Wednesday, April 10, 2019

Heavy

Heavy is a good word to describe how I am feeling.  You know, I look at certain things we go through in life and I think, "How in the world do people cope without God, or some sort of higher something when things are hard?"  Because I'm telling you, if I didn't have faith in God and that one day there will be a place with no more pain, I don't think I would want to keep living.  What would be the point?  If there is no God, and if there is nothing else after death, where would the motivation be to continue living in a broken and fallen world, that seems to bring more pain than anything else?  And my pain is so trivial compared to what some people are facing right now.  Cancer.  Death of a child.  Death of a parent.  Financial struggles.  Divorce.  And so many other things.

I had my follow up appointment today with pain management.  I was to tell them how I did with the pain pump trial and give them a percentage of how much better I was feeling after the injection of a hefty dose of Dilaudid into my lower back.

I know what you're thinking:  But your pain is in your neck, isn't it?

Yes.  It is.  The highest level they can inject the medicine into the spinal fluid is L2 or L3.  I don't know how familiar you are with the spine, but there are a total of 29 vertebrae that make up the spine.  There are 5 vertebrae in the neck (cervical), and this is where MOST of my pain is.  Then you have 12 vertebrae in the thoracic spine (top-mid back), 5 in the lumbar (low back) and 5 in the sacral (tailbone area).  I have bulging discs at the top of my neck (C2-3 and C3-4).   There is also a herniated disc that has been there for at least 5 years at T3-4 but the surgery is too risky so I just live with the pain from that one.

So with the pain pump trial they inject medicine directly into the spinal fluid, but for some reason, they CANNOT place it any higher than the lumbar spine.  There are a total of about 18 or so vertebrae between where the medicine was placed, and where the bulk of my pain is.  And yet, they still believed it would be worth it to see if I could get relief.  Well, the bottom line is this.  There was NO change.  No improvement.  No relief.  At all.  In fact, I wound up with a bad headache and pain down my arm, not to mention beginning symptoms of withdrawal because I had to be off of my pain pill before the procedure.

When I talked to the doctor today, and expressed how I felt no change at all, he said that either the pain pump would not work for me because the pain was muscular/joint-related, OR the medicine just wasn't able to get up high enough to reach where my pain is the worst.  So, I COULD possibly proceed and have the pain pump implanted in the hopes that when the catheter is in the right place and releasing medicine directly to the affected areas in my neck, I could maybe get relief.  But even he thought that was a bad idea, because I responded so poorly to the trial.

Where does that leave me?  There's one option left (outside of just continuing to suffer, addicted to pain medicine).  I can try the trial for the neuro-stimulator.  I have written about this before.  I chose to do the pain pump trial first, because my doctor said they have perfected the pain pumps and while the neuro-stimulators have come a long way, they aren't as widely used and studied as the pain pumps.  And now, that is basically what he is recommending.  Do the trial and see if I can get relief from that, before giving up hope.

I asked him what difference it would make, if the pain pump trial was ineffective.  He explained that with the neuro-stimulator, they actually inject these wires into my neck.  These wires are connected to a battery pack thing that transmits electronic pulses that can (apparently?) help with pain.  Because my pain is up in my neck, he thinks that maybe this will offer relief.  Everything really is just trial and error.  There's no easy answer.  So, because I don't know what else to do, I have this trial scheduled for April 30th.  It is a week long trial-they send me home with these wires hanging out of my neck and I am not clear if I administer the pulses or if it is timed.  But I wear that for a week, and then I go back to have the wires removed and tell them if I had any relief.  IF, and that's a big IF, I get relief, they will schedule surgery.

The doctor said he was hopeful.  I told him he would have to be hopeful for the both of us, because I just couldn't feel it in the moment.  By the time I got to my car, I just started feeling this weight begin to press down on me.

I couldn't shake it.  I dropped off my prescription (which apparently has been delayed surprise surprise due to insurance issues) and went to get myself my favorite tea from my favorite place, QuikTrip.  I had to fight to keep it together in the store because that weight just would not let up.  It kept pressing and I knew I was going to lose it.  I've felt the breakdown coming since last night.

And this is what brings me back to how I started this post.  I don't know how people do it without God.  I don't know, mentally, how people can cope.  I just don't get it.  Because here is what happened.  As soon as I got in my car, the radio started playing a song called "Oh My Soul" by Casting Crowns.  The tears that I had been fighting back just started flowing.  I just closed my eyes and listened to the words, all the while, tears were streaming down my cheeks.  The despair didn't go away.  The frustration didn't suddenly disappear.  But that crushing weight I was feeling lightened a little.  I believe in God and I believe that He loves me and that He sees me, and that He suffers as I suffer.  He sees my pain and he wants to comfort me.  He wants me to lean on him and know that I am not strong enough, but He is.  And He communicates this to me through music over and over and over, and usually exactly when I need it, before despair overwhelms me completely.

Maybe you're struggling right now.  Whatever it is, take a few moments to close your eyes and listen to this song, or read the lyrics while you listen.  Do I feel suddenly happy?  No. I don't.  I feel much the same.  Except that my load was lightened just a little and I know that I can put my hope and trust in One who loves me more than I could imagine.



Oh, my soul
Oh, how you worry
Oh, how you're weary, from fearing you lost control
This was the one thing, you didn't see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone

Here and now
You can be honest
I won't try to promise that someday it all works out
'Cause this is the valley
And even now, He is breathing on your dry bones
And there will be dancing
There will be beauty where beauty was ash and stone
This much I know

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down

I'm not strong enough, I can't take anymore
(You can lay it down, you can lay it down)
And my shipwrecked faith will never get me to shore
(You can lay it down, you can lay it down)
Can He find me here
Can He keep me from going under

Oh, my soul
You're not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone

Oh, my soul, you're not alone

Monday, April 8, 2019

Distracted and Disconnected

I've spent the better part of a year distracted.  For the first time in the last seven years, I haven't felt as close to God.  I haven't felt far from him.  Just not close.  Not like I was.

I've allowed the circumstances of my life to get in the way.  My priorities shifted.  It happened so subtlety that it has taken me almost a year to recognize it.  I've allowed my pain to take the wheel, controlling my emotions, my body, my heart.  I have been worn and discouraged.  I have become utterly exhausted, fighting against a failing body I cannot control.  And the mental toll that has taken over the last year has been frustrating, to say the least. 

Pain is all I think about.  My life revolves around it.  This is the evening before I go in for what they call a "pain pump trial."  It will determine whether or not having pain pump implanted will be beneficial and allow me to live life again.

But focused on pain as I have been, it doesn't leave much room for God.  Kris and I were talking recently about how easy it is to just veg out and watch TV or play games.  It takes literally no effort or thought.  But the good stuff, the truly beneficial things take time and effort.  And when you are exhausted, the last thing you want to do is...DO.  You just want to BE.

We get this idea in our heads that it is WORK to draw close to God.  And it is work, in the sense that it requires that you be intentional.  You know the end result will be peace and fulfillment, and yet it always just seems so hard to spend time with God.  Maybe it's because we have these preconceived notions that spending time with God looks a certain way.  You know, reading your Bible for hours on end, praying nonstop, things that are really just not attainable.  We have these expectations for what it should look like and we always make it harder than just sitting there and being in God's presence.  Because even in resting in God, we feel like we have to DO something.

Kris is really good at this need to DO something.  To FIX things.  When I'm upset, he wants to do something.  When what I really need is for him to take me in his arms and tell me he's there and that it'll be okay.  I know this.  I know that is what I need.  So, why do I think that in order to rest in God I have to run myself ragged with different exercises proving that I am capable of making God a priority?

When I first came back to God (7 years ago!), there was something so special and intimate about just sitting and listening to songs that spoke words of hope and life, songs that reminded me that I was very broken, and very loved by God.  And somehow, as the years have come and gone, I've gone back to this legalistic view of what spending time with God is.  It isn't about reading the Bible all the time, or praying nonstop.  Those things are great, of course.  I'm not saying we don't need to do those things.  But for me, those things aren't even on my radar when I'm not already resting, just allowing God to lavish his love and kindness on my heart.  For me, it's done through music.  If I can sit and veg on the latest episode of Sister Wives (don't judge me - or do - I don't care), why can't I just cue up an hour of songs that I KNOW speak to my heart and just rest?  Just listen to the words and BE.

Isn't that the crazy thing?  I KNOW what my heart needs.  And it's not even hard to do.  And yet, I feel this resistance.  A voice inside (likely from my enemy) says "but that's so much work.  It would be so much easier to just turn the TV on."  And I'm like, "yeah you're right, that is easier," and then three hours later it's time to go to bed, and I'm left still feeling disconnected.

Does anyone else find yourself in this endless cycle of knowing you need to spend time with God because it is literally the only thing that can soothe your soul, but then you get distracted by something else, something far less fulfilling, and you just focus on that?  And then you feel guilty because just like anything we use to cope with pain or just life, it is empty?  There is no hope in drugs or alcohol, sex or food.  There is, at best, momentary pleasure.  It never lasts.  There is no peace in those things.  Not really.  We like to think there is - but five minutes or an hour of distraction or numbing the pain is not the same as peace, is it?  No.  It's not.

So as Good Friday and Easter approaches, thankfully I find myself longing for that closeness with God again.  I can tell it has been missing from my life.  It was on Good Friday seven years ago that the Cross became real to me.  That I finally understood its purpose and the part Jesus wanted to play in my heart and life.  And I miss that feeling of being so completely broken and overwhelmed with gratitude for what God has given me, done for me, and forgiven me of.  I'm not going to make a vow or goal and say from now on this and that...it would be empty.

I'm just simply going to try today to stay focused on what really matters.  And hopefully, I can wake up tomorrow and do it again.  While the song I am sharing today isn't really on topic, it is one that I have been hearing a lot lately that speaks to what I really want from my life.  I don't want people to look at me and think she was this or did that, or she loved her kids or her marriage was restored.  When people look at me, I just want them to see Jesus.  Because that's all that matters.