Triumphs and Setbacks

I’ve had an incredible, note-worthy week.

Most remarkably – Last Thursday, my nutritionist gave me a miracle supplement.  It’s disgusting because I have to suck the coating off of the pills to stimulate bile, but I would suck on those bad boys until the end of forever if they make me feel this good.  My stomach immediately got better and I have had seven straight days with NO TUMMY TROUBLES.  I have gained almost five pounds in one week.  For real.  It’s the birthday cake, friends.  Just goes to show how starved my poor little body has been.  I’m not naive enough to think this blessed bliss will last forever, but I am enjoying every precious second and morsel of food!  Food, glorious food!!

Close second – My sweet friend took pity on my poor, over-sized wardrobe and gave me a birthday gift card.  I cannot tell you the last time I actually bought NEW clothes.  If I start losing my pants due to the weight loss, I will go to a thrift store.  Buying new clothes was a different experience for me.  At first I was sort of intimidated, but by the end I was singing Lorrie Morgan’s, “I’m Looking for Something in Red” at the top of my lungs… or maybe just in my head, but still.  A full belly and clothes that fit.  What more could a girl want?

Setbacks – There have been setbacks, for sure.  If it’s not my stomach, it’s my swollen, painful parotid (salivary) glands.  I woke up Sunday morning with some massive ones and had to go to First Assist for steroids.  I despise medicine and hate how jittery it has made me feel, but I’m not in as much pain.  It’s often a trade-off with me.  Can I tolerate the horrible symptoms of my disease more than I can tolerate potential side-effects of a medication?  Real-life gambling, folks.  Jason probably wants the steroids finished so I quit jabbering so much.  Talking and eating.  That’s what I’ve done this week and it has been magical!

BIG NEWS

Today was not especially fun.  I had two follow-ups from the biopsy I had of my salivary glands last week.  I spent most of my day listening to the doors of doctors’ offices screech like banshees, but I digress.  I swear I will bring them some oil next time.

First of all, my lip is healing fine for the most part.  All of my sutures fell out long before they were supposed to, so I have a gaping hole in my lip.  See, I’m always special. But it’s slowly healing and just feels like a very annoying canker sore. The results of the biopsy definitely support Sjogren’s.  So, there you have it folks.  After years of trying to convince doctors that there is ‘something’ wrong with me, I finally have the official diagnosis of Sjogren’s Syndrome.  

Sjogren’s Syndrome is an Autoimmune Disease. As with most Autoimmune Diseases, the body mistakes its own cells as something to fight off and starts attacking itself.  I love the meme that I will censor slightly that says –

“Autoimmune Disease – Because the Only Thing Tough Enough to Kick My Butt is Me!”

In the case of Sjogren’s Syndrome, the body attacks all of its moisture-producing glands. My eyes are so dry that I can no longer wear my contacts and I am so thirsty ALL THE TIME.  My parotid (salivary) tubes get dry and form little stones and when bacteria gets behind those stones, the glands swell up and become extremely painful.  It also can affect many other areas of the body. I seem to have a fairly rare, but not undocumented connection to the stomach and random food intolerances.  My favorite quote from a fellow ‘Sjogie’ thus far is, “I hate getting invited to anyone’s house for meals because I have no idea what I will be able to eat that day.”  True, that.  It is a gamble putting anything in my mouth at any moment of any day.  The Rheumatologist is not entirely convinced that Sjogren’s is causing my stomach issues.  He says it might be, but it’s very difficult to prove that and fix it.  So, for now he gave me some info to read on a medication that would basically make my glands produce more moisture, but may make my stomach worse.  It really has to do with my comfort level in trying new medicines, and I’m so anti-drug, it scares the daylights out of me.  For now I’m just going with the flow and enjoying my tummy relief while it lasts.

1 Corinthians 13:12-13 (NIV) – “Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.  And now these three remain: faith, hope and love.  But the greatest of these is love.”

This week I have experienced faith in the knowledge that God has control of my triumphs and setbacks.  I have experienced some hope in finally receiving a diagnosis.  I have experienced love in a kind friend and outpouring of prayers.  I have really felt ‘known’ this week, by the loved ones who know exactly what I need when I need it, by the doctors who finally recognize a problem, and by the relief of some of my symptoms.  If this is “but a poor reflection”, I truly cannot wait to see God face to face and be FULLY known.  Oh, how glorious!

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God Provides

It’s been pretty rough around here lately.  Most of you know that I’ve been very sick and had to leave my job at the end of last year.  These last few months have been a constant battle between spending money on supplements that may make me feel better for a day or two, or suffering because I have nowhere to go anyway.  That student loan bill that still comes like clockwork each month is a kick in the gut, seeing as how that particular career seems to have gone down the drain, at least for the time being.  But, I digress.

Somebody (namely, me) had a birthday last week and, as birthdays go, there are often special meals, an AMAZING gluten-free, egg-free chocolate cake made my by beloved (I may or may not have had three pieces yesterday), gifts, and the like.  You know, extra expenses.  If I’m going to go all-out with this blog thing, I might as well tell all, right?  Being an open book makes life so much more interesting.  I guess I don’t mind telling you that we goofed on our budget.  Auto-draft for bills is a blessing and a curse all wrapped up in one.  Praise God for overdraft coverage, anyone?

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I’m fairly certain that Jason’s plan for this week was just to not eat at all, while I was frantically entering ingredients into myfridgefood.com, attempting to come up with creative meals involving ground beef, rice, half-rotten veggies, and five cans of coconut milk.  I woke up this morning armed with birthday money and a bag of change that would cover our overdraft and headed to the bank.  On a whim I decided to close the individual savings account they forced me to open when I first took out the mortgage and haven’t touched since.  I thought it might give us a few extra dollars in the joint account.

ENTER, GOD. That savings account, that I swear I have not touched in years, had $812 in it.  EIGHT HUNDRED AND TWELVE DOLLARS.  They almost had to pick me up off the floor of the bank. I have a slightly vague memory of possibly putting a little tax return money in there from a previous year because I used to be so much smarter with money, but no account builds that much interest.  I’m going to stick with GOD PROVIDES.

How else can I explain the fact that last month the bank told us we had gotten a month ahead on our mortgage, or that this month there is an unbelievable amount of money in an account I haven’t touched in years?  Yes, I used to be much more frugal and intelligent with money. My college friends called me a “miser”, but those days are gone.  This was my lesson that those days need to return!  This was God’s way of teaching me that he is still with us.  He is also teaching me not to squander his provision, and PAY MORE ATTENTION, ALREADY!!

“Look at the birds of the air: they neither sow, nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not worth much more than they?” – Matthew 6:26 ESV

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No worries, Karina.  God’s got this.  It may not be in the way you expect, and you may need to pay more attention, but he’s on it.  And there’s no one else you’d rather be in control. In the meantime, go have some cake!

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” – 2 Corinthians 12:9 NIV

Hallelujah.

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What’s in a Name?

The second thing you need to know about me is that I have been very sick for a very long time.  I regularly stumped doctors and felt completely insane when they all told me there was nothing wrong with me.  This post was originally written when I finally got a lead on my health issues on January 15, 2016.  Updated today, March 7, 2016.

I’ve just been told I very likely have a disease with no cure.  I nearly wept.  Not tears of sadness, but of relief. Relief because this thing that I’ve been fighting against for so long has a name.  It is real.  There is a reason for all I have lost.

Over the past five years I have been to three Primary Care Providers, four Specialists, two Alternative Medicine Providers, had my entire body scanned except my arms and legs, and had countless vials of blood removed from my stubborn veins.  The providers who believed there was something physically wrong with me tried to help.  Oh, how they tried!  But there were far too many who believed it was all in my head.  I have a history of anxiety in my record and that was all they needed to make their assumptions.  I started having anxiety attacks during an incredibly stressful job that owned me 24/7 and after three of my grandparents passed away in the span of just over a year.  That was more than five years ago.  I’ve grieved, been to therapy and, though I will always miss them, I believe I have healed.  I had a new job that I loved for almost five years, a loving husband who pretty much makes the sun come up each morning, and an incredibly blessed life.  So, to hear doctor after doctor imply that all of my physical problems were due to anxiety and/or depression was a massive blow to my psyche.  I beat myself up trying to figure out why I could not control this ‘thing’ that most people obviously believed was just in my head.

Several weeks ago, when this unknown illness stole yet another portion of my life (Christmas with my family), I lost it.  I screamed at God “Why aren’t you doing something?!”  Five days later, this ‘thing’ took my job and with it, our financial stability and what I considered my life’s purpose.  After that I just felt kind of numb.  Those very damaging thoughts kept coming back.  I’ve done this to myself.  Why can’t I get it together?  Maybe if I had done this… or that and pushed through the pain, things would be different.  But I just could not understand how ALL of my illnesses could possibly be in my head.  I had physical evidence to the contrary.

Feel free to listen to my struggle HERE.

Heal Me, Lord

“Today I woke with fear in my mind, wondering what’s become of my life.  Every moment it’s lying in wait, trapping my body and stretching my faith.  Sometimes I wonder why you chose me to fight this fight.

Heal me, Lord.  Oh, heal me, Lord. The spirit is wiling but the flesh is so weak.  Heal me, Lord.

I ask you why you don’t take this away. Then I could serve you in much stronger ways.  Those selfish thoughts are what’s pulling me down when I know in my heart that you’re still with me now so I”ll keep crawling uphill, knowing that one day you will

Heal me, Lord.  Oh, heal me, Lord.  The spirit is willing but the flesh is so weak.  Heal me, Lord.

Just as I”m praying and wondering why, you show me others who barely get by.  So in my weakness I’m on my knees, praying you’ll show them your perfect peace.  In these weak hours, show us your perfect power.

Heal us, Lord.  Oh, heal us, Lord.  The spirit is wiling but the flesh is so weak.  Heal us, Oh Lord.  Heal us, Lord.”

Praise the Almighty God in Heaven, through his divine intervention I found a doctor who took one look at me and knew exactly what was going on with me.  He was my aunt’s doctor in a completely different state, and of all the locations in the world, he moved to ours.  We believe that God fully orchestrated my connection with him.  As much as it hurts during the process, his timing is always perfect and he will take care of us.

So, what’s in a name?  Everything.  Peace of mind, sanity, lack of judgement, weight lifted off shoulders.  Am I happy to have an incurable disease?  Not at all.  I am definitely in mourning for my once-healthy body.  I am very sad, but I have a reason to be sad.  And we will get through this.  I will probably always have this disease, but at least I know what I am fighting.  I can call its name.  With God, my husband, and my family’s help, I can fight it.  Sjogren’s Syndrome – THIS MEANS WAR!

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I Cry Out Through Music

Besides the fact that I rely on God for the very next breath I breathe, you need to know a few more things about me to understand this blog.  I will be discussing these things in the next few posts, as I update for your reading pleasure (I hope!)

The first thing you need to know is that music is prayer to me.  It has always been a massive part of my life.  I have been singing since I could talk.  I started playing piano when I was in second grade and it became my first love.  I picked up the guitar in college.  After college I was living with my dear friend, Mary.  I would often listen as she made up beautiful songs on the piano and one day I expressed that I would love to be able to write songs.  She said something I will never forget.  She said, “I bet if you wanted to write a song, God would let you.”  Light bulb!!  As soon as I quit trying to write songs myself and opened up to God writing HIS songs through me, the music flowed.  The music has not been there very often lately with all of the craziness that has been going on in my life (more on that later), but I know it will return when God feels I am ready to sing his songs again. In the meantime, I continue in awe of the ones he has already given me.

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Photo Credit: JND Photography

There are certain songs that simply amaze me when finished, because I know there is absolutely no way that I could have written them. This is one of those songs that just came to me when I sat down and started playing. It is during these Heaven-filled moments that God makes it very obvious to me that the song is all his. It starts out by saying I don’t know what to pray for, which is often very true for me. But God knows what I need to pray and gives me the words, or groans when the words will not come. Sometimes – quite often – it is difficult for me to express myself, and this song gives voice to that issue. It speaks of conflicting emotions and holding back something, whatever that ‘something’ may be, from God. In this storm of emotions, we cry out for calm seas and safe arms. As always, his safe arms reach out to hold us and keep us safe.  I cannot tell you how much I have needed this song in the last few years.  Stick around for the next post to find out why.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.” – Romans 8:26 NIV

As a special treat for reading, you can listen to I Cry Out HERE.  Feel free to explore my music page if you like.

I Cry Out

“Lord, I don’t know what to pray for
My heart cannot be put into words
And sometimes it seems the tears fall so easily
And sometimes there are no tears at all
And I long for a way to tell you
But I can’t express my overflowing heart

Chorus:
So I cry out to you, let my praises be true
I’m tired of falling back into the storm
I need you to calm the seas and bring your perfect peace
As I fall into your open, loving arms

Lord, you deserve more than I ever give you
I’m ashamed at how I treat the Lord of all
And I wish my heart would always be near you
But I take it farther from you than I should
But when I let you in my joy is overwhelming
So I can’t explain what’s holding me back

Chorus

For you are the Lord of everything and my blessings overflow
I don’t deserve the gifts you bring but you’re giving even more
And I’m humbled by your unfailing love

Chorus

And I cry out to you, let my praises be true
As I fall into your open, loving arms
Oh Lord please catch me in your open, loving arms.”

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Brick by Brick

“Brick by brick, I was building up my cold, hard walls.
Brick by brick, you chipped away and watched them fall.
Now I’m standing here in the beautiful rubble.”

This quote is from a song I wrote called Brick by Brick.  I write from the beautiful rubble of my walls, torn down by God.  This is me – sometimes serious, sometimes silly, but always honest.  I write from the broken places of humanity, dreams, and my own soul, as God continues to build me up from my rubble.

 

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