"Oh but I was so much
older then, I'm younger than that now..."
~ Bob Dylan, "My Back Pages"
(Please click the link above to hear the song)
(seriously...listen to the songs)
(please)
Here it is, the long-awaited (?)
year-end post...
THE BEST AND WORST AND EVERYTHING
IN BETWEEN OF 2014
A YEAR IN THE LIFE OF A
RUNNER WITH LUPUS
I'm sorry it's a bit late--we are almost half way into the first month of the NEW year--but, as usual, lupus doesn't work on a schedule. I decided to let the images and songs speak for themselves on this post. At the end, I'll give you a brief update about what's happening currently and what races/training I have planned. I encourage you to take the time to listen to the songs I've included.
If you recall (or you read my blog last year), 2014 started with a...well, with a lot of time in bed and with a lot of Kleenex. I had a double lumpectomy in September 2013. I broke my ankle in late Oct. 2013. My father died in Dec. 2013. I had two rituxan infusions in Dec. 2013.
2014 was one of the most difficult years I've endured. Lupus was very active and I was hospitalized numerous times.
2014 taught me more than any other year I've lived. God definitely had my attention.
The running victories I had in 2014 mean more to me than any other running achievements I've had. And by victories, I mean just getting out the door to run.
2014 changed me.
"Keep calm and enjoy every sandwich."
~ Warren Zevon
Rituxan, 12/13
John E. Wozny, 1945-2013
"This is not the hardest part of all.
This is just the seed that has to fall.
All our lives we till the ground,
until we lay our sorrows down and
watch the sky for rain...
There is more, more than all this pain,
more than all the falling down and the getting up again.
There is more, more than we can see
from our tiny vantage point
in this vast eternity.
There is more..."
Click the link to hear the song.
"Sometimes I call out Your name, but I
cannot find You.
I look for Your face, but You are not there.
By my sorrows, Lord, lift me to You...
Lift me up to Your side."
Click the link to hear the song.
I love you, LORD; you are my strength.
~ Psalm 18:1
2/14, Kidney Infection, Sinus Infection, Asthmatic Bronchitis, Gastroenteritis...
Click the link to hear the song.
"Break Ground" by Sara Watkins
Sun is up, a new day is before you
Sun is up, wake your sleepy soul
Sun is up, hold on to what is home
Take up your spade and break ground
Shake off your shoes,
Sun is up, wake your sleepy soul
Sun is up, hold on to what is home
Take up your spade and break ground
Shake off your shoes,
leave yesterday behind you
Shake off your shoes,
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
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
Take up your spade and break ground
Break ground
Click the link to hear the song.
4/14, Pleurisy and Lupus Flare...
5/14, Capital City Quarter Marathon...
5/14, Surgery...
5/14, Pneumonia and kidney infection...
5/14, Lupus Flare...
5/26/14 Kidney involvement with edema...
Click the link to hear the song.
6/14, IV Iron Infusions...
6/17/14, Rituxan infusion...
Click on the link to hear the song.
"I thought of my friends
and the troubles they have,
to keep me from thinking of mine"
~Warren Zevon
6/25/14, Lupus attacks my blood and digestive tract...
I'm placed in isolation for
my own protection...
"It was a slow day...it was a slow day..."
~ Paul Simon
Click the link to hear the song.
My skin turns the color of the
hospital walls...lol
To amuse myself, I wore a different race t-shirt each day I was inpatient...all two weeks...I knew those shirts would come in handy for something...
Click the link to listen to the song...then again, maybe you should skip this one... ;)
Everything had to be collected...everything.
Ben was the only approved visitor. He came to Pittsburgh every day...
during the height of hay season...
Click the link for the song. Don't miss this one.
"I talked to God, I knew He'd understand.
He said, "Stay by me, I'll be your
guiding hand.
But don't ask Me what I think of you.
I might not give the answer
that you want Me to."
Blessed are those who can laugh at themselves for they shall never
cease to be amused.
"I talked to God, I knew He'd understand.
He said, "Stay by me, I'll be your
guiding hand.
But don't ask Me what I think of you.
I might not give the answer
that you want Me to."
Blessed are those who can laugh at themselves for they shall never
cease to be amused.
Be joyful in hope,
patient in affliction,
faithful in prayer.
patient in affliction,
faithful in prayer.
~ Romans 12:12
Mid-July 2014, Hallucinations (visual, olfactory, auditory) and
CNS involvement...
I started physical therapy in late July 2014...
8/14 Continuous glucose monitor approved by insurance. 24 hour monitoring of blood sugar to avoid extreme hypoglycemic episodes. Fantastic tool.
Early August 2014, Abnormal Mamogram
"I can't deal with this right now. I'll just do a repeat mamo in a few months and see if
there are more changes then."
~ Jonella Williamson
Early August 2014...
Let's try a short run... :)
Click the link to hear the song.
Not clicking is NOT an option.
Thank you.
"The waiting is the hardest part.
Everyday you see one more card.
You take it on faith.
You take it from the heart.
The waiting is the hardest part."
~ Tom Petty
Late-August, 2014
Severe kidney infection
(Yep, that's pee.)
Raynauds flaring
Click the link to hear the song
"They say that these are not the best of times, but they're the only
times we've ever known...
For we are always what our
situations hand us--
it's either sadness or euphoria..."
~ Billy Joel
Early September 2014,
Diagnostic Colonoscopy
(my 3rd in 3 years)
Click the link to hear the hilarious song.
More running...less hopsitals...
Trying to remember who you were,
and then finding you're
not that person anymore...
Click the link to hear the song. Wait...get a kleenex first.
"Grief rides quietly on the passenger side,
unwanted company on a long, long drive.
It turns down the quiet songs
and turns up the din.
It goes where you go,
it's been where you've been.
Pushing your empty cart mile after mile leaves you weeping in the wilderness of the supermarket aisle...
In the late night kitchen light it sits in a chair, watching you pretend that it's not really there...
but it is...so it is, and you ask
are you predator or friend?
the future or the past?
It hands you your overcoat
and opens the door
you are learning the world again
just as before
at the first time was childhood
and now you are grown
broken wide open and cut to the bone..."
September 6, 2014
Pittsburgh Area Lupus Loop
Team A and J
Jonella and Ashely (J and A)
Click the link to hear the song.
Wow, look at the racing form on #370, lol! Hey, look at the joy on the face of #275!
Mid-September 2014, Heroes Run/Walk
Third place in my age group! :)
September 28, 2014, OCNJ 10 Miler,
Ocean City, NJ
I've got my favorite pink racing socks on.
I can't fail!
Praise the Lord!
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I'm alive!
Click the link to hear the song.
"I can't remember a trial or a pain He did not recycle to bring me gain..."
~ Sara Groves
Sisters of Saint Joseph Sole Sisters Run
October 4, 2014
Cape May Pointe, New Jersey
Vacation at the ocean
Sept/Oct 2014
"Sometimes I think of Abraham, how one star he saw had been lit for me.
He was a stranger in this land; I am that no less than he.
And on this road to righteousness, sometimes the climb can be so steep.
I may falter in my steps, but never beyond Your reach.
Oh God, You are my God, and I will ever praise You..."
~ Rich Mullins
Click the link to hear the song.
October 17 and 31, 2014, rituxan infusions
October 25, 2014, Jack o'lantern Jog
Miraculously, I'm able to complete this race and beat my time from last year! And only a week after the first of two infusions in this round of rituxan!
BUT...
November 9, 2014,
EQT Pittsburgh 10 Miler...
I opt out of this race due to side effects from the rituxan infusions.
Another runner used my bib...
"There is a girl in New York City who calls herself the human trampoline.
Sometimes when I'm falling, flying and tumbling in turmoil, I say, 'whoa, so this is what she means.'
She means we are bouncing into Graceland."
~ Paul Simon
Click the link to hear the song.
November 21, 2014
Daughters of Grace Christian Women's Choir 10th Anniversary Concert
November 29, 2014
I opt out of the Amish Country
Half Marathon due to bronchitis.
Click the link to hear the song.
"There is strength within the sorrow.
There is beauty in our tears.
And you meet us in our mourning
with a love that casts out fear.
You are working in our waiting.
You're sanctifying us.
When beyond our understanding
You're teaching us to trust.
Your plans are still to prosper.
You have not forgotten us.
You're with us in the fire and the flood.
You're faithful forever,
perfect in love.
You are sovereign over us...
You surround and You uphold me.
And Your promises are my delight...
Even what the enemy means for evil,
You turn it for our good,
You turn it for our good,
and for Your glory.
Even in the valleys You are faithful.
You're working for our good,
You're working for our good,
and for Your glory."
December 6, 2014
First Annual Ugly Holiday Sweater 5K
Morgantown, WV
IN THE POURING RAIN...
Ben was like, "you're kidding, right?!"
Then he looked into my eyes.
Then he got the car.
True love.
He knew this one was for
my mental health.
Click the link to hear the song.
"Well it's alright,
even if the sun don't shine.
Well it's alright,
we're going to the end of line."
~ The Traveling Wilburys
There was no flat.
There was up and down.
And up.
And more up.
December 20, 2014
Jeff Galloway 13.1 Virtual Half Marathon
On my treadmill.
Yes, I said
TREADMILL.
My 4th half marathon.
Click the link to hear the song.
"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 the link to hear the song
"I'll keep on healing all the scars that we've collected from the start, I'd rather this than live without you...
...sun sets on this ocean, never once on
my devotion..."
"I run in the path of Your commands for You have set my heart free."
~Psalm 119:32
Looking ahead to 2015...
click the link to hear the song
"I woke up this morning,
made a pot of coffee
I went out onto the stairs to sit in the sun
I haven't been myself,
I know I haven't been much fun
But I woke up this morning and the air tastes different
The fire in the gut
Kills the worm that haunts us
I'm all shook up, I'm all shook up
And I 'm gonna ride this feeling
as far as it goes
I'm gonna ride this feeling
I don't know, I don't know
whether I'm flying or falling
But I'm gonna ride this feeling..."
~Kate Miller Heidke
Thanks for joining me on the journey!
Blessings to you in 2015!
Here's the quick update I promised...
On Dec. 26, I started having abdominal and digestive "issues" (chronic nausea, stomach pain and diarrhea) which continue to today. I've been in the urgent care for fluids and meds once. I'll be seeing a gastroenterologist for testing for SIBO (small intestine bacterial overgrowth), possibly caused by the rituxan infusions. If SIBO is the culprit, strong antibiotics followed by daily probiotics are the treatment. I've lost 55 pounds this year and am getting to the place that losing much more would be unhealthy. I'm eating and drinking as much as I can, trying to avoid losing more weight and getting dehydrated.
I see my lupus doctor on January 13th. Of course, I'll be following up with: nephrology, endocrinology, gynecology(repeat mamo this month, too), hematology, urology, retinal specialist, blah, blah, blah...
The raynauds (circulatory problems in my small vessels in extremities, brain, etc.) has been really awful lately. To open the vessels and promote better blood flow, I'm going to try using...Viagra! Stay tuned for the update!
Rituxan is working well to decrease my joint pain. I can use a pencil with much less pain. Playing the piano doesn't hurt as much. The digestive issues make it hard for me accurately assess if rituxan is helping my fatigue.
I'm really weak from these ongoing digestive woes. So, running is on hold for now. Going to the gym is on hold, too. Doing much of anything is on hold, actually. Except shopping for running shoes and registering for races.
That I can do. :)
