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,


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  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???  


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,
 -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."