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.