Tag: jesus

Amazin’ Grace

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I went to a funeral service on Saturday, a younger childhood friend of mine who had left this life too early. The message was simple and sweet and the point of it all – we were there with the purpose to remember, grieve, and love, not to cast our judgment.

I left with the phrase, “There but the grace of God go I,” ringing in my ears.

I am a bull in a china shop when it comes to relationships and life! I thought, “I am sure one person that needs a lot of grace to be in people’s lives.” I trust very few people and let very few into my innermost thoughts. If you think I overshare, here, there is actually MORE you don’t get the privilege of knowing!!!  How about that?  And even if I let you in, you’re on, like, a 10-year probation period to see if I can really trust you. It’s part of my past, part of something I am working on, and if you can’t accept it, I am sad, but I am okay with it. Very cautious with my heart.

For two days after my last post, on changing the negative thought life I was condoning for so long, I felt awful.  I could not combat the dark voices in my head and wasn’t feeling supported in my environment.  It was so hard.  I had just written about overcoming negative self-talk and the process by which God was showing me to do it.  There seemed to be a cement veil between what I knew when I typed my blog message to when I needed to act on my message.  I was crushed.

My consolation was to hide, to isolate, to protect myself.  I know that pattern isn’t right, but it’s self-preservation.  We go back to what we know our brain tells us we’re in fight or flight.  I muddled through Monday, still not quite able to bounce back.  Monday night posed an even bigger struggle as I was challenged and defeated.  I didn’t understand.  I didn’t do anything right – I didn’t talk right, I didn’t listen right, I didn’t apologize right, I should have done this, I should have done that.  I was bad.  Very, very bad.

Tuesday came in with a busy day and I slumped my way to the dentist for a tooth extraction.  Ugh, right?  As I sat, I texted, and when I got home I couldn’t sleep.  I was just so disturbed by my bad feelings and overwhelmed with confusion.

I am 100% confident someone prayed for me about 2 on Tuesday afternoon.  Thank you to whoever did this!  I am aware of the Spirit manifesting its presence in me and I knew I felt God.  I felt His peace, spirit, and power come back to me and I knew, with certainty, I wasn’t as bad as I thought I was.  I got confidence in myself because of God’s confidence in me, through the mercy of Jesus, and by the work of his Holy Spirit.

I went home and tested His will, and found that instead of approving my confidence, it disproved what I had been feeling so sure of moments before.  And just when I thought I was a real whack job, the mystery unfolded.  The light came on.  In a precious little twinkle of His love for me, He gave me a glimmer of His sovereignty.  God gave me the chance to show pride, arrogance, and the muscle of how I had been wrongfully accused and treated.  He also gave me the opportunity to be His very precious daughter who is gracious, abounds in mercy, and chooses love.  I chose love!  I chose to speak softly! I chose to speak life!

My confusion about how bad I had been quickly withered away.  “There, but by the grace of God go all of us.”  We are not here as judge and jury.  We are here to love.  We may do things differently than others, but if at the heart of it is love, the intention will always be revealed as pure.

God’s love never fails.

 

 

1 Corinthians 13:8

Days that become years.

Categories Blooming in Idaho, Multiple Sclerosis & Chronic HealthLeave a Comment on Days that become years.

 

It would seem that just not too long ago, I was every perception of healthy.  Vibrant, maybe.  Lifelike.  Slowly, things just started to shut off.  Lower tolerance to stress.  To pain.  Less fight.  Fewer emotions.

With a chronic illness like MS, there are no doubt to be emotional and mental battles, trapped in a body that just does not feel well.  On my best day, I have substantial enough pain that I must medicate every couple of hours with both prescription and over the counter meds.  The fatigue comes out of nowhere to collapse the canopies over the top of your perfectly planned days.  It becomes difficult to schedule.  Difficult to see past today.

In February, I had a stomach bug.  I do not vomit.  I am not a vomiteer by nature.  (I totally just made that word up.  Nailed it.)  Wouldn’t you know, that the this flu would hit me, the owner of a flower shop, on the evening and day of Valentine’s.  The thing is, Valentine’s happens once a year.  It’s like the super bowl.  You have to wait a whole season to go at it again if you’re not one of the two teams playing or one of the devoted fans.

So, I start feeling nauseated the afternoon before the big day of love and, to make it even better, this year, this year only, I make a different plan and decide I can make enough flowers in advance to totally wing NOT having to have another florist come on staff.  In theory, and in actuality, it would have worked out perfectly, but I got sick.

Bending over, talking, moving…  all created the sense of nausea.  I was so exhausted from all the hours I had put in before the holiday.  My body ached in places I didn’t realize existed.  It was a true test of God’s stamina and endurance in me.  I worked until three that day and then had to leave my employee and a big group of family and friends in charge to finish the day.  Even though I was so sick, it was such a good day to me (the next day 😉 ).  A major core of the people I love most coming together to help me.  It felt good.

As I recuperated from Valentine’s, I still struggled emotionally and mentally.  I had completed extensive work with my therapist the summer, fall, and some winter before.  We worked a lot on creating a world for me where I felt safe.  I had some worth and some power.  I did put in a lot of time trying to get better from my depression, as much as being a mom, wife, florist, and my budget would allow.  Something was still not clicking, however.

Later in February I would discover that I was really thought to have PTSD.  I had been told this before, but evidently, it didn’t really register.  Silly brain.  The therapist explained to my husband that there are certain triggers that spur my already agitated, anxious body into full battle mode.  As I sat there listening, I felt like such a freak.  Not that she was calling me a freak, but that I really didn’t realize how sick my mind and body were.  Suddenly, nothing became real.  Are any of my feelings real?  Why now?  I was defensive, upset, overwhelmed.  Couldn’t breathe.  I left that appointment early.  I felt ashamed and embarrassed.  I haven’t been back to therapy.

I needed time and space to evaluate things.  To figure out who was safe.  It sounds so silly, but it’s true.  Nowhere in the world feels safe at times, except being alone.

As days faded into weeks, I purchased a great book on trauma, started doing research on PTSD, and started discussing it with some of the people closest to me. It seems that my case is probably complex-PTSD as it was the duration of my childhood.  The trauma occured at critical points in my development and it changed the way my nervous system, my physical and emotional self, my God intended design, would grow and blossom.

Since before my son was born, just over five years ago, I have regressed into a fragment of who I used to be.  I can trace it back now and see where PTSD took over Dana.  Empty and disconnected.  I lost a lot of friendships, could not engage in new relationships and experiences, and have suffered with depression, suicidal thoughts, and more.  I don’t have much of an attention span. I can hardly answer the phone at work and dealing with customers feels like a major ordeal.  Confrontation at any level immediately sends me into “CODE RED, find safety.”  Criticism at any level immediately sends me into “CODE RED, find safety.”  Rejection at any level immediately sends me into “CODE RED, find safety.”  Betraying my trust in the slightest sends me into “CODE RED, find safety.”  What is ‘code red?’  Like, in real life?  This is a real question, as if I heard it in a hospital or grocery store, it might have different meaning.  To me, I’m just sayin’ CODE RED is like, “Immediate danger!  Escape!  Run!  Flee!  Who is safe?”  My heart will be pounding and I will experience something similar to panic.

It is hard to digest that this is what you have become:  A “Code Red” machine.  Always looking for signs of new pain.

In the meantime, my neurologist has consented that she is treating me for Primary Progressive Multiple Sclerosis (PPMS), rather than Relapsing Remitting.  There is a new drug selling in Europe, the first drug targeted at PPMS, that has just been approved by the States.  It is still in trial mode, but is expected to be a viable option soon.  It will not fix what damage has been done, but will delay progression.  I can’t help but wonder how the emotional deficits in my life are not to blame for the physical damage that has been done.  Autoimmune disease.  My body physically attacking itself.  I can’t fix the damage of one while ignoring the other.  So much damage.

I hate damage.  I’m at a juncture of what to do with this damage. Some of it is beyond me to heal.  Like, without the mighty hand of a valiant God, I will not get through this.  Where I go from here and how to get there, God please lead me.  Lord, grant me comfort, peace, healing of body and mind and spirit.  Rejuvenate my broken heart, Lord.  Consume my thoughts with you so that I may not destroy the temple you have created.  May I not be held captive to fear.  May God know my heart. In Jesus name, Amen.

 

 

 

 

 

 

 

 

 

 

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…

 

Cancer data in progress!

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Well, we’re doing what we do most:  waiting.

Waiting on doctors and test results and emails and dates.   Supposedly this refines patience.  Huh…

We wish we had a plan and knew exactly how this cancer surgery business is going to unfold in San Diego, but we don’t.  People ask for updates.  I have none.  People want answers from me that I can’t give them.  Funny feeling.  I have these doubts from people I know and love and respect that gave input that my mama shouldn’t even have this surgery.  Funny feeling.  The struggle is real.

Small intestine cancer is so very rare and aggressive that most people with this cancer type never make it five and now ten years as my mama has.   The cancer is so fatal and rare and quick that there isn’t significant worldwide data on how to treat this cancer.   The patients themselves are not around long enough, nor are there enough of them, to collaborate a study!   I found ONE!  One study in the Netherlands that had 17 patients who reached the point my mom has – the point of trying this rigorous procedure—cytoreductive surgery to debulk and remove tumors followed by a warm chemotherapy bath poured directly in the belly.

These seventeen patients have made it an average of 31 months, but here is the thing – the data is so new and fresh, that this study is not complete!  There are still patients living, changing this average lifespan.   Changing the data.

The process to choose patients for this dramatic procedure has improved over the years.  In former days, surgical oncologists would try anything at the request of the patient’s vie for survival.  This left a very bad post-operative patient.  To be qualified for this invasive treatment, the criteria have been refined and the door is narrower and choosing candidates who will have a favorable outcome is crucial.

To select patients, one guideline is the “peritoneal cancer index” or PCI.  This PCI splits the abdomen into a tic tac toe grid.  Each square is then scored.  A rough sample of the scoring is that you get points by having tumors and whether or not they are invading other organs.  The small bowel is also portioned into four quarters and each quarter is scored.  They add up all of these points to come to a numerical reference.  This number is very closely indicated to how well you will do after the procedure, the lower the score, the more likely the surgery will benefit you.  If I am correct, the highest number they take is 13.  My mom’s score, roughly, it was just after surgery and I was hashing out quick details with our surgeon at UCSD, my mom’s score is a 6 to an 8.

This factor, alone, makes me feel confident that she would not be a hacked up, chemically filled filet of Susan after the operation.  This score helped me to see just where she was in “real life” in her abdomen.

While this PCI helps medical staff rate and grade her potential success to this cancer treatment, I smile because it doesn’t include her tenacity, spirit, courage, fight, and spunk.  It doesn’t reflect how much Jesus is fighting for her.  It doesn’t show all the prayers going up and the blessings and protection coming down.

When it comes to this stage of fighting cancer, there are a lot of difficult decisions and scary steps that one must go through.  Our hope is that as mom’s story unfolds, other people with small intestine or rare cancer will find a source of strength and renewed hope.  God’s plan is that we should all be in heaven, in personal communion with Him someday.  We have hope and security in that.  We are not ready to ship mom off eternity.  What a glorious day that will be!  However, her data set is just not complete, yet.  As long as the doors of this earthly life keep opening for her, I will choose to support, encourage, and advocate for her.  We thank you for your continued blessings and prayers.  Amen.

Warts and colon cleansers – in no particular order.

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My family is gone.  It’s me and Texas.  The dog.  Not the state, silly.

They went to visit family and attend the celebration of life for Toby’s late Grandma Betty.  At one point we owned guinea pigs and I named them after her two ex-husbands, Gil and Ori.  Probably not an appropriate time to mention that.

I’ve been busy with my new found liberation.  

  • Picked up the house.
  • Vacuumed.  
  • Rug doctored.  
  • Upholstery attachment’ified the couch.  
  • Laundry.  Sock basket nearly empty.  Victory!
  • Almost finished listening to a book.
  • Made a flyer.
  • Went to work and actually worked.  I finished paperwork!
  • Re-organized, categorized, and listed four seasons of our family’s “Psych Pineapple Hunt of 2014”
  • Took a bath with mineral salts.
  • Made some more garbanzo bean breadish cakelike stuff.
  • Played some mad candy crush.
  • Baked some of the cutest little mini-cookies I’ve ever seen in my life.
  • Dishes.

I have yet to finish a few things:

  • Laundry.
  • Washing the windows.
  • Dusting.
  • Fixing a shelf.
  • Fixing Q’s dress form.
  • Repainting the interior doors.
  • Planning more details to the shop’s spring open house.
  • Bathroom’s.
  • Homeskool lesson plans for the next two weeks.
  • Dinner with mom and sister.
  • Garden beds.
  • Getting rid of kids winter clothes and old toys.

I’m burning daylight.  I have roughly 2.5 days to get my stuff done.  Prolly not going to happen, but I dream big.

Toby has commented that he has noticed a change in me since doing my diet.  He’s not sure what it is.  Energy or spunk or what.  I’ve noticed a change in me, too, but I can’t put a finger on it.  Or a thumb.  A warty thumb.

The diet and Bible study I’m working on both started within days of each other.  I think it’s God using both things to help me.  I’ve really detached myself from the shop.  More so than my staff would probably like, but the stress is going to ruin me.  My threshold is already so low, just because of my health.  The excessive stress turns me into someone I don’t like and someone I don’t want to be for 50 more years.  I’ve decided I need to figure out how to deal with said stress or proceed with trying to sell the shop.  For now, I really want to rebuild my health and give my body the best chance to heal.  Being able to rest when I need to rest.  Not having to force myself to follow a schedule I can’t be expected to follow right now.  There are have been lot of tears over the last several weeks.  Good tears.  

People have asked how my body has responded to this diet.  I, honestly, am not sure how to answer that.  I still feel pretty worn out.  At this point, I’m doing A LOT and keeping busy.  But, I’m exhausted.  I take frequent breaks.  I try not to nap so I’ll sleep better at night, but when that heavy fog of fatigue lays on you thick and you’re too tired to talk…  you get to take a nap then.  =)

I have noticed obvious improvements in my digestive tract.  My husband and I have, in the past, done a colon cleansing program.  I found it YEARS ago online.  We have tried to do it every few years since then, but I haven’t been able to do it as frequently as Toby because of my pregnancies.  We love this product, Colonix.  It will freak you out, it is that good.  I started my diet March 2, 2014 with these Acai detox pills.  We did ten days of the Acai WITH ten days of no sugar, dairy, caffeine, or gluten.  We also did a lot of juicing and ate primarily vegetables, beans, nuts, and whole grains like brown rice.  I started taking a multi-vitamin, 1,000mg Vitamin C, and an omega-3 oil supplement at this time.  In addition, I have drunk (drank? drunken?) more water in the past three weeks than I have in the whole year.

After the first super strict 10 days, we switched from the Acai detox pills to the Colonix.  The Colonix is a 30-day program.  It can be more, but I’m just doing 30.   Following that, I will go back to the Acai pills as continual maintenance.  Toby and I both feel that the “prep” we did in the ten days before starting the colon cleanse made a big difference.

Here I am 21 days into this diet.  I am shifting the diet to avoid saturated fats, yeast, sugar, gluten, and dairy.  I have also added a few more supplements to my daily cocktail:  I am taking a high-potency probiotic, a high dose of Vitamin D3, and a liquid Vitamin B-complex.  I have tried to maintain a regular sleep schedule.  I am also committed to building my spiritual foundation in Christ.  I think all of these things, all of these little changes, are adding up.

I regret that I can’t say, “This diet has changed my life!  Do it!”  I don’t feel that, yet.  But, I’m willing to give it time.  I’m willing.  I want to keep eating this way.  That should say something, because it is not glamorous, or easy, or always tasty.  I don’t have a big testimony yet, but I do have a super tiny one.

It’s a wart.  Was a wart.  This is the grossest blog post I’ve ever written on:  colon cleansing and warts.  No, not venereal warts.  The regular kind.  I’ve had one on my thumb. For probably a year.  I’ve treated it with stuff, but found ignoring it worked best for me.  I’m so gross, huh?  Don’t judge me.  Please.  Every once in awhile, I’d hit it or if it got pushed it would hurt.  But, we mostly just did our own things, me in my world and thumb wart in hers.  I noticed last week, thumb wart is almost gone.   So…  in one year my body can’t conquer this little virus.  But, in two weeks + of clean eating, detoxing, and supplementing it goes away on it’s own.  This is a miracle.  I’m so thankful for it.  This tells me that my immune system is kicking in.  And, even though it may take more time before my body beats up the rest of the bad stuff, I think it’s working.  I’ll take what I can get!

TEITLAEII. Psalm 24

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I am interested to see the ripple effect that continues in me, the other leaders and in the kids.  The retreat is like a big rock getting plunked right in the middle of a quiet pond.  We’ve only just dropped the rock.  The first wave of reaction is in the works and I’m thankful.

 

As many of you know, I went on a youth retreat for our church over the weekend as an adult leader-person.  It’s funny that I felt like much more of a student throughout the whole process.  Over the last few days, I continue to absorb new truths every couple of hours – just small pieces of the puzzles that I’m working on.  Moments of clarity.  Selah.

The ripple effect that I intended to see in myself, the other leaders, and kids…  oh mis estrellas!  It is bigger.  Way bigger.

When we returned from the retreat, we entered into the church service where the kids on the retreat led in almost every aspect.  We did not tell them they were doing this until the night before.  Rad!  I love surprising other people with challenging things!  Each of the kids, at one point, had to take the mic and tell the congregation how the Lord worked in them over the weekend.  It was heartbreaking to me to hear their voices shake and see their tears fall.  And all at once it was amazing and beautiful to hear them articulate the transformation within themselves to love and serve God in a bigger way.  I thought I just loved their messages because I was apart of the whole gig.  

Yesterday I heard that our men’s Bible study group that meets on Monday nights, this big, gruff group of guys…  they wanted to talk and pray about the youth service.  It moved them.  One of our older kids made a life changing decision following the retreat.  Life changing.  I’m convinced that God is working in his life and leading him to something bigger than any of us every thought.  Lives will be changed.  I’m in awe.

This morning as I entered into prayer I thought about the Psalm that we learned and meditated on over the weekend.  Psalm 24.  It begins, “The earth is the Lord’s and everything in it.  The world and all who live in it.”   There is much, much more, but I’m stuck here.  I do not know, with certainty, what it means to be His.  What does that ownership entitle Him?  I know that my sense of belonging should be entirely founded upon Him.  I can’t let go of a few things.  I don’t know how to transfer the title over to Him, I guess.

Later in the Psalm it discusses that He is the King of Glory.  I wondered about “glory.”  I am going to pursue understanding of His glory.  What exactly is it?  Can you touch it?  Can you smell it?  In our ladies Bible study the speaker in the video series discussed Moses longing to see the Lord’s glory.  Here is where I think it is especially interesting.  To “see” the Lord’s glory, the Lord had to put Moses in a cleft in the mountainside and He covered his hand over Moses.  Anyone who is not washed with the blood of Christ cannot stand in God’s presence.  He had to protect Moses from himself.  I’m not sure if Moses saw anything.  I do not know if you “see” the Glory that is the Lord strong and mighty, or…  is it an experience?

I wondered, if it was those moments we have as humans when we get relief from problems, a victory, a peace that surpasses all understanding.  Is it when we are excited for tomorrow, hopeful for today, and okay with yesterday all at once?  All good things that we know to be loving and kind and wonderful mushed together to give us such a spiritual voltage that our very physical hearts cannot tolerate it.  Is that His glory?  Then, maybe, we ought to take a moment to cherish those moments.  

I think, for me, one of the most powerful testimonies shared on Sunday, and one of the most personal to me that revealed God’s glory, was that of the youngest girl, Madison.  Madison is an outcast.  Our church accepts her, but a lot of society doesn’t.  Even at the middle school youth group, she was looked down on.  Her family has chosen to live a simple, pioneer lifestyle.  I mean, they make cheese, people.  Who makes cheese?  They make yarn!  The stuff you buy at the store – a human can make that.  Blows.  My.  Mind.

Here Madison is up at the podium, and with her squeaky voice cracking and she confesses that she had never prayed for strength.  And she sobbed.  She couldn’t really finish what she was going to say, but she didn’t have to.  The innocence.  The purity.  God’s Glory.

It angers me that the community responds to this girl with disdain.  It angers me that I have seen the same pattern of disgust and rejection in the high school youth group with Madison’s older brother.  Awhile ago, for whatever reason, the kids decided that they were going to interlock arms during worship.  I think it offers a sense of community.  I don’t love it, but whatever, I’m not 16.  Anyway…  all 50 kids were interlocked and then, there’s David.  Madison’s older brother.  All.  By.  Himself.  My heart ached for him.

I have found, in my experience, that it is these kinds of people, the David’s and the Madison’s, the one’s who get kicked out and left behind, the ones society says are not good enough…  it is them that have something richer and deeper and more reliant on God than anyone will ever know.  Whether you see it or not, I am the very essence of David and Madison.  Against the grain.  Different.  Rejected.  If you see anything good, or beautiful, or inspiring in me, it is God.  It is the same God that loves and shines through these kids.  It is my prayer that they will become a constant reminder to me that I belong to Him.  David and Madison didn’t choose to be pioneering children, but they are.  I didn’t choose to be sick, but I am.  It is in these “weak” positions that we are carrying the cross we’ve been asked to burden.  Do I question it?  Or, do I simply just step up to the mic and confess that I am weak and that I need strength to carry my cross?

Madison’s childlike faith collided with her spiritual maturity and she changed lives.  The one who was rejected is the one the Lord may have sent to save you.  Respond in love and I believe you may experience the glory of God.  Friends, consider who you reject today.  Who do you count out because you’ve judged them to be unworthy of a smile, a hug, or thoughtful sentiment?  It is those that we, as Christians, ought to cling to and build up, for theirs is the kingdom of heaven.  

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Hasta la vista viente trece!

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As the end of the year approaches, I am in a place I have rarely been the entire year.  In my home.  Totally alone.  I don’t know how the good Lord did it, but I am in ‘peace on earth’ heaven.  I do love you, Toby, but…  you and the kids should leave more often!  I got so much accomplished.

Our old home school dresser was completely full of supplies.  That has been re-org’ed and re-purposed to it’s original intent for the Trippster.  (Toby, thank you for giving me a baby boy.  I love him.)  We moved him out of our room, moved our office into the dining room, and the boy into the old office.  There were all of those little boxes of clutter to sort through.  The ones you make when you just stuff a bunch of crap in because you’re tired of really cleaning.  I have a lot of those.  Tripp’s room is clean, clothes are folded and put away.  My room:  I’d say 75% better than it was.  Laundry that will never die is multiplying like rabbits on my bed.  But, I did get a pretty good chunk of it under control.  So, then I get to the girl’s room.  Oh mis estrellas!  (That’s “Oh my stars!” in Spanish for those of you not as cool or bilingual as Shannon and me.)

In all of this cleaning and renewing and restoring…  I felt so blessed.  Drawers overflow.  Closets are stuffed.  I have a beautiful home with everything I need and more.  The cupboards are brimming, the fridge is due for an after holiday overhaul.  I have so much to be thankful for.

Hypocrisy has been on my mind lately.  Sometimes, I think, I forget to slow down and realize how good I have it.  I focus on the negative and the bad and I completely miss whatever good and beauty is here right now.  I worry that my weak faith and uncertainty in times of difficulty will hinder my witness.  How can, one day, I be so thankful and have so much clarity, and the next, be so…  Dana! My response to trials and disappointing circumstances must change or I will not be able to grow closer to the Lord and joy will forever be out of my reach.  I don’t want to live that life.

As I end this chapter of 2013, I pray….

for continued spiritual maturity.

for continued Godly wisdom.

for a desire to have Biblical knowledge and scripture memorization.

for overflowing of the Holy Spirit.

I am thankful…

for the lessons I have learned.  The discipline that seemed so harsh, yet, I can now say kept me from even more severe consequences.

for the Lord’s crazy guidance on a route that I would have never picked.  Ever.

for closed doors and new opportunities.

for the awareness of the importance of having a routine schedule of Bible study, Church, fellowship, devotional, and prayer time.  These, sometimes monotonous, boring, and not-fun activities, build our relationship with God, with our church family, and with our own families.  Not only that, but I am convinced that it is these regularly scheduled programs that keep us grounded and going during trials and storms.  God is the only thing that does not change in a world with constant change.  I did not understand what it meant for God to be the same yesterday, today, and tomorrow, as much I can honestly say I understand it now.

Which leads me to this.  The best moments of 2013.

*At a ladies Bible study one night, we separated into groups.  I was at a table with my closest friends at the event, but something told me to switch.  No offense, ladies.  I ended up getting switched once more and I had actually stood up and volunteered to go with this other group of women.  All women I know, but not “know”, ya know?  So…  here we are and it is somewhat awkward.  One of the women in group who totally intimidates me was telling us about her struggles.  I was thinking, “OK…  if we have all this bad stuff happen and we shouldn’t be sad, then…  why do we come to church to praise a God who is OK with the bad stuff?”  So, out loud I say, “Why are you here?”  She looked surprised.  She didn’t understand what I meant.  So, I asked again, the hard questions started coming out.  She got tears and she said that no matter how bad the rest of the world is, there is peace in coming to a house of the Lord and finding fellowship, encouragement, and the consistency of an unchanging God.  I still don’t know that I fully understand the depth of this concept…  but, I KNOW there is something to it.

*Twice I got mail at the high school youth group.  Kelsie and Sadie, I love you.

*Going to McCall to work on my book.

*I fought with my Shannon a few times this year.  One time in particular, she got me so ticked off, I screamed, “No!  I don’t trust God and I expect him to screw me!” and I took off in my car.  We seriously fight like sisters.  I don’t know anyone who can make me laugh and make me frustrated all at once like Shanny Lou.  She is more than a friend and I think that makes the difficult times in our relationship sting that much more.  Only because there is so much love, can there be so much pain.  I love you, sister.  Thanks for keeping me faithful even when I don’t feel like it.

*Bryon meeting me at the altar.

*My sister, D’Ann, being home a whole year.

*When I was told way after everyone knew, that we were now the only flower shop in town.

*When the doctor told me and D’Ann that mom’s cancer wasn’t on her liver at all, but totally removable.

*Disneyland.  First time at 33 thanks to my mother-in-law!

*The experience of Japan *WITH* my Toby.

*The call that I had a doctor’s appointment.

Taking stock of 2013 and realizing how blessed I am brings me humility and gratitude.

Amen.

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Now what?

As of today I have zero impending doctor’s appointments.  I have two prescriptions, one for depression and one for RLS.  Google it.  Other than that, I’m winging it, party people.  Right now I’m dealing with a lot of problems in my upper body – it’s almost always been more of a leg issue with me.  I am having chewing, swallowing, and talking difficulties.  It’s not all the time and I don’t know how to measure or describe it very well.  Oh, don’t you worry, I’ll try.

Several years ago I stopped reading to my kids at night.  I didn’t know why.  I got it now.  When I read out loud, there seems to be something that triggers immense fatigue in my throat and neck.  The more I talk, the tighter my throat will get.  Not really painful, just uncomfortable and difficult to talk through.  I’ve been slurring.  I’ve had trouble enunciating words that I’ve never had issues with.  It’s almost like my mouth forgets.  Sometimes, it’s like somebody’s thumb is just pushing on the outside of my throat in, sort of like a weird lump in your throat that comes and goes.  Sometimes, even, I can actually feel the muscles on the inside of my throat sorta snap or something.  As far as I know, I am not hallucinating.

A couple months or so ago, it became real obvious that it was messing with me eating.  Dude, you don’t mess with a girl and her food.  Chewing became a lot of work.  Mostly in the muscles just behind my jaw, under my ears – not so much the jaw itself.  By the time I would get half way through a meal, my neck would be tight and almost burning because the muscles were so tense.  It is exhausting.  Sometimes, mid-sentence, I have to almost catch my breath and take a rest to finish.  It is so weird.  I surely must be crazy.

My arms are fatiguing really easy.  I noticed it strikingly when I was changing some hardware on the sink at the flower shop.  I had to reach up to spin the wing-nut on and it was as though I was reaching through cement.  By the time I got the one side tightened, I could hardly turn my wrist.  Maybe I am mistaken, but I don’t think I should have this extreme of weakness and fatigue from something so minimal.

Toby and I have watched my weight drop and we’re getting concerned.  I have a LONG ways to go before we have real issues but, I experienced a very similar episode in my life the year after Quincy was born.  They finally ended up sending me home with a nurse and IV steroids for several days.  At that time, I think I dropped down to under 90lbs (bumped up 10lbs the weeks following the ‘roids!).  I was in bad shape.

Historically, I’ve recovered from all of these difficult times.  Sometimes, though, Toby and I wonder if this is what dying is.  What will the next symptom be?  What will it take before someone can help us clarify all of this?  Will I lose the flower shop before that happens?  How many more relationships will be damaged because of my health?  People do not understand, “I am not feeling well.”  How many of my dreams do I have to let go of to carry this cross for the Lord?

I’m stuck in this weird place of believing Jesus is my savior but not trusting Him to save me from this.  I’m prayerful He can change my heart.  What if this is it, guys?  If the rest of my life is going to physically feel like this, I do not think I can continue my flower shop business.  I feel urgency that I get these tests and doctors and whatever done because my life is literally on hold, waiting to see what the Lord might reveal.  I need to make decisions but feel I only have part of the information to consider – is there really NOTHING medical professionals can do to help me feel better today?  Is this from the lesions on my brain MRI or is this a whole other disease process?

I pray for answers and direction.  Please, Lord, hear my prayer.  Please bring me comfort.  I know I don’t deserve any better than this, but I pray for your mercy and grace.  Please, Lord, strongly advocate my voice for me and guide me through this. Let one hospital be curious and encouraged to help me.  Please, Lord, take the strain of these health problems and carry the burden for me.  The finances, the flower shop, the scheduling, the referrals, the interviews.  Lord, please help me.  If this is your will Lord, for me to be in this broken body, then I pray for clarity and discernment on what to do next in my life.  Let me find you in all I do today, Jesus.  Amen.

It’s ALIVE!!!

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A few weeks ago my daughter, Quincy, read through Robinson Crusoe for school.  We listened to parts of it on audio and I overheard Robinson say, when he crashed to the shore of the island, “Thank God I am alive.”  I can still hear it plain as day.

“Thank God I am alive.” It wasn’t so much the way it was said, the context, or even the circumstances.  It was my reaction. I immediately thought, “Why would anyone be thankful for that?”

In my mind, death is entry into a place with no pain.  Hear me clearly:  I am not suicidal and I make sure to keep a dialogue going with my husband when I do fall into the ditch of depression.  As much as there is for me here, I can say without hesitation, that I am excited to be in heaven.  Death has no consequence to me.  It is my freedom from this suffering.  I have nothing to lose.

In those moments of realizing just how disconnected I was from this life, I became saddened, angry, and guilty.  It’s not that I am not grateful for the beautiful blessings I have in my life, it’s just harder to appreciate them when you are unwell.  The revelation that I was so beaten down in body and mind and spirit, just flooded me.

I chose to kick things in high gear and be more aggressive than I wanted to be with my application to the neurology department at the Mayo Clinic.  Once and for all, I could face this MS thing and figure it all out for sure.  My case is so atypical and complicated. Is it really MS?  Is it really progressive MS?  Nothing has been easy.

After speaking with my family practitioner, my friends with Mayo Clinic experience, my husband, and doing my own research, I felt confident that if any place could help change my life, it would be the Mayo Clinic.

This brought me so much hope. What if life didn’t have to be painful?  Hope.  Nobody sees how much I can’t do because I’m worn out. Nobody sees how much Toby and the kids have to sacrifice beause I don’t feel well. We don’t get vacations, we get medical tests, treatments, and hospital bills.  My husband works in a job he is amazing at but has no passion for, because of the health insurance we have to have for an illness we can’t treat.  I needed hope.  Big hope.

My prayer life changed over the few weeks we prepared the final paperwork. I felt *IN* my prayers.  Friends prayed, family prayed.  Aaaaaaannnnnnnnnnnnnnd:

I totally got rejected.

I guess I don’t meet the application criteria.  We are not given that information. The letter was extremely vague.  Toby brought it to me at work Saturday afternoon with the saddest eyes.  I left in tears, certain that life was going to suck forever. We had all prayed.  I was asking for a doctor…  how could the Lord deny someone a doctor…  in America?  It seemed like a cruel joke.  Get my hopes up, put myself out there, and then whack me in the knees while everyone is watching.

Is this really the God I believe in?  It rocked my world.  Toby and I talked about doing this life thing with God and without God. Sometimes it feels so much easier to do it without God because how can you explain a father who leaves his only son on a cross to die and blesses his daughter with a life of struggle and pain?

Ultimately, Sunday morning I had to make a choice.  I was up most of the night crying. Thinking I would start getting my business ready for sale, anticipating that in the next few years I would be a vegetable just like my grandma was.  Yay Jesus!  I was irreverent.  Bitter.  Upset.  Guarded.  I felt forgotten, rejected, alone.  “Sure, He is always with us,” say the perfect favored people who never get ditched by God.

Sunday morning Toby and Tripp stayed asleep late.  The girls were routinely taken to church by grandma.  I debated what to do.  Did I want to go to church?  I did not want to be any closer to God.  He was freakin’ me out.  I did, however, find a very curious spot in myself that questioned what Jesus would have done.

I’ve been studying him. The human Jesus.  Trying to understand why I should value what he did, because honestly, it didn’t mean enough to me. I have actually thought, “I didn’t ask him to do it, but I am supposed to be thankful because I get to live a life of pain and misery?  Thanks, Jesus.”

I can only confess these intimate thoughts because my mind has been renewed.  The thing I find inexplicably interesting right now is that I absolutely do not know where I stand with Father God.  But, me and JC are tight.  Is this even possible?  My brain is slow.

After debating a half hour or so, Sunday, I finally decided I would go to church.  But, I wasn’t getting fancy, I wasn’t showing up until service started, and I could not talk to anyone about the Mayo. No eye contact.

I made it to church, puffy eyes, in the middle of a row, perfectly alone.  And then, I spot the gold dishes stacked up in front of the Pastor’s podium and stare them down.  Communion.  Publicly partaking in the bread and juice as a symbol of your acknowledgement in Christ.  The pastor cautioned us that our hearts ought to be right with God before we take communion.  Was I?  My heart was hardened.  My eyes burned with tears for two reasons:  1.  Was I right with God?  and  2. I’m alone.

If you have intention tremor, it is extremely difficult to make visually guided movements with your hands.  The test they use in the neurologist’s office is having the patient use their pointer finger to repetitively touch their nose, the doctor’s finger or pencil tip, and back to their nose.  If the tremor gets worse the closer you get to the target, it’s defined as intentional tremor – it’s only during meaningful, voluntary actions.  Like getting communion cups and breadcrumbs.

Here I am trying to figure out if I should partake or not and, if so, how do I do it?  I decided since I went to church in pursuit of Jesus, I wasn’t completely righteous, but righteous enough to make the choice to participate.  “Righteous enough” was probably not the commitment the Pastor was looking for. But, I decided I was gonna do it.

I glanced at one of the ushers to the left and a lady down the pew from me to the right who walked in late.  Tate was right by me, but that’s like having a giant gorilla in a parka with a badminton racket to rely on.  I finally decided the usher on the left was quickest and I tried to discretely ask her to grab the tray for me.  I whispered that I needed help.  She nodded and smiled and then…   did not move.   As the tray was passed before me I had no choice but to grab it.  I reached for it with my left hand, but as I tried to grab the 1/4″ bread piece, I knocked others off the small dish in the center and I knew I couldn’t get the teeny juice cup.  I switch hands.  It is at that moment of crisis when me, the usher, and my gorilla girl all sort of realize, my tremor is going to spill all of the juice.  My usher-friend realized what I had been asking and stepped right in.  Toby is almost always with me, so this has never been an issue.  But, the more I sat there with my miniature fluted cup and bread…  I felt embarrassed and mad all at once.  I didn’t know how many people behind me saw me shake.  I wonder if they thought I was detoxing.  I sort of hope so now. Fun story.

The experience rubbed me the wrong way and it felt like another one of God’s cruel jokes.  Deny me the very medical help that I need just to take part in Communion.  Frustrated.

My pastor and his wife checked up on us later that day.  I don’t know why.  Nobody has clearly told them how clinically crazy we are.  Messages.  Prayers.  Friends.  By Sunday evening, I felt like I was brushing myself off. Monday I was sad, but in the Word.  Today I took a much needed day off. It was difficult, actually.  I went out this morning almost lost as to what to do. I came home from an errand and felt myself somehow moving forward in an awkward way.

Honestly, I think I’ve got some valid points to be a little pissy.  God has heard an earful.  I can’t tell you if I please Him or appall him. All I can say  is that I am super thankful that mercy trumps judgement because I suck at life and I can’t imagine him liking me.

I felt led by the spirit to write a letter to the radiology group that serviced my last MRI.  I’ve asked for them to explain what I don’t understand. Basically, I need something bad to happen before something good can happen.  The last MRI indicated lesions in both hemispheres.  My 2009 scan only had lesions on the right.  If I do, in fact, have new spots, it will help validate the progression of the disease and open doors to treatment.

Somehow, getting crushed by the medical giant of the Earth doesn’t hurt as bad today.  I think the reason why, is because I made a choice.  Even though I didn’t want to, I went to church.  I chose to take communion. I chose to meet with my small group Monday morning to talk Bible.  I am getting better at handling disappointment as a Christian.  It has been a process.  I am so weak in faith that I feel sort of like a fish out of water when it comes to trusting God’s plan.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” -Romans 15:13

God is my only hope.  By default.   LOL.  And, I’m thinking I’m gonna make it.  I believe in His strength.  I know I am a wiener at all of this.  Who knows?  Maybe I will be miraculously healed.  Maybe I will end up in the care center like Gramma Franka and Toby will come visit me every sunday just like Papa Roy.  Maybe I will never get any better, but never get any worse.  How I handle it, as trite as it sounds, is a choice.  I can choose to allow this illness to come between me and God.  I can decide it’s too hard to get out of bed, too embarrassing to take communion, and too painful to move…  and I will go back to that desolate dark place I came from, shrivel up, and wither away.

I will make a choice.

Thank God I am alive.

The Cure

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I think I’ve decided what I “need.”  I heard this song last night by the Sidewalk Prophets.  It said something about ‘show me you’re a bigger God than I could have ever imagined.’  I also read this blip out of “The Cure” by John Lynch.  The tagline of the book is “When God isn’t who you think he is…  and neither are you.”

I’ve had this vague understanding of who God is in my short walk.  Sometimes I don’t think I fear Him the way I ought to.  My friend Shawna taught me the verbage, “He knows my heart.”  No matter what I say or do, he knows my heart and even if I can’t articulate my conceptions, He hears me.  Sometimes it’s just me who needs to be able to articulate what I am thinking.  Not so much for Him, but for me.

The other night I lay on the floor while Toby tried to massage and stretch out my left arm.  Something is going on.  My shoulder is tender, sore, tires easily.  I am getting cramping throughout the whole arm.  In places it waxes and wanes like a painful toothache.  It seems to be triggered more when I have my arm bent – it does not have to be flexed.  By Saturday, it had built up for 4-5 days.  We’re trying to figure out how to make this pain better and I am at the point of havin’ to do something.  The pain is acute.  I had all three babies naturally, I know what severe pain feels like.

Tears roll from my face to the carpet beneath me as Toby tried to work on my arm.  Tears are welling up in Toby’s eyes and heart.  This is so hard you guys.  I am so beyond tired and frustrated and sad.  I cannot nurture Toby and it’s difficult that I am the cause of his anguish, even if its not my fault. I cry to the Lord, but sometimes it seems that the trials are only getting harder, faster, and more complicated than before.

Lord, hear my cry.  We are not fine.  Sometimes it feels like this life has started at the point of difficulty and then it just got worse with time.  There are times when I see you.  But, there are a lot more times when I don’t see or feel you.  I’ve always felt justified in asking that if this life must be so physically and emotionally painful, that you could make something else easier.  Evidently that’s not your plan.  In case you haven’t noticed, I sort of need you a lot right now.  Big.  I need you to make your presence in my life bigger than I ever could have imagined.  I need some hope to hold on to.  I need a season of peace.  Bless me with your wisdom Lord, that I might use it in every aspect of my life.  Let me find myself living the life of trust and grace in you. Amen.

The last decent issue I had with my health was in July.  It was a similar version of what I’m going through now, but in my right arm.  More in my armpit and shoulder.  The most similar experience that I could relate the pain to was shingles.  I started on the shingles medication right away so I never did break out in the rash.  Now, I’m unsure if it really was shingles or part of my disease process.  July…  August…  September…  October…  November.  It’s building momentum.

I need a really big God.

the cure