They say a picture is worth

a thousand words...

 

 

Yes, yes it is my foot in that boot cast. No, no I didn't injure it while running. What happened? Well, you see, I was walking my (totally calm) dog down the driveway and I tripped
over this huge pile of ...

N O T H I N G !!!

Okay, all joking aside, this is just a part of why it has taken me so long to post an update. On Wednesday, October 23, I suffered an avulsion fracture of my left fibula. Apparently, my ankle was stretched so far (in what I thought was just a bad sprain) that a piece of my ankle bone snapped off. Nice. I'm out of the boot cast now. At my follow-up appointment with the orthopedist on Christmas Eve, I got  a NICE early Christmas gift...I'm allowed to resume running. It's been well over two months since I've run at all, and my running was rather

sporadic for about 2 months before that...

 

I'll have some major ground to make up.

 

The orthopedist cautioned me to take it very slow and easy, building up pace and mileage slowly. I'm already registered for a half marathon in early May, as well as running a leg of the Pittsburgh Marathon Relay with my friend and fellow lupus warrior Ashley, so I have some goals to work towards. I would love to run the Rock and Roll Half Marathon in Washington, D.C., in mid-March, but I'm not sure I'll be ready for that. I'm still dealing with some lupus related issues, but I hope to be able to resume running by mid-January.

 

 

 

 

That first run back will be great!

 

 

 

 

I have started writing this post several times over the last few months, but always ended up deleting what I wrote.

 

 

 

 

I thought things sounded too negative and I told myself to wait until I was in a better place and could write

with a more positive attitude...

 

 

 

...but that doesn't seem to be happening! So, I decided it's finally time to write an update anyway.

 

 



 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The fractured ankle is just one among many challenges

 
I've been presented with since I last wrote here.

Here are some highlights of the low points...
 

Broken left pinky toe (incident unrelated to ankle fracture)

 

Lumpectomy (2 lumps in left breast) -- benign fibrocystic breast disease (Praise the Lord!)

 

Superficial Thrombophlebitis (blood clot, not DVT) in my left leg

 

WHAT IS IT WITH THE LEFT SIDE OF MY BODY???

"Count zee left side injuries...one, two, three, four...four left side injuries, ah, ah, ah!"

 

Sinus infection

 

Bronchitis

 

UTI (Bladder)

 

Pyelonephritis (Kidney infection--on the RIGHT side!)

A nasty fall on the porch steps of my home (just bruises and scrapes, thank goodness)

 

Worsening anemia

 

Hypoglycemia testing

Ovarian cysts

Uterine cyst

 

Retinal damage evaluations (freaky eye tests)

 

Lupus flare (including severe headaches, rashes, fevers, fatigue, mouth and nose sores, nose bleeds, chest pain, palpitations, infections, hair loss, etc...)

 

Gall bladder attacks (that sucker is coming out soon)

 

Started Rituxan infusions (a biologic chemotherapy drug...more info on that later)


 

 

AND

 

 

John Edmund Wozny
 

December 23, 1945 - December 6, 2013

 

 

That's my dad. It appears he died quickly with little or no pain, which is a blessing. Although he was not in the best health, he had been rather stable for some time, so his passing was a surprise. My mother died when I was nine years old. My step-mother died over eight years ago. I don't have any biological siblings (although I have three great step-siblings). My grandparents have all passed. And while I do have some very supportive aunts and uncles and cousins and in-laws, dwelling on the situation
can give one a bit of a lonely feeling...

 

 

 

 

 

BUT, praise the Lord for the great hope He has given us! My father trusted in Jesus Christ as his Savior. While it doesn't remove the sorrow, the assurance of my dad's salvation is such a comfort.

 

1 John 5:11-14

 

 "And what is it that God has said? That he has given us eternal life and that this life is in his Son. So whoever has God's Son has life; whoever does not have his Son, does not have life.

I have written this to you who believe in the Son of God so that

you may know you have eternal life."

Early in the Morning 

 

(click the title for a link to the song)

 

Well early in the morning, about the break of day,
I asked the Lord, "Help me find the way!"
Help me find the way to the promised land
This lonely body needs a helping hand
I asked the Lord to help me please find the way.

When the new day's a dawning, I bow my head in prayer.
I pray to the Lord, "Won't you lead me there?"
Won't you guide me safely to the Golden Stair?
Won't you let this body your burden share?
I pray to the Lord, "Won't you lead me please, lead me there?"

When the judgment comes to find the world in shame
When the trumpet blows won't you call my name?
When the thunder rolls and the heavens rain
When the sun turns black, never shine again
When the trumpet blows, won't you call me please, call my name!

 

 

When I was a little girl, my parents would play records all the time and we would all dance around the living room and sing. My parents definitely influenced my eclectic musical tastes. My dad took me to my first concert when I was 11. It was Elton John. My dad used to ask me to play this song on the piano for him.

 

 

Sir Elton John

 

Sad Songs Say So Much

Click on the title to hear the song

 

I guess there are times when we all need to share a little pain
And ironing out the rough spots
Is the hardest part when memories remain
And it's times like these when we all need to hear the radio
`Cause from the lips of some old singer
We can share the troubles we already know

Turn them on, turn them on
Turn on those sad songs
When all hope is gone
Why don't you tune in and turn them on

They reach into your room
Just feel their gentle touch
When all hope is gone
Sad songs say so much

If someone else is suffering enough to write it down
When every single word makes sense
Then it's easier to have those songs around
The kick inside is in the line that finally gets to you
and it feels so good to hurt so bad
And suffer just enough to sing the blues

Sad songs, they say
Sad songs, they say
Sad songs, they say
Sad songs, they say so much

 

 

 

 Without complaining, may I just say that I had the worst

December I can remember...


"6 Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
7 Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
8 They are brought to their knees and fall,
but we rise up and stand firm."
~ Ps 20:6-8


"Though He slay me, yet will I trust in Him."
~ Job 13:15

 

 

Ps 27:1
"The LORD is my light and my salvation —
whom shall I fear?
The LORD is the stronghold of my life —
of whom shall I be afraid?"

Ps 27:4

 "One thing I ask of the LORD,
this is what I seek:
that I may dwell in the house of the LORD
all the days of my life,
to gaze upon the beauty of the LORD
and to seek him in his temple."

Ps 27:13-14

 "I am still confident of this:
I will see the goodness of the LORD
in the land of the living .
Wait for the LORD;
be strong and take heart
and wait for the LORD."

 

 

(Jesus said,) "In this world you will have trouble. But take heart!

I have overcome the world."

~ John 16:33

"Weeping may endure for a night, but joy cometh in the morning."

~ Ps 30:5

"To all who mourn in Israel he will give:
beauty for ashes;
joy instead of mourning;
praise instead of heaviness.
For God has planted them like strong and
graceful oaks for his own glory."
~ Isa 61:3



"35 Who shall separate us from the love of Christ?
Shall trouble or hardship or persecution
or famine or nakedness or danger or sword?
36 As it is written:
"For your sake we face death all day long;
we are considered as sheep to be slaughtered."  
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from
the love of God that is in Christ Jesus our Lord."
~ Rom 8:35-39

 

It's     not     all     bad;   not   by   a   long   shot.

 

 

 

 

 

 

 

 

 

David and I had a great time at Color Me Rad in September!

 

 

 

 

 

And, of course, there is the wonderful fact that my lumpectomy in September showed that...

 

I DO NOT HAVE BREAST CANCER!

 

 

 

 

 

We had a wonderful time away in Southern New Jersey in October. It rained about 80% of the time we were there...but that's okay!

At least we were at the ocean...

 

 

 

 

 

 

And while we were there, I was able to participate in the annual "Nun Run" for the Sisters of Saint Joseph

 

 

Sisters' Class of 1963 reunion attendees cheering us on!

That's me on the far left in the purple shirt.

 

And I completed the Atlantic City Marathon 10K (6.2 miles) in steady rain. I don't mind running in the rain as long as it's not too cold. I'm glad that even though I ran rather slow, I was able to run the whole distance with only a couple of short walk breaks. As I had not been training regularly,

I'm proud that I finished and had a good time!

 

In the starting corral

 



 

Start of the race. That's me in the pink with the do rag!

 

 

 

Coming down the home stretch

 

 

Getting my finishers' medal!

 

 

 

Pluviophile: a lover of rain; someone who finds joy

and peace of mind on rainy days!

 

 



 

 

 

And we went to hear Willie Nelson play live!

 

 

 

I have a "people to hear play live before I die" list, and Willie was on it!

 

CHECK!

 

Willie sings "Blue Eyes Crying in the Rain"

 

 

We have tickets to cross a few more names off the list

early next year, too...

 

Sting, Paul Simon, and Billy Joel!

 

 

 

 

We had a quiet Christmas.

 

 

Our angel tree topper. I made it in Kindergarten!

 

Our nativity set

 

Santa Claus (also known as Ben) was good to me! I've been collecting Hagen Renaker animals since I was a young girl. My grandmother used to take me to the local newsstand, which sold the animals, and let me choose one after a good report card or as a special treat. Ben found a few new additions on eBay. The circus elephants and warthog are some of our new critters!

 

 

 

 Ben also got me a nice holder for my running medals.

 

 

"I run in the path of your commands for you have

set my heart free."

Psalm 119:32

 

Now instead of displaying my medals

on the sides of our quilt rack...

 



 

I have a beautiful hanger on which to showcase them!

 

 

 

 

 

 



 

 A MEDICATION UPDATE

 

 

From May 2012 to May 2013, I had been taking a monthly IV infusion of Benlysta, the first drug developed specifically for lupus. Here's a link to information about Benlysta:

 

Benlysta information

 

While the Benlysta was giving me some benefit--namely more energy--it was also causing me to have much more frequent infections, some of them serious. It also caused me to spend up to a week each month in bed recovering from the side effects of the medication. Following my infusion in May 2013, my rheumatologist and I decided to hold the Benlysta for several months and try to make a decision about whether to continue it or try something else.

 

In late July, I stopped taking CellCept, an oral medication that had been working well for me. My doctor and I wanted to try methotrexate instead, to see if it would help my joint pain more. Methotrexate is taken as an injection once a week. Methotrexate is commonly used to treat rheumatoid arthritis and some forms of cancer. CellCept is an anti-organ rejection drug used after transplants. They both have immunosuppressive properties (which means they keep the immune system from working too much, which would hopefully suppress lupus activity.) Here are links to more information on those two medications:

 

methotrexate injection information

 

CellCept information

 

Ultimately, it was decided that we would try something other than Benlysta, based on the side effects I was having. My hematologist suggested Rituxan, and my rheumatologist agreed. Getting insurance to approve Rituxan for lupus can be tricky. All insurance plans have different guidelines. My insurance required that I tried and "failed" at least two other immunosuppressant medications. Several years ago, I tried Imuran, but did not have the enzyme to metabolize it (which made me quite ill.) And, although Benlysta was giving me some benefit, when weighed against the side effects, the benefit was not enough to justify continuing it at this time. So, those were my two "fails," and Rituxan was approved quickly for me. Some lupus patients have a different experience getting approval. I'm thankful that my experience was not complicated. 

 

After taking methotrexate for four months, we also decided that this was not an ideal medication for me, at least at this time. I was taking the shots on Sunday nights, spending Mondays in bed, feeling iffy on Tuesdays, and feeling okay on Wednesday-Friday, and not so great on Saturday and Sunday. I was experiencing nausea and mouth sores. So, even though the methotrexate was helping my joint pain to some extent, it wasn't helping other symptoms and was causing me to miss at least a whole day every week. AND from the time I started methotrexate in late July to the time I stopped it in late November...I gained about 17 pounds. Some other lupus friends told me they gained weight on methotrexate, and some said that wasn't a problem for them.

 

 

 

 

 

Now that winter has set in, Raynauds is rearing its head. Raynauds is an overlap disorder that many people with lupus experience. It is a problem with blood flow to the extremities. It can be scary and painful. My left foot is the worst affected. There are days when my the toes of my left foot remain purple for hours, no matter how warm I try to get them. Medications to improve blood flow are often given for Raynauds. These medications also lower blood pressure. My "normal" blood pressure is approximately 90/60, so I can't take these medications due to the risk of my blood pressure going too low. I develop sores (sometimes called Chillblains lupus) on the tips of my toes and fingers at times. They are very painful. Here is a link to a well-presented explanation of Raynauds:

 

Raynauds Information

 

 

I'm guilty...

 

 

 

On December 13, two days after our private family memorial service for my dad, I started my first round of Rituxan infusions for lupus. Click the link below for more information about rituxan.

 

 

Rituxan information

 

 

 

When used for lupus, 1000 mg of rituxan is infused on day one and again on day 15 (two weeks later). The infusions take seven to nine hours. My sweet hubby, Ben, took me to both infusions and spent both days sitting in a folding chair next to my infusion chair.

 

 

 

 

 

 

During the first infusion, I experienced two infusion reactions--the first being a rash, flushing, itching and hives; the second being a cardiac reaction. This second reaction caused the infusion to be stopped before I received the full dose of rituxan. Thankfully, my doctor agreed that I could go ahead with the second infusion. Things were done a little differently (my premeds were given longer to take effect and the rituxan was dripped at a slower flow rate) and I only experienced some itching, sneezing and stuffy nose/sore throat...until we got home. In the middle of the night following the second infusion, I awoke to a swollen face, ears and lips, bright red face and neck, shaking chills, itching, wheezing and cough. I took Benadryl around the clock for a few days and things seem to be okay now. I did not want to go to the hospital for fear my doctor would discontinue the medication. I really want to give this medicine a chance and see if it will work well for me. It should take a few weeks to notice an improvement from the Rituxan. The best part about this medication is that infusions only happen two or three times per year, for a total of 4 or 6 treatments yearly. Because rituxan can decrease white blood cell counts (sometimes drastically) it's really important to be careful not put yourself at greater risk for getting sick for a few weeks following infusions. My nurses told me that the white cell suppression is greatest about two weeks out from each infusion. They suggested I wear a mask if I had to be around crowds of people or in close proximity to someone who was sick. So, I've been wearing a mask to church, when visiting for Christmas, at the grocery store, etc., and I'll need to do that until about mid-January. If it keeps me from catching something, it's worth it!

 

 

Here's me two days after my first Rituxan infusion...

not feeling so hot.

 

And this one is about ten days after my first

Rituxan infusion, feeling improved.

That's my kitty, Fflewddur Fflam with me.

 

 

So, in addition to Rituxan, I'm still taking daily oral steroids (at a low dose), daily oral plaquenil and daily oral CellCept, along with some supplements and vitamins.

 

One nagging issue I'm still having a lot of trouble with is headaches centered around my eyes. So, actually I'd call them eye aches! If you took a magic marker and drew a circle around the perimeter of my eyes then you would be marking where the pain is located. It's not on my forehead or temples (or anywhere else on my head) or cheek bones...just encircling my eyes. In January 2012 we discovered that my retinas had sustained some damage, whether from lupus or something else. I'm under the care of a retinal specialist, and he feels the pain is not related to the damage. So, this is something I am hoping to get figured out soon.

 

 

When I'm feeling better and able to exercise and participate in more activities, some well-meaning friends and relatives assume that I'm "all better" and won't have problems again. The fact is that lupus is a life-long, chronic disease. There are periods of disease inactivity or low disease activity and then there are flares when disease activity is high and I feel awful. The goal is to keep the disease activity low so that my organs will not be damaged further.

But, at least until a researcher discovers a cure,

I'll have lupus for the rest of my life.

 

 

 

 

 

 

 

 

 

I am really looking forward to getting back on the road (and the treadmill) and in the gym to re-build some of the

strength and endurance I've lost. (And to get rid of these few extra pounds that I've found...)

 

 

 

 

 





 

 

 

 

What am I training for...LIFE!

 

 

 

 

Click on the link below to hear a GREAT inspirational song:

 

I Run For Life

 

It's been years since they told her about it
The darkness her body possessed
And the scars are still there in the mirror
Everyday that she gets herself dressed
Though the pain is miles and miles behind her
And the fear is now a docile beast
If you ask her why she is still running
She'll tell you it makes her complete

[Chorus:]
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life

It's a blur since they told me about it
How the darkness had taken it's toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
And now I'm still learning the lesson
To awake when I hear the call
And if you ask me why I am still running
I'll tell you I run for us all

[Chorus:]
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life

And someday if they tell you about it
If the darkness knocks on your door
Remember her remember me
We will be running as we have before
Running for answers
Running for more

I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life
Ohohohoh

I run for your mother your sister your daughter your wife
I run for you and me my friend: I run for life!

 

 

 

 

 

 

 

 

 

 

 

Lam 3:21-24

Yet this I call to mind
and therefore I have hope:

 Because of the LORD's great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, "The LORD is my portion;
therefore I will wait for him."

 

 

 

 

I'm sorry if it seems that this post jumps from topic to topic...

that's kind of how I feel like my life has been going

lately, too -- jumbled, fractured, bumpy. Thanks for coming along for this portion of the journey. Who knows what tomorrow holds? I'm thankful I know who holds tomorrow!

 

 

 

 

Happy New Year! New Year's Eve is my hubby's birthday AND the day we got engaged 19 years ago! Ben had taken me to a fancy restaurant on Mt. Washington, in Pittsburgh. He planned to pop the question on one of the overlooks on Mt. Washington. It's a spectacular view with fireworks at midnight! BUT...I got sick after our supper and we came home! We put on sweats and watched Dick Clark at his parents' house. At midnight, Ben turned off the TV and totally surprised me by getting down on one knee! I said yes! The next day we were having a family lunch at his parents' house. We planned to make our announcement. I was sitting next to Ben's mom. Just after the meal began, she tapped my knee and slipped something into my hand under the table...it was the box from my engagement ring! We had left it in the living room the night before! She kept it to herself, though, and Ben shared our news! We were married 6 months later...and the rest is history!

 

 



 

 

 

 

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

 

 

 The End of the Line

click on the title to listen to this GREAT 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
(At the end of the line)
Waiting for someone to tell you everything
(At the end of the line)
Sit around and wonder what tomorrow will bring
(At the 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, every day is Judgment Day

 

Maybe somewhere down the road aways
(At the end of the line)
You'll think of me and wonder where I am these days
(At the end of the line)
Maybe somewhere down the road when somebody plays
(At the 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 will 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
(At the end of the line)
I'm just glad to be here, happy to be alive
(At the end of the line)
It don't matter if you're by my side
(At the 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


 

 Here's a picture of me from the first weekend of January 2013...

 

 

It's also one of my favorite "running" photos. This was just a few minutes before I started my first ever half marathon. I didn't know Ben was taking my picture. I think I look focused and kind of fierce in it. I remember feeling scared and excited and determined and thankful (though I know I was definitely feeling more thankful when I finally FINISHED the race...) I know I can get this feeling back! Ben is always so supportive of my interest in running, and protective of my health at the same time. My dad was supportive of my running, too. He would sometimes tell me to run for him. So, as I slowly start running again, I'll be running for Ben...and for my dad...and for my friends with lupus...for people who inspire me to keep fighting...to spend alone time with God...to feel free.

 

 

Join me in the journey...

 

 

 

 

 

 

 

 



Only one asthma attack in December for this little dude!

Yea though I walk through the valley of the shadow of having to scratch on three half marathons...

 

 

 

Howdy! It's been a while since I've posted. As I've mentioned before, one of the most needed characteristics for dealing with lupus is FLEXIBILITY. I'm a type A (like, to the core), and flexibility is not my greatest feature. You can tell from the title of this post that my goal of completing one half marathon per month from May to November is ... well, let's just say it's on hold ... indefinitely.

    And, while I've been working hard to attach double-stick tape and flypaper to my joy...it's a tricky business. It seems that joy should be easy to grasp and hold, but the fact is that joy can be a slippery little sucker. Unfortunately, when you're dealing with lupus, holding on to the things you love the most can be like opening a jar full of homemade sauce with greasy hands ...          ... you make no progress getting that thing open, you grit your teeth and put all your energy into opening that jar. It starts to slip around, you lose your grip, then you drop that beautiful thing you're holding onto, and you make a big mess. Maybe you cry when you see what happened, or you get frustrated while you're trying to clean up that broken mess. Of course, cut yourself on the glass and make things even worse, and then you end up hurting, throwing the whole shebang in the trash and you just give up on having that thing (the sauce--you know, the project, the vacation, the relationship, the activity --like running--) that you love so much.       Ps 51:15-17    Unseal my lips, O Lord,
that I may praise you.
 You would not be pleased with sacrifices, or I would bring them.
If I brought you a burnt offering,
you would not accept it.
The sacrifice you want is a broken spirit.
A broken and repentant heart, O God,
you will not despise.

Ps 143:5-9    I remember the days of old.
I ponder all your great works.
I think about what you have done.
I reach out for you.
I thirst for you as parched land thirsts for rain. 
 Come quickly, LORD, and answer me, for my depression deepens.
Don't turn away from me,
or I will die.
Let me hear of your unfailing love to me in the morning,
for I am trusting you.
Show me where to walk,
for I have come to you in prayer.
Save me from my enemies, LORD;
I run to you to hide me.

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.   Job 8:21   God will yet fill your mouth with laughter
and your lips with shouts of joy.    

 

Lupus itself can cause depression; some lupus medications can cause depression; dealing with the symptoms, the changes to your body,  and the loss of power that lupus brings can cause depression.

 

Running isn't about medals or PR's. It's about taking your POWER back.

 

 

This is SO true for me.

 

 

 

 

 

I am not a fast runner--in fact, my

fastest mile ever was only 10 minutes.

 

But, I'm not running to be fast.

 

Although I've never finished dead last in a race (though I've come close), I've also never finished first.

 

But, I'm not running to be first.

 

As a runner with lupus, it is almost impossible to have a regular, charted training schedule, and because of that it's very hard to make progress and become a more efficient, fine-tuned runner.

 

But, I'm not running to be a fine-tuned runner.

 

No,

 

I'm not running to be fast or first or fine-tuned...

 

I'm running to be FREE.

 

I'm running to be free from thinking about appointments and treatments. I'm running to be free from worrying about medications and side-effects. I'm running to be free from the fear and disappointment. I'm running to be free from the depression and chase my joy! I'm running to free my mind and spirit so I can better hear my Lord's voice and receive what He has for me.

And even though I haven't been able to run nearly as much as I'd like the last 6 weeks or so, all of the miles, all of the sweat and effort, all of the little (or huge!) victories are STILL IN ME! Nothing can take that away.

 

  So, just how much running have I been doing? Not a lot and not enough!      

      Since the beginning of July, my running has not been regular. I've had several episodes of heat exhaustion, even in relatively mild temperatures. Sun exposure and lupus don't mix and when you're also taking medications that warn you to limit sun exposure, things get even trickier. Most recently, I was running a 4.5 mile route near home with temps in the low 60's. It was very early and misty when I left home, but the sun burned off the fog at about mile 3. Nearing mile 4, I broke out in goose bumps, got dizzy and began to stumble. I got nauseated and had stomach cramps and my arms and hands were cold. I had stopped sweating.  Thankfully, I was near the end of the run and near home, so I walked the rest of the way, stopping for breaks in whatever shade I could find. It scared me enough that I haven't been outside for a run since. I often refer to the treadmill as the dreadmill, but until the sun gets less intense, the dreadmill and I are going to be buddies.   As the title of this blog entry says, I've had to scratch (pull out, i.e. not do) three half marathons. In July, I did not do the Burgers and Beer Half Marathon. Because it is a virtual race, I can make that one up when I'm ready and still earn my finishers' medal. I DID bike a half marathon in July, and that felt great! I didn't do the Columbus Half Marathon on August 11. I was signed up to run the Virginia Beach Half Marathon on September 1, but pulled out of that one, too. It has a 4 hour time limit, and I'm positive I could finish it, even if I walk the whole thing, but the stress that would put on my body, my lack of training, the intense sun exposure during the race, plus the 8 hour car ride (one way) and hotel stay...it just didn't seem like a smart decision to participate right now.  This was going to be a girls getaway for me and my best girlfriend, Maggie. She is super understanding when lupus ruins things like this, and she is very supportive. Lupus can make it hard to have long-term, meaningful friendships.    I'm so thankful for Maggie!  

Me and the Magster

     I'm still trying to complete the 100 mile challenge for Diabetes. I'm at 70 miles as of today. I'm thankful the challenge director gave me the leeway to take longer than a month to complete the miles. I'll also have to "make up" two 15 K virtual races. Some people poo poo virtual races, but I really like them. They motivate me. I sign up and pay the entry fee, which goes to charity. I complete the miles when I can, on the course I choose (which can even be the dreadmill) and when it's completed, I hang the "bling" on my "wall of fame", which inspires me to keep going. Okay, I actually hang the bling on a quilt hanger in my foyer, but, you get the idea... If you're interested in checking out the virtual racing scene, a good place to start is the Facebook group VirtualRuns. Look under their events tab for a complete list of available races.   Here's a link to their page: VirtualRuns   And, while I'm giving shout outs to websites, here are two more...   I LOVE RUNNING4HIM! So inspiring! Here's the link: Running4Him   and   Running For Lupus is an organization devoted to spreading lupus awareness. Here's the link:  Running For Lupus   Check out their "lupus hand sign" video, too: Lupus Hand Sign  

    Next weekend, I'll be doing Color Me Rad with my friend David to celebrate his birthday! We're gonna have a blast and we're gonna get DIRTY ... er ... COLORFUL!    

 

    My hubby and I will be headed to southern New Jersey in October. I had planned to run the Atlantic City Half Marathon while we're there, but because I'm not sure how soon I can resume running after surgery in September, I decided to run the 10K distance instead of the Half.   I LOVE THE OCEAN!   I hope someday I can live A LOT closer to it!    

    And, call me crazy, but I signed up for the "Destroy the Ring Challenge," a virtual running challenge in 2014. I'll be retracing the steps of Frodo Baggins, all the way from Hobbiton to Mount Doom; all 1779 miles worth! I will run some, bike, swim some, and maybe even crawl some, but I'll get there! As Gandalf said, "All we have to decide is what to do with the time that is given to us."      

      My husband is my hero! He is the most kind and caring person I have ever met. I know it must be really hard for him to see me in pain and struggling with lupus. I know he wants to fix it all, but he can't and that must be hard to accept. He is so supportive, sharing my burdens and fighting right along with me. He is my best friend and biggest blessing.    

      I want to say a huge thank you to all of you who pray for me and follow my posts. I appreciate you! Earlier this month, I ventured out for a run after two weeks of no running. I ran into a neighbor walking at the end of her driveway. She gave me a big smile, threw up her arms and said, "Woo hoo!" "First time in weeks," I told her. "Let's hope it continues," she said, with a thumbs up. Wow, that next half mile was easier than any I've run in a long time! Encouragement is a powerful thing! Thank you, Mary Fox! Hope I see you again soon!   I'm also really thankful for "my girls,"-- those special ladies the Lord has put in my life. I have some great friends and I couldn't get through things without you! You know who you are, and you know I love you!       Now for a lupus update...      I have been experiencing lupus activity in my nervous system, both CNS and autonomic nervous systems. Thankfully, it's not as bad as last summer, when I couldn't drive, had terrible headaches, was using a cane to walk and had lots of cognitive problems with things like memory and speech. Right now, I'm having headaches, fevers and significant fatigue almost every day, and autonomic issues like palpitations, high resting heart rate and hypoglycemia. Click the link below to read more about how lupus can effect the nervous system.    Lupus and the Nervous System   I've also been having more frequent infections. In June, I had a sinus infection, which developed into bronchitis in July. Then, in August, I had a bladder infection which progressed to a kidney infection--not fun. All these infections required treatment with antibiotics and high dose steroid shots. I also had a bout of costochondritis, which is an inflammation of the connective membranes of the ribs and breast bone. It can cause severe pain, but thankfully is not damaging to the lungs or heart. Even so, it can make deep breathing painful, which is not good for a runner.   Here's a link to more information on costochondritis:     Mayo Clinic information on costochondritis       Medication-wise, things have changed as well. At the time of my last post, I was taking CellCept, Plaquenil, Prednisone, Elavil, and was holding Benlysta infusions. May 2013 was my one year anniversary of taking monthly IV infusions of Benlysta, the first new drug developed specifically for the treatment of lupus in 50 years. I wasn't sure the benefits of Benlysta were outweighing the side effects it caused. So, my doctor and I decided we would hold the Benlysta for a couple of treatments to try to evaluate its effectiveness.     The verdict: Benlysta was helping me MORE than I realized.     The solution: resume the treatments.     The problem: I found three lumps in my left breast earlier this year, and subsequently had mammogram and ultrasound.     I was then sent to meet with a surgeon. The insurance company wanted me to go straight to having a lumpectomy, but my surgeon argued that an MRI could possibly eliminate the need for surgery, or at least help them have a more detailed view of what was going on. After wrangling with my insurance company over their denial of covering a breast MRI, I'll be having a lumpectomy in early September.  What a headache! It's likely that the lumps are cysts, fatty tissue or enlarged lymph tissue (which I also had three years ago). When I shared the situation with my lupus doctor, she forbid me going back on the Benlysta until we know for sure the lumps are not abnormal tissue. If there is something abnormal going on, the Benlysta could cause or accelerate the growth of the abnormal tissue. Which would, of course, be very bad.     So...being off of Benlysta caused an increase in my fatigue, fevers, joint pain, cognitive issues, chest pain, autonomic issues, etc., etc., etc... Since there is no Benlysta until at least October, my rheumatologist  switched my CellCept to Methotrexate. CellCept had been a good medication for me, giving results with little side effects. But, taking too many immune suppressants is not the best situation. So, for now, I'm taking Plaquenil, Prednisone, Elavil and Methotrexate. The methotrexate is taken weekly by injection. My husband gives me the shots here at home. This dope is no joke:    

 

 

 

 

 

 

Because I have obligations as a musician on Wednesdays, Thursdays and Sundays, I take the methotrexate on Sunday nights. I spend Mondays in bed. By Tuesday, I feel much improved from the side effects. Just last week I finally started to see some improvement in my joint pain and fatigue level, although they haven't been eliminated. Hopefully as we titrate up on the dose the pain and fatigue will continue to lessen. I've had some mouth sores, itching and mild hair loss. I also have heightened fatigue, stomach pain/nausea and dizziness for 24 to 36 hours, but if the improvement in joint pain and overall fatigue level continues, I'll take it! Hopefully adding back the Benlysta will help even more.

 

 

My rheumatologist explained lupus medications to me in this way: Plaquenil and Prednisone are the base-line treatments. Drugs like CellCept, Imuran and Methotrexate are added as mid-level disease fighters. When the mid-level drugs are not enough, things like Benlysta, Rituxan or Cytoxan are added.

 

 

 

Distance running can teach us a lot about life. Some runs are really difficult. You hurt, you're hot, you can't get your breath, you hit "the wall" and you lose the desire to continue. You just want to hang up your shoes and quit. But, something makes you push through to the end, other runners offer support, prayer gets you going, and overcoming those obstacles makes reaching the finish even sweeter. It's just like life; sometimes life hurts, sometimes it REALLY hurts, and sometimes you just want to quit, curl up in a ball and cry forever. But, with God's help, with the power of prayer, with the help of people who care, you find the will to keep going, keep fighting, keep overcoming those obstacles and enjoy the sweet victories along the way. 

 

 

 

 

 

 

 

A lot of people don't realize that chemotherapy is used to treat lupus. Some people with lupus take chemotherapy indefinitely, for months or years, not just for a set period of time. I've talked with some lupus friends about how often people will tell us, "Well, it could be worse; you could have cancer." And while it's certainly true that cancer is HORRIBLE and painful, and that it causes suffering and death, and that we need a CURE for CANCER, lupus is no walk in the park. Lupus can be horrible and painful, it can cause suffering and death, and we need a CURE for LUPUS, too. Both my father and step-mother suffered from cancer. I wouldn't wish that on anyone, especially me!

But I wouldn't wish lupus on anyone either.

 

 

 

Okay, enough with this serious stuff!

 

 

 

 



 

 

 

Just this past weekend I started trying to eat gluten free. While I don't have celiac disease, a lot of people with autoimmune diseases see an improvement in their symptoms when they eliminate gluten. Gluten has been shown to increase inflammation in folks with immune system diseases. I hope that eliminating gluten will cause an improvement in my energy level and cognitive dysfunction. I also hope I don't go crazy! I LOVE BREAD! And gluten is hiding EVERYWHERE! Dressings, sauces, snacks, cereals, shredded chesses, soups, etc. We'll see what happens. Maybe I'll even lose some weight, too, as I put on about 10 pounds practically overnight since starting the methotrexate.

 

 

 

Here's a recent, funny "blame it on lupus" incident...

 

 

I like to shop (online mainly) at jjill. Love their clothes, love their sales! Anyway, back in early July, I ordered a lightweight sweater from there, which I wore once, and then the neckline unraveled. I called and asked them to send me another, which they did. However, I subsequently started the methotrexate, and my weight blew up about 12 pounds in 2 weeks. When I tried on the new sweater, it didn't fit! So, I called and ordered another in a bigger size. The operator was like, "wow, you must REALLY like this sweater..." I assume because she could see that I'd ordered it THREE TIMES in a month!

Blame it on lupus!

 

 

 

 

N E W S      F L A S H

 

 

This happened a few months ago, but I forgot to mention it ... our local newspaper did a story about me in May for Lupus Awareness Month.

Click on the link below the photo to read the article:
 

Former Miss Rain Day Adjusts to Life with Lupus

 

In another matter, our male cat, Fflewddur Fflam, was diagnosed
with feline asthma last month.

We thought he had a MAJOR hairball, but after an entire weekend of wheezing and horking--and one very scary night when we thought we might lose him--our vet diagnosed the problem. Fflewddur was put on steroids and immediately improved. I also take steroids to control lupus. So, the joke of the moment is that my cat and I are both taking steroids. The steroids are helping my little Fflewddur bug. The two times that I accidentally forgot to give
him his medicine, he had asthma attacks.
If you've never seen a cat have an asthma attack, it's really pitiful!

 

So, I'll leave you with a photo of my new running kicks! Nothing like a new pair of shoes to get you motivated to get back out there! Here's hoping we can wear them out together!

 



Join me in the journey!

 

    Isa 40:27-31
  Have you never heard or understood? Don't you know that the LORD is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of his understanding.  He gives power to those who are tired and worn out; he offers strength to the weak.  Even youths will become exhausted, and young men will give up.  But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.    
  And until next time ... remember ...     "It just takes some time, little girl you're in the middle of the ride.
Everything (everything) will be alright, everything (everything) will be alright (alright)."   ~ "The Middle" by Jimmy Eat World       Click on the link below to listen to the song...AND DANCE AROUND!     The Middle by Jimmy Eat World

 

 "Sadness is easier because it's surrender. I say make time to dance alone with one hand waving free."   ~ from the film "Elizabethtown"