If I Stand by Rich Mullins

click on the above link to hear the song

And there's more that rises in the morning than the sun

And more that shines in the night than just the moon

It's more than just this fire here that keeps me warm

In a shelter that is larger than this room

And there's a loyalty that's deeper than mere sentiments

And a music higher than the songs that I can sing

The stuff of Earth competes for the allegiance

I owe only to the Giver of all good things

So if I stand, let me stand on the promise

that You will pull me through

And if I can't, let me fall on the grace

that first brought me to You

And if I sing let me sing for the joy

that has born in me these songs

And if I weep let it be as a man who is longing for his home

And there's more that dances on the prairies than the wind

And more that pulses in the ocean than the tide

There's a love that is fiercer than the love between friends

More gentle than a mother's, when her baby's at her side

And there's a loyalty that's deeper than mere sentiments

And a music higher than the songs that I can sing

The stuff of Earth competes for the allegiance

I owe only to the Giver of all good things

So if I stand, let me stand on the promise

that You will pull me through

And if I can't let me fall on the grace,

that first brought me to You

And if I sing let me sing for the joy

that has born in me these songs

And if I weep let it be as a man who is longing for his home

And if I stand, let me stand on the promise

that You will pull me through

And if I can't let me fall on the grace

that first brought me to You

And if I sing let me sing for the joy

that has born in me these songs

And if I weep let it be as a man who is longing for his home

( Please, please, please take the time to listen to the song links I add to my blog posts! It's important to me! :) )

Hey followers and friends! Sorry it has taken me so long to write this post. I've been busy...busy being sick, busy trying to live like I'm NOT sick, and busy recuperating from trying to live like I'm not sick. And busy going to doctor appointments...always going to doctor appointments.

SIGH

(I promise this post will get more positive...eventually)

Since my last update, I've spent some time thinking about all the things that didn't get done earlier this spring and summer, due to treatments and hospitalizations...

My porches, patio and siding never got cleaned and prepped for the summer.

Amazingly, summer came anyway!

And all the spiders are very happy.

My windows were not washed down at all this year. Amazingly, they still let some light inside.

My flower beds were never weeded or tended to, and the weeds took over.

Amazingly, most of my flowers still bloomed and some of the weeds even have pretty flowers on them. Except for the wild morning glory...that must be eradicated next spring before it eats everything else.

Speaking of something that eats everything else...

It was reported that a BEAR has been seen on our farm! I believe it! We have coyotes, bobcats, deer, skunks, opossums, raccoons, squirrels, rats, mice, moles, bats, etc. We've even had three sightings of a mountain lion.

Hee, hee, hee...

So let's talk about one of my favorite things first...

RUNNING UPDATE

In mid-July I began taking physical therapy to build my strength after everything that happened earlier this spring/summer. That included beginning to run again...slowly.

By the beginning of August, I was doing a little more running and started to believe I might be able to meet some of my race goals for this fall.

First on my race calendar was the First Annual Bituminous Coal Show 5K, in Carmichaels. Knowing this was a small, hometown race, (I was raised in Carmichaels and am a former Coal Queen) I was comfortable with just finishing, no time goal. I knew there would be lots of folks walking as well as running, so I decided to sign up and try to have fun.

Unfortunately, (or maybe fortunately...stay with me here...) the first thing to greet me was discouragement. It came in the form of a casual acquaintance being the first person to see me at the packet pick up about an hour before the race (where you get your numbers to pin on, free t-shirts, etc.) I said, "Hi," with a big smile. This person said, in a very disapproving voice, "Oh, Jonella. I'm shocked to see you here. You've been on our church prayer list and now you're doing a 5K?" It might not have been what this person intended, but what I "heard" was, "Oh, Jonella. We've been praying for you needlessly. How misleading of you to act sick enough to need prayer."

INSTANT DEFLATION...

I wanted to shout, "Yes! Isn't it great! God is so good! He's helping me get stronger and I knew this would be an ENCOURAGING place to get back in the running game," but instead, I just said, "Oh, well thanks for the prayers. I've been really sick, but I'm working hard to get stronger."

And that was it. I don't think this person meant to offend me or hurt me, but they did.
I cried while I was warming up.

BUT...I ran the majority of that race, finished strong and felt triumphant afterward. I can't wait to do it again next year! It was well-organized and a great course through my hometown.

And the more I thought about the effect this person's words had on me, the more the realization sank in that our words really, REALLY matter. And it's not just WHAT we say, but HOW we say it. I don't want to be a discouragement to someone else, even on accident. This experience is helping me to be more intentional and careful with my words.

Later in August, I had a great training run in the rain...

I'm soaking wet in this photo. Isn't that great?!?!

The 2014 Pittsburgh Area Lupus Loop was next on the race calendar, and it was an event very dear to my heart. My friend, Ashley, and I formed Team A & J for the event. I'm so pleased to report that our team was one of the TOP fundraisers for the event! We raised over $2000 for the local chapter of the Lupus Foundation! Thank you SO SO SO much to all of those who donated and participated! We had a great turn out for our team.

Team A & J (with about 6 team members missing...)

At the start line with Kim and Jackson. Jackson won a first place medal in his age division and got his photo taken with Pittsburgh Steeler Kelvin Beechum!

TEAM A & J (Jonella and Ashley) in our team t-shirts!

What we didn't have was great weather. It was SUPER humid and hot and sunny. A lot of participants (this girl included) got dehydrated and ill from too much sun. *Note to Lupus Foundation: If you're going to hold an event to raise awareness and support for people who suffer from a disease which limits them from being able to be in the sun--you might want to choose a venue other than a treeless path right next to a river and you might want to begin the event EARLIER in the morning and ON TIME and at a DIFFERENT time of year. Thank you kindly. :)

I participated in another local 5K/15K, the Greene River Trail Heroes Run/Walk. It was a fantastic experience. The weather was great! The event was well-organized and raised money for a scholarship fund in memory of two local soldiers who were killed in foreign conflicts. And, I even placed third in my age group! Woo-hoo!

I had a beautiful 8.4 mile training run the weekend before we went on vacation to NJ. A heron followed me. I saw him three times! I also had some deer run with me for a while and then watch me run by them. I could have petted them. And when I got back home, I still had a little fuel in the tank, which was a great feeling!

Follow the Heron Home

click the link to listen to this song

The back of the winter is broken
And light lingers long by the door
And the seeds of the summer have spoken
In gowans that bloom on the shore

CHORUS
By night and day we'll sport and we'll play
And delight as the dawn dances over the bay
Sleep blows the breath of the morning away
And we follow the heron home

In darkness we cradled our sorrow
And stoked all our fires with fear
Now these bones that lie empty and hollow
Are ready for gladness to cheer

CHORUS

So long may you sing of the salmon
And the snow scented sounds of your home
While the north wind delivers its sermon
Of ice and salt water and stone

While we were on vacation in southern NJ, I had some wonderful times running along the ocean, on the boardwalk. Even though I had some persistent low blood sugar issues, I handled those by walking when necessary and stopping when absolutely necessary (and constantly eating life savers during all my runs.) Ben rode his bike while I ran. I loved that!

The first of two planned "vacation" races was the Ocean City, New Jersey 10 Miler. This was just after we arrived in NJ. The weather was working against me again this day, but I'm super proud (and thankful to God) to say that I finished AND under my time goal! Over two miles of this race was over and back a huge and steep bridge. It was beautiful from the top, and very beautiful to run DOWN the bridge TWICE.

Running along the OCNJ Boardwalk for miles 6.5 to 10.

Before the race...

After the race!

Official finish line photo!

I was also using this race as a kind of "tester" for the Pittsburgh EQT 10 Miler, which I hope to do in November. That race has a time limit of no slower than a 15 minute per mile pace. I was able to stay well under that pace during the OCNJ 10 Miler, and now I feel much more confident about the race in November, which will undoubtedly be cooler!

Next up in NJ was the Sisters of Saint Joseph Sole Sisters Nun Run 5K. I've done this race before, and I really enjoy the course and the cause.

St. Mary's by the Sea is an ocean front retreat center operated by the Sisters.

Here's me, coming down the home stretch. It was super humid that morning, but any run by the ocean is a good run!

Two days later, I took advantage of the chance for one more long run at the ocean. Ben rode and I ran 9.3 miles. It was a beautiful morning, cloudy and breezy, but not too warm. I'm sure Ben rode at least 15 miles, with all of his doubling back to check on me, but we both made it! Then we devoured our breakfast and had a nice, lazy afternoon.

After returning home, I had opportunity for one more long training run (8 miles) in preparation for the upcoming races I'm hoping to do. I only had time for one more long run because I'm having rituxan infusions again on Oct. 17 and 31, and I really don't expect to be able to run much at all between Oct 17 and Nov 5 or so. It would be great if I can, but I'm not banking on it.

Upcoming are:

October 25, The Jack o'lantern jog (I'm uncertain as to whether I'll be able to participate in this one, as it's right in the middle of my treatments, but I'm going to try. It can be walked, if necessary.)

November 9, The Pittsburgh EQT 10 Miler (again, there's a little uncertainty here, because this race is 8 days after my second rituxan infusion, but I'm hoping for the best!)

November 30, The Amish Country Half Marathon in Berlin, Ohio. This race has NO TIME LIMIT! Woo-hoo! If I'm last, BIG DEAL! But, I'm hoping I'll be surprised with my results.

And, during my first rituxan infusion, I carried on my tradition of signing up for races while getting treatments by registering for the Ugly Sweater 5K, the first Saturday in December, in Morgantown, WV.

Now, I must procure an ugly sweater...

Beyond that, I don't have race plans yet, other than to do the Pittsburgh Half Marathon in May. I'm sure I'll find some other "mischief" to register for, though.

Self Portrait by Stephanie Smith

click the link to listen to the song

All of these dreams in my head keep spinning round

I'm grabby my paper and pencil to pin 'em down

I'll sketch my world as a prettier place draw myself with a smiley face

And make this picture perfect

But all of these lines on my page won't mean anything

Until i learn to erase the ones that I don't need

I'm covering up the stupid mistakes and starting over and over again

To make this picture perfect (yeah, yeah)

I'll start with where I'm standing now

And begin shaping where I wanna be

No one can tear my picture down

Because it's me and as long as I'm still proud of this self portrait I'm creating I'm doing fine

Yeah, I'm doing fine, yeah

Every now and again someone comes along

They try to box me into a corner I've drawn

Pushing the walls down, I'm struggling free

Makes me strong so I can keep making this picture perfect (yeah, yeah)

I'll start with where I'm standing now

And begin shaping where I wanna be

No one can tear my picture down

Because it's me and as long as I'm still proud of this self portrait I'm creating I'm doing fine

Yeah, I'm doing fine, yeah

What I'm sketching doesn't have to be anything facy, no

I'm just shaping stronger sides of me, of me, of me, yeah yeah yeah

I'll start with where I'm standing now

and begin shaping where I wanna be

No one can tear my picture down

because it's me and as long as I'm still proud of this self portrait I'm creating I'm doing fine

yeah, I'm doing fine, yeah

I'm doing fine, yeah

I am doing fine

I'm doing fine

Sometimes while I'm out running through the neighborhood, I get the feeling that some folks are heckling me, even if they don't say it out loud. People can say a lot with their eyes...especially when they roll them! Some of these folks are teenagers playing basketball or people washing their cars or mowing their lawns or driving around me. Maybe they just think I'm weird for running up and down their street six times on a Saturday morning as I run my loop. Inside, I tell them, "well, maybe you can run faster than me for a while, but I have no doubt that I can run farther." Or, maybe they just think, "Wow, lady. The only way I would run as much as you do was if something that wanted to eat me was chasing me." Or, maybe they aren't paying any attention to me at all. I hope they are, but not so they notice "me," necessarily. I want them to see me hard at it, in good weather and bad weather, when it's cold, again and again and maybe that will make them want to try something that seems out of their reach right now.

It's difficult for me to explain to people how I can have lupus, and be really, REALLY sick sometimes, and other times I am able to run (albeit rather slowly) 8 or 10 miles (or more!) I know I've shared feelings about this before. I don't have kids, so I'm not expending energy on their care. I don't work full time, so I'm not expending energy on a 40+ hour-a-week job. I feel like running IS part of my job, part of my calling. And there are LOTS and LOTS of times when I cannot run due to lupus. Running gives me a chance to karate kick lupus right in the mouth! I don't always win that fight, but sometimes I do!

Recently, someone told me it was good to see me out (at a community event) and that it wasn't good for me to "lay in bed all day." NO KIDDING. It is for moments like these that I want to start wearing my Garmin watch 24/7. (A Garmin is a watch that keeps track of my miles run, pace, record times, etc.) On that particular morning, I had run 6 miles the night before, which I promptly shared.

"That's good. You need to stay active."

Yep, I know, I do, I try.

Sometimes I can't.

"I'm like James Brown, only white and [smaller]. All I want to do is

jump and holler..."

~ Hayes Carll

"I want to run like the lions released from the cages, released from the rages burning in my heart tonight..."

~ Little Steven Van Zandt

No, not really...well, not usually...

ha ha ha

Seriously, though, I'm always thankful for the opportunity to raise awareness of lupus. I was invited to share with a ladies group at a local church recently, and it was a great experience. I hope I get more chances like this to share in the future.

Thanks for listening ladies!

So, what's up lupus wise?

As I mentioned, I'm having two more rituxan infusions on October 17 (4 days ago) and October 31.

This is a strong medication which destroys B cells. It's used for cancer treatment, as well as to treat some autoimmune diseases like lupus and rheumatoid arthritis. The infusions put me in bed for around a week. The infusions themselves take all day (8+ hours generally). The 18th, I felt really tired, but not horrible. The 19th and 20th, I really wasn't able to get out of bed. Today, the 21st, I've been able to sit here at the computer, with rest breaks in between. So, that's progress. Being around any kind of infections would be very, very dangerous for me while I'm taking these treatments (and for a few weeks after.) Thankfully, rituxan is given in two infusion, two weeks apart, every 4-6 months, for a total of 4-6 infusions per year.

If you remember, in my last post, back in August, I shared that I would likely be resuming a medication called Benlysta, which is taken my IV on a monthly basis. I took this medication for a year, previously, and didn't feel it did much for my joint pain and cognitive issues, although it did help my fatigue somewhat. It also put me in bed for a week EVERY MONTH, which was no fun. I was NOT looking forward to taking it again, but after the severe neutropenia this summer following a rituxan infusion in June, my doc was not sure I should be taking rituxan anymore at all. I also have a mild allergic reaction each time I get rituxan, which is a bit concerning.

I had been praying about what course to take with my treatments, as I felt so unsettled about the Benlysta. Finally, I really felt God telling me that I needed to approach my doctor with my honest feelings about giving rituxan one more try. So, I did contact her. I even told her about how important my faith is to me, and that I had been praying about direction with regard to treatments.

And...

my doctor agreed to try the rituxan again! She told me she did NOT feel the rituxan caused the neutropenia. She feels that a lupus flare attacked my white blood cells and drained my neutrophils.

So, we're trying the rituxan again. We've made some changes regarding the speed of the infusion and the premedications I receive. I'm getting weekly blood checks, and if I experience the neutropenia again, then it's adios rituxan. So far, so good. Thank you, Lord. 4-6 weeks per year in bed due to treatment side effects is much better than 12 weeks per year in bed due to treatment side effects! And rituxan was MUCH better for my joint pain and brain in the past.

Hopefully the rituxan will help lessen the severity of the joint pain, fatigue, brain issues, chest pain, raynauds, kidney issues and other lupus symptoms with which I'm currently dealing.

Thank You, Lord!

Speaking of the severe neutropenia which happened this summer...

Ben and I did not realize what a huge bullet was dodged there. My lupus doc tried to relay the seriousness of the situation at my last appointment. We are incredibly thankful to God for preserving my life and keeping me safe from serious infection during that time. Even though I did acquire VRE while inpatient, that can be managed.

I'm beyond thankful that I'm here to run another day!

Isaiah 46:4

Even to your old age and gray hairs

I am he, I am he who will sustain you.

I have made you and I will carry you;

I will sustain you and I will rescue you.

Don't Give Up (featuring Herbie Hancock, Pink, and John Legend)

click on the link to listen to the song

In this proud land we grew up strong*

We were wanted all along

I was taught to fight, taught to win

I never thought I could fail

No fight left or so it seems

I am a man whose dreams have all deserted

I've changed my face, I've changed my name

But no one wants you when you lose

Don't give up

'cos you have friends

Don't give up

You're not beaten yet

Don't give up

I know you can make it good

Though I saw it all around

Never thought I could be affected

Thought that we'd be the last to go

It is so strange the way things turn

Drove the night toward my home

The place that I was born, on the lakeside

As daylight broke, I saw the earth

The trees had burned down to the ground

Don't give up

You still have us

Don't give up

We don't need much of anything

Don't give up

'cause somewhere there's a place

Where we belong

Rest your head

You worry too much

It's going to be alright

When times get rough

You can fall back on us

Don't give up

Please don't give up

'got to walk out of here

I can't take anymore

Going to stand on that bridge

Keep my eyes down below

Whatever may come

And whatever may go

That river's flowing

Moved on to another town

Tried hard to settle down

For every job, so many men

So many men no-one needs

Don't give up

'cause you have friends

Don't give up

You're not the only one

Don't give up

No reason to be ashamed

Don't give up

You still have us

Don't give up now

We're proud of who you are

Don't give up

You know it's never been easy

Don't give up

'cause I believe there's the a place

There's a place where we belong

Writer(s): Peter Gabriel, Xavier Naidoo, Neil Charles Palmer, Ray Hedges, Tony Brevett

I've also had to begin seeing a nephroloist. I've been passing protein regularly in my urine this year, and that can be a sign of lupus attacking the kidneys. Thankfully, I don't have any permanent damage at this point. I'll be closely monitored for changes.

I did have an unrelated, severe kidney infection in August.

That's not wine or blueberry juice, folks.

Yes, it was very painful. It came on really fast and progressed quickly. Thankfully, it cleared up following a course of very strong antibiotics, and I've had no further kidney issues since then.

One issue that remains unresolved is the trouble I'm having keeping my blood sugar up. I don't have trouble with it going too high, but it's regularly (like a few times daily) in the 50's or even lower. This happens when I exercise and when I don't, but it is pretty scary when I'm running to have it drop from 100 to 50 in a matter of 10 minutes. I'm continuing to work with the endocrinologist to find the solution. I have been wearing the continuous glucose monitor, and it has kept me from having extreme lows in the 30's and 20's. I'm alerted to the quick drops before they get that low.

I'm so thankful that Ben and I had a wonderful time away together in New Jersey.

Other than my salvation, there's no doubt that Ben is my biggest, most precious blessing...

Without You by Eddie Vedder

click the link to hear the song

I'll grow when you grow
Let me loosen up the blindfold
I'll fly when you cry
Lift us out of this landslide

Wherever you go
Whenever we part

I'll keep on healing all the scars
That we've collected from the start
I'd rather this than live without you
For every wish upon a star
That goes unanswered in the dark
There is a dream I've dreamt about you

And from afar I lie awake
Close my eyes to find
I wouldn't be the same

I'll shine when you shine
Painting pictures on my mind
Sun sets on this ocean
Never once on my devotion

However you are
Or far that you fall

I'll keep on healing all the scars
That we've collected from the start
I'd rather this than live without you
For every wish upon a star
That goes unanswered in the dark
There is a dream I've dreamt about you

And from afar I lie awake
Close my eyes to find
I'd never be the same

Without you

This piper played each morning at dawn...

I've had some really, R E A L L Y weird dreams lately. One involved Hitler and a strange wizard with a huge red nose like a clown. And no, I'm not on any new medications. Sometimes weird dreams can be a signal that new CNS issues are cropping up with lupus. We'll see what happens. In another dream, I could vividly see and feel my grandmother Wozny's hands. It was so real.

Last Night When I Was Dancing with Joey

Ramone by Amy Rigby

click the link to listen to the song

He walked into the party looking just like he had in the past

He came up to me and he didn’t even have to ask

I tried to say something he said “Girl shut your mouth,

They’re playing Papa Was A Rolling Stone”

Last night I was dancing with Joey Ramone

He was cool in his leather jacket and his little dark shades

He started dancing around, I tried to copy

every move he made

When I reached for his hand he kind of brushed me off

Then they played Hanging On The Telephone

Last night when I was dancing with Joey Ramone

They played The Worst That Could Happen

by the Brooklyn Bridge

He Hit Me And It Felt Like A Kiss

Glad All Over, Needles and Pins

Be My Baby again and again

Gloria by the Shadows of Knight

He’s So Fine and I Feel Alright

Charlie Brown, Can’t Sit Down

We were dancing around and around

Well I closed my eyes for a minute and then he was gone

The room looked different but the music kept playing on and on and on and on

When I woke up today I had a song in my head

I wanna wanna wanna go home

They played it last night when I was

dancing with Joey Ramone

Last night I was dancing with Joey Ramone

1-2-3-4

I'm really looking forward to making some good food on Thanksgiving and putting up my Christmas Tree this year! It's been a couple of years since I've felt well enough to do either when the time came, but I'm expecting better things this year!

And...

...

I'm still lonely sometimes...

...

but who isn't?

Nothing like a good cry in the bathtub.

I think deep down inside...we're all lonely sometimes. That's why it's so important to learn to enjoy your own company. Some of the best conversations you'll ever have are with yourself.

And the loneliness causes us to seek the companionship of the Lord, too. David Wilcox said, "When I get lonely, that's only a sign that some room is empty in me, but that room is there by design. If I feel hollow, well that's just my proof that there's more for me to follow...

that's what the lonely is for."

We all have things we wish we had done, dreams we wish we had pursued, words we wish we had said (or could un-say), tasks unaccomplished, illnesses, people who are gone, financial troubles, broken hearts...

...but we're alive.

I'm Alive by Jackson Browne

click on the link to hear the song

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, I'm alive

Yeah baby I'm alive, yeah 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 and I thought that it would kill me

But I'm alive, yeah I'm alive, yeah I'm alive, yeah I'm alive

Psalm 43:5

Why am I so sad?

Why am I so upset?

I should put my hope in God

and keep praising him,

my Savior and my God.

Psalm 68:5-6

God is in his holy Temple.

He is a father to orphans,

and he defends the widows.

God gives the lonely a home.

He leads prisoners out with joy...

Deuteronomy 31:8

The Lord himself will go before you. He will be with you; he will not leave you or forget you. Don’t be afraid and don’t worry.

John 14:18

I will not leave you all alone like orphans; I will come back to you. 

Romans 8:38-39

Yes, I am sure that neither death, nor life, nor angels, nor ruling spirits, nothing now, nothing in the future, no powers, nothing above us, nothing below us, nor anything else in the whole world will ever be able to separate us from the love of God that is in Christ Jesus our Lord.

"There is a girl in New York City who calls herself the human trampoline. Sometimes when I'm falling, flying or tumbling in turmoil, I say, "whoa, so this is what she means." She means we are bouncing into Graceland."

~ Paul Simon