everyone is gay
What else could I write
I don't have the right
What else should I be
All apologies
In the sun
In the sun I feel as one
In the sun
In the sun
I'm married
Buried
I wish I was like you
Easily amused
Find my nest of salt
Everything is my fault
I'll take all the blame
Aqua sea foam shame
Sunburn with freeze burn
Choking on the ashes of her enemy
Click the above link to hear the song.
The warm water beads as it runs
down the curves
Of the beautiful surface so tan
She's polishing the Jaguar again
It hasn't run in a year or two
Nice car but the wheels don't move, anymore
Maybe she remembers, maybe
something's got her scared
It's too precious to be careless and it's finally been repaired
So you never see her drive it
She won't risk it any more
It's too easy to collide it
And it hurt too much before
Could it be that it's really just a vehicle
Standing like a statue all this time
Could it be, it's just a vehicle
That she shines
Looks good but she still feels blue
Great shape but she's not so new, anymore
She's always got her work out
Every day when she gets home
She can see her own reflection
In the mirror on the chrome
When she's feeling empty
Hollow at the core
She sees it's going nowhere
And she knows there must be more
Could it be that it's really just a vehicle
Standing like a statue all this time
Could it be, it's just a vehicle
That she shines
The warm water beads as it
runs down the curves
Of the beautiful surface so tan
She's polishing the Jaguar again
Could it be that it's really just a vehicle
Standing like a statue all this time
Could it be, it's just a vehicle
That she shines
Click the above link to hear the song.
Everyone I've ever known has wished me well
Anyway, that's how it seems,
it's hard to tell
Maybe people only ask you how you're doing
'Cause that's easier than letting on
how little they could care
But when you know that you've
got a real friend somewhere
Suddenly all the others are
so much easier to bear
Now to see things clear it's
hard enough, I know
While you're waiting for reality to show
Without dreaming of the perfect love
And holding it so far above
That if you stumbled onto someone real,
you'd never know
(You'd never know)
You could be with somebody who is lonely too
(Sometimes it doesn't show)
He might be trying to get across to you
(Words can be so slow)
When your own emptiness is
all that's getting through
There comes a point when you're not sure
why you're still talking
I passed that point long ago
(Long ago)
I'm so tired of all this circling
And all these glimpses of the end
(You know it's useless to pretend)
That's all the voices say, you'll go right on circling
Until you've found some kind of friend
Well, I saw you through
the laughter and the noise
You were talking with
the soldiers and the boys
While they scuffled for your weary smiles
I thought of all the empty miles
And the years that I've spent
looking for your eyes
(Looking for your eyes)
Now I'm sitting here wondering what to say
(That you might recognize)
Afraid that all these words
might scare you away
(To break through the disguise)
No one ever talks about
their feelings anyway
Without dressing them in dreams and laughter
I guess it's just too painful otherwise
Look, it's like you're standing in the window
Of a house nobody lives in
And I'm sitting in a car across the way
(Let's just say)
It's an early model Chevrolet
(Let's just say)
It's a warm and windy day
You go and pack your sorrow
The trash man comes tomorrow
Leave it at the curb and
we'll just roll away
"Think of me what you will,
I've got a little space to fill..."
~ Tom Petty
Click the above link to hear the song.
I no longer have an active GI bleed! After a year, it seems to have resolved. I think that has a lot to do with me being able to gain some weight and have an appetite again. I had an endoscopy in early May and everything looked good.
I'll be having some iron infusions in the next couple of months. Those are no big deal. They just keep me down for a day or two and then help me feel better by raising my RBC levels and increasing my energy.
FINALLY the sildenafil (revatio, AKA viagra) was approved to treat raynauds. My doc also wants me to try using pentoxifyline for raynauds. You would think that raynauds would not be as bad in the summer, but coming in and out of air conditioning can cause some really painful raynauds attacks. I'm that person who never goes anywhere without a sweater. I should really wear close-toed shoes and socks year-round, but...that is not happening!
Controlling my low blood sugar has continued to be a struggle. My endocrinologist suggested trying another medication--acarbose--in addition to metformin. A lot of folks assume I have diabetes when they learn I'm taking metformin. I DO NOT HAVE DIABETES. I have hyperinsulinemia, or over-production of insulin. Metformin is used to treat hyperinsulinemia. People with hyperinsulinemia overproduce insulin, and as a result, experience low blood sugar frequently because insulin is a hormone that naturally lowers blood glucose. Metformin reduces insulin levels and ultimately makes the pancreas use insulin efficiently. I eat a very low carbohydrate diet now. I miss eating a lot things that would normally be considered healthy items--things like rice, potatoes, fruits, cereals like granola, cornbread, super starchy veggies like corn, popcorn, pasta...and of course I miss things like pizza, bread, and chips and pretzels.
The numbness and loss of sensation in my left leg has been dramatically helped by rituxan, just as the neurologist expected. YAY! Weird, but yay!
My other CNS issues are much better since getting the rituxan as well. I'm driving again and having a conversation doesn't drain me. CNS involvement in lupus can make things like being in social situations, talking on the phone, or going to an event VERY stressful. It can be physically exhausting in addition to mentally exhausting. I hate to talk on the telephone. There is no visual when talking on the phone. I prefer texting most times, because I can read and re-read what I've "said" to make sure it's really what I meant.
One sad victim of my CNS crap...John Mellencamp. Apparently I purchased two tickets to hear him at a local concert hall in Pittsburgh. Two tickets in the SECOND ROW. And a parking pass. I came across these tickets on a Thursday in early May and got excited as I had completely forgotten buying them. Or considering buying them. I had completely forgotten about being excited to see Mellencamp play live. Or making my hubby a CD of Mellencamp songs to listen to for a few weeks so he could have a good time at the concert, too. My excitement over finding the tickets (in the envelope where I always keep all of our concert tickets) quickly faded...
I found the tickets on the 14th.
The concert was on the 12th.
Yeah...that wasn't a good day.
But the brain is functioning much better now. I've even been to the grocery store by myself!
John Cougar Mellencamp
Click on the above link to hear the song.
You can laugh and joke and make
fun of your friends
Spin in the middle when your troubles begin
Take it nice and easy and always pretend
That you're cool, so cool, so cool
Say, I'm gonna hold onto that a while and I will and I'll be tame
Talk like a jerk on educated brain
Be an old girl drivin' the young boys insane
Be a joker, a preacher, it does not matter
Everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
Everyone just needs a hand to hold on to
Havin' good luck with your
financial situation
Play the ponies, be the
President of the United Nation
Go to work and be a Hollywood stud
Drive your four wheel drive
right into the mud, but
Everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
Everyone just needs a hand to hold on to
And in those hours when you're alone
And there's nobody there except yourself
I know it you wanna pick up the phone
And say, "Talk to me, talk to me
Somebody please talk to me", yeah
Oh yeah, everyone needs a hand to hold on to
Everyone needs a hand to hold on to
Don't need to be no strong hand
Don't need to be no rich hand
LUPUS AWARENESS MONTH 2015
LUPUS FOUNDATION OF AMERICAN AWARENESS VIDEO:
KNOW LUPUS VIDEO
click the above link to watch the lupus awareness video.
One ongoing issue is that my serum protein electrophoresis is consistently low. This could be from lupus making antibodies which are attacking the proteins in my blood. It could also be a result of lupus attacking my kidneys. I'm having more testing done to see if the cause can be determined. If lupus is attacking this component of my blood, there is a medication I can take which will replace the component. It's an IV treatment called IVIG.
I really hope that's not necessary.
Given that my legs often look like this...
...I'm kind of thinking something is going on
with the kidneys.
"Two sparrows cost only a penny, but not even one of them can die without your Father’s knowing it. God even knows how many hairs are on your head. So don’t be afraid. You are worth much more than many sparrows."
~Matthew 10:29-31
Baby, I see this world has made you sad
Some people can be bad
The things they do, the things they say
But, baby, I'll wipe away those bitter tears
I'll chase away those restless fears
That turn your blue skies into gray
Why worry?
There should be laughter after pain
There should be sunshine after rain
These things have always been the same
So, why worry, now? Why worry, now?
Baby, when I get down I turn to you
And you make sense of what I do
And, no, it isn't hard to say
But, baby, just when this world
Seems mean and cold
Our love comes shining red and gold
And all the rest is by the way
Why worry?
There should be laughter after pain
There should be sunshine after rain
These things have always been the same
So why worry, now? Why worry, now?
This month is also my twentieth wedding anniversary!
Woo hoo!
I'm so very thankful for my wonderful husband, Ben. He's definitely the one God had planned for me.
I absolutely love being
Mrs. Benjamin Williamson.
I still think we had the coolest wedding invitations
I've ever seen...
I Carry Your Heart by
Michael Hedges (e.e. cummings)
Click the above link to hear this amazing song.
[i carry your heart with me(i carry it in]
By E. E. Cummings
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
Psalm 118:23
"This was the Lord’s doing;
It is marvelous in our eyes."
Here's one of our favorite passages from "The Lord of the Rings" by J.R.R. Tolkien
...yeah...we're weird like that...
Then the heart of Eowyn changed, or else at last she understood it. And suddenly, her winter passed,
and the sun shone on her.
Our little anniversary cake. We got Mickey and Minnie on our honeymoon. The goblets are from our wedding, too, but we forgot to use them on our anniversary...
"i carry your heart with me..."
Cutting the cake (and trying to take a selfie...)
Using the cutting set we used at our wedding and a cake plate we received as a gift.
To My Dear and Loving Husband
By Anne Bradstreet 1612–1672
If ever two were one, then surely we.
If ever man were loved by wife, then thee.
If ever wife was happy in a man,
Compare with me, ye women, if you can.
I prize thy love more than whole mines of gold,
Or all the riches that the East doth hold.
My love is such that rivers cannot quench,
Nor ought but love from thee give recompense.
Thy love is such I can no way repay;
The heavens reward thee manifold, I pray.
Then while we live, in love let’s so persever,
That when we live no more, we may live ever.
Thanks for joining me on the journey!
Until next time...
"It just takes some time
little girl you're in the middle of the ride.
Everything, everything will be just fine.
Everything, everything will be alright..."
Click on the above link to hear the song.
Psalm 63: 1-8
You, God, are my God,
earnestly I seek you;
I thirst for you,
my whole being longs for you,
in a dry and parched land
where there is no water.
I have seen you in the sanctuary
and beheld your power and your glory.
Because your love is better than life,
my lips will glorify you.
I will praise you as long as I live,
and in your name I will lift up my hands.
I will be fully satisfied as with the richest of foods;
with singing lips my mouth will praise you.
On my bed I remember you;
I think of you through the watches of the night.
Because you are my help,
I sing in the shadow of your wings.
I cling to you;
your right hand upholds me.
Farther On by Jackson Browne
Click the above link to hear the song
In my early years I hid my tears
And passed my days alone
A drift on an ocean of loneliness
My dreams like nets were thrown
To catch the love that I'd heard of
In books and films and songs
Now there's a world of illusion and fantasy
In the place where the real world belongs
Still I look for the beauty in songs
To fill my head and lead me on
Though my dreams have come up torn and empty
As many times as love has come and gone
To those gentle ones my memory runs
To the laughter we shared at the meals
I filled their kitchens and living rooms
With my schemes and my broken wheels
It was never clear how far or near
The gates to my citadel lay
They were cutting from stone
Some dreams of their own
But they listened to mine anyway
I'm not sure what I'm trying to say
It could be I've lost my way
Though I keep a watch over the distance
Heaven's no closer than it was yesterday
And the angels are older
They know not to wait up for the sun
They look over my shoulder
At the maps and the drawings
Of the journey I've begun
Now the distance leads me farther on
Though the reasons I once had are gone
I keep thinking I'll find what
I'm looking for
In the sand beneath the dawn
But the angels are older
They can see that the sun's setting fast
They look over my shoulder
At the vision of paradise
Contained in the light of the past
And they lay down behind me
To sleep beside the road till
the morning has come
Where they know they will find me
With my maps and my faith in the distance
Moving farther on
Gee... maybe this blog post should have been brought to you by the letters "J" and "B" since I've used so much Jackson Browne music...
Click the above link to hear the song
In my early years I hid my tears
And passed my days alone
A drift on an ocean of loneliness
My dreams like nets were thrown
To catch the love that I'd heard of
In books and films and songs
Now there's a world of illusion and fantasy
In the place where the real world belongs
Still I look for the beauty in songs
To fill my head and lead me on
Though my dreams have come up torn and empty
As many times as love has come and gone
To those gentle ones my memory runs
To the laughter we shared at the meals
I filled their kitchens and living rooms
With my schemes and my broken wheels
It was never clear how far or near
The gates to my citadel lay
They were cutting from stone
Some dreams of their own
But they listened to mine anyway
I'm not sure what I'm trying to say
It could be I've lost my way
Though I keep a watch over the distance
Heaven's no closer than it was yesterday
And the angels are older
They know not to wait up for the sun
They look over my shoulder
At the maps and the drawings
Of the journey I've begun
Now the distance leads me farther on
Though the reasons I once had are gone
I keep thinking I'll find what
I'm looking for
In the sand beneath the dawn
But the angels are older
They can see that the sun's setting fast
They look over my shoulder
At the vision of paradise
Contained in the light of the past
And they lay down behind me
To sleep beside the road till
the morning has come
Where they know they will find me
With my maps and my faith in the distance
Moving farther on
Gee... maybe this blog post should have been brought to you by the letters "J" and "B" since I've used so much Jackson Browne music...
Jonella, I loved and needed this one. Thank you. I love you so much. I have always loved I'm Alive but some of the music was new to me and so right on. Aunt Sarah
ReplyDelete