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. 

Sunday, August 10, 2014

Sweet tea and Jesus

Today was the last Saturday of our summer.  From the second I woke up I held on to moments like golden strands of fine thread needing to be tied off carefully so the tapestry won't unravel.  I am not sure if I ever fully believed God might give me a day like this . . . or a week . . . or a month . . . or three months, but I fought like He might, and He did.

I have been in recovery.  I am a person who lost part of my brain and my soul.  I have been relearning the simple things in life most people take for granted.  I am in many ways like a child.  If you spend time with me I will probably exclaim out loud about a hundred things you think are ordinary.  I may have seen them or heard them, smelled them, tasted them or felt them before, but it has been years since anything did not pass through the brutal filter of chronic pain.

Dan and my girls are getting to know me again.

Delaney told me today I was funny.  She only ever saw this mom in old home movies.  I was the crazy one drinking a bloody mary for breakfast while dancing around the living room doing Elaine Benes impressions and belly laughing.  I still believed life was good.  She will tell me "Thank you" in an "I can't believe you were able to do this for me way" for normal mom stuff like making her a peanut butter and jelly sandwich.  It takes me off guard until I remember she has been making her own lunch and Danica's lunch for too long.  She turned around from the yard and said to me tonight, "I'm so proud of you mom.  You've been through so much and still you provide."  I asked her, "What do I provide?"  Her answer, "Kindness and love."  A tear falls and I think . . . maybe she is going to be okay after all.  Maybe I haven't hurt her too much.  Maybe she sees the big picture at almost twelve years old.  Only the gift of the summer we've had could give this kind of clarity.

I see flashes of pure joy on my husband's face when his old Monki shows up. I'll do something simple for him like a wife might do for her husband.  Maybe it's just asking him if he needs a drink or a bowl of cereal, but I know symbolically it takes the tiniest bit of the incredible load he has carried for so long off him.  It starts to tip the balance back to give and take instead of him always giving and me always taking,

For Danica it is different because our relationship was built on pain, mine or hers, and she doesn't remember me any other way.  She is thrilled to have a mommy planning playdates or going shopping with her, but she is not tenuous like Dan and Laney are.  For Danica the fact her mom is out of bed is just her life today, not something she's terrified we might lose. Still, her bedtime prayers have changed. Every night for as long as I can remember she would end with her little plea to a big God, "Please make mommy better." I would cringe wondering how messed up a child's faith could get if the answer never came.  Slowly this summer she has moved on to pray about other things and for other people, letting me slip off the list.  I love knowing her tender heart is getting a break from worrying about her mama.

During my plasmapheresis and IVIG treatments I made a list of things I really wanted to do this summer if I was well.  Some of them were simple like taking the girls putt putting yesterday.  Others were bigger like attending an outdoor concert, a major league baseball game and a trip to the beach, all activities that brought me true enjoyment before I became so ill.  We never got to the bigger things because of money, but in some ways I think it was for the best because we learned how to live and love in this sacred space of home and everyday life again.

I also set out to lose steroid weight and become thinner over these summer months.  This hasn't happened, because I'm hungry for the first time in years, and I want to eat.  I've realized the part of my brain that forgot how to enjoy anything is loving food again and drink and the community it invites too. I'm letting myself remember these right now.  I'm showing myself grace.  This body has been through hell. It's okay to look in the mirror and respect the wonder of flesh and blood surviving all I have no matter what the scale says.

This evening our family was hanging out on our deck.  We had just finished my "famous" corn dip. The sun was setting behind the trees. Over the Rhine was crooning "Favorite Time of Night" from our playlist.  The girls and Twixie were playing badminton and soccer.  I got that thick feeling in my throat as the cicadas sang.  I felt my anxiety about all we are facing financially begin to sprout in my mind and try to rob me of the perfect night.  I felt my fear about the evil in the world and the sadness for the suffering and brokenhearted.  Why are we allowed to be here like this when so much of humanity is wailing tonight?  Why does my heart ache over my own medical debt when people are starving and dying?  How do I balance the goodness of God with all these things?

I have always been too serious.  Life has always been a struggle between the highs and lows.  I feel everything too deeply.  I think about you and you and you, and I pray for you too.  I wonder how you are today.  I'll write you a note to let you know.  I'll buy you a gift when I see something that makes me think of you even when I can't afford it.  If I just met you I want to cut through anything casual and hear your story.  I want to know what you read and the music you listen to.  I want to know what makes you laugh and what makes you cry.  I know for sure God is real, and I'll give the reason for the Hope in me.  I know for sure life is hard and love is real, and we have to keep believing no matter what.  All this is exhausting.  Most don't have the stomach for it and need to numb themselves or dumb it down as a coping mechanism.  I get this.  I do.  I've tried to change. I've tried to medicate away the very thing I am learning is most likely a gift not a curse.

In this age of trying to capture our feeling in a facebook post or a tweet, I try to imagine telling some kind of narrative in just a few words.  It's not natural for me.  Most of the time I just can't do it, and I run to write for real in places no one reads.  Instagram is a little easier.  After all a picture is worth a thousand words, right? Sometimes I run to grab my camera and capture the way the light is falling or the girls are playing. I'm grasping to simplify what has always been so complicated for as long as I can remember.  I don't often succeed.  On the rare occasion it happens it is usually just a few words strung together, hanging out there like a mantra for my soul. My OCD brain holds onto them, and I chant in my head like a child rocking to sooth away the day and finally sleep.

Today it came in a pillow that showed up in the mail.


This I know.

I feel my symptoms returning slowly.  I have quietly let the people who need to know begin to monitor how far we let this go before I get help again.  I'm terrified, because I was released from a kind of prison, and I need to be free like this no matter what.  No matter what the cost.  No matter what the toll is on the people around me.  No matter how many more scars.  I can't go back where I was.  I knew another round might be needed.  I remember asking, "How long will this last?" The answer was, "We don't know.  Maybe three months, maybe six . . ."  I scribbled this in my little notebook I kept in the hospital those worst twelve days.


This I know.

 . . . It's Sunday morning now.  No church for us.  Dan and the girls have taken a month off, and I am not sure when I can go back.  I'm not sure why, but it has been good.  We slept in until almost nine. All of us.  We had coffee and breakfast and played Scrabble.  I am so tired from my twitching body and racing mind. Symptoms.  Our family will work on thank yous today.  Gratitude for a family who gave us Christmas in July.  It was amazing.  Gratitude for a laptop that showed up on our back deck when mine died. Someone who knows my world is still small and the keyboard and screen are the place I sort things out and reach out and am touched by you too.  Gratitude for a friend who tells me this.  "I don't believe God brought you this far and provided all you need to walk away from the help you might still need to fight for your life."  She's right.  Until someone sues I need to ask, "Do we have everything we need today?"  Once step in front of the other.  Be faithful.  Do the next thing.  Love harder. Celebrate the gifts.  Give the rest to Him.


This I know.