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!