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I'm a redeemed child of God and the momma to four vivacious daughters. I'm passionate about finding hidden blessings in the trials of life, living it out in an honest and open way, while encouraging those around me to believe in better.

3 Jul

multiple sclerosis :: an update

On December 31, 2008, I started having weird eye pain and by the end of the week, vision loss. I went in for testing and in January 2009, I was diagnosed with Optic Neuritis. I was told at the time there was a 40-50% chance of it turning into MS within 5-10 years.

Seven months later I was diagnosed with Multiple Sclerosis.

If you read my blog back then, you’ll recall the craziness of symptoms, treatments, and searching for a diagnosis. I recorded those posts under “eye update” and eventually “multiple sclerosis” if anyone has an hour to spare and is looking for some extra reading!

Multiple sclerosis is an autoimmune disease of the central nervous system that has no cure and is highly treatable. In MS, inflammation in the brain and spinal cord causes the loss of myelin, the insulation around nerves. Symptoms include loss of vision, numbness, tingling, excessive fatigue and weakness. They can range from mild to severe.

Through all the craziness and the eventual diagnosis, I feel like I took it all in stride. I didn’t feel sorry for myself and I never asked why. Sure it sucked. It still sucks. And I was honest about that and wrote about it. But I also trusted God had a plan for it all … I still do.

Anyway … with the recent news of Jack Osbourne’s MS diagnosis and all the “hoopla” surrounding it … I thought I’d chime in with a few thoughts.

I watched this video {kind of a long one}, and am kinda struck by the drama of it all. That may sound crass … but it’s how I feel. The family is “devastated.” He lost 60% of his vision in one eye which is “profound and terrifying.” I get it. I do. I was there. I lost part of my vision and it was scary.

I’ve been sitting here for the last 10 minutes contemplating deleting the above sentence and taking a different approach. But something tells me to keep it. It’s the truth. It’s my truth.

With the front page coverage of his diagnosis {and also some press of Ann Romney and her diagnosis}, I wanted to say there are many of us living with MS and the daily struggles it brings.

I guess the good news of the dramatic press coverage is the much needed awareness brought to the disease! I’m thankful for that.

I guess if I could talk to Jack about his recent diagnosis and the things I’ve learned over the last few years, here’s what I’d say:

Hello Jack!

Multiple Sclerosis sucks. Just does. And it always will. But it’s not the end of your life, or the world as you know it. I promise.

The injections you’ll take hurt. They’re a nuisance and annoying. There’ll be many days you just don’t feel like sticking a needle in yourself. But then you’ll remember it’s for your better good and ultimate health and so you’ll bear it. After some injections you may feel the need to tweet “we’ve got a bleeder over here!” and if you hash tag it with #multiplesclerosis, we’ll all understand. We’ve been there. And it could quite possibly be that at that very moment, as we’re holding a cotton ball on our own “bleeder” we’re checking twitter and reading what you wrote.

Your symptoms will come and go. Some days worse than others. Some more debilitating and annoying than others. But as I said, they’ll come and go.

Your limbs may go weak. They may fall asleep quickly and take too long to wake up. Your face may be numb for hours, or days. You may get stabbing pain in different parts of your body. You may feel like there are creepy-crawlers invading your skin, only to realize there’s nothing there. You’ll have brain fog, balance issues, and tremors in your hands and feet. Bowel and bladder issues … in fact, you may find yourself sitting on the pot sending a “private tweet” to a close friend saying, “I’m peeing! I’m peeing!” {or I guess you won’t really be sitting while peeing, so maybe that’s just me}.

And let’s not forget about exhaustion and fatigue. Pure-outright-you’ll-wanna-lay-in-the-middle-of-the-floor-and-nap-for-years exhaustion. You have a newborn in the house and I realize life is exhausting enough with children, let alone a disease that adds to the exhaustion. So be smart and rest when you can, get enough sleep, exercise, and be sure to eat well. These are things I’ve just started doing for myself and I can feel them making me stronger.

The worse part of this silent disease? Most no one will understand while looking at you that your body is screaming to them, “I’m hurting and I’m not okay!”

All this said … I encourage you to move forward with a positive outlook. I pray you use your celebrity to bring awareness and funding. Use your standing to let people know there is life after diagnosis, it isn’t the end of the world, and researchers are working to make advancements towards a cure every day.

Realize there are people all over this world hurting in deeper ways and with life-threatening diseases. MS? Sure, it sucks … but we’ll make it through. In fact, when adversity strikes, I like to ask myself how I can use it to possibly better those around me. What can I learn through the adversity and how can I encourage others.

This is why I’m writing … to encourage you that you’ll make it through this diagnosis and you’ll come out better on the other side!

Feel free to look me up if you’d like to have a chat over a cup of tea and scones!

As for me … last fall I found out I’d built up an immune to the injection I was taking. So I started a new medication that I inject daily. I loathe it. Truly. It’s literally like a wasp/hornet sting nine out of every ten injections. Red, puffy, stinging … the whole thing. Some days it takes everything I have to give myself those injections.

Other than that, my newest symptom, however slight, is a balance issue. It’s embarrassing at times. But it is what it is and I deal with it best I can. I have started drinking a juice that I believe is helping me a lot. My thyroid is starting to even out … I’d been on the same medication dosage for over 17 years and for the first time ever, it’s starting to lower towards normal.

Well … that’s about it on this. Thank you dear readers for your continued encouragement, kindness, and notes. You seriously have no idea how much they bless me!


Posted in eye update, multiple sclerosis


28 Jul

refinement {repost}

There is so much truth in this post.  Who knew when I wrote it over a year and a half ago that I would be standing firm to these words today.  And the whole MS thing?  I believe I was healed from that nasty disease last night!  This is a long post … but so many things to cling to in times of trial … I pray you read it through, and I pray it blesses you.
{original post 12.15.09}

refinement definition

The process of removing impurities or unwanted elements …

I started a bible study in my home a little over a year ago.  It was something God started whispering to me about.  Then it got stronger.  And the signs got clearer.  Everything fell into place.  It’s an amazing story really.

Actually, I’m going to attempt to put the whole story together here … I’ve not done that before.

So as I said … it started as a whisper.  God talks to us like that, you know.  He starts softly … before you get the spanking.  Oh, and for real … you better believe it … God spanks us.  How many of you can relate?

Anyway.

I heard God softly telling me he was preparing me for something.  Then I started getting signs.  Hearing signs.  I started following a blog where she talked about starting a bible study.  The whispering got louder.

Out of the blue, I’d picture myself talking in front of people, telling them my “story.”

You can read more here

So … when I finally figure out that God wants me to lead a bible study … I have no idea what I’m supposed to talk about.

Angie {the blog I linked to above}, was going to be doing a Beth Moore bible study.  So I went to the book store to check into Beth Moore studies.  They didn’t have a single one there.  Now listen … I was in a Christian book store … and Beth is as Christian as they come.  Her books and studies are typically all over a Christian book store.  So the fact I couldn’t find a single one was a huge sign.

What did I find?  A study from Max Lucado called, Facing Your Giants, the story of David.

Facing your giants, huh?  Okay … I’ll bite.  After all, I’ve got me a few giants in my proverbial closet!

I was finally putting together the pieces of the puzzle, and what I believed God wanted from me.  I believe God wanted me to share with others the “giants” I had faced {up to that point} in my life and how He saw me through them.

And if this was the case, there was just one piece left to put into place.  Without that piece, which involved permission from my husband, I wouldn’t be able to proceed.

This particular giant CJ and I have gone through is a biggie.  Doozie, if you will.  And I was purty darn sure he wouldn’t want me talking about it.  In fact, up until that point, only a few close friends had ever known.

So God?  If this is something you want me to move forward with … you know you’ve got a big hurdle to cross here, don’t you?

Wanna know how that turned out?  You can read about how God had the whole thing in His hands, right here.

The rest is really history … We had our first meeting and have been going strong ever since.  We started the study with “Facing Your Giants.”  I started that first night and shared all of the things I’ve been through in my life.  Everything.  The good, the bad, and the very, very ugly.

My purpose was to open my closet and let others see that we all have “giants.”  Some are big, some are small … but they are deep … and difficult … and need the grace of God to see us through them.

It was a great series, and a great book … I highly recommend it if you haven’t read it before.

And anyway … we’ve gone on to discuss marriage and now are studying the end times and a DVD series from John Bevere titled, “Driven by Eternity.”

And … let me loop back around to the purpose of this post …

In our study last week, John talked about being refined like gold.  And that really struck a chord with me.  I talked about it with the group and what it meant to me.  Especially given what I’m going through now with my MS diagnosis and symptoms.

So the gift I’d like to unwrap for you today is … refinement.  And maybe a new way of looking into your own trials and situations.

What is refinement?  The process of removing impurities or unwanted elements.  The process of refining gold means putting the gold dust in a crucible and heating it until it melts. It is then that impurities begin to come up to the surface as a dirty film. The refiner then takes a ladle to scoop off these impurities and discards them.

The refiner may repeat the process a number of times, ‘boiling’ the gold to bring up the impurities and removing them, until he is able to look into the refined gold and can see the reflection of his face, as if he were looking into a mirror.  {text found here}

This is what the bible says:
“These {trials} have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed.”  {1 Peter 1:7, NIV}

What I want to scream to you all … to everyone who is “down on their luck” or struggling with unforgiveness, or going through a trial, or loss, or just plain ol’ being dealt a bad hand … you are being refined my friends!  Embrace it.

And I don’t mean, for one minute, to sound trite.  Believe me … I know.  I know what it’s like to go through some unspeakable things.  As honest and open as y’all think I am, there are still some things I can’t talk about here.

What I can tell you:
~ my parents separated when I was young
~ my father pretty much never wanted to see us
~ my parents divorced
~ the last time I saw my real dad was 32 some years ago
~ and the last words I heard from him were, “you are not my girls anymore”
~ as a child, I was sexually molested three times, by three different men
~ on a separate occasion as a child, I was held at knife point and almost raped
~ I’m divorced myself
~ 4 miscarriages in just over a year
~ I’ve been diagnosed with MS

That’s about where the story ends for now.

Because some of the other things I’ve been through are intensely private and involve other people, I can’t share some of the other things I’ve been struggling with for the last four{ish} years.  And not that I wouldn’t share … I have shared with the 20 some ladies in my bible study group … but because I honestly don’t know how many and who all read this blog, or where the information would go …

But what I do want you to know is … I’m no stranger to pain.  I know a trial or two.

What I also know … God will give you, again and again, the same trials sometimes until you learn {or embrace} the lesson He needs you to get.  Much like the refiner of gold continues to repeat the ‘boiling’ process.

So here’s the thing … and I’ve talked about this before … but we need to be people who embrace what God’s given us.  We need to stand at attention.  Step up to the plate and be ready to swing.

Ask God … talk to Him … find out what He wants you to learn.  We can. not. let our circumstances overcome us.  We must rise above them.  We must realize God has a plan for our lives.

There are a couple of songs that I love.  Give me chills and make me cry every time I sing or hear them.  I’ve linked the titles to a YouTube video of the song.  They’re long videos {over 5 minutes each}, but they’re such inspiring songs.  Maybe you could link and play the music in the background.

Please read the lyrics carefully … let them really sink in …

Bless the Lord
For your beauty,
For your goodness,
And your wisdom.. Awesome God
Praise the Lord oh my soul, Praise the Lord.

For your power,
For your honor,
And your splendor… Mighty God
Praise the Lord oh my soul, Praise the Lord.
Praise the Lord oh my soul, Praise the Lord.

{chorus}

For your Kindness
For your Favor,
For your Mercy.. Gracious One
Thank the Lord oh my Soul, Thank the Lord.

For your fire,
For your testing

And your Spirit… Holy One
Thank the Lord oh my Soul, Thank the Lord.
Thank the Lord oh my Soul, Thank the Lord.

{chorus}

For your Suffering,
For your Anguish
And your sorrow.. humble King,
Bless the Lord oh my soul, Bless the Lord
Bless the Lord oh my soul, Bless the Lord

For your Victory {Victory},
For your Triumph,
And you’ll soon come and reign over all.

The above song … we are thanking.  And praising.  And blessing the Lord … for His fire.  For His testing.  But also his power, kindness, favor and … wisdom.

I rest … trust … in the fact that our Creator has wisdom.  He’ll not have me go through my trials {the trials He’s given me} in vain.

And here’s another thing … I believe when we can have this outlook … this kind of faith … He gives us the peace inside we need to get through it.  I mean, isn’t that a lot of times, the worst of it?  The torment and worry and frustration?  Wouldn’t you want to have a source to “hold” that torment and worry?  Don’t you want a place to rest?

The bible tells us, “Come to me, all you who are weary and burdened, and I will give you rest.”  {Matthew 11:28, NIV}

Blessed Be Your Name
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
And blessed be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed be your name

{chorus}
Every blessing You pour out I’ll
Turn back to praise
And when the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun’s shining down on me
When the world’s “all as it should be”
Blessed be You name
And blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

{chorus}

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
I will bless Your name

{chorus}

And again … with this song, here we are blessing the name of the Lord.  In plenty and in want … I’ll choose to say, “blessed be your name.”

When the sun’s shining down on me … or the road’s marked with suffering … I’ll choose to say, “blessed be your name.”

Ahhh … I could go on and on.

Obviously, I feel passionate about this.  I’ve been working on this post for over a week now and it’s been brewing inside me for even longer.

And if you’re still reading, you deserve a prize! :)

Even after yesterday’s discouragement … I trust in a God who has a plan for me.  I rest in that fact.

Wow … this is a post of all posts … and no photos even!  Sorry ’bout that … but hey … wanna know what God’s been whispering to me lately?

I’ll give you a few hints … it involves:
~ writing
~ chapters
~ a title
~ a hardcover
~ and a lot of work!


Posted in bible study, inspiration, multiple sclerosis, tuesdays unwrapped


18 Mar

ch-ch-ch-changes

There Is A Time For Everything

There is a time for everything,
and everything on earth has its special season.
There is a time to be born
and a time to die.
There is a time to plant
and a time to pull up plants.
There is a time to kill
and a time to heal.
There is a time to destroy
and a time to build.
There is a time to cry
and a time to laugh.
There is a time to be sad
and a time to dance.
There is a time to throw away stones
and a time to gather them.
There is a time to hug
and a time not to hug.
There is a time to look for something
and a time to stop looking for it.
There is a time to keep things
and a time to throw things away.
There is a time to tear apart
and a time to sew together.
There is a time to be silent
and a time to speak.
There is a time to love
and a time to hate.
There is a time for war
and a time for peace.
{Ecclesiastes 3:1-8 NCV}

The time has come for me to close {tsj} photography.  The actual business that is.  My photography business.  Trust me … it’s not been without much prayer and consideration … but right now, it’s the best thing for me and my family.

I’ve decided to keep the business name on my blog {and URL’s}, but I’ll be closing down the actual portfolio/information links on my main website.  Over the next couple of months there may be some glitches here and there, and I’m praying you’ll hang in there and continue to follow me on this journey … this next, next chapter that God is leading me to.

What ultimately is leading my decision are some changes my family is facing right now, as well as the stress said-changes are playing out in my body.  Particularly related to MS.  I mentioned a couple of weeks ago about a relapse of optic neuritis … well, it’s back … again.  In the other eye.  And I started another round of more aggressive IV steroids yesterday.  My vision is quite blurry.  Praying that it comes back, but it could take up to 3 months for that to happen.  With MS when the nerves die, they die … so even glasses won’t get my vision back to normal.  Given this, I just can’t guarantee {or feel the pressure} I can deliver quality, clear images … not to mention the burden of editing images with blurry vision.

Anyway.  So I’ve decided to pursue photography for fun right now.  Who knows? maybe some day I’ll be back.  But for now … a long, much needed break from the responsibility of a career to focus on my health and family.

I’ll also be closing my studio and selling some of my props, etc.  If anyone is interested, please feel free to contact me …

Thank you, dear readers.  I feel so blessed to have this space to connect with all of you … this little outlet that has given me the opportunity to get to know some of you … praying we can continue on this journey together!

Wishing you all a blessed and happy weekend!

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Posted in life, multiple sclerosis, photography


12 Mar

thankful saturday

Thankful for my mommy who joined me for one of my treatments and also challenged me to a game of chess … it’s been years!  She took the first game and the second would’ve been mine if I hadn’t started chatting … darn me!  :)

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Posted in eye update, family, multiple sclerosis


8 Mar

it’s back …

Optic Neuritis that is.  It’s back in my other eye.  It started Sunday after church … vision loss.  Not so much pain {thank goodness!}, but things are pretty blurry outta my right eye.

And now I gotta go back for IV steroid treatments … asap.  As the longer I wait, the more permanent the damage becomes.

Here’s the thing … I’ve been dealing with some other kinds of ‘heavy’ right now … but the great thing was that I’d felt God had lifted my MS and symptoms so that I could deal with the other issues at hand.  I’d really been feeling great lately!  Some minor numbing and this crazy-icky ear pain that comes and goes … but overall, I’ve been doing really well.

Until Sunday.  Right after church.  Great message … great service … great worship.  And then as I’m walking out to the car, I realize my vision is all screwed up.  I thought maybe I had some eye-gunk {sorry!} in there, but nope.  Nothing.  Just blur.

Anyway … can I be honest?  I’m feeling a bit like Job … in fact I mentioned in a recent Bible study that if God wants me to be His Job … if that’s what it takes for my life to glorify Him.  Then so be it!

This absolutely sucks the sucky … but will I back down in my trusting of Him?  Never.  It’s because of Him and His promises that I can stand faithful.

Anyhoo … I didn’t take well to the steroids last time … so would love if you could lift me in prayer over the next week or so?  It took my body a while to recover from them last time.  Thank you, thank you!  I’m feeling blessed knowing you’re out there and care!

And … because no post is fun without a photo … here’s one I took of the girls yesterday on the train to Chicago.  They had a legit day off of school, so we headed to the Shedd Aquarium for a visit with the marine life!

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Posted in eye update, multiple sclerosis, prayers