Click the link above to hear the song.
"When October Goes"
Barry Manilow
And when October goes
The snow begins to fly
Above the smokey roofs
I watch the planes go by
The children running home
Beneath a twilight sky
Oh, for the fun of them
When I was one of them
And when October goes
The same old dream appears
And you are in my arms
To share the happy years
I turn my head away
To hide the helpless tears
Oh, how I hate
To see October go
And when October goes
The same old dream appears
And you are in my arms
To share the happy years
I turn my head away
To hide the helpless tears
Oh, how I hate
To see October go
I should be over it now I know
It doesn't matter much
How old I grow
I hate to see October go
November always sneaks up on me. I'm not sure why. Here we are, though...November 2. We "fell back" and got an extra hour of...our cats tormenting us (wondering why we're not up) when we tried to sleep. Outside my windows, the sun is shining on the remaining leaves. The stars are starting to get GOOD at night. I had to dig out a sweater to wear the other day (yay!) I've been running. We had a wonderful vacation. Lupus is throwing punches, but I'm managing.
Honestly, though, what I'm really thinking about on this gorgeous November 2 is...
How am I ever going to get everything for both November AND December accomplished by the end of November?
I'll be having another round of rituxan treatments in December so things like decorating, baking, shopping, mailing, etc. have to be accomplished this month. Or...they have to be abandoned...which is certainly an option. Of course, November comes with tasks of its own: switching out the "warm" clothes for the "cold" ones, Thanksgiving, a large charity fundraiser concert being presented by the women's choir I direct, winter prep for the yard and patio, etc, etc, etc. Of course, there are ALWAYS doctor appointments, lab appointments, family commitments, etc, etc, etc.
I share all of that just to say...
Stress...it's hard to outrun.
However, I've gotten to do some running, so let me share about that first!
September 19, 2015
Mountain Mama 8K
Part of the inaugural
Morgantown Marathon Weekend
The guy behind me totally copied my outfit...
September 26, 2015
First Annual 5K to End Hunger
Waynesburg, PA
Presented by Corner Cupboard Food Bank
Age group awards with my friend Kim.
Running while on vacation at the Jersey Shore
8 miler
6 miler
October 18, 2015
Finish MS Five Mile Run
North Park, Pittsburgh, PA
5 Mile PR of 57:49
Fastest Mile 10:42 (a record for me)
October 25, 2015
EQT Pittsburgh 10 Miler
Pittsburgh, PA
In the corral, waiting to start.
Still waiting.
Smarties before I start...and every half mile so I don't pass out from low sugar. Along with a granola bar 15 minutes before the start and
at mile 5. Seriously.
On Carson Street, near Station Square,
at the start line.
Starting line.
Got my photo with this super cute guy...
Ben had to walk across the Smithfield Street Bridge to meet up with me at the finish line. He took these photos from the bridge of the riverfront and the city skyline.
The beautiful PPG building.
Crossing the finish line
2:04:01
New PR!
Trying to text Ben after the finish...
while he was watching me.
Check out all of those bananas behind me...
Stretch it out.
After the race, I was interviewed about my race experience and what motivated me to get to the start line. The interview will be used in promotional materials for future races. The interview was the result of having my answer selected from those who responded to this question issued by the race committee:
"What inspired you to get to the start line of the 2015 EQT 10 Miler?"
Here's my essay entry...
"What inspired me to get to the start line of the EQT 10 Miler this year? Another chance to put lupus in its place and take back some of the control, freedom and joy this disease has tried to steal from me.
My journey to the start line of the 2015 EQT 10 Miler began in 2014. After recovering from a fractured fibula at the end of 2013, I began training in early 2014 with hopes of running Pittsburgh Half Marathon that spring. As a runner with SLE Lupus, I have to be careful with my training and adjust my goals often. In a nutshell, Systemic Lupus Erythematosus is a disease in which the body’s immune system functions improperly, attacking healthy tissue and organs instead of germs and other bad things. I have periods when my health is good enough for me to run and I have periods when running is out of the question. At one time or another, lupus has attacked my skin, joints, blood, digestive system, brain, lungs, nervous system, kidneys…you name it. At times I’ve been unable to drive, had to use a cane to walk, and been unable to speak well or write well or do simple math computations. I’ve had hallucinations and deep depression thanks to lupus and some of the drugs used to treat it. To keep my immune system “somewhat” in line, I take corticosteroids, anti-malarials, blood thinners, anti-organ rejections medications, and infusions of immunosuppressive biologics which are also used to treat lymphoma, leukemia, other cancers, rheumatoid arthritis and
other diseases.
I was hoping 2014 would be a good running period…unfortunately, it wasn’t. I was unable to run the Pittsburgh Half due to lupus complications. I was hospitalized more in 2014 than all the other times in my life combined. 2014 was a year of pneumonia, pleurisy, surgery, colitis, numerous respiratory and urinary tract infections, severe anemia, chronic diarrhea and bleeding, acute severe pyelonephritis, and, most seriously, life-threatening severe neutropenia which required a two week hospital stay in isolation for my own protection. I lost one-third of my body weight (50 pounds) in 2014. In August 2014 I had another round of IV infusions, and my health started to improve some, and I tried to start running again. I signed up for a few races to give myself something to work for, and decided to make the 2014 EQT 10 Miler a goal. Unfortunately, lupus wasn’t done having its way with 2014. I missed so much training and so many races, including the EQT 10 Miler (due to another bad infection.) Even more, I missed the freedom and spiritual nourishment running gave me. I missed being an active participant in LIFE.
After more rounds of IV infusions in December 2014 and April and May 2015, I began seeing significant improvements. I was able to (very carefully) begin training again in June 2015. Those runs were slow and difficult and painful and horrible and absolutely wonderful. Thankfully, my doctors have found a combination of medications that seems to be working better for now. I still have to be careful. I still have serious flares, but lupus is under better control.
2015 is a year of appreciating EVERYTHING so much more. I cried with joy the first time I could go to the grocery store by myself. I’ve spent hours admiring the flowers in my garden. I’ve enjoyed resting with my pets beside me. Food tastes so wonderful to me again. I can stay up late watching a movie with my husband. I can direct the choir, go to the gym, clean my house, write a letter, balance the checkbook…ordinary things I took for granted. And I can run. I.Can.Run. When I cross the finish line of the EQT 10 Miler, it will be the culmination of a year spent fighting for my life and learning to appreciate all the victories along the way…the big ones and the small ones."
October 31, 2015
Jack O'Lantern Jog
Washington, Pa
Wow! I keep running into that cute guy.
He must really be a running fan...
Here we go! Check out the Pope running behind me and to the left.
See you on the flip side!
Done! Super hilly course. Seriously hilly. H-I-L-L-Y. One hill, about .25 into the race was steep and lasted half a mile. Another runner checked the distance of the hill with her car the day before the race. Ha ha--someone as weird as me! There were 3 other tough hills, too, although after that first killer stretch, any incline felt like death. Anyway, what goes up must come down...and the last mile lead to me running my fastest ever mile! 10:24! At one point, my pace was under 9:00! SHOCKING! Some folks would consider that an "average" or even a slow pace, but not this girl! Earlier this summer, when I was finally able to resume running after an extended break (thanks, lupus) my mile paces were in the 13:30 range. So that's a huge improvement. In some of the other "flatter" races I've done this fall, my average pace was 11:30-12:00 for the entire race. I'm THRILLED with that!
I came into a few of the finish lines with this song on my headphones:
Click on the link above to hear the song.
You Wreck Me
by Tom Petty and Mike Campbell
Tonight we ride, right or wrong
Tonight we sail, on a radio song
Rescue me, should I go down
If I stay too long in trouble town
Oh, yeah, you wreck me, baby
You break me in two
But you move me, honey
Yes you do
Now and again I get the feeling
Well if I don't win, I'm a gonna break even
Rescue me, should I go wrong
If I dig too deep, if I stay too long
Oh, yeah, you wreck me, baby
You break me in two
But you move me, honey
Yes you do
I'll be the boy in the corduroy pants
You be the girl at the high school dance
Run with me wherever I go
And just play dumb, whatever you know
Oh, yeah, you wreck me, baby
You break me in two
But you move me, honey
Yes you do
One of the great movie clips of all time is the scene of Eric Liddle running his 1924 Olympic race in "Chariots of Fire". He wins the gold medal, finishing way ahead of everyone else. As he runs, he’s clutching a piece of paper with a message from the Bible, looking up into the heavens, and laughing with joy! His whole body is exuberant, arms flailing freely while running, as he exclaims,
“When I run I feel God’s pleasure!”
(Bill Gaultiere, Soul Shepherding)
Even though I've been able to run a good bit in the last 8 weeks...truthfully it's been getting harder. And harder. And the last two weeks the only running I've been doing is at the weekend races. The Jack O'Lantern Jog was my last race for this season, and realistically, for this year. It's getting to be time for treatments again, and lupus is letting me know it's there. The up and down, ebb and flow, progress and interruptions, uncertainty, quick decline, ...that's life with lupus.
Click on the link to hear the song.
That's Life
That's life (that's life)
that's what all people say
You're riding high in April,
Shot down in May
But I know I'm gonna change their tune,
When I'm back on top, back on top in June
I said that's life (that's life)
and as funny as it may seem
Some people get their kicks,
Steppin' on a dream
But I just can't let it, let it get me down,
'Cause this fine old world,
it keeps spinnin' around
I've been a puppet, a pauper, a pirate,
A poet, a pawn and a king
I've been up and down and over and out
And I know one thing
Each time I find myself flat on my face,
I pick myself up and get back in the race
That's life (that's life),
I tell you, I can't deny it,
I thought of quitting, baby
But my heart just ain't gonna buy it
'And if I didn't think it was worth
one single try,
I'd jump right on a big bird and then I'd fly
I've been a puppet, a pauper, a pirate,
A poet, a pawn and a king
I've been up and down and over and out
And I know one thing
Each time I find myself flat on my face,
I just pick myself up and get back in the race
That's life (that's life),
that's life, I can't deny it,
Many times I thought of cuttin' out, but my heart won't buy it
But if there's nothing shaken
come here this July,
I'm gonna roll myself up in a big ball and die
Songwriters
KAY, DEAN / GORDON, KELLY L.
As Warren Zevon said...
"Enjoy every sandwich."
Or doughnut!
Ben and I splurged on these beauties while on vacation. Britton's Bakery homemade cream filled doughnuts. My blood sugar was a mess.
It was totally worth it.
We were in New Jersey while that hurricane was trying to decide if it was going to make a US landfall. The hurricane wasn't the biggest problem, though; the nor'easter was. The day we arrived in NJ it was warm and sunny. The next day it was warm, windy and cloudy. Then...rain, rain, rain and W-I-N-D. Although the devastation was nothing like what happened in South Carolina or the Bahamas, there was horrible flooding and some wind damage. One house near the Grassy Sound was swept away into the water. We were basically stuck at our resort for the first week of our trip. At one point, there was discussion as to whether the guests would have to evacuate. Thankfully, that wasn't necessary. The annual Sole Sisters Nun Run at Cape May Pointe was cancelled due to the declaration of a state of emergency.
While it was nice to have the time to lay around and watch the stormy sea, after things calmed down we crammed the activities of a two week vacation into six days. We celebrated our 20th wedding anniversary by privately renewing our wedding vows. On a perfectly gorgeous Wednesday. Because being in the oceanfront garden in 45 mph sustained winds and rain on Sunday was out of the question. Thankfully we were able to get everything rescheduled...photographer, horse drawn carriage ride, high tea, supper at "our" place...
It was a wonderful blessing.
That's the Hereford Inlet Lighthouse in the background. We asked a kind stranger to take this photo. Strangely enough, we saw her again seven hours later, 10 miles from this spot, where we were watching the sunset.
I should like to see these waters every day...
When the rain stopped, but the winds continued, Ben and I ventured out to the sea wall. We stayed outside the car for 37 seconds. We nearly blew away four times. It was wonderful!
So, how are the winds blowing lupus-wise?
They're variable and unpredictable, as usual, but not hurricane status.
At my last appointment with my rheumatologist, she looked me squarely in the eyes and told me,
"You're going to have to come to terms with a
new definition of normal."
Even though things are definitely better than last year, there's still a lot to deal with. Lupus doesn't go away.
I need lots of scheduled rest. I need to pace myself in all areas of life. There is no pushing through...or I'll push myself right into the hospital...or more issues with organ involvement.
Click the link to hear the song.
I've been experiencing flaring at times (and increasing frequency) with joint pain, exhaustion beyond the normal, fevers, mouth sores, anemia, increased inflammation markers, headaches, autonomic nervous system issues (affecting my digestion, circulation, blood sugars, etc.)
Welcome to fall/winter...Raynaud's season.
I have two new meds to try for Raynaud's...if I can get the nerve up to take them. They have possible side effects that make me nervous. But my feet, hands, brain, etc aren't very happy, so I need to try these medications. What a trap.
Eating is still pretty depressing, although I have been doing more of it so that I don't lose weight again. I'm still having extreme constipation and a really hard time regulating my blood sugar. Even when I do everything right, sometimes my pancreas just says, "Nice try. Ha, ha, ha, ha..." (insert evil laugh here.) It's especially frustrating that the blood sugar won't stay up when I'm running. If I don't eat carbs every half mile or so, I drop into the 50's and 40's, which is actually pretty dangerous. I'd really like to find a nutritionist who is also a hypoglycemic runner...
a needle in a haystack.
I share things about lupus on Facebook, but mostly just awareness items or links to articles about new research. I don't often share my bad days...but that doesn't mean I don't have them. There are really few people in my life who have a grasp on what life with lupus is like. My husband. My best friend. I guess some of my doctors. It's not that I'm trying to cover up my struggles. I just don't reach out as much in the hard times. I like to share the good things.
I know a lot of other people are like that, too.
Maybe we all need to be a little more honest
with each other.
We might really inspire each other to keep on going when things are tough...in spite of things being tough. To look for the good things in the midst of the messy, difficult, painful, crappy junk that's a part of life this side of Heaven.
Claire: "Do you ever just think,
'I'm fooling everybody?'"
Drew: "You have no idea."
~ From the movie "Elizabethtown" (Cameron Crowe)
We all struggle. We all have things we're dealing with. We need to be REAL with each other so that we can be THERE for each other. Lupus is one of the major things I have to deal with. It impacts every area of my life. Physical, financial, emotional, relational, spiritual. Even though it's a huge part of my life...lupus is NOT my whole life.
This is life with lupus...
And this is life with lupus...
And this is life with lupus...
and this is life with lupus...
and this is life with lupus...
and this is life with lupus...
Click the link above to hear the song. Pretty please.
"Rain"
by Ian Hunter
It's hard to listen to a hard, hard heart
Beatin' close to mine
Poundin' up against the stone and steel
Walls that I won't climb
Sometimes a hurt is so deep, deep, deep
You think that you're gonna drown
Sometimes all I can do is weep, weep, weep
With all this rain fallin' down
Strange, how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud
Rain
It's hard to know when to give up the fight
Some things you want will just never be right
It's never rained like it has tonight before
Now, I don't wanna beg you, baby
For something maybe you could never give
I'm not lookin' for the rest of your life
I just want another chance to live
Strange, how hard it rains now
Rows and rows of big dark clouds
When I'm holdin' on underneath this shroud
Rain
Strange, how hard it rains now
Rows and rows of big dark clouds
When I'm holdin' on underneath this shroud
Rain
Strange, how hard it rains now
Rows and rows of big dark clouds
When I'm still alive underneath this shroud
Rain, oh, rain, oh, rain
"We have troubles all around us,
but we are not defeated.
We do not know what to do,
but we do not give up
the hope of living.
We are persecuted,
but God does not leave us.
We are hurt sometimes,
but we are not destroyed."
~ 2 Corinthians 4:8-12
"Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”
~ John 16:33
"For we are powerless before this great [trial that is] coming against us; nor do we know what to do,
but our eyes are on You.”
~ 2 Chronicles 20:12
"For whether we live, we live unto the Lord; and whether we die, we die unto the Lord. Whether we live therefore or die, we are the Lord’s."
~Romans 14:8
"Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me..."
~Psalm 23:4
'Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness..."'
~ 2 Corinthians 12:8-9
Click on the above link to listen to the song...if you only listen to one song from this post, please make it this one...
you won't be sorry.
The Heart of Life
by John Mayer
I hate to see you cry
Laying there in that position
There's things you need to hear
So turn off your tears and listen
Pain throws your heart to the ground
Love turns the whole thing around
No, it won't all go the way, it should
But I know the heart of life is good
You know it's nothing new
Bad news never had good timing
But then the circle of your friends
Will defend the silver lining
Pain throws your heart to the ground
Love turns the whole thing around
Fear is a friend who's misunderstood
But I know the heart of life is good
I know it's good.
"Autumn Triumph"
Watercolor by Alice Steer Wilson
While we were in NJ, the Emlen Physick Estate in Cape May was having a showing of artwork by a local artist, the late Alice Steer Wilson. I fell in love with this piece for several reasons. First, it's the Cape May Lighthouse. Second, it captures the blazing glory of the Autumn leaves in my favorite season at my favorite place. And I also love the title of the piece, "Autumn Triumph." When I saw the painting for the first time, and then read the title, I was flooded with emotions as the Holy Spirit touched my heart. I cried and told Ben, "I'd like to have this picture. It's so meaningful to me..." That requires a deeper explanation: Although there have certainly been setbacks and struggles in 2015, this Autumn is a triumph. I've only been hospitalized once this year. I haven't had any surgeries this year. My treatments are working reasonably well and I know what to expect from them. I'm not cured, but I'm not dead! I've been able to run this fall. There have been times of sickness and forced inactivity, periods of depression and fear and days of pain and tears. But things are definitely in a better place
than they were last year.
And for that, I'm very grateful.
Coming up...
I'll be receiving another round of rituxan treatments in December (actually, I am due for them in mid-late November, but with a concert and other commitments this month I'm going to wait until after Thanksgiving...hopefully), unless I decide to participate in a new research study, the TULIP study. It's in the very early phases and might not be enrolling participants before I need the next treatments. From what little I've been able to read about the study, the drug being tested will act differently than any other currently available for the treatment of lupus. Even if the study is enrolling participants at the time I'm ready for my treatments, I'm not sure I'll choose the study due to the possibility of receiving a placebo. My doctor seems quite excited about this new drug, though.
In January, I'll be having more extensive (and somewhat nasty) tests performed on my eyes again, to determine if further damage is occurring from Plaquenil usage. At my last appointment, the doctor told me if he sees any more changes that I'll have to discontinue the medication, which we don't want to happen.
I follow up with my list of "ologists" between now and then, too.
I am looking forward to the food on Thanksgiving. Of course, family time and reflecting on the Lord's blessings will be a highlight, too, but last year nothing tasted good and everything went right through me. I intend to savor each bite, with thanksgiving and praise.
Thanks for joining me on the journey...
Click on the above link to hear the song
and see the lyrics.
