Tuesday, November 18, 2014

Where I am writing now

I have been a little timid about spreading the news of a new place I'm writing.  Many of you are asking, "What happened to you and how can we keep following your story and praying for your family?"  Click on www.MonicaKayeSnyder.com.  Poke around the site.  It's new and won't take long.  Subscribe to receive updates in the right sidebar and click on any of the social media sites you use to link there.  It's very emotional to reach back to the beginning of Team Danica and remember all the people who have become our prayer warriors, cheerleaders, givers and friends.  Our Hope remains!

Tuesday, November 4, 2014

Good bye. The last post on Team Danica. Period.

(Photography by our dear Christina Adam from Grace Designs Photography)

I'm home a week and a few days now.
Healing is slow.
Neck wounds and heart wounds seem inseparable.

My surgery was a success.  My shoulder that was drooping several inches is higher.  I have feeling back in my left arm and hand.  I have not had one piercing headache or loss of vision since.  All this points to the wisdom of the levels fused and how their instability was causing my symptoms.  At the end of the day the protractor and the scans tell the truth most of the time.  The rest is God working through a gifted man's hands. I also felt very sure I needed to take the place offered on my surgeon's schedule.  I wanted to wait, but my gut told me I shouldn't delay.

I am grateful in a way words stop being useful.  I've been scolded for the wrong words, too many words, not enough words, and it tears away little pieces of what I've always tried to do here.  Only God knows my heart, and I trust Him with it as I pray over posts and write and delete while I hold back not what I'm afraid of saying but rather what you might not be brave enough to read.  This makes me an immature writer.  I care too much.  I hedge for one the truth ninety-nine need to hear.  I think I'm growing into a different kind of brave.  Only time will tell.

Mixed in all this neurosurgery stuff there was a catalyst pushing me towards something I believe God really wants me to do. Of course it has to do with writing.  In the past few months He has been using clear sign posts of providence to push me in uncomfortable places making sure I get the point.  The fork in the road doesn't give me two paths.  I don't mean I hear voices from the sky or see writing on the wall.  What I do mean is I have been on my knees drawing circles around a call.  I have been committing to Him and begging for Him to direct my paths, and He started to answer by making only one path appear.  Just one path.  And I began the hard work.  Here's the thing.  I truly needed to be more well, to have my arms and hands working, my head clear enough and in just a little less pain so I wouldn't medicate away any clarity I needed for this daunting job.

Earlier this year I begged God for a spiritual retreat here in Ohio with some like minded women who are also writers.  Most of them are not published authors.  They are women who share their faith day to day on personal blogs. Their desire for God to REFINE the very motives of their hearts in every word they share out on this almost infinite web space is what made me believe I was to attend this weekend of worship. Oh, and my Christa Wells was there.  (I call her "mine" because her music has soothed my soul through the darkest days of my life.)  I had scrimped and saved.  I registered.  I paid extra to have a room alone fearing mast cell reactions and anticipating needing more breaks.  I had even decided I would drive myself.  Salt Fork Lodge is not that far, a straight shot, and I wanted this so badly.  Instead, I became very sick the week before the retreat.  I ended up in Maryland for plasmapheresis and the beginning of IVIG in twelve of the most refining days ever, most of which I spent in solitude.  I was very alone.  I was tremendously sad, but I was really too sick to doubt there was some kind of cosmic mix up. I was given a chance for a treatment most could only beg for. Another woman who wouldn't have been able to attend the retreat took my place, and I felt good about this, even grateful.

It was the trip last week that didn't happen that crushed me.  I had this opportunity to travel to Chicago and piece together the Storyline God's been writing in my life but also to intimately learn from authors I greatly admire about their own journeys to publication.  This was huge.  I was sure God meant for the asking and receiving.  I haven't wanted anything so badly in a very long time. God said "Yes" to something I had prayed about and desperately wanted for almost a year.  I couldn't pay for this, especially in light of my new surgery, but it was being offered to me.  A gift.  There's no way to write a better intro to the back story of how God worked to make my book a reality, right? Storyline was Wednesday through Saturday, exactly a week to the day from when I had my eighteenth surgery scheduled in Maryland, but I was confident I would push through and make it there. God didn't get this wrong.  I was going to do both.

More than this I would have had time to spend with a woman who visited me on the worst day of my above mentioned hospitalization in the spring,  A beautiful spirit who came in with her classic khaki trench and blue peep toe TOMS and didn't even flinch to see the mess I was.  She had been reading Team Danica for awhile.  Her own daughter has had a Chiari decompression.  She and her other daughter suffer from EDS as well and all that goes along with our disease.  She told me as she dropped on her knees on that filthy hospital room floor I had to write.  I wanted to quit it ALL that day, and she came in her own pain and told me straight up God had something I needed to do.  This thing we live has a way of making fast friends, tight friends and forever friends.  She lives in Chicago and just about as much as I wanted Storyline I wanted time with this friend.

I could have told Dr. Henderson when I saw him on Monday I just needed to wait for this surgery, because I told God "Yes" to this other thing.  I didn't.  I was in enough pain and felt urgency in my gut to take this time he'd planned for me on Wednesday.  While I was leaving the office that day I ran into a woman I met in the spring as well.  It was a "God wink".  If you don't believe our times are really ordered by minutes and hours ask me about this woman.  She remembered me.  We spoke briefly waiting for her daughter to be wheeled out in her chair before having another seizure.  We spoke quickly of faith and trust in the exact same good God.  What this woman does and the life she leads put everything in perspective for me.  It also reminded me why this book I'm writing matters.

I still thought the Chicago trip would happen after I came out of the operating room.  I'm one of those super positive, very awake and ridiculously unaware of initial pain people following anesthesia. I think it's because they have to give me so much to get me and keep me under.  My EDS makes me metabolize medication so no amount of drugs is really enough.  I know this has saved my life a time or two in a different kind of way.  The two thumbs up thing is probably annoying to anyone else around me in the recovery room.  I learned it from my brave Danica and keep the tradition alive.  It only became clear a few days after my surgery how much harder it was on me than I expected. For some reason the anterior cut, the swelling in my neck and in my throat and a strange spiritual and emotional pain pushed me into a final realization.  I canceled my flight, my hotel and called my friend. Storyline was a real "No".

This will be the last post on Team Danica. I've tried to do this before and the timing was not right. Because of my own health issues along with a web developer that didn't see my vision, and a real sentimentality about our little blogger home here I kept updating but most of the writing has been going on in another place. In a few days a new website will be launched.  This site will redirect you there as well as my own promoting in other ways on the web  Please forgive me for the first month as I cringe while I try to get the word out in repetition.  This is way out of my comfort zone.  I hope you will come over, because I know for sure God's not done with me yet.  The new website will be fundamentally different and more fun than just telling long stories.  I think you'll love it.  Some of Team Danica's posts will be edited and used in part in publication and the rest saved as a beautiful story of God's Grace and goodness to my family and I and infinite love from all of you. You have humbled me and blessed me by walking along side us here. Thank you.

I will end with a long passage I began with on this blogging journey over four years ago.  It is from Shauna Niequist and her Cold Tangerines.  I would have been her guest at Storyline last week.  Her words are woven in the fabric of our story.  Please read them and read them again.  Team Danica is like the story of God and your story is too.  There's something past the pain and suffering, and it's blessing.  It's all blessing. It's always Grace.

"When you realize that the story of your life could be told a thousand different ways, that you could tell it over and over as a tragedy, but you choose to call it epic, that’s when you start to learn what celebration is. When you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s that good, rich place. That’s the place where the things that looked for all intents and purposes like curses start to stand up and shimmer and dance, and you realize with a gasp that they may have been blessings all along. Or maybe not. Maybe they were curses, in fact, but the force of your belief and your hope and your desperate love for life as it is actually unfolding, has brought a blessing from a curse, like water from a stone, like life from a tomb,like the actual story of God over and over. I would never try to tell you that every bad thing is a really good thing, just waiting to be gazed at with pretty new eyes, just waiting to be shined up and- ta-da!........there is something just past the heartbreak, just past the curse, just past the despair, and that thing is beautiful. You don’t want it to be beautiful, at first. You want to stay in the pain and blackness because it feels familiar, and because you’re not done feeling victimized and smashed up. But one day you’ll wake up surprised and humbled staring at something you thought for sure was a curse and has revealed itself to be a blessing-a beautiful, delicate blessing."

Monday, October 20, 2014

Waiting room prayer and a surgery change

Sometimes I write prayers in waiting rooms.

I have a teal blue leather journal with a feather imprinted on the front. I've taken it to several years of appointments and hospitalizations.  It's full of notes I've scribbled when doctors explain scans to me or make rounds and update on blood work or go over next steps or discharge instructions.  It also has heart prayers scrawled throughout.

After my upright MRI in flexion and extension today I cabbed over to the hospital to wait and see my neurosurgeon.  I was in crazy pain from the movement of my neck and head.  I had to repeat the hard ones because my body twitches when put in such a compromised position and any movement ruins the images.  It was brutal.  Waiting is a part of the neurosurgery world I truly never mind.  Both Danica and I have been the patient who needed a long consult that made others wait.  I always think of whoever is back in the rooms and their stories, and I show grace. I settled in to my chair and flipped through my little book. It is a beautiful reminder of all God has brought me through.  I found this prayer I wrote several months ago while waiting in the exam room for the Aultman doctor to decide if he would help with my plasmapheresis..

"God, I trust You.  You are bigger than $918.  (This is what we needed to pay up front.)  You are bigger than my infections.  You know this doctor, and his willingness to believe and help.  I so desperately want more life.  Please Father, give this to me."

He answered in every possible way.

Today I was "singing" an old hymn I grew up with over and over in my head like a mantra.  My brain works like this.  I repeat things mentally many times without trying.


I wrote out this prayer.

"God, You have brought me to this waiting room in Lanham, Maryland today to serve a purpose in my life and the lives of those who touch mine.  You know my pain.  You know my heart's desire to be well and have the most whole life possible.  Search my heart.  Help my desires to be in line with Your ultimate plan for my life and the lives of those You've entrusted to me.  Give me a pure spirit to seek only Your glory which is my good.  Help me not to shrink back when You make a path clear.  May I commit my way to You and know you will bring it to pass. All of it!  The relationships.  The finances. The courage.  The outcome. All of it!  Never let me succeed unless I surrender it all to You."


It was finally my turn to go back to a room and wait some more.  Dr. H came in and went over my scans and my symptoms.  He examined me and stuck me with a bunch of safety pins.  We knew I had some instability at C4-5 and lower from my last images in the spring.  After my fall over Labor Day and the rapid increase of pain and symptoms we assumed it was going to be my C4-5 needing attention.  I've had a gut feeling it was actually further up.  I am already fused from my occiput (skull base) to C2.  I've had a good deal of pain at the base of my head leading into my neck that I didn't think C4-5 could explain.  I was right. My C3-4 is really the worst level.  This is the fusion surgery I will have Wednesday morning.  It's a little riskier.  It will still be anterior.  I'm hoping for the same recovery time and hospitalization.  I also know I have to change my life to protect the levels slipping below.  I can't lift grocery bags.  I can't look for Twixie's stash of stolen trinkets by twisting my neck and looking under the couch.  I can't carry a Rubbermaid of toys from the basement.  Because I have been more well I have begun to do things I couldn't before because I was just too sick and weak.  I've compromised my spine.  I have EDS.  I have instability like a waterfall down my neck, back and lumbar spine.  I need to find a way to live with the least amount of impact on this progressive situation.

Tomorrow I will find out if my 7:30 am surgery time for Wednesday stands or if another patient needs to go first.  I am completely fine with whatever is decided.  I will have to re-sign paperwork tomorrow since the details of the surgery are changed.

On my way out I ran into a woman at the elevator I met at the hospital when I was here for twelve days in the spring.  She is from Brazil.  Her daughter is having seizures again and needs more fusion. She is only able to be upright for several minutes without passing out or seizing, so the mother had parked right outside the door and come up to hold the elevator so they could whisk her daughter in a wheelchair quickly to lay down in the car before she would have another episode.  This young lady will be having surgery on Wednesday as well.  They both made such an impression on me when I met them before.  Their faith is so strong.  Their fight is so far from home and oh so long.  Suddenly, I was braver.  I knew every bit of the timing of my day was planned so we could see one another again and be encouraged.

Thank you for the overwhelming texts and messages and notes sending your love and prayers.  Please do continue to lift me up as I'm here alone.  Please pray for my Dan and girls and pup back home. Will you say a special prayer for my neurosurgeon who has several surgeries tomorrow and again on Wednesday?  This man gives his hands and his heart and his life over to a very complicated group of patients.  He risks to help us.  He makes decisions that affect us forever.  He bears the weight of this without crumbling or quitting.  He does important work.

I talked to my family, and they are well.  Dan was making a cake and helping Danica with her homework while Delaney studied.  I always feel peaceful knowing even though I'm lonely here they are together and in the comfort of their routine.

I'm hopeful.
I've committed this to Him, and I trust Him.
I surrender all.

Monday, October 13, 2014

How are you handicapped?


Today was my pre-op appointment with my primary care doctor.  I didn't sleep much last night because of this strange vibration in my arms and horrible legs spasms.  I felt very uncomfortable this morning, but I was thrilled the girls had the day off school and let myself off the hook for a few basic things that usually drive the routine of my days including making my bed.  This is huge progress for me.  I cannot explain this any other way except the pheresis threw a big bucket of water on my brain on fire.  My OCD is the most controlled it's been in many years.  I'm grateful.  

My appointment felt like groundhog day.  Labs were drawn.  I peed in a cup.  My doctor checked my heart.  We talked about my progress since the plasma treatment and how remarkable it is I have gone completely off one of my drugs since. Like many times before she does this appointment in the days prior to me leaving for Maryland not fully understanding the neuroscience behind yet another surgery.  She has walked beside me for years now, and she trusts me.  She's seen these surgeries help give me back a measure of life, and she has always been there as the touchstone for my many specialists.  I know I'm incredibly lucky to have her.  There are countless patients with my conditions who cannot find a local doctor to coordinate the extensive care needed to navigate our day to day health issues.  I was blessed with this angel in my journey.  I know for sure I would have given up without her.  

I left her office tired but okay. My feet were feeling numb, my low back was screaming, and I had pressure in my head stemming from my neck. This is okay for me.  This is where I live right now.  I still needed to go to the grocery store.  There is almost nothing that saps me more than this chore. There have been months on end when Dan had to get the groceries. He would work all day, and I would email him a list, and he would trudge through.  We had a lady from church who offered to help many times, and we let her in my post surgery days, but it was stressful because of our budget and needing to pay her and give a list.  When we go we add things in our head and put things back and recreate meal plans based on dollars.  This is a very hard thing to do for someone else. As I have regained health and strength I have taken this over completely.  It is sometimes the only thing I can do in a day, but I feel like a gatherer bringing food in for my family. It's important to me. 

Here's the thing.  I have a handicapped tag.  Sometimes I use the big blue space and sometimes I don't.  The grocery store is a place I always use my tag.  I can be "okay" on my way in and am almost never okay by the time I come out.  Pushing the cart, lifting and placing things in my cart, the smells, the lifting and placing things on the belt, loading them in my car which includes lifting my enormous lift gate on my car and then popping my shoulder out to close it all exhausts me to the core.  I have often gotten in my car at the end of a simple trip and felt so out out of it I didn't think it was safe to drive home.  If I am superman Giant Eagle is my kryptonite.  

I have never been challenged about my blue tag or the use of a special spot up front.  I understand this is rare.  I've heard the stories from others who have been reamed by random people judging whether or not they deserve a closer parking space.  Today, it happened to me for the second time in two weeks, and it brought me emotionally to my knees.  

I'm not someone who rants about most things.  I think the world has enough whining and in many cases when people are grumpy or mean or lazy there is something else going on we have no idea about.  I'm the person who goes online to fill out a survey to say how good something was but keep my peace the rest of the time.  I'd like people to show me the same grace.  I feel very strongly about the lack of accessibility in many public places for disabled people.  It's not a soapbox for me, but it affects me personally in many ways and began when Danica was in her brace and wheelchair. 

Two weeks ago I drove to "The Strip" to specifically go to Michaels and use my fifty percent off coupon for a set of markers as a gift for Delaney's friend.  I parked in a blue space.  I went into Panera and had a bagel and a chai.  I needed to rest after driving before I went into the smelliest land mine of a store ever.  I saw a friend and her kids there on my way out.  I chatted for a minute.  "Yes, I'm doing so much better. Good!" The weather had changed from sunny to completely cloudy and pouring rain in this time.  My slight headache became a roar in the time I left my house to when I walked next door to Michaels.  I found the pens, checked out and briskly crossed the short distance to my car in the pouring rain.  A Jackson police officer in an SUV slowed to roll down his window and yell at me as I unlocked my car.  "Maam . . . maam . . . You know that's a handicapped space, right???"  I'm getting wet and confused someone is yelling at me. "What???"  He presses the issue. "You are in a handicapped space."  I feel the tears welling up.  I reach in and grab my tag and hold it up for him to see.  He then proceeds to ask, "What makes you handicapped?"  I was stunned and a little bit angry.  I am really wet by now, and he is dry in his SUV.  I yelled back, "It's none of your business."  I got in my car, closed the door and realized I was shaking and broke down in tears.  This officer proceeded to drive down to Best Buy, turn around and park in front of the store on the sidewalk  I sat there thinking I should get out and go tell him my story.  I should get his name and call his boss.  I should make a difference.  Instead I composed myself and left.  I told my mom the story and my husband again later that night.  I realized I probably did the right thing. Approaching him alone would not have been wise no matter what he said to me.  Still, I felt like I had maybe I had wimped out.  After a day or two it quit rubbing me so much, and I let it go.  

Today it was an older lady who did not have a tag herself but seemed very disgruntled I had access to one.  I felt fed up.  I still showed her grace.  I muttered something about brain surgery and spinal surgery and left it at that.  Both days I needed that spot.  Those steps it saves me and especially the extra space I need to maneuver my beast of a car with limited neck range of motion is my business. I'm sure there are people who use a tag who are beating the system.  I'm not one of them. 
I guess I'm writing this in support of my other blue tagged friends who have been harassed.  I now know how bad it feels.  I'm also writing for those of you who secretly mutter under your breath about all those spaces close to places that are empty or taken by people who seem able bodied to you. Believe me, when we need one it is not a luxury. Every time I park in one a little bit of my pride is taken.  I actually worry about what you are going to think of me.  This takes a toll over time. Please, show some grace to us, even when we don't have a walker or our wheelchair or our neck brace on. What we fight is invisible in many ways, but it's real, and most of the time our one outing is the only really normal thing about our day.  It's us trying to join real life for an hour and maybe just feed our family.  Oh, and it's really none of your business.  

Sunday, October 12, 2014

Care packages


"The manner of giving is worth more than the gift."  Pierre Corneille

It's no secret one of the top ten things that bring me joy is making a care package for someone.  There was a time in my life when I had plenty of resources and spread this kind of gift liberally for special occasions like birthdays, for people heading into surgery or coming out of crisis or just because. I still try to send at least one a month.  They always come together through picking up goodies here and there as I find them on sale and adding them to my gift drawer.  God will put someone on my heart or the calendar will bring a reminder of a date to be remembered, and I begin to piece my package together.  I then find a few last things that are very specific to the recipient.  I often thought how I'd love to receive this kind of package from someone else someday.

God has a interesting way of answering these kind of "wishes".  Over the long years of suffering and surgeries I have received many beautiful expressions of love returned to me in exactly my own language.  My heart and home are full of remembrances of friends and family encouraging my heart through tangible gifts.

Friday I was so stretched physically and emotionally fragile.  At least once an hour I would think I wanted to call and cancel my upcoming surgery.  I went shopping to find sidewalk chalk for Danica's birthday party and then went to do car rider line.  This is something I have been trying to do regularly to help my mom who had been bringing the girl's home and then returning to school for hours more of meetings and work and also to bring some normalcy to my girl's lives.  It is hard on me.  The traffic in Hartville is getting worse and worse.  Turning my neck to the right and left at stop signs multiple times leaves me so sick and weak by the time I'm home.  Friday was particularly hard.  We pulled up to the house to find two large boxes on my front porch from fellow zebra friends on opposite sides of the United States.  The packages were completely different and both perfect.  The reminders to "Never give up" and to "Fight on" gave me the push I needed to finish the day strong and lean in to God as He makes this way for another surgery.

I'm blessed.  I often tell my girls you get exactly what you give in life.  It may often be returned to you in a different way than you gave and in a completely other time of life, but it will come back. One of my favorite verses about giving and receiving is Luke 6:38.

"Give, and it will be given to you.  a good measure, pressed down, shaken together and running over, will be poured into your lap.  For with the measure you use, it will be measured to you."

Oh how true this has been for us.  This is why we still give even when it seems we shouldn't.  This is why receiving love in the right spirit is just as important as giving the gift.  Care in a package can be the hands of God, the saving grace, the things that take on heart and hope in a journey like ours.





The prescription. The payment.

"Jesus was, and is, looking for humble hearts who confess their need for Him, and allow Him access to every part. He is the prescription, and He's already paid the bill for everything that is sick and broken. We'll spend a lifetime finding things in us that are sick or broken, only to learn that He's paid for that, too." (Shared on facebook by Leigh McLeroy from a newsletter written by missionaries in the far east.)

This morning I am snuggled in my cozy corner on our butter yellow couch.  Wrapped in a blanket with sweet Twixie nestled in beside me and my favorite pottery mug full of perfect coffee and cream held to my lips I feel a physical exhale in every part of my body and spirit.  A lengthy playlist of healing I've built over the past seven years of trial plays song after song of lament, hope and praise.  Following a week of pushing my body to the brink of complete brokenness I am celebrating the gift of Sabbath by staying here where I meet Him face to face, heart to heart and surrender the weighty things I've foolishly carried as my own burdens.  He asks me lovingly to lay them on Him instead, and it takes this slowing down to realize how crushed I've allowed myself to become by trying to do so many things in my own strength in just seven days time.  

A week from today I will be packing for my trip to Maryland.  All the usual anxiety begins to build as I dread the hard travel alone, the logistics of getting around for my appointments prior to surgery and the night before when I take stock of my life and finally allow myself to fully think about the risks I take each time I grasp for less pain and a little more "whole" life.  I have a support system of sorts there.  It's made up of fellow patients who will be in town too for their own surgeries or those of their children.  It's made up of my dear Amy and family who will get me from the airport early on Monday morning, and my Janet who is across the world right now but still plans to fly on Wednesday to be with me after surgery until I can travel home.  This is the first time I will head into my operation on my own.  The few hours of preparation and waiting the day of are hard.  They are hard with your husband or parents or best friends there, but next Wednesday morning I will be alone.  I'm perhaps the most independent patient I know.  I am brave and strong and fiercely okay with my Dan and girls being here while I do these things, because it means they are more okay than if any part of them had to be broken up or witnessing my pain.  It means Dan can continue to work, a necessity, and the girls stay in their routine of school and coming home to their own beds at night.  In the long years of doing this over and over we have found this to be the best for our family.  Still, when I think of what I'm going to do it is the morning of I am most afraid of.  

My physical decline has made very clear I need to have this surgery.  In addition to my neck pain and increased headaches and numbness in my arms and hands I have had new symptoms of seizing lower back pain and hip pain as well as the feeling like my toes are curling under and need stretched.  I have not had these lower body issues since my tethered spinal cord release in March, 2012.  I am praying it is only the compression on my cord from the upper instability pulling things too tight and this surgery will relieve all the symptoms.  

Wednesday I began the day having coffee and three hours of sweet fellowship on the lake with a woman who has mentored me more spiritually than anyone I can remember in my lifetime.  She doesn't even realize how the time spent with me, spread apart by months but always like it was just yesterday, sharpens my iron.  As we shared our lives with one another we talked about our tangible needs.  She spoke of my heart and Dan's heart and how almost everything else in this world has become a mute point to our family and I except the search for a prescription for healing and this crushing and growing debt acquired from our journey.  She encouraged me to remember what I know to be true.  Every single day God has placed our manna outside the tent.  He has always been not just enough but DAYENU, more than enough.  She reminded me to do what we need to do today with what He has always provided.  He is the prescription for everything sick and broken in our lives, and He has already paid it all.  The God who sent His Son to heal the deepest sickness of our hearts and pay for every evil thought and deed is the same God who holds my flesh wasting away and spirit being renewed.  He owns the cattle on a thousand hills and none of this is too big for Him.  

I carried this around in my heart.  I felt the lightening of my burden as God gave us the money needed for my deposit for surgery like He always has before.  I felt the courage to push for the birthday celebration for our Danica and her friends yesterday and pressed on for family photos before I have a new scar in the front of my neck.  Last night Dan and I sat across the table from one another to spend what will probably be our last time really alone before I leave, and we talked of the future with hope not dread.  It was as if the sureness of God's hand in all this, and His absolute love motivating even the hardest suffering has finally become our life blood.  

My left arm is numb.  My headache is already escalating.  My neck cracks when I try to move it and sends shooting pains down into my shoulders and arms and behind my left eye.  How is God planning to bring me healing from this?  How will He pay the debt?  I know for sure it's already written, and I'll hold on until I get to read the next beautiful chapter in this story.  Thank you for reading all this time and hoping and waiting with us.  


Saturday, October 4, 2014

24 hours of vacation and 4 years later. Celebrating and remembering.




I'm laying here in a a super comfy hotel bed in a Residence Inn at Polaris in Columbus, Ohio.  Dan is downstairs swimming with the girls.  We left our home fairly early this morning to begin twenty-four hours of the first trip together as a family since Danica's wish trip in April, 2011.  I know, it sounds crazy, but it's true.  Dan and I have gone many times for my surgery trips in Maryland.  We have gone together with Danica for numerous Cincinnati trips.  I've done surgery trips alone and with my Janet, and I took my Tucson retreat with Amy in February, but we have not been away together, all four of us, for three and a half years.  Every bit of our resources has always gone to medical travel. This summer when I felt well and Dan had a little vacation time saved for the first time in five years we just couldn't afford to go anywhere.  Heading into me leaving again in two weeks for another surgery, my eighteenth surgery, I wanted to plan this getaway.

We had Marriott points to pay for one night.  This hotel is brand new, suite style with even a kitchen, and so beautifully appointed I would swear it is from the Autograph collection.  My sister-in-law works for Marriott, and it has been a blessing in many ways because we have had to use hotels for Danica and I's medical trips.  Hotels we could not afford are reasonable because of our friends and family rate.  I am really particular about my space for many reasons especially because of my sensitivity to smells and the comfort of the mattresses.  We've stayed at Marriotts all along the point levels, and I know which ones to ask not put bath products in or request chemical sensitivity rooms when available.  I know which floors to ask for and how far from the elevator I want my room.  The Marriott in Greenbelt, Maryland knows and remembers me I've stayed for so many surgeries and trips.  I love that Melba answers room service and anticipates I will order the veggie burger, no onions and everything on the side with sweet potato fries. The staff don't let me lift a thing, they call me cabs when I'm there alone, and there is a full service Starbucks so I can treat myself to a white mocha before some of the longest days of my life. I am grateful in the midst of hard travels we have had very comfortable accommodations.

Columbus is home to two of the best shopping areas in Ohio.  Shopping is something we just don't do.  I joke if we can't buy it at Target we don't have it.  We shop clearance online for clothes because the smell of stores and the people shopping make me very sick, standing on cement floors hurt me and pushing hangers to look at things makes my right shoulder pop out.  My girls are both at the age where going to the mall would make them very happy.  I know this is a first world problem, but it is an example of how our lives are so different because of my chronic illness.  Easton is good for me because you can leave most stores to enter fresh air.  There is good handicap parking and Dan can move the car around to limit a lot of walking.  Oh, and there is an American Girl Place and a Delia's. Both girls have had birthdays in the past couple of weeks and received money.  Each one knew exactly where they wanted to spend it.  It brought Dan and I such joy to see them wide eyed and carefully budgeting and selecting what they would buy.

We have friends who have made a tradition of sending us pizza for the girl's birthday.  This year they sent money for each of them to pick a restaurant and go out.  We rarely eat out for many of the same reasons we don't go shopping.  Delaney picked an awesome burger place called The Rail and Danica, of course, picked PF Changs.  This has always been the place in Cincinnati we go after scans, x-rays and appointments to celebrate her being oh so brave.  Today was made more special because Laney was with us.  We were all together.

The day wasn't perfect.  Dan and I argued about directions.  We never argue.  I was in considerable pain and overstimulated by the time we were heading to the hotel.  My communication breaks down quickly in these situations.  I took some meds and fell into bed while Dan watched football, Delaney looked through her fashion finds and Danica played with her doll.  My girls didn't swim at all this summer so the luxury of an indoor pool is a big deal too.  One of the sometimes hidden gifts my girls have been given through so many years of a life that often looks very different than their friend's lives is the pure joy and appreciation that comes from very simple pleasures.

Four years ago we were at the Springhill Suites in Cincinnati preparing for the hardest day of any of our lives.  Delaney had stayed back.  My parents were there and Dan's dad and sister Mary.  I remember Dan's dad getting teary eyed several times because when he looked at her, just three years old, she had no idea at all what was really going to happen the next morning and how it would affect her not only the next year it would take for initial healing but for a long time after.  We had been through one brain surgery, but this was so much bigger.

This is what I wrote.

"This is not  how it should be. This is not how it could be. But this is how it is. And our God is in control."
This morning's appointments at the hospital went well. Thank you for praying for us. The reality of tomorrow morning and handing Danica over to this team of people who could never know her or love her like I do sends me reeling. If I try to think about the hundreds of details that go into this surgery; the anesthesia, the brain being cut open, the brain being coagulated, the patch, the stent, the drain, and then after all that the bone cutting and grafting and titanium and brace. . . When I try to find something . . . anything to hold on to there is only one sure thing. I believe with all my heart and soul our God is in control of every single moment. I will go crawl into bed now and hold her while I plead with God for the miracle we hope for and the grace to accept anything less. 

The song below by Steven Curtis Chapman was playing in my head and heart that night.  As we snuggle here in another hotel room, now together as a family, my seven year old Danica girl for most intents and purposes is miraculously healed.  Everything I ever believed about who God is has been tested a thousand times since.  He has enlarged our territory to include relationships that have provided for us and sustained us when we simply could not survive on our own.  He has preserved Dan and I's marriage through unspeakable trials.  He has protected Delaney in the sometimes lonely space when we could not be there for her and particularly when I simply could not mother how my heart desired. Our entire lives are richer and fuller.  Our eyes are now wide open to the power and possibility of real faith and lasting hope.  There are plenty of times I doubt in my walk with God, but in this one thing I have never been more sure.  Our God is in control.  You either believe in His providence and His ultimate desire to work good for His glory in your own life or you falter in the vague world of fate and chance which ultimately leads to perilous despair. Because of His grace I choose the first. I know it is true.  His great faithfulness over and over again proves He is in every single detail even when we may never understand.  

Tonight I am full of gratitude for four years of testing and proving.  I am thankful for twenty-four hours of vacation with my family.  Our Hope remains.

Wednesday, September 24, 2014

Not why but how? An 18th surgery.


"What surgery meant to Monica (Lucy) and what it means to almost anyone else were two different things entirely. For Monica (Lucy), a single surgery was more like fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her "real life" would begin."  Ann Patchett, "Truth and Beauty"

I'm 38 years old.  I've had 17 surgeries in my life. The discovery of my Ehlers Danlos Syndrome and Chiari in October 2011 which led to my first brain decompression and fusion of occiput to C2 in November of the same year was the hardest and required the longest recovery. I have always known there would be more spinal surgery necessary down the road. When you have EDS once you fuse a portion that is compressing your brain stem or pressing on your spinal cord you rely on the vertebrae above or below to manage your range of motion. Our connective tissue defect lends itself to further subluxation and the need for more fusion. Since my initial decompression and fusion I've had tethered spinal cord release with removal of two large Tarlov cysts, three major abdominal surgeries including removal of a large mass in my pelvic region and then another surgery to remove a large hematoma. Last year I had my hardware removed from my initial fusion because it had come loose on the right side and caused a bone spur. I had two brain shunts.  This year I had a 12 day hospital stay in Maryland for plasmapheresis and the beginning of a round of IVIG that I finished here at home. I was hospitalized multiple times as well for adrenal crisis and even meningitis. Three weeks ago I completed another round of plasmapheresis here locally.

We don't measure my life or our family life in normal months or years. They orbit around these trips to Maryland and surgery or treatment. Every year we hope we might get more time between, better life in between, "real life" in between the punctuation of going under the knife and strengthening what is falling apart. Every time is a risk. Each surgery is an analysis of symptoms, measurements and most of all my pain and ability to function.

I fell the Saturday before my plasmapheresis was to begin. I hit my head and neck hard. I have been in pain since. The initial soreness and normal pain from a fall went away, but I am left with so much pain in my neck and left shoulder. I have had horrible headaches every day. My pressure has increased.  My left eye is blurry and my hearing goes in and out.  I have vertigo and  nausea. My neck hurts like daggers. This is something I haven't had since my hardware removal. When I bend my neck forward I feel like something is choking me and pushing on my throat.  The back of the left side of my head is numb and crawly. When I wake in the morning my arms and hands are numb. Something has moved for sure.

I kept thinking maybe we should do IVIG. I just had my head in the space I wasn't feeling better overall because we didn't follow the exact treatment as before. I had three beautiful months of health and life this summer.  Talking to Dr. Henderson about my symptoms today he said I don't sound sick at all.  The plasmapheresis worked. (I will get all my titers back today.) He clearly diagnosed my C4-C5 as the problem. I have shown a level of instability here on prior scans, but I didn't have this myriad of symptoms.

I need surgery. My 18th surgery. We are looking at a trip for me to Maryland on Sunday night October 20th and scans and clinic appointment with Dr. Henderson on Monday and surgery on Wednesday, the 23rd.  Hopefully I will only be in the hospital a night or two (I often have difficulties post-op) and released later Thursday or Friday to stay a few more days to heal so I can see him again for release.

There is a deposit. I will find out this week the total due. I was told it's typically $4500, but I would receive a 20% discount as a frequent flyer. There is travel and hotels. There is the need for someone to drive me and at least be there the day of my surgery. I have done so much of this alone for the very reason my husband works hard so we can be insured. My insurance and Medicare should pay for the rest of this surgery and hospitalization based on my large out of network deductible that was met earlier this year through your donations and help. Although we have a balance with DCH for over $10,000 for my April/May hospitalization we are appealing and hoping the portion after the deductible out of pocket will be covered. We also paid a huge amount before this spring's visit to cover our past balance from other surgeries just so they would allow me to return. Again, this money came through someone giving and us receiving.

I feel like a woman standing on the corner of a highway exit with a sign that says,

WIFE AND MOTHER
NEEDS NECK SURGERY
SO I CAN LIVE "REAL LIFE"
A LITTLE LONGER.
ANYTHING HELPS.

It's humiliating. I want it to stop. I want all of this to stop. I don't want to be a beggar. I want longer than 3 months.

I spent the weekend crying. My pain is so bad, and I think I forgot how it feels to live at a 9 or a 10 on the scale. I've been driving twice a day to get my girls. I have kept the pact I made with myself long ago to never drive with pain medicine in my system. This means I have to wait until evening to take anything. This cycle is so hard. Dan is devastated. My pain physically is his pain emotionally. I've slipped back into Danica's bedtime prayers. Delaney knows it's happening again and pulls away. Our realism about this journey being an ongoing one is clear. We just don't know how the provision will come. In every way this surgery is fighting for my life. It's not elective. It needs to happen. We don't ask "Why?" anymore, but we do look to the heavens and ask "How?"

I've been studying the book of Mark. Timothy Keller's book "Kings Cross" covers it beautifully. Mark was perhaps the most literary of the apostles. Little nuances of text I have never noticed before in passages about Christ and the disciples just knock me over!  Earlier this week I went back to read about two stories melded into one in Mark 5. A man named Jarius comes to Christ about his sick daughter who was surely going to die and while they were rushing there a woman with a blood flow for many years who (listen to these words) "had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she got worse" reached out to Him. (Boy do I relate!!!). She touched Christ. It says the power literally left Him, and that is how He knew what had happened. I never noticed this before. The Greek word is "dunamis" is POWER. Jesus had a sensation of weakness, a draining, and knew a healing had taken place. He stopped the crowd. He turns around and says, "Who touched my clothes?" The disciples thought it was silly since there was a throng around Him. When he finds out the person who touched Him He is clear to tell her the WHOLE truth about what happened. I LOVE how He finishes His conversation with her,"Daughter, your faith has healed you. GO IN PEACE AND BE FREED FROM YOUR SUFFERING." Keller writes, "Jesus is saying to her, 'Your faith has healed you and now that you know that, you are in a life transforming relationship with me.'

There's all the difference in the world between being a superstitious person who gets bodily healing, and a life transformed follower of Jesus for all eternity!"  

(Remember Jarius is there and getting frantic.  His daughter is dying!) While Jesus is standing there talking soul stuff with the woman, men came running up and told Jarius His daughter was dead.  (v.35)  Listen to what Jesus tells him, "Don't be afraid.  Just believe." (v.36)  

Keller writes about the delay, "It seemed to Jarius and the disciples that Jesus was delaying for no good reason, but they didn't have all the facts. And so often if God seems to be unconcsionably delaying His grace and committing malpractice in our life, it's because there is some crucial information that we don't yet have some essential variable that's unavailable to us. If I could sit down with you and listen to the story of your life, it may well be that I would join you in saying, "I can't understand why God isn't coming through. I don't know why He is delaying." . . . Right now, is God delaying something in your life?  Are you ready to give up? Are you impatient with Him?  There may be a crucial factor that you just don't have access to. The answer, as with Jarius, is to trust Jesus."  

It's no coincidence God would have me studying this passage in a week where He would put my family and I in a position where we don't understand how in the world He could come through again, even after all His faithfulness. There are hours I'm ready to give up. I'm inpatient. This seems like spiritual malpractice. Still, I believe with all my heart there is a crucial something I don't see right now.  The simple answer is to trust Jesus.  He is doing a thousand things in this one thing. I will wait in expectation. I will know for sure all this is for my good and His glory.  

Please pray for my pain.  Ask God to be in the details or scheduling. Plead with Him to provide. Most of all, will you pray for my Dan and Delaney and Danica. For me to live is Christ and to die is gain, but they need me here and as whole as possible. This is why I fight. This is why my Hope remains.

(To help with  this surgery there is a paypal donate button on the upper right of my blog as well as a gofundme link here http://www.gofundme.com/3kxdjc  Thank you.)

Wednesday, September 10, 2014

In everything you do


"This day I call the heavens and earth as witnesses against you that I have set before you life and death, blessings and curses.  

Now choose life, that you and your children may live." 
Deuteronomy 30:19 

This goes out tonight to every one of my warrior friends.  We know what it is like to literally contemplate the choice with every dawn.  How will we see this suffering, our own and that of our children today?  Will we be paralyzed in the curses or move in the strength of the blessings towards the light and grace of this life . . . our life, the lives of our spouses and sons and daughters, our parents and sisters and brothers and friends???  


CHOOSE LIFE.  

Hospital prayer


Lord, yeah, we do get sick and tired of being sick.
We get fed up with the nausea and keeping nothing down.
We get shell shocked by the cancer at every turn, the chronic that wears us down to acute agony, the hospitals and doctors and appointments; the waiting rooms that have us wildly waiting on You,
mad with the waiting for You to show up and do something, heal someone, free everyone now.

And You cup our faces; come so close we can feel the warmth of You on our weariness and You breathe relief upon us: "My grace is sufficient for you, for My power is made *perfect* in weakness...
Your present sufferings; hard times are not one drop compared to the Niagara of glory and good times I've got coming for you *forever*...
Instead of trusting on your own strength or wits in the midst of all this, come trust on Me totally—which is a good idea since I'm the God *who raises the dead!"

The warmth of God is closer to us in sickness than in health.
The comfort of God heals our soul... regardless of our health.
And the grace of God touches us with the heat of the healthiest love --a love that death can't touch, that will enflame us through life without end, forever and ever; into eternal living, Amen.

In the name of the only One who loved us to death and back to the real *forever* life,
Amen.
 
 -Ann Voskamp

It's day eight since my treatment began.  My alarm went off at 6 am. I couldn't make my body move.  At 6:20 am I rolled out of bed and brushed my teeth.  My dad pulled up in the driveway.  I made conversation and sipped my coffee.  (I think the splenda packet was actually floating in my cup.) 

Parents, grown children who are sick don't want to seem vulnerable in front of you.  We worry about you getting up to drive us.  We worry about messing up your already busy schedule.  We worry about the other burdens you are bearing.  We always thought we would be the child who started to taking care of you. There is an unspoken tension in the air about how much this sucks for us both. The daddy ache wanting his daughter to be okay.  The daughter ache wanting to be okay for others even more than for herself.  It's soul sapping to always be the one in need.  

My head hurts so bad I want someone to drill a hole to relieve the pressure.  I'm shaky and weak.  My entire body aches with a bone pain.  I don't know how I'm doing this.  I often think every hard thing brings you to the moment by moment ability to keep moving when every possible law of gravity and science and human nature would stop you in your tracks.  This is Grace that is sufficient.  This is power made perfect in weakness.  Without God I wouldn't have made it this morning. I would have rolled over and quit. Oh how I want to crawl back in bed and quit.  

Having this treatment out patient has been good, but it has been hard.  My husband and girls move around me, not sure if I'm okay but too afraid to ask.  I do not have the benefit of rest like I did in the hospital. I unpack backpacks, practice verses, lay out clothes, make rice krispie treats. Twix steals an ear bud from Delaney's room and little legos from Danica's room.  I try to get them from under the couch and my cath throbs and oozes.  I'm face down in our carpet and feel like I can't make my body get back up.  I realize how badly my carpet needs vacuumed.  The beds have to be made.  I have to wipe the sinks.  Oh, and that trash can needs emptied.  What if the form for the field trip doesn't get signed?  This is good, right?  I'm here to take care of all this.  This proves I'm needed and I'm pulling some weight in this thing called family.

Even as I'm sitting here for the three or more hours between testing and treatment I am thinking of who needs prayer.  What notes could I write to encourage?  What list of things that need done when I'm feeling better can I make?  Delaney's birthday is Friday.  Danica's birthday is in a few weeks.  I am ALWAYS recovering from some kind of surgery, treatment or flare for their days.  Money is always tight.  We have a cake at my parent's house.  Delaney has a friend over sometimes.  Danica is still dreaming of a "friend" party, but I'm too afraid to send out invites, because even worse than not planning a party is planning one and having to cancel.

Dan and I are like two bodies whose souls never touch.  I can't remember what it's like to feel completely married.  There is no tension or arguments about anything.  We are so surrendered we float.  Still, when I left this morning there were no words of "You Can do this!  Last one, Monki!"  My feelings aren't hurt.  My cath freaks him out.  He's afraid to touch me because it might hurt me.  I know no one can keep this up for this long without going silent.  We are two people doing what needs to be done but with no energy to talk about it.  We need to go away together.  Not for a hotel room before a test or appointment or surgery.  We need to sit somewhere in the sun and remember who we are together.

I'm the red faced blubbering girl in the corner of the atrium with her laptop, a pile of snotty tissues, a stack of notes to write and some big girl britches that need pulled up.  I promise I'm digging deep to "SEE" God in this.  Who will I meet today that needs a light?  Am I able to shine anything in this mess?  Back to the hospital prayer. This is where He shows up best.  Just crumple into His arms.  He will carry you, Monica. This is where He shines brightest and you fade away into the background.  My good.  His glory.  Forever.


Tuesday, September 9, 2014

The doctrine that holds me


I am through four treatments with one more scheduled tomorrow.  I will have my catheter removed on Thursday and see my doctor on Friday.  I have been suffering more than I remember, but today I feel stronger and more hopeful this will bring me the eventual healing it did before. My heart is full of grace stories and gratitude as well as requests for prayer as we face ongoing needs.  I must wait to share and rest today.

This is what I know for sure.  My God is in control.  He is always good. He is orchestrating the details of my life, even the painful ones, for my good and His glory.  This is where peace that passes understanding is found.  This is the doctrine that holds me.  It does not lie in a dusty book somewhere but runs through the arteries of my physical and spiritual life.  This is why my hope remains!

"Trust the past to God's mercy, the future to God's love, and the present to God's providence."  St. Augustine

Wednesday, September 3, 2014

Hope . . . It's never too late


I have a lot of words I cling too, but it's no secret "Hope" is my anchor. Nothing went as I planned yesterday, but I know for sure everything went how He determined it should.  I received my first plasmapheresis out patient.  I ended up waiting over six hours for my cath placement at Mercy due to an emergency and then having it done with no sedation at all, just pure grit.  The time crunch was such that I needed to be released immediately to run over to Aultman and get me hooked up. Wow.  I felt like one of those soldiers in old movies who are given something to bite down on and a swig of whiskey over their wound before they pull the bullet out.  The treatment was harder than I remembered.  Because I hadn't eaten or drank all day I was weak and nauseous and had a horrible headache.  I felt the process much more as well.  Going straight from getting the cath placed to using it for an entire plasma exchange was painful.  My dad was my hero. He stuck with me for over twelve hours on the marathon day.  In God's providence by the time I got to the unit the person who would have taken my payment was gone, so I did not have to pay.  I did not have the full amount yesterday of the initial percentage due. My disability came today.  After rent there is enough left to add to what was donated by some of you to pay tomorrow.  Enough.  Just enough for the moment.

The blessing of being home last night and today made the horrible fight and waiting worth it.  I am oh so grateful to be here with my family and not in a hospital bed.  I helped Danica with her homework and tucked her in tonight. I snuggled with my pup today.  I hugged my hubs and my Jayner.  I couldn't rest last night because of my pain, but I pray tonight will be better.  My dad will pick me up at 6:30 am tomorrow to head to Aultman for labs and some waiting for results and then my second round.  We are planning for days of rest between because of my labs and fatigue.  As of now I will have tomorrow's and rest Friday. Treatments Saturday, Monday and Wednesday will finish this race I'm on.

A friend shared Jen Hatmaker's status on facebook tonight.  It pretty much sums up what has been on my heart.  I've been clinging to hope. It won't disappoint.  It's never too late.  I'm not ashamed.  I wave it like a banner.  I believe all this is for my good and His glory.

"Just a quick morning word to anyone who feels stuck and hopeless. I keep thinking about this phrase in Romans 5: 

"...hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. You see, at just the right time, when we were still powerless, Christ died for the ungodly." 

A couple of things: Do not be ashamed to hope. There is no shame in banking on God's love to prevail, His Spirit to win the day. That doesn't make you naive or foolish; this has been poured into your heart. Hope is the believer's response and gift. So go on and hope for that relationship to heal, that child to come home, that goodness to rise up in the midst of some horrible darkness. The Holy Spirit is pouring that very love into your thoughts, your feelings, your heart. Hope is our anthem and we can sing it in the dark before even a glimmer of light arises.

Two, "at just the right time." When all seemed lost, when we had no power, no recourse, no way out, Jesus saved the day. The timing mattered. We had nothing. We couldn't fix what was broken, bridge the divide, or engineer a Plan B. And that was the right time for salvation. So if you feel absolutely powerless, hoping for something you cannot control or heal, trust that Jesus always moves at just the right time. He is never late, even though it may seem way too late to you. It is NEVER too late for Jesus. Never. No relationship is too far gone, no loved one is too lost, no addiction is too deep, no heart is too shattered. If you are still in the dark, be still. Listen. Breathe. Learn. What is there to gain from this season? Because there is something. If you are powerless, pay attention because this is Jesus' favorite timing. This is when he saved humanity, so it is certainly when He can save you.

Let hope rise, dear ones. It is never too late."

Thank you for your prayers and encouragement.  It may seem like a small thing, but I assure you God is using it to bring strength to me in my faltering moments of doubt. You are holding my arms up when I cannot. You are carrying my mat and lowering me through the roof.  You are interceding when I can only groan.  You bless me.

Monday, September 1, 2014

God said "YES."



A quick update for those of you who aren't facebook friends but follow here.  God made the way, and I will begin my plasmapheresis treatment tomorrow.  I saw the nephrologist Friday afternoon, and he humbly held all the research and my case in his lap and said, "I don't understand it, but I will help you."

His office then spent the last few hours of their Friday before a long weekend doing everything they could to set up my treatment for Tuesday.  Here's the schedule for tomorrow:

My dad will pick me up at 5:20 am

I will have lab work done at 6:00 am at Aultman hospital.  (Please pray they can get a vein.  This is often a traumatic part of any medical treatment for me.)

We have to be over to Mercy hospital at 7:00 am in same day surgery for the placement of the jugular catheter under sedation.  We are doing this at Mercy because they are considered in network for my insurance, so it's one way to save a little money.  It's a little comical this is a consideration at this point, but I will not have to pay anything up front for this part which helps!

Once I am done recovering we will have a few hours to rest and eat something before  heading back to Aultman hospital at 1:00 pm for the beginning of my pheresis.  This should take 4-5 hours. Needless to say, it will be a grueling day.

I will find out on Tuesday what time the rest of my treatments will be scheduled for on Wednesday, Thursday, Friday and Saturday.  We have decided to take no breaks in between days of treatment.  I will not be admitted so each day I get to return home and sleep in my own  bed and see  my family.  I am nervous about the catheter in a home setting only because I had issues tolerating the dressing as well as a lot of pain the first day or so after my last one.  They take a little knife and literally cut into your neck.  What's another scar, right?

I am feeling so badly today I will stay in bed or on the couch.  I had a fall in our kitchen on Saturday night and yesterday was painful but today I can barely move.  In addition to other symptoms returning that prompted me needing treatment again I have a stabbing knife where my bowel was resectioned in March, 2011.  When my autoimmune flare gets this bad I can feel endometriosis growing and a knife in several places where it was the worst.  I had no abdominal or pelvic pain during my three good months.  It is back.  I think I get most frantic about this pain because I am actually much calmer about brain surgery and fusions and spinal cord stuff than I am about getting cut again in my core.  I know what this pain is.  There is not much else this disease could eat away, but I'm told it will find anything, especially with loose connective tissue like mine.

Prayer requests?

1.  For this treatment to be fully successful and give me more months of life.  I know some people wondered in the past why I continued to fight so hard while causing stress and more financial strain on my family. Each surgery I've had has given me a better life, a more whole life, but this last treatment gave me REAL life.  I would do anything to have a few more months like that.

2.  For this treatment to work without needing the IVIG treatments following which are wicked expensive and perhaps what caused my meningitis last time.

3.  For every detail of the treatment and my body during it.  There are risks, especially during catheter placement tomorrow and during the pheresis.  I have a history of bleeding and clotting,   They run ALL my blood from my body each session and separate out the "infected" plasma giving me new plasma each time.  There is no way to explain what this feels like.  I also am not sure how the pace of every day will affect me except I know I will be exhausted.

4.  Please pray for Dan and my girls as they try to continue daily life like work, school, homework, volleyball for Laney, etc. while I am in this rigorous week.  We've always had the buffer of me being admitted and even far away. This is good for them, I think, and bad for me.  I am so grateful to be able to come home and sleep, something I just can't do in a hospital setting.  Please ask they will have grace for me and the support they need to keep up their responsibilities.

5.  Please pray for my dad and mom.  My dad, who quite honestly gets queasy about blood stuff, is taking me tomorrow during so many appointments.  My mom, who is oh so busy with  the beginning of another school year, is taking the responsibility of the girls after school until Dan can get home.  I don't know how the rest of the week will go with times and support, but I know for sure they will do anything they can.

6.  Lastly, please continue to pray for God's provision in all this.  He has never brought us to an answer of "yes" without making the way.  It's often last minute like a ram in the thicket.  Choosing to go to Aultman outpatient is more costly to us out of pocket than being admitted at Mercy.  Even though my out  of pocket deductible is met I have to pay the difference between the contracted rate and the rate out of contract.  Me, not having to be admitted, has so many benefits in the way of real rest, more emotional support and less exposure to infections.

I want to shine a light.  God planned this in a way for the people I am to meet and interact with.  He's still in the soul business.

I'm grateful. We are grateful for your love every step of this journey. We would have lost hope many times had it not been for the encouragement of you and the anchor that holds secure, our Jesus.

God said "YES."

Wednesday, August 27, 2014

Forgetting Transformation


This morning I’m curled up on my yellow sofa, the one piece of furniture I had to have when God gave me a home again.  It’s not an idol of the thing, but a sacred space.  I’m crying because I have been like Peter the past few days.  I’ve forgotten the transformation days.  There were three glorious months God gave my family, friends and I.  I dare say they were the best months of my life.  I’ve betrayed what God has been working in me through years of climbing and fighting to reach the pinnacle. 

I wanted to see the burning bush.  I wanted a glimpse at the brightness of the back of God Almighty.  I begged for miracles.  I wanted to choose life no matter what.  He began to answer by giving me a week experiencing what was possible in Tucson, immediately following my shunt revision.  The trip made me hungry for something I before thought would never happen.  As I returned to freezing cold Ohio, the pressure headaches, the constant sickness and antibiotics, the racing thoughts, the crazy obsessive compulsive disorder I lost hope again.  This all led to pursuing what had been a controversial and out of the box diagnosis.  My team of specialists exhausted all conservative treatment over the prior nine months.  The twelve days I spent in Maryland in April for plasmapheresis were some of the hardest I’ve ever lived.  God brought me through.  I came home for IVIG and days later came down with meningitis and was hospitalized again.  After this treacherous ascent, I saw Him.  I was literally pain free.  I had a calm mind.  My words were kind.  The peace I sought for so long came.  It was pure gift.  I was transformed.

Ann Voskamp writes, “There’s always the descent down from the mount. The meeting of the crowd crush, the complaining, the cursing.  Obvious and immediate transformations exhilarate faith, but the faithful can forget transformations, faces that once changed appearances, and we betray all that we know.” 

I don’t want to forget, but I also want it back.  Oh how I want it back.

My symptoms are returning.  Each one has been escalating the past few weeks.  It seemed God had arranged every detail for me to have an outpatient jugular cathether placed and receive pheresis locally.  The doctor who rotated on call read my case and rejected me as a patient.  Since this development last Tuesday, my local doctor and dear Maryland doctor have been trying to find a brave nephrologist here to understand the science of adult PANDAS and encephalitis caused by infections crossing the brain barrier.  "Take the Risk" (Thank to Dr. Ben Carson) has been a long time mantra in our journey beginning when Danica’s first brain surgery failed.  We know the cowardice of waiting can cause harm and the battle for treatment can be the conduit for healing and modern day miracles. 

I sit here devastated I am losing ground, failing in faith and forgetting His faithfulness and mercies in this remarkable story He’s writing through us.  Will you pray for me?  I need encouragement to believe.  When I see my husband curled up in sadness and fear he’s losing his wife again it hurts in the deepest place.  When I see my children begin to witness me biting my cheeks in pain, the furrow in my brow constant again while I limp through the house trying to keep the beautiful family life God gave us this summer in some way going as I’m falling and failing.

Will you please pray God will work in the heart of the Dr. I met Tuesday a willingness to take the risk with me and offer me outpatient treatment here.  Please ask God's provision once more as we will have to pay more out of pocket to keep me from being admitted and away from my family.  And if God wants me to return to Maryland for ten days, ask my Heavenly Father to give us the submissive heart for me to go again.  We know a thousand things are happening in this one thing for our good and His glory.

Our Hope remains.

Wednesday, August 20, 2014

No catheter. No treatement. Now what?

I'm hiding out today.  Absolutely nothing went according to plan in regards to my catheter placement yesterday or beginning my plasmapheresis today. 

It's looking impossible to get this help locally.

I will most likely have to return to Maryland to get another round.  I don't have any idea how this will happen financially.  I can't fathom my family moving on without me for almost two weeks again.   Worst, I don't see how I can do it again.  I just don't think I can.

Yesterday I cried my eyes out.  I pouted.  I made call after call trying to move heaven and earth in my own strength.  I pitched a spiritual fit all day and well into a sleepless night.

This morning, as my girls left for their second day of school I threw myself down at my prayer bench in exhausted surrender.  I opened John Baille's A Diary of Private Prayer.  For the morning of the 20th day the prayer begins like this,

Almighty God, who of Thine infinite wisdom hast ordained that I should live my life within these narrow bounds of time and circumstance, let me now go forth into the world with a brave and trustful heart.  It has pleased Thee to withhold from me a perfect knowledge; therefore deny me not the grace of faith by which I may lay hold of things unseen.  Thou hast given me little power to mould things to my own desire; therefore use Thine own omnipotence to bring Thy desires to pass within me.  Thou hast willed it that through labour and pain I should walk the upward way; be Thou then my fellow traveler as I go.

Let me face what Thou dost send with the strength Thou dost supply:
When Thou prosperest my undertakings, let me give heed that Thy word may prosper in my heart:
When Thou callest me to go through a dark valley, let me not persuade myself that I know a way round . . .

My parent's life verse is Proverbs 16:9.  "A man's heart plans his way, but the Lord directs His steps." 

Please pray my family and I will know what step to take next and find the strength in Him no matter what He asks us to do.  Please pray God will get the glory. 

Our Hope remains!

Tuesday, August 19, 2014

Be small enough to hear me now

There are times when I approach You, the God of the Universe to pray, and I think, "Who am I to even come close much less ask for more Grace from You?" 

After all, there is conflict in Iraq and Israel.  There is unspeakable pain around the globe as the poor and hungry fight one more day to eat, find water and simply stay alive, and for what . . . another day to struggle again and barely eek out existence?  There are orphans without hope of ever finding a home.  There are women and children, girls and boys, being abused and sold into sexual slavery.  There is hate and unrest in Ferguson.  There are friends and neighbors suffering from a sadness so deep they want to die.  Your heart is grieved as every corner of this world seems to be falling further from the Kingdom living You called us to.   

This morning I sent my dear Delaney and Danica off to a Christian school to begin first and seventh grade.  Once again you provided the finances for this blessing.  God, in all the years of me being gone for surgeries and treatments or lying in bed unable to perform even the basic mother duties, You have made the way for my girls to go every day to a safe place to learn a Biblical worldview, form healthy friendships, be hugged by teachers and parent's of other students, prayed with, prayed over . . . loved and nourished.  Why us?

Father, I believe you would leave the ninety nine and come after the one, and save me.  I believe You can run the entire world and still be near me as I head to the hospital to have this jugular catheter placed and begin treatment.  God, I know you are doing big things but please, this morning, be small enough to hear my heart, calm my fears, overwhelm me with peace and provide all my needs. 

By Your strength, For Your Glory, be small enough to hear me now.

(Click the link above.  This song sung by Nichole Nordeman has been dear to me for so many years.  It's my prayer this morning.)

Sunday, August 17, 2014

The thing you think you cannot do . . . again




Dear ones,

I am  much too fatigued to write a real post, but I understand from your emails and messages you care deeply about how I am and the treatment I am having this week and next. 

Knowing how quickly my symptoms are returning I spent much of last week orchestrating and fighting for a second round of plasmapheresis to be completed HERE locally instead of me travelling to Maryland and being admitted to the hospital.  I can clearly see how God was in each of dozens of phone calls with my insurance case manager, local hospital, local pheresis nurses, Maryland doctor and nurse and others to accomplish what initially seemed impossible. 

During the week I was able to push myself to attend jr. high orientation with my Laney.  She begins 7th grade on Tuesday.  I was able to carpool for her volleyball practices some days.  I was also able to throw a celebration party for a handful or the many friends locally who have walked through years of trials with my family and I.  This night was perhaps the best part of my entire summer.  I found great joy in planning and decorating.  I found even greater happiness in showing hospitality to these amazing women who have loved and cared for me. 

Today my pain is at least a 7 on a 1-10 scale.  My hands and feet and body are swollen with a crazy inflammation.  My brain and hands and feet are burning like someone poured gasoline on a fire.  I am crying.  I really don't cry anymore.  I can't stop crying. 

Quite simply I am devastated to be losing the health I claimed so richly the past few months.  I am broken watching my husband and daughters grieve again.  I feel helpless to support them emotionally when I am barely able to push through myself.  You might think this becomes easier with time or our coping skills become better each relapse.  It's simply not true. 

Tomorrow is my last day with the girls.  I decided to wait until Tuesday, while they are back to school, to have my Quinton catheter placed.  I will begin 10 days of treatment on Wednesday.  Every other day I will go to Summa, Akron City Hospital and have all my blood emptied out of my body to separate the plasma and then new plasma cycled back into my body.  Like before, the hope is these five treatments with a day of rest in between will rid my body of the viruses and infections building again. 



Will you please pray for me? My appointment is at 12:30 pm on Tuesday.  My Janet will take me.  I am frightened to enter a hospital who knows so little about my personal case and the many strange things EDS and other conditions dictate in my care.  I am terrified for the Quinton catheter placement.  I was traumatized when my well known interventional radiologist  placed mine in April.  Lidocaine rarely numbs me.  It's an EDS thing.  Even with a big shot of Lidocaine in my neck and Fentanyl, Valium, and Benadryl in my IV I could clearly see and feel the knife making the cuts in my neck for the catheter.  I need to make sure some meds have been ordered tomorrow, but I'm not hopeful it will go any differently.  I have some stenosis on the left side so repeating on the right side is the best choice.  This line in central to my heart.  It is very uncomfortable in placement and size.  Coming home with it is something I am also anxious about.

I will confirm tomorrow the times for my treatment Wednesday, Friday, Sunday, Tuesday and Thursday.  I will be asking for help driving me to and from treatment and also with my girls after school for these days.  If you are able to help please let me know when and how, and I will make a schedule based on needs and get back to you.  Any meals on these days would also be helpful.  I will need to sleep after treatment.  Deciding to do this outpatient has so many benefits but also drawbacks, because I will be here and my family has become accustomed to me up and out of bed again.  I hate this is happening the first few weeks of school. 

I don't know what this means financially.  If I had to go to  Maryland I would not have been able to proceed.  We are at the complete dead end when it comes to making arrangements to pay for past bills and continue to move forward with new ones.  I'm candid about this, because I believe there is no shame in fighting for your life.  There is no price on the past three months my treatment gave my family and I.  NO PRICE.  Will you please pray for us to continue to walk outside the tent and find manna and know it is ENOUGH . . . more than ENOUGH for today.  Often God's provision has been how we know for sure I am supposed to move forward.  I will also confirm tomorrow any initial out of pocket money we need to pay.  As I type this I watch bird after bird flock to our feeder.  Every bird I see reminds me of the verses I cherish, "Look at the birds of the air; they do not  sow or  reap or store away in barns, and yet your heavenly Father feeds them.  Are you not much more valuable than they?" (Matthew 6:26)

Thank you for praying for Dan, who shut down yesterday to the point of sleeping for hours.  This is so hard for him.  Please pray for my girls as they begin their school year with a momma who is once again fighting for her health.  We know for sure we can do hard things through Christ who strengthens us.  Please pray we can do it AGAIN.