HEY YOU GUYS...

The 2014 Pittsburgh Area Lupus Loop will be held on Saturday, September 6, at Station Square in Pittsburgh. Participants can walk, run, skate, walk their dog, or simply enjoy the nice view by the river! Everyone is welcome. Here is a link for registration. My friend Ashley and I have joined forces by creating Team A & J. If you decide to register, please enter your information and then click on “join a team” and choose Team A & J, so we’ll get credit for your registration. If you want to register, but don’t want to deal with the computer, please  email Jonella at jonella.williamson@yahoo.com

Here’s a link to the registration page: 

https://friendraising.donorpro.com/campaigns/32

We are also raising money to support the LOCAL lupus foundation. If you can’t participate, or if you want to make an additional donation over your registration fee (even a few dollars really helps!) please click the following link. BE SURE TO CLICK ON “SUPPORT ME” with your donation, so we get the credit. If you don’t want to fool with the computer, please give your donation to Jonella, or mail to her at 305 Dark Hollow Road, Waynesburg, PA 15370. Here’s the link to donate:

https://friendraising.donorpro.com/campaigns/32/personal/298

And…we had some team shirts made! You can get a shirt even if you are NOT participating in the loop. And you DO NOT have to purchase a shirt in order to participate. You can order multiple shirts with one shipping fee. If you register for the event, you will get a shirt from the lupus foundation. THAT IS DIFFERENT THAN THIS SHIRT. This is a shirt to wear to the event and also to wear to spread lupus awareness. ORDERS DUE BY AUGUST 15. If you don’t want to fool with the computer or use a credit card, you can email Jonella at jonella.williamson@yahoo.com, or msg me on Facebook, and I’ll help you place the order. Here’s the link to see/purchase the team shirts:

 https://www.booster.com/teamajshirts

Here's a definition of "sucktastic..." What does "sucktastic" mean? Those living with lupus often feel "less than fabulous." Actually, we often feel downright awful. But, it gets old always saying you feel horrible. We can't lie and say we're fantastic...but we can chuckle and say we're "sucktastic." In other words, we're not going to let this disease keep us down! 

We're still going to smile...and be a little snarky!

I hope to see some of you there! 

Thanks for your support!

An update...

Lupus is flaring, flaring, flaring! The joint pain 

is awful right now. 

Headaches, dizziness, fatigue, hypoglycemia, rashes, bruises, fevers...

I'm slowly resuming and building back up on dosage on my lupus medications. Rituxan is off the table for now. I will likely be resuming monthly IV infusions of a biologic drug called Benlysta. I wasn't super happy with this med in the past, but we'll see what happens this time. Previously it kept me in bed for about a week each month. We're going to try infusing it at a slower rate and adding additional premedications, with hopes that those steps will cut down on my side effects. 

My rheumatologist feels that lupus is responsible for the life-threatening neutropenia which hospitalized me in June/July. So far my blood counts are staying in the normal to low/normal range.

I'll be having a colonoscopy ASAP to investigate the colon inflammation and continued blood in my stool. That should be a joy...

 I'm also seeing a headache specialist this month at the UPMC Headache Clinic. 

I just finished an antibiotic for a UTI...and I still have symptoms. So, I'll need to see my urologist to investigate the possibility that lupus is attacking my bladder (lupus cystitis).

I'm going to begin wearing a continuous glucose monitor to help alert me before my blood sugar levels drop too low. I'll inject a sensor every week...

and wear a receiver which will record my blood sugar levels every five minutes, alerting  me to dangerous levels and trends.

I've started physical therapy. I'm using the treadmill, doing some exercises in the pool and lifting weights using machines. I've been able to run for short periods on the treadmill, and once outside. I'll jog for one or two minutes and then walk for the same. It's a start. Who knows what will happen with all those races I signed up for this fall...I'm not making that call yet. 

Honestly...I'm just tired and sore and kind of sick of being sick, you know? I'm sure part of the problem is that I want to do too much, too fast. 

But, PRAISE THE LORD for seeing me through the most recent battle, protecting me from serious infection while I essentially had NO white blood cells. 

People often give me compliments, saying things like, "You're always so strong," and "your faith is so solid," and "your courage and faithfulness in the face of a chronic disease are an inspiration to me." Of course, these compliments 

are humbling and I do praise God that He is 

working through me...

but...

"Do you ever just think, 'I'm fooling everyone?'"

~ Claire Colburn, Elizabethtown, the movie

"You have no idea..."

~ Drew Baylor, Elizabethtown, the moive

It's not really true, that I feel like I'm fooling everyone...but if anyone ever tells you they NEVER feel that way...they're lying.

Elizabethtown is full of great quotes. You should see it, if you're an adult. It's a Cameron Crow movie. I usually like his movies. 

Here are a few more of my favorite quotes from the film:

"Sadness is easier because it's surrender. I say, make time to dance alone with one 

hand waving free."

"No true fiasco ever began as a quest 

for mere adequacy."

"Trust me, everybody is less mysterious than 

they think they are."

"You have five minutes to wallow in the 

delicious misery. Enjoy it, embrace it, discard it 

... and proceed"

             Enjoy it...

                                                         embrace it...

                                                                                    discard it...

             and proceed.

   

 World Start Turning by Rick Springfield

click the link to listen to the song

 "World Start Turning"

I was born in the Southern Land 

Yeah, a million miles from America 

And whatever we wanted was just a matter of choosing 

And I was raised in the Great White Way 

Just like all those kids in America 

And the T.V. taught us to win with no thought of losing (then I woke up) 

This is the real world, the real town without pity 

This is the real world, in the shadow of the city 

This is the real wheel, 

You don't get too many spins 

This is the real deal, not everybody wins

Just another soul lost in America 

I was so frustrated and I got so lonely 

It almost took a miracle to open my eyes

World Start Turning (turn into the wind) 

World Start Turning (some things were never meant to be) 

I've been standing on the beach 

Crying to the raging sea 

I was falling, falling 

Heart start beating (turn into the wind) 

Heart start beating (some things were never meant to be) 

Made a promise to myself 

I'll never get that low again

We were taught if man believes in 

What he wants in America 

It's only a matter of time, just a matter of seasons 

But I walk through the houses of dreams that died 

I see the ones still trapped there the ones that tried 

But spent the rest of their lives wondering why 

And searching for reasons (and they never wake up)

This is the real world, you've got to know just when to bend 

Here in the world, precious little matters in the end 

This is the real world, the real town without pity 

This is the real world, in the shadow of the city

Just another soul lost in America 

I was so frustrated and I got so lonely 

It almost took a miracle to open up my eyes

World Start Turning (turn into the wind) 

World Start Turning (some things were never meant to be) 

I've been standing on the beach 

Crying to the raging sea 

I was falling, falling 

Heart start beating (turn into the wind) 

Heart start beating (some things were never meant to be) 

Made a promise to myself 

I'll never get that low again

You can't stop the world, cant' stop the world

Never could settle for where I was 

Too many places I was trying to be 

The times I succeeded and the times I failed 

You know that no one will remember but me

World Start Turning, World Start Turning 

I've been standing on the beach 

Crying to the raging sea 

I was falling, falling

Heart start beating (turn into the wind) 

Heart start beating (some things were never meant to be) 

Made a promise to myself 

I'll never get that low again… 

It's Always Something 

by Rick Springfield

click on the link to hear the song

I look around me and I see what I wanted and what I settled for
Yeah, I've got the heart of a Joan of Arc but the soul of a gigolo.
I've been good at snatching defeat from the jaws of victory.
Anytime I stopped to smell the roses they drew blood from me.
Do you know what I mean?
You never ever get away clean. But it's alright,
Yeah, touchdown, turn around, flag on the play.

It's always something, you know it is, it's always something,
It's always something, everyday, it's always something.

When I was a kid the teachers and the priests said,
"Why do you let him run around like that?"
My father said, "If the boy wants to play guitar, I say we let him."
Through the hard years he was my rock
when I just could not win.
So it goes y'know my father died
just before my leaky ship came in.

Do you know what I mean?
You never ever get away clean. Oh, but it's alright yeah.
Down one, homerun, your dog steals the ball.

I step up to the table in the middle of my life
and I take my cards and I check them twice.
I've got a killer hand and I'm ready to stake my claim,
the cops raid the game.

...it's always something

The End of the Line

click on the link to hear the song

Well it's all right, riding around in the breeze

Well it's all right, if you live the life you please

Well it's all right, doing the best you can

Well it's all right, as long as you lend a hand

You can sit around and wait for the phone to ring (End of the Line)

Waiting for someone to tell you everything (End of the Line)

Sit around and wonder what tomorrow will bring (End of the Line)

Maybe a diamond ring

Well it's all right, even if they say you're wrong

Well it's all right, sometimes you gotta be strong

Well it's all right, As long as you got somewhere to lay

Well it's all right, everyday is Judgment Day

Maybe somewhere down the road aways (End of the Line)

You'll think of me, wonder where I am these days (End of the Line)

Maybe somewhere down the road when somebody plays (End of the Line)

Purple haze

Well it's all right, even when push comes to shove

Well it's all right, if you got someone to love

Well it's all right, everything'll work out fine

Well it's all right, we're going to the end of the line

Don't have to be ashamed of the car I drive (End of the Line)

I'm glad to be here, happy to be alive (End of the Line)

It don't matter if you're by my side (End of the Line)

I'm satisfied

Well it's all right, even if you're old and gray

Well it's all right, you still got something to say

Well it's all right, remember to live and let live

Well it's all right, the best you can do is forgive

Well it's all right, riding around in the breeze

Well it's all right, if you live the life you please

Well it's all right, even if the sun don't shine

Well it's all right, we're going to 

the end of the line  

Thanks for joining me in the journey...

I Won't Back Down by Tom Petty

click the link to hear the song

"I Won't Back Down"

Well I won't back down, no I won't back down
You could stand me up at the gates of hell
But I won't back down

Gonna stand my ground, won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down

[Chorus:]
Hey baby, there ain't no easy way out
Hey I will stand my ground
And I won't back down

Well I know what's right, I got just one life
In a world that keeps on pushin' me around
But I'll stand my ground and I won't back down

Hey baby there ain't no easy way out
Hey I will stand my ground
And I won't back down
No, I won't back down