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.

For *MY* Toby


Charming.  Charismatic.  Goofy.  Funny.  Hilarious.  Naughty.  Smart.  Competitive.  Brave.  Strong.  Sexy.  Alive.  Energetic.  Compassionate.  Selfless.  Magnetic.  Inspirational.  Those are just a few of the words that I think of when I think of my sweet Toby.  There is nothing more perfect in my life than our imperfect relationship and my connection with a man so much bigger than anything I could have dreamed of.

I am sick.  We don’t know what’s going on, we’re getting more blood work and pushing paperwork for OHSU and a neurologist in Boise.  It is so difficult to get an appointment anywhere.  I have been laying around sleeping, mostly, for a few days.  So not me.  I’m not sure what to do.  If I listened to my body, I’d be asleep a lot.  But, if my body is goofed up, do I listen to a goofed up self or just push through it and do what has to be done?  Is that attitude of just doing it anyways actually hurting me?

Yesterday I got outside to breathe nice air.  I shoveled the driveway.  I am able to start okay, but I can’t do much and my arms are dead.  It took me a couple different times of trying, and finally, Quincy offered to take over.

The biggest concern right now and the scariest – I’m having swallowing, chewing, talking difficulties.  We’ve noticed it here and there over the past six months, but right now, it is more evident. Still somewhat sporadic, but seemingly progressive.  I am an eater by design.  I love eating.  It takes a lot to make me not eat.  I’m finally surrendering.  Yesterday was mostly liquidish meals.  Everyday is something different.  Every.  Single.  Day.

My Toby is such a brave little soldier.  I know he is so scared.  He has been watching his wife deteriorate since our engagement 13 years ago.  13?  I love 13.  I really hope it is 13.  It’s Christmastime and we are opening presents with our seriously crazy roommate Brian.  He was amazing!  I love him.  He tolerated me.  Toby got me this humongous gift.  It was time to open it and he brought it in front of me.  It was a box of styrofoam peanuts.  It had to have taken me several minutes to get them out.  There was a paper stuck to the bottom of the box.  Nice.  I pull this paper off and it says, “Turn around.”

I’m like, “Turn what around?”  So, I flip the box over and try to figure out if I missed some other paper or something.

“Dana!  Turn around!”  It was Toby.  On his knee.  With his grandmother’s ring.

I said yes.

What an adventure.  I don’t think I have ever loved and hated and wanted and detested and liked and been frustrated with anyone as much as Toby.  None of it is negative.  Even the negative stuff.  Because, two negatives make a positive, or something like that.  I’ve complained a lot about him.  Verbally or in my mind.  I made a choice awhile ago not to do that anymore.  It really helped.  I think the Lord used that to help protect me from bitterness and envy.

It is so hard to be married to someone so very amazing as Toby.  In his shadow.  He gets reports from his boss and they are perfect.  Refrigerator worthy.  He gets raises and bonuses and belts and medals and he does it all while being an amazing, hands-on, in yo’ face dad and husband.  Seriously.  Who does that?

When I met Toby, his messy spiky hair and that naughty twinkle in his eye…  within minutes of sitting down at the table at Denny’s…  seeing him across the floor.  I knew.  I told my friend Shaun that I had come to coffee with…  Okay, I’ll back up.

I’m in college.  BSU.  My boyfriend had just broken up with me.  I was heartbroken.  Seriously.  I thought I loved him and he thought he loved me, I think.  My dad actually had kicked me out of his home, so I think the break-up with this boy wasn’t so devastating because it was the boy, but because I cringe at any form of rejection.  So, my girl friend Shaun and I are supposed to go see the play, “A Doll’s House.”  Me, in my infinite wisdom, tell Shaun, “Let’s just skip it.  I totally know this from high school.  Let’s go play.”  So, we did.  I am so naughty.  We ended up at Denny’s and we passed by a table of three boys and one chick.

I saw Toby.  I told my friend Shaun that was the one I wanted.  In a few minutes the chick at the boys table came over to us.  She asked us if we wanted to come and join their table and meet her guy friends.  We talked about if privately and finally went over. I’d like to say that the first day we met we fell in love, and maybe we did, but here’s the thing…

The chick that came over to our table to bring us to her guy friends, was actually Toby’s girlfriend.  Seriously.  One week.  He broke up with her in a week.  In the great big land of Boise we lived down the alley from each other off of River Street.  A 30-second walk, at most.

We made out constantly.  Ha.

Toby told me where he’d been.  The life he’d led – drugs, girls, arrested, jail, and more.  I should have ran.  Here’s the thing:  when I come into the picture, I see a thriving, joyful, muscle man of potential in Toby.  He was working at HP.  Through a contract employer, but he’d just received a significant promotion.  At 19 he was rubbing shoulders with adults twice or three times his age.  And he was shining.  That takes some balls, people.  It takes something so amazingly special to get out of the depths of where he had been and into the life that he was now leading.  i just knew.

I don’t know if there is another man in the world that can love me as big as Toby.  He tolerates me on days when I am angry and mean to everyone simply because I don’t feel well.  He has never doubted me.  Not once.  With all of the doctors telling me they don’t know, to go to another specialist, to take a pill, to get to a psychiatrist IMMEDIATELY… through all of the collections, debt, financial struggle that this has caused…  through sacrificing what he wants to do because he has to do my chores around the house.  For years.  He doesn’t complain.  Ever.  Instead of saying, “I need a break.”  He says, “Can I get you anything, doll face?”

I am so blessed to have this Christmas and many more with you, Toby.  I’m looking at our tipped over tree, no presents underneath, so thankful that our love and the love we have for our children cannot be displayed once a year, wrapped with a bow.  We have a relationship rich in detail, memories, laughs, connection, and togetherness.  Thank you for asking me to marry you.  Merry Christmas.

The Christ Who Stole Grinchmas!

I don’t know if it’s being 33, perspective, or circumstances, but the spirit and season of Christmas have changed in our home.   I love it.  When Toby and I were young and stupid we tried to express our love with money and gifts.  Which is lovely, but it was more stress than it should have been.  It was fueled by the desire to share our love, but we missed the big picture.  We’re finally getting our Grinch on and we’re getting real with what this holiday is about.  

I love making thoughtful gift choices.  I like that tingly feeling in my tummy when that magical moment of giving and receiving collide.  God’s fingerprints.  


We purchased more gifts for Quincy’s 1st Christmas than she could ever have played with.  We thought that’s what we were supposed to do.  Time, money, and Tate changed all that!  By the time you get to number two, the money is divided and so is time, energy, and patience!  We wound up with two overly spoiled girls, nonetheless.  Lots of experience, several years, and a baby boy later…  the essence of gift giving in our home is precious to me and has nothing to do with the price tag, quantity, or demand.

The meaning of Christ’s birth and the representation of the gifts to the King is well taught in our home.  We celebrate both with that sentimental “Hallmark Holiday” tradition as well as a spiritual joy for our Savior.  I think Santa is amazing and I love that we can enjoy a magical season of childhood with our kids as we plan their gifts.  

Our oldest, Quincy, is an avid crafter and designer of all things.  Our sweet neighbors…  they are so generous!  The husband is a high school educator and taught art for 25 years.  He has been giving Quincy art lessons on Monday afternoons after he gets off of work.  I am so thankful.  My heart is bursting with joy for her.  He was *MY* art teacher in high school.  What a precious sacrifice he is making for her.  

Toby and I chose to get her a starter sewing machine.  She is temporarily focused on being a fashion designer.  Quincy is such a hands-on learner and I’d like to think that she inherited some of her mama’s craftiness.  I am so excited to see the expression on her face and the amazing creations she will make.  I chose a loom and scarf making supplies for her stocking.  I am seriously grinning at the computer as I type this.

Our sweet Tate has decided that she is a Master Chef.  She loves the Food Network.  She plays “Tate’s Restaurant,” “Top Chef,” and “Chopped” regularly.  We were able to use some points Toby had of some kind of get a kitchenette for her, totally free!  Our friends and family have bought her a chef’s hat and coat.  Her stocking will have some simple plastic cookware for her kitchen.  She was blessed with an Easy Bake Oven from a sweet friend…  Toby will be blessed enough to try all of her edibles!  I will volunteer to judge the dish presentation!  It’s a two part score and we each have to do our part, Tob.

The little man in the house received a great big box a couple months ago.  I ordered his present early, it showed up, on the porch…  the girls saw it.  Santa couldn’t have brought that present early!  Duh!  So, Toby was sent to fetch a small red tricycle on behalf of the fat guy in the red suit.  As for the great big box;  It’s one of those plastic, smaller rideable rollercoaster thingamajigs.  Five star reviews everywhere you look.  He is so active, he will love these toys!  I snagged a SpongeBob Toothbrush and Toby found a plush Spider Man for his stocking.  I know Tripp will be so happy.  And, it will all be enough.  No matter what.  

I still have my Toby, my mom, and my sister to shop for.  I want to and have to get them something.  After that, I hope I have extra dinero to buy some fun gifts for the friends and family that I love so much.  But, if I don’t, I’m totally okay with that and I’m sorry if you aren’t.  BAHAHAHA!

For several years we have gone to the Christmas Eve service our church holds.  It’s normally a candlelight service.  I don’t think it’s a “vigil” is it?  The first year, we had to work (florists do not get holidays off!), and showed up a few minutes late.  We walk into the room and my Tate, who was like 4’ish, walked to the lights and turned them on because it was dark.  That was a moment wrecker.  

I think we may have had real candles that year, too, which made me real nervous with the kids, but they did great.  I love that we all go around and say something like one big family.  Sometimes it’s what you are thankful for or sometimes it’s a spiritual sentiment, but it is now more important to me than anything else on Christmas Eve.  It’s special.

Ya know, I couldn’t imagine being divinely impregnated, in a stable, ready to give birth.  And Joseph, props to that guy for sticking with Mary.  That couldn’t have been easy.  It’s such a perplexing, mysterious, and interesting story – the birth of baby Jesus.  I think I heard somewhere that when the wise men would have arrived to give Christ their gifts, he would have been close to age two.  Tripp is two.  I couldn’t imagine giving him frankincense, myrrh, and gold.  I wonder if Jesus was a real baby boy or a super baby boy.  

Speaking of which, our baby boy is grown up and in his own big boy bed *and* room now.  Yes, he is almost two.  Don’t judge me.  I loved having him close.  All of my kids, I like keeping them close.  Society says it is expected for them to go out into the world and someday I’ll be ready for that.  But, for now my heart says to keep them close.  I cannot explain it, other than a spiritual conviction to keep them close.  Something tells me that this time and experience is valuable.  That makes me all the more excited to share this season of Christmas love!

Merry Christmas!  

This picture is a close up of our family “Grinchmas Tree!”  


It’s ALIVE!!!

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.