Tag Archives: stiff person syndrome

Pain

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There is something deep and dark and sad within me.  Something that words, man, there aren’t even words to pray.  I start praying, but the words are empty.  They don’t mean much.  Even though I went through this amazing “miracle” cancer procedure with my mama and everything seems like it’s going to be okay, there are still so many hurts in my heart and the presence of God is not felt within me.

I made a hard choice at the flower shop this year and hard choices mean hard roads.  It was a difficult journey coming and going and leaving the shop during one of the most prosperous weeks the shop will see this year so that I could be with my mom during her surgery and recovery.  Without a full-time florist, how do you flower shop, right?  During Mother’s Day week.  A group of awesome angels and Toby geared up to rescue me and I tried, through the miles, to give them direction as much as I also tried to let go.

The experience at UCSD wasn’t just about my mom.  There was this inevitable “break” that would happen at the end of all of it.  Me and her and Oscar’s ceviche and the beach for a few weeks of recovery time.  The biggest break I’ve gotten since my oldest was born 12 years ago.  A break I fought, but a break I realized I needed.  And, just as I succumb to it, it’s scooped away into the emptiness it came from.  And the month turns into just days and I come back late to work early and hard and I’m left feeling well undeserving of rest and quiet and finances and goodness.

That’s the thing with me.  Always unworthy.  I can work hard and get all this seemingly “extra” money, but there is always medical debt. There is always a prescription.  You get one bill paid off and turn around to find eight more.  Lesions scattered across my brain MRI, new lesions, at least five, and I get the call from my neurologist’ assistant, “Everything on your MRI was normal.”  This is not normal.  The radiologist even notes that this is an abnormal presentation of Multiple Sclerosis.  At what point will I really get help?  And how much will that cost?  I’ve invested at least one college education into my health and have no long-term help.  There is no light at the end of the tunnel except that of heaven.

The pain is  everyday.  Sometimes a leg, sometimes an arm, shoulder, neck.  This “Stiff Person Syndrome” thing, that I have positive blood tests for, that nobody will treat me for, is seemingly progressing.  Spasms, cramps, inability to walk far…  no escape.  The only thing that helps it is rest and sleep and there are not enough hours in the day to sleep it off.  Sleep I often wish I won’t wake up from.

I went through this school of hard knocks with ministry, hoping that somehow, being devoted to Him and His word would somehow benefit the rest of my life…  it doesn’t work that way.  Just because you serve, doesn’t mean He offers you protection from the pain.  Just because you love Him, doesn’t mean He will make it easier.  I laughed at scripture, really laughed, that said He was with me holding my right hand.  He is not with me right now.  I often wonder what I’ve done to earn this life and  what I need to do to get Him to help me. I am at a loss.  I can’t even believe His promises because I don’t want to be hurt by His abandonment anymore.  I know I’m not good enough, let’s just, both, settle on that so I can stop trying to love you and you can stop rejecting me, ok?

I cried on my way to church the other day.  A faith choice to go, my feelings telling me I’m going to continue to get hurt chasing after this Jesus, especially here.  The church, my once beloved church, long since feeling like home to me.  A hard reality that I’ve been working on since last October and beyond.  A church, ironically, where my husband is now the associate pastor.

On the day when he serves communion, his first time being approved to do so, was the first time I didn’t take it.  The first time since becoming a Christian eight years ago that I didn’t celebrate in Christ’s death by consuming the bread and juice, a remembrance of Him.  Wouldn’t you know, that I’m in this empty pew, Toby up front to pray over the sacrament, and sure enough the pastor of the church comes to sit by me.  Then, the tray of bread and juice is served to me by two of my loves, my Brucey and Ster, and I have to audibly tell them I’m not partaking.  Then, the pastor’s wife comes to sit by me after she is done helping to distribute communion to the congregation.  The one day I don’t take the elements because I know my heart is long from being right with God,  I have my husband officiating, my pastor and his wife sitting on each side of me, and I can’t even just pass the tray, I have to verbally and shamefully turn it down.  Of course it happened that way.

I probably shouldn’t, but I feel super embarrassed.  Super stupid that the two most meaningful people in the church sat at my right and left while I sat empty handed during one of the most intimate rituals one can partake in for our God.  It was humbling and hard.  My lips didn’t move in worship that morning.  I sat, eyes mostly closed, clenching onto tears.

Sadly, this is most of my days.  Waiting for the pain, always on the defense.  Facebook became one of those places.  Not only because people, good “Christian” people bring me down, but because I gave up on sharing the story, sharing His glory, when I realized that I was only going to continue getting attacked -spiritually, physically, emotionally.  Unable to continue spouting out how great things are, when deep down I didn’t feel loved and protected and hope for the future.  His promises empty.

I am as weak and poor spiritually than I have ever been, even pre-Jesus.  We have enough money to get by, but there isn’t a future of prosperity for us, despite how hard we will have to work.  There is not a doctor in Idaho that can help me and I don’t know who to go to and I’m not wasting anymore of my time or money pursuing empty attempts at getting help. The physical pain is my only constant.

I am at this point that I have to accept that this is life.  I was born to suffer and endure emotional, physical, and financial pain.  I’m at this breaking point where I need to decide if it’s worth it.  Where do I go from here?  There is nowhere to run.  There is no God holding my right hand guiding me to a place where I can be favored like my mom and Toby.  These two.  If I didn’t have them and some of God’s goodness that I was able to breathe in when I’m around them, I probably wouldn’t have any favor at all.  I am both thankful and hurt that I can’t be loved the way they are.  The way things just happen and align for them always.  Not much effort on their behalf.  And, I’m here drowning…  it doesn’t take long before you realize that you’re the one that doesn’t fit into this Kingdom.  And it’s so hard fighting it.  And, I’m tired.  The deep, dark sadness inside of me festers bigger and my worth has wore down to just shreds that once were.

I’m sorry that I am not a source of hope and joy and spiritual enlightenment today or always.  Sometimes, like now, it’s just too hard to fake it anymore.  Pain too close to the surface. Just, too much pain…

 

Oh yeah! I am a fighter!

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December! I don’t know how this happened. December? 2015?  Life has felt good and slow and easy. It surprises me that I type that because, really, we have been pretty stinking busy and stretched.  But, it *must* be a God thing, because I don’t think I should have this much “okayness” with life right now.  I know that God is with me because I can look back at the chaos life has served me and feel okay.  Not just okay, even, but, peaceful.  And, there is joy…
The pain isn’t keeping me down all the time, but it’s a subtle reminder of growing disease. A year ago I was walking a couple of miles everyday.  I am thankful now, just to walk to my car sometimes.  I have been using my hands, more and more, to walk up my thighs as a way to help myself up from a seated position. We’re going to get some of those handles installed around the house, sooner than later. 35 and hips and back growing too weak and painful to stand up without assistance.  Humbling.
The reality is, it’s looking more and more like I drew a really bad lottery… twice.  Though I have only been diagnosed with Multiple Sclerosis, I also have positive blood tests for Stiff Person Syndrome (SPS).  SPS is rare.  Super rare.  1 in a million.  My neurologist is treating me for it now with every prescription most Google experts recommend, with the exception of anything IV.  That is saved for when it gets bad.  I thought I might go to some real life expert in Seattle to get the official diagnosis, but… I am being treated now.  Which is more than a lot of people who are and are not diagnosed, and suffering, are getting.  For that, I am thankful.  For right now, it’s the best that can be done, regardless if I have an official diagnosis.
After 15 years of dealing with the medical community, I sort of have an idea of which battle to fight.    If, in fact, this is SPS, I am still at a mild stage of the disease, but there is progression.  Particularly, the lower back and hip problems.  I want to be the fighter.
I want to keep making to-do lists that are too long and planning my church service months in advance and I want to keep daydreaming and pushing this little flower shop along.  I want to cuddle my boy and chase the girls to all their activities.  I want to see my middle schoolers thrive in Jesus and my Bible study ladies devoted to God.  I want to fight.
I have such a great coach in my husband, Toby.  He routinely inspires kids and adults into greatness at his jiu jitsu classes, at youth group, or in his sermons.  How fitting that God would pair me up with someone so encouraging and strong.
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My husband, Toby, and my mom, Susan, at the annual community Thanksgiving Dinner our family hosts in Weiser.  And a bag of turkey gizzards.
It’s also ironic, or completely DIVINE, that I have been able to watch my mom so closely fight her cancer over the last 9 years.  Although life has been cruel, hard, lonely, and unfair, here she is!  Doing the best she can, where she is, with what she has.  That 18% chance to make it two years.  Ha.  After having small intestine cancer reoccur 6…7 times (I honestly lose track), surgery after surgery, battle after battle, she gets back up and tries again.  Most would have succumb to the cancer.  The pain, the bills, the depression, the weight of it all.  My mom has endurance and heart.  All bundled up into a beautiful smile and the most tender soul.  She is a fighter.
God is good, I am always loved, and I will fight, too.