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.

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

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.

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."

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.

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!

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.)