I won't keep you in suspense...

 

Captial City Half Marathon Finisher's Medal

YES!

As promised…thank you for all of the prayers! God heard and answered in amazing ways. I’ve set a goal of running at least one half marathon each month in May-November. My aim in doing these races is to raise awareness of lupus and our need for a cure, and to bring honor and glory to God. So, May 4 was #1, the Capitol City half marathon in Columbus, Ohio. In addition to a recent lupus flare, I was placed on an antibiotic for infection on April 29. When I asked friends to pray, God provided answers for our requests for: strength, safety, health concerns, healing, a nagging knee injury, a severe dizzy spell at mile 10, recovery from my infusion April 26, good rest, digestive concerns, a divine appointment with a young lady from our hotel, a neighbor with an ankle injury, plenty of shade, a nice breeze, good temperatures, no rain, a strong finish and many other “small” requests along the course of the race. 

 

 

Just steps from the finish line!

 

Reunited with Ben after the finish. Tired, but happy~praise the Lord!

Start of the race. There were 14,000 participants!

Finish line party with Wayesburg friends.

I've posted this before, but I'd like to say it again...

 

So, why running? I don’t know…I can’t explain it. I feel called to do it. I feel like God has something for me to learn through the process of training and running with lupus. I feel like I really spend time with God when I run. My body is occupied, so He can have my mind. My prayer life has grown SO much. My appreciation for the beauty of God’s creation has been re-ignited. And, most importantly, my joy is being restored. I want God to use my running to heal my body and spirit. I want God to use my running to spread awareness about Lupus. I want God to use my running to inspire others and draw them to Him. I want God to amaze me, challenge me, change me and make me grow, and I don’t have to understand why running is the vehicle for this. I just have to put one foot in front of the other as often as I feel I can. 

 

 

 

 

 

Remember, May is Lupus Awareness Month!

 

 

SIGN THE PETITION FOR MORE LUPUS RESEARCH FUNDING

(click on the link above to be directed to the petition)

 

 

 

Information about Lupus

(click the link above to read more about lupus, its sypmtoms, treatments, and more)

 

Don't forget to wear purple on Friday, May 17

 

DO IT FOR ME!

 

 

 

Yes, Steelers fans, it's true--purple is the official color of lupus awareness. However, since Put On Purple day, May 17, is NOT during football season, maybe on that day we can all come together and wear purple to spread lupus awareness!

PITTSBURGH STEELERS SUPPORT LUPUS AWARENESS

(click on the link above to see a video)

 

 

 

Next stop: Decker's Creek Half Marathon, June 1, Morgantown, West Virginia!

 

 

Why I like to sign up for races well in advance...

 

My running philosophy...

 

Also on the calendar in May: Armed Forces Day virtual quarter marathon, Band Together For Lupus virtual quarter marathon, Westminster Women's Classic virtual 10 mile race, and the North Strabane 5K on Memorial Day. Gotta keep kicking the beehive...

 

On the schedule today...rest, due to a stomach virus. This, too, shall pass!

 

"Better Things" by Ray Davies (The Kinks)

 

"Better Things" by The Kinks

(click the link above to hear the song)

 

Heres wishing you the bluest sky,

And hoping something better comes tomorrow.
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the doubt and sadness.
I know that better things are on the way.

Here's hoping all the days ahead
Wont be as bitter as the ones behind you.
Be an optimist instead,
And somehow happiness will find you.
Forget what happened yesterday,
I know that better things are on the way.

Its really good to see you rocking out
And having fun,
Living like you just begun.
Accept your life and what it brings.
I hope tomorrow you'll find better things.
I know tomorrow you'll find better things.

Heres wishing you the bluest sky,
And hoping something better comes tomorrow.
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the doubt and sadness.
I know that better things are on the way.

I know you've got a lot of good things happening up ahead.
The past is gone it's all been said.
So heres to what the future brings,
I know tomorrow you'll find better things.
I know tomorrow you'll find better things.

 

Yes, and today my potential needs rest!

 

 

I'm telling my story...

 

                            I want to hear yours...

 

 

"Come what may, I want to run."

 

 

Psalm 119:32

 

I run in the path of your commands,

for you have set my heart free.

 

 

Join me in the journey...

 

The Middle by Jimmy Eat World

(click on the link above to hear the song)

 

 

 

 

 

  

Lupus is a wild ride...

 

Thunderbolt at Kennywood Park

 

(click the above link to take a ride on a roller coaster I remember from my youth)

 

So, lupus is a disease of ups and downs. Since my last Benlysta chemo infusion, (March 29) there have been ups! Specifically, since then I've been able to run a total of 50+ miles! However, since this past Sunday, (April 14), I've been able to run a total of 0 miles. I did go out on Tuesday, April 16, to run in honor of those touched by the tragedy at the Boston Marathon. Sometimes it's rough to get a run started, but usually if I just keep going, it gets a lot better around mile 2 and beyond. Tuesday, however, I just could not make the body go very far.

 

 

It's amazing how quickly a lupus flare can set in, and this week I was reminded of that very fact yet again. Each day you feel a little worse as the coaster climbs the hill and then you wake up one morning and BAM~you feel like you were hit by the coaster. Joint pain and swelling, facial rash, FATIGUE, fever, headache, nausea, chest pain, dizzy, disoriented, blah, blah, blah...

 

 

Yesterday, other than an ultrasound appointment, I spent most of the day in bed. This morning, after over 12 hours straight in bed, I got up and got a shower. Then, I took a rest. I ate a bowl of oatmeal. Then, I took a rest. I did go to see my PCP. Then...you guessed it, another rest. Do to some of the flare symptoms I'm having, my rheumatologist (that's my lupus doctor) wanted my PCP to listen to my heart and lungs. Thankfully, all sounded OK there, so the chest pressure/pain was dubbed costochondritis--an inflammation of the juncture of the ribs and breastbone. Oh what fun it is to ride on the lupus roller coaster! At the PCP's office I was given...the dreaded steroid injection.

 

 

I prefer the injections over increasing my oral steroids. (I already take a small dose of oral steroids every day.) The side effects--rapid heart rate, insomnia, nausea, headache, water retention, emotional response, jitters, etc--don't last as long for me when I get an injection. All of those side effects are still present for a day or two, however. When I checked in at the PCP, my BP was 100/60, which is pretty normal for me. My pulse was 70.

My weight was...well, that's irrelevant.

At home, an hour after the injection, my vitals were a little higher:

 

 

The good news is that the side effects should be gone in a couple days, but the positive effects of the shot--kicking this flare in the derriere--should last for a while. And I'll get another steroid boost with my next Benlysta, which is next Friday.

 

This has been a busy month of appointments, rehearsals, concerts, and so on. I have the blessing of directing a choir of women, The Daughters of Grace. This is a volunteer choir made up of over fifty ladies of all ages from Greene, Washington, and Fayette Counties in PA. We're holding a fundraiser concert for a local charity--Greene County Young Life--TOMORROW NIGHT. That's right, tomorrow. So, it's not possible to crawl in a hole and hibernate until next week.

As much as I'd like to cash in one of these...

 

 

...tonight is our dress rehearsal and the show must go on. I know God will give me the strength to fulfill the calling He has placed upon me. And I know without a doubt part of His calling is for me to direct this choir! I also know that part of His calling is for me to RUN for His glory and to spread awareness about Lupus. At this point, I am hoping to be back to running (slow and steady) by early next week. I am still planning to run the 2013 Capital City Half Marathon in Columbus on May 4th.

 

THE CAPITAL CITY HALF MARATHON

 

(click on the above link to learn more about the race)

 

So, why did this lupus flare have to happen now? Well, better now than May 3rd! Seriously though, I don't know why. I am trying to manifest more of the Fruit of the Spirit in my life, and this is certainly an opportunity for growth in that area.

 

Gal 5:22-23

 But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law.

 

I Will Wait On the Lord by Twila Paris

 

(click on the above link to listen to the song)

 

I Will Wait by Twila Paris

 

I will wait on the Lord
I will wait for His word
Because I fear His holy name
I will wait
I will wait
I will wait on the Lord
I will wait for His word
Before I move
Before I speak
Perfect wisdom I will seek
And I will wait
As long as it takes
I will wait on the Lord

 

 

I'll update early next week about how things are going. 

 

Join me in the journey...

 

The Middle by Jimmy Eats World

 

(click on the above link to listen to my latest "theme song")



 

Joy in the journey

Things I have found while running: a dime, friendly dogs, a deflated whoopee cushion, a bee inside my sunglasses, that even slow progress is progress, not-so-friendly dogs, a silver spoon, my second wind, the fact that I like Chrissie Hynde a lot more than I thought I did, answered prayers, the importance of good underwear, the reality that a mile is a mile-no matter how fast you go, spiritual renewal, our local blue heron's favorite spot, myself...

 

Ps 28:7

The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.

 

Hey there! I'm still here...it's been a wild ride the last month or so. I am so happy to say...

 

...today I resumed training for the Capitol City Half Marathon, which is on May 4th! Running has been rather hit and miss lately, especially this last week when I took 7 days off to rest an injured knee. Yesterday's run didn't seem to aggravate the knee~thank goodness! It's still not 100%, so I'm keeping my pace slow and not pushing it.

 

 

 

If going to doctor appointments and tests/procedures were a full-time job, lately I would be working over time! Hematologist, gastroenterologist, gynecologist, dentist, retinal specialist, PCP,

neurologist, chiropractor, urologist, rheumatologist, ultrasounds, blood work,

biopsy, mammogram, CT scan, chemotherapy infusions...

 



 

My feet are about the same or maybe slightly worse than the last time I checked in.  I did try a medication to increase the blood flow to my extremities--nifedipine, a calcium channel blocker. This medication is NOT my friend! It caused a severe reaction including numbness/weakness in my arms and a very high resting heart rate (160) and spike in blood pressure which lasted about 36 hours. After the "epic fail" of nifedipine, I was prescribed a different medication (amlodipine) to try...but I'm too chicken right now! I'm really hoping the warmer weather which is on the way SOMETIME soon (we hope) will help my feet. So, I guess you could say I'm in denial...

 

 

Lupus has been toying with my autonomic nervous system again, causing an increase in palpitations and hypoglycemia. My CNS symptoms of fatigue, dizziness, lupus headaches, and cognitive problems have been increased. People with lupus talk about being "foggy." It's like you are trying to get your brain to swim through jello. I forget words for common things. I can't find my way around familiar stores. I have to concentrate really hard to remember how to get home. Working on our taxes has been...taxing! An illustration of what this fog can do: I wear lip balm to bed every night. On a recent evening, I opened the medicine cabinet (which is not where I store the lip balm) and took out...

 

 

 

...a jar of Vicks Vapo Rub. I opened the jar, got a good gob on my finger and stopped about an inch from my lips. Thank goodness my nose processed that "something is not right here!" That's a mild example. Having to ask a Macy's store clerk to direct you to the entrance back to the mall is another. Pulling off the road to think about whether the route to your house requires a left or right turn is another. During recent conversations with my husband, I told him to get me something "out of that cold thing where we put food" (REFRIGERATOR) and that the item he was searching for was "in that place where we put clothes" (CLOSET). As an English major and "wordy" person, these cognitive problems can be particularly discouraging. Or, they can be funny...it's all a matter of perspective!

 

 

 

 

Joint pain, dry eyes and mouth...New on my plate are some gynecological issues and gall stones.  In July, my rheumetologist and I will be making some decisions about changing/ discontinuing medications. I'm so VERY thankful that I haven't had any respiratory

infections yet this year! Thank you, Lord!

 

  

 

 

Although the increase in my symptoms has kept me from running as much as I would like, I am very thankful that I've still been able to do some running. A lot of it has been on the dreadmill, but I'm thankful I have that option. A friend of mine recently started running. Her first 5K was a couple of weekends ago, and I told her I'd run one here while she ran hers in Texas. I did the MountainEAR 5K in Morgantown, WV. It was a fundraiser to help provide financial assitance to patients of WVU Audiology. Here's a couple of shots from the run:
 







 

I've set a goal of running one half marathon each month for May-November. The "plan" was to stay built up after my first half marathon in January, and complete another in March. Although I had to put the March race on hold, I am still hoping to be able to complete the string of races starting in May. My doctor thinks I'm nuts--I'm not saying she's wrong! We'll see what happens!

 

 

 

So, why running? I don't know...I can't explain it. I feel "called" to do it, by the Lord. I feel like He has something for me to learn through the process of training. I feel like I really spend time with God sometimes when I run. I want Him to use the running to heal my body and spirit. I want Him to use the running to spread awareness about Lupus. I want Him to use the running to inspire others and draw others to Himself. I want Him to amaze me and challenge me and change me and make me grow, and I don't have to understand why running is the vehicle for this. I just have to put one foot in front of the other as often as I feel I can.

 

 

 

 

 

Psalm 119:28-32

 

 My soul is weary with sorrow;

strengthen me according to your word.

 Keep me from deceitful ways;

be gracious to me through your law.

 I have chosen the way of truth;

I have set my heart on your laws. 

 I hold fast to your statutes, O LORD;

do not let me be put to shame.

 I run in the path of your commands,

for you have set my heart free.

 

 

Join me in the journey...

 

"The Middle" by Jimmy Eats World

 

 

No, it's not a foot fetish...it's Raynaud's!

LUPUS IS AN UNPREDICTABLE BEAST!

Hey, there! Haven't posted about running in a while because there hasn't been much of that going here. I've been having more lupus activity, and some of those issues are putting my running goals on hold. One big issue lately...Raynaud's phenomenon.  Heard of that before? Here's a great link for a simple explanation:

http://my.clevelandclinic.org/heart/disorders/vascular/raynauds.aspx

These are some photos of my feet recovering from some bad blisters caused by Raynaud's. While I never thought I'd be posting photos of my feet online, these do show WHY my feet aren't very fit for running far right now. Yes, they are painful.

 

In addition to the Raynaud's, right now I'm dealing with persistent nausea and abdominal pain, bleeding, lupus migraines (which may be related to the Raynaud's), dizziness and unsteadiness, disturbing heart palpitations and a high resting heart rate, pronounced fatigue, anemia, joint pain, swelling, mouth sores, dry eyes and mouth. I've tried ignoring these symptoms, but guess what...they're real, so they don't just go away.

 

So...all this stuff is kinda scary. Will it get better soon enough for me to train for the spring and summer races I signed up to do? Will it improve enough for me to just walk without pain? Will the doctors figure out how to combat these things? Will I have to add medications? Will it get better at all? What if I can't run anymore? What if...what if...what if...

 

 

 

 

 

One BIG thing about living with lupus is that the rough times make me appreciate the "normal" times SO much more! Like the days when I can go to the grocery store and run errands WITHOUT a nap afterwards.  I appreciate the days that I have energy to do things like clean my house. The rough times also send me to the Lord and drive me to my knees.  I don't hide my emotions from God~He knows the truth anyway! I talk to God in my angry voice, my sad voice, my searching voice, and my thankful voice. And...I've learned to be silent and listen for what He has to say, both through His word and in prayer time. 

 

 

Eccl 3:1-8

There is a time for everything,
a season for every activity under heaven.
A time to be born and a time to die.
A time to plant and a time to harvest.
A time to kill and a time to heal.
A time to tear down and a time to rebuild.
A time to cry and a time to laugh.
A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
A time to search and a time to lose.
A time to keep and a time to throw away.
A time to tear and a time to mend.
A time to be quiet and a time to speak up.
A time to love and a time to hate.
A time for war and a time for peace.

 

A TIME TO RUN AND A TIME TO............look forward to running again!

 

 

Lupus makes it hard to make plans! That's a tough pill for a "Type-A" like me to swallow. However...

 

 

 

 

 

I'LL BE BACK!!!

 

For you, O LORD, have delivered my soul from death, my eyes from tears, my feet from stumbling.

Psalm 116:8

 

"The Middle" by Jimmy Eats World

 







Elated To Deflated...

Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow.

~ James 1:2-3, NLT

So...lately feeling 'deflated' instead of 'elated.'  These last 12 days or so, lupus is winning. It's one of the frustrating facets of the disease that things can change so quickly health-wise. I've only been out to run once, early this week, and what should have been an easy jog was really, really hard. My heart wants to go, but my body is telling my mind "no." So, I'm trying to listen, because if I don't I could hurt myself more in the long run, but I'm craving that feeling I get when I run with the Lord.

http://www.youtube.com/watch?v=_iu7e_0mH_E

Learning to Fly by Tom Petty and Jeff Lynne

Well, I started out down a dirty road
Started out all alone
And the sun went down as I crossed the hill
And the town lit up, the world got still

I'm learning to fly but I ain't got wings
Coming down is the hardest thing

Well, the good old days may not return
And the rocks might melt and the sea may burn

I'm learning to fly but I ain't got wings
Coming down is the hardest thing

Well, some say life will beat you down
Break your heart, steal your crown
So I've started out for God knows where
I guess I'll know when I get there

I'm learning to fly but I ain't got wings
Coming down is the hardest thing
I'm learning to fly around the clouds
But what goes up must come down

I'm learning to fly

Phil 4:12-13

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do everything through Christ who gives me strength.

http://www.youtube.com/watch?v=Qkf0YND6DgQ
Sometimes By Step by Rich Mullins

Sometimes the night was beautiful
Sometimes the sky was so far away
Sometimes it seemed to stoop so close
You could touch it but your heart would break
Sometimes the morning came too soon
Sometimes the day could be so hot
There was so much work left to do
But so much You'd already done

CHORUS:
Oh God, You are my God
And I will ever praise You
Oh God, You are my God
And I will ever praise You
I will seek You in the morning
And I will learn to walk in Your ways
And step by step You'll lead me
And I will follow You all of my days

Sometimes I think of Abraham
How one star he saw had been lit for me
He was a stranger in this land
And 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

CHORUS

And I will follow You all of my days
And I will follow You all of my days
And step by step You'll lead me
And I will follow You all of my days


These days when I haven't been able to go out running (or even stay out of bed) have certainly made me appreciate more the days when I can. Maybe that's the lesson: don't take anything for granted; find the joy in EVERY circumstance; never give up.

1 Thess 5:16-18

 Be joyful always; 17 pray continually; 18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Keep your fork...the best is yet to come!

http://www.youtube.com/watch?v=XF2N7ZAKcXE

I Won’t Back Down by Tom Petty

Well I won't back down        
No I won't back down
You can stand me up at the gates of Hell
But I won't back down

No I'll stand my ground
Won't be turned around
And I'll keep this world from dragging me down
Gonna stand my ground
And I won't back down

Hey baby, there ain't no easy way out
Hey yeah, I'll 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 pushing me around
but I'll stand my ground
And I won't back down

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

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

No I won't back down