Tuesday, March 27, 2012

Best laid plans, battle wounds and Providence

We left Ohio this morning with a very clear idea of how our day would go. We should know by now things will pretty much NEVER turn out the way we plan.  I grew up with Proverbs 16:9 engrained into my memory.  "A mans heart plans his way, but the Lord directs his steps." 

As the morning drive into the sun wore on and we entered Pennsylvania I called the hospital because I had still not spoken with the nurse to go over medications, time for arrival and presurgery instructions.  This is usually a quite lengthy conversation and generally for out of town patients happens before the day prior to surgery. Although I was told Monday everything was taken care of it turned out they did not have the bloodwork or clearance sent from my surgeon's office, they did not have the removal of the Tarlov cyst anywhere on the procedure description which mean those extra instruments and surgery time needed to be adjusted, and they did not have me scheduled for a PIC line at all. My heart rate increased, and I began to feel emotional.

Dan and I hadn't eaten at all, because we really wanted to stop in our old neighborhood in Gaithersburg and eat at the Diner in the Kentlands. This is cathartic for us both. We feel at home there. We know how to order without looking at the menu. For an hour we slip into a feeling of normal because before ALL THIS we used to go there on ordinary days with the sun shining, people smiling and waving at one another and us just blending in.

By the time I got the call all the forms were finally done the nurse was panicked.  I am on the schedule for surgery to begin at 7:30 am and Dr Henderson's schedule is not very flexible. There is no one available in specialized radiology until 8 am to do a PIC line, so she needed me to make it to the hospital as soon as possible to get one . We stopped to check into our hotel before heading over. As soon as I got to the hotel I had that crazy OCD and hair on the back of my neck thing. The Marriott we have stayed at previously was booked so I booked seven nights here at the nearby Courtyard.  The room was yuck. I know at this point some of you may be wondering why I care since I will be in the hospital at least half the time and how in the world I could be a snob at this point in the day and especially this part of the journey as a whole.  I simply could not imagine sleeping in that room for the night and definitely not coming back to the room after surgery. We left.  I had Dan drop me at the hospital, and I asked him to go to the Hilton nearby and see if they had a room and then go explain at the Courtyard and check out. The Hilton was full tonight.  Dan had the Courtyard move us to a King room on the top floor, and when he came back to the hospital I was STILL waiting for my PIC. They had misplaced my paperwork. Seriously. By the time they took me back Dan and I were both starving, grumpy and oh so tired. Of course the PIC did not go smoothly either. They use an xray image to help yhem guide the cath into my arterial vein. As the doctor was sliding it in he could see my face contort and saw my legs jerk. I could feel the cath poking me in the armpit area. This isn't normal. He stopped and pulled it out a little and put some contrast in and had another person come and help. He could not explain why there was no blockage showing on the screen but the cath would not move any further. I was getting really woozy and freaked out, so he said he would just use a shorter cath, because it was flushing fine and should do the job. WHAT? Okay, you're the doctor. But???

I came out crying, my arm hurt really bad, and I still felt like something wasn't right. We went into a TGI Fridays to eat. I really hate chain restaurants. Snob again, really?  The food was just because I had to eat. Smells were making me sick and the music was so loud. By the time we got back to the Courtyard and I saw the new room I was just too exhausted to fight. I have the heeb jeebs, but I have to sleep, so I made reservations to switch to the Hilton on Friday night and wiped things down best I could.

I miss my girls.  I need a cheerleader and my man is already down.  (Poor Dan really doesn't feel well and is truly exhausted.) I already have a painful battle wound, and I know I have to get back to some truth tonight before I try to sleep and face a much larger fight tomorrow.

I settled in and put on my earbuds to listen to a little audio clip on my "Faith" playlist titled "A Sweet and Bitter Providence." 

"Life is a winding and troubled road, switchback after switchback, and the point of biblical stories is to help us feel in our bones, not just know in our heads that God is for us in all these strange turns. The life of the godly is not a straight line to glory, it's more like a dark and seemingly unknown trail through the mountains. There are rock slides and slippery curves and hairpin turns that make you go backward in order to go forward. But along this hazardous, twisted road that doesn't let you see very far ahead, and may even make you feel like you've been lead to the edge of a cliff, God gives us encouragement and hope that all the perplexing turns in our lives are going somewhere good. Often when we think God is farthest from us or has even turned against us, the truth is that he is laying the foundation for greater happiness in our lives. God is plotting for our joy, he is plotting the course and managing the troubles with far reaching purposes for our good and for the glory of Jesus Christ. That is a sweet and bitter providence."

I wonder how this pain will turn into joy and greater good and His glory.  I trust him because He promises, and I believe all the requests you and I make are filtered by ways so much higher than we can humanly understand.  This I am sure of--when everything else falls away--no matter what the temporal answers to our prayers may be--if we know Him more, see Him clearer, shine His love brighter and stronger and long for heaven more He said, "YES!"  Bitter tonight.  Painful this week.  Hard this month.  Sweet for eternity.  Yes, please.

We will be at the hospital at 5:30 am.  Surgery is planned for 7:30 am and should last for 3-4 hours.  Dan plans to update my facebook page when he can.  He is not quite as communicative as my girls who were here for the last surgery so don't worry if the posts are not very frequent or detailed.  Thank you ALL for praying and asking others to pray and covering us with a blanket of love.  I promise I am still going to post about the amazing way God provided ENOUGH for this trip and surgery.  I will have some days flat on my back to catch up. 

Resting in His everlasting arms tonight as I try to sleep. 

"For from him and through him and to him are all things. To him be the glory forever! Amen."  Romans 11:36

Monday, March 26, 2012

He's still saying "Yes".

"When Christ died he purchased for you the "Yes" to all God’s promises, and that includes the promise to use his sovereign power to govern all the inexplicable, maddening detours and delays of your life for wise and loving purposes. He is doing a thousand things for you and for his glory in your disappointed plans."

Tonight as I tucked my sweet girls in bed for the last time before we leave them, as I kissed my husband on the forehead, hot to my touch and so not feeling well, as I packed my bags for Maryland with my body in great pain and my mind and heart swirling I was reminded that even in all this God is still saying, "Yes" to me.

I have so much I've been trying to write about, but I can't seem to divide my thoughts into smaller concise posts or combine them into one big meaningful one. The adrenaline that kicks in before these kinds of trips, especially when I am the one having surgery, is much like responding to an emergency for days. It leaves me breathless and shaky and in a fog. I hope to catch up on editing during our drive tomorrow and post tomorrow night when we arrive at the hotel. Thank you for praying and asking others to pray. Thank you for your tangible love and messages of encouragement. I pray you hear His voice in this song and in our continued journey. "For from Him and through Him and to Him are all things. To Him be the glory forever! Amen." Romans 11:36

Wednesday, March 21, 2012

By the Grace of God I am an optimist (A Dan post)

When did I become such a big optimist?  I'm the glass half empty, it's partly cloudy and almost never sunny guy.  I have enough built up aggression by midday that it fuels my lunchtime workouts for an hour.  So, why did I tell my father recently that after Monica's next surgery this family will be back to "normal".  Where did that inspiration come from?  My wife looked at me in complete shock after hearing that doozy of a forecast.  She just happened to be within earshot of my phone conversation suffering from what we now know as a mast cell reaction to either a kind of food or something in the air.  Her lower back was in agony while I tried to sugarcoat our current situation to my dad.  Sunday night Monica had to fashion a cloth napkin into a gas mask to escape a well perfumed patron at our favorite dinner spot.  Airborne odors are one of her greatest enemies inside and outside the home and they can strike quickly and without warning.  The reaction is similar to suffocating.  So why did I bend the truth heavily with my dad who lives hundreds of miles away?  

When I talk about Danica I always err on the side of caution.  Our little girl is doing absolutely fantastic, but there's always a big part of me that will always try to protect her and limit her activities.  When most parents wish that their babies would never grow up, I can't wait until Danica gets bigger and stronger with hope that my fears for her health and safety will lessen.  

Monica has always been the strongest fighter in our family.  Ever since we met she has displayed a deep sense of confidence in herself and her goals in life.  One of the biggest reasons I married her is because I thought she would carry our family on her back when called upon.  She had drive and a desire to be successful.  She was physically strong as well even though slight of body.  I remember we bought roller blades while dating and she took a really bad spill that first day out.  Her knee and elbow were beat up but she never flinched throughout the whole ordeal.  Little did I know that trip to the ER would be the first of many many more.  The fact that she's eight years younger than I was also appealing.  If I'm being honest with myself, I have to admit that I take advantage of her by thinking she will always be around to help.  For example, there is no way I could ever have made it through all the Danica events without her there taking control.  When she was recently recuperating at the lake house, I often found myself alone and freaked out when one of the kids would sniffle or cough.  I would panic!  Monica wasn't around to take control in an emergency.  It was an extremely long two months without her.  We are, after all we've been through, best buddies and there is no one I'd rather hang out with than her.  Yes, our kids are healthy now but Monica has jut begun her journey with EDS and mast cells and POTS.  

Why am I such an optimist now?  Monica's struggles are now my struggles.  She is going to need my help and encouragement not just with the coming surgery but through all the experiments we'll be testing in the near future that may alleviate her symptoms.  When I think about the past four years and what amazing challenges this family has overcome so far, two things have remained constant; my commitment to my wife and the faithfulness of God through the love of those familiar with our story.  When I asked Monica for her hand in marriage far away on a Hawaiian island, I knew it was the single most important promise I would ever make in life.  If I am nothing else I will be a faithful and loving husband to her as long as I shall live.   I have slowly been changed by the support of family, friends and very often, the support of strangers and those that choose to remain anonymous. This next surgery for Monica weighed heavily on our minds as the cost for travel, hotel and medical expenses dug deep into our thread bare pockets.  By the grace of God our decision to proceed as planned was practically made for us through Monica's friend, Kristin, and her friend, Mellany,  who with incredible thoughtfulness and action accomplished raising much of the funds needed to move forward.  It is amazing how God always seems to wait until days before to fill the gap.  Though we have another long week away from our beautiful daughters, we know this must be the next step in the search for healing.  Just knowing we have such caring and loving people following our story and praying for us gives me the confidence to face each day with a bright outlook.  Knowing that my commitment to my wife will never cease brings me the strength and courage she needs me to have now and in the days ahead.  

"But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them—yet not I, but the grace of God that was with me."  I Corinthians 15:10

In spite of imperfections and about deliverance

“I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wondering awed about on a splintered wreck I've come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty bats and shines not in its imperfections but overwhelmingly in spite of them...”  Annie Dillard


It's Spring today.  Somehow in the last year I have become so ill that even this sacred season of renewal and rebirth is lost to me.  I am alive but feel trapped in a body that will not let me LIVE in any meaningful way.  I am grieving this along with so many other things I once enjoyed that have been taken from me. 

I grew up in a sweet little town in the Shenendoah Valley.  Every single day of every season the Blue Ridge mountains put on a show.  I was a girl who pressed Dogwood petals in my books of poetry and clipped Peonies for my room.  I played outside from morning until night and came in with grass stained feet, dirt under my fingernails and high off every sense being awakened by the wonder of God's creation.  My mom worked beside my sisters and I in our large vegetable garden and taught us to recognize every flower and tree.  Our windows were always open and our sheets smelled so much like sunshine we didn't even complain about how scratchy they were or if an occasional lady bug found her way in with the laundry. 

The day I turned sixteen I got my drivers license.  I began going to our sweet local park not far from our house to swing and look way up in the aged Maple trees.  I would bring a blanket and lie on the grass with my journal, dreaming and writing and praying.  I was was also dating my first boyfriend then who brought to me an even greater appreciation for the outdoors.  We began taking hikes on the Parkway.  Several times I drove to Humpback Rock and hiked all by myself.  I needed to be as close to God as I could get.  I needed to be alone there in all that beauty.  At night I would sit on our porch in an old flannel shirt, wrapped in a blanket and watch the moon and stars.  I was fascinated with His handiwork in the night sky.  Looking back I realize how dangerous some of my gallivanting alone probably was, but I didn't feel afraid.  This was before I was wounded and survived to tell about it.  I sometimes wish I could go back there if only for a moment to just remember what it feels like to trust so completely again. 

Now every single spring thing reminds me of how sick I really am.  A Hyacinth could put me into cardiac arrest when just last year I kept one in the window of our home.  I am dazed and confused by this explosion of the world around me where I once found so much joy now being off limits.  As I type this my face is burning red and tingling.  Instead of episodes being contained they are lasting longer and longer and I am weaker and weaker after each one.  I am afraid.

On Sunday night my parents returned home from a trip and spur of the moment Dan and I decided to take time to go get something to eat alone.  One of our favorite things to do is go to BRAVO and split an appetizer and dessert.  When we arrived there was absolutely no one at the bar and so we chose to sit there knowing we weren't ordering a full dinner.  Dan ordered a beer, a very rare treat for him these days.  We began to talk and dream like we always do when we finally get time alone together.  We felt a little normal.  I had a slight headache, my neck was painful and the lower part of my spine was stretching and buzzing, but overall I was able to block these things out and be in the moment with my husband.  Suddenly, like a freight train bearing down on me, a sickening smell hit me in the face.  I looked up and a man and woman had come in and sat about seven stools from us.  She had on the strongest, most noxious perfume I had ever smelled.  I began to gasp.  The instant physical reaction was like something out of a movie.  My neck and face became flaming red and so hot.  My throat started to close up and my heart was racing uncontrollably.  I grabbed my purse and ran from the restaurant.  Dan saw what had happened to me and smelled the stench.  He paid our bill and left his beer only half gone.  Our fun was over.  Just like that I can be sent into a tailspin physically by almost anything.  I never know how high the toll will be if I choose to leave home and participate in life.  The sad thing is I am just not recovering from Sunday.  I fear the combination of that intense reaction with my once beloved spring has taken me to a new level of mast cell activation.  I am helpless to know what to do.

Tonight my family will surely head out into this beautiful neighborhood, something we always dreamed of when we lived on the other side of town.  It is one of the biggest blessings of our basement home.  I will not be able to go.  I won't be able to watch my children ride their bikes or sit on the back patio and talk with Dan.  I will be inside, a place that is probably making me sick too just not as bad.  I don't know why God is taking these last things that could offer me much needed hope away from me.  I grab a volume of Annie Dillard and experience some of what I love about this world through her words.  I stumble across the above quote, and it makes me cry.  The imperfections of this fallen world attacking my every cell, the brokenness of this body scarred and sometimes barely breathing, the longing of my heart to call even this mess a real life continues to shine as something beautiful.  Only God is able to redeem me in spite of all this sin, sickness and sorrow.  Only by His grace and through His strength can I survive . . . and even shine.


I never finished this post from yesterday, and I realize it might be more meaningful to write an entirely new one today, but God has answered my fear and discouragement in some very powerful and tangible ways in the last twelve hours.  I will write specifically about these in the coming days, but I have to tell you the Holy Spirit is moving and working in lives and hearts, and I am reminded to be faithful here in this pain because it is His plan for me until He will DELIVER me.  God sent me this Word in my inbox accompanied by a note of encouragement. 

"For we do not want you to be ignorant, brethren, of our trouble which came to us: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many." II Corinthians 1:8-11

I have many times a day when I feel burdened beyond measure and despair even of life.  But listen! (There is always good news!  This "sentence of death "I carry acutely these days (one that in reality we all carry through Adam) should  be the reminder, "We should not trust in ourselves."  God raises the dead!  He is delivering us moment by moment with Grace and He will continue to deliver us!  Oh how I love this last part. 

"YOU helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through MANY."

Your prayers.  Your gifts.  Your thanks to God for all the good He's done and requests for the good He is sure to accomplish . . . You are working out God's deliverance in our lives. 

Satan has been on attack in my heart telling me I am not accomplishing anything for the Kingdom of God and becoming worthless even to those closest to me, the ones I am surely called to love and serve.  The TRUTH has been brought over and over to me.  THIS SUFFERING IS GOD'S WORK.  ENDURING IS GOD'S WORK.  TELLING THIS STORY IS GOD'S WORK.   

My surgery is a week from today.  I have had enough of these now to tell you the days leading up to a trip like this and an operation like this become frantic as I try in my very weak frame to plan and prepare for the girls who we will leave behind, for the logistics and paperwork involved for hospitalization, packing for myself the things I'll need in the hospital and then at the hotel, filling prescriptions (I am currently on twelve), and remembering to keep breathing and praying and surrendering during it all.  I am also off my aspirin as of Monday due to the risk of bleeding and the pressure in my head is much worse.  In even this God is bringing wisdom to the very specialized doctors I see to understand things they have not . . . DVT in the dural sinuses, blood clots, venous pressure . . . scary stuff.  None of it is beyond the knowledge of the God who intricately created this body and wrote my days.  I humbly ask you would pray and ask others to pray for every detail of this trip and my surgery and the healing.  With so many complicated health issues, some we do not really have a plan for yet, it adds a new layer of anxiety.  Please pray Dan and I will calmly move forward in difficult days and God would be glorified by our response to each and every situation and outcome.  God is using you in our deliverance.  Thank you. 

Our hope remains.

Wednesday, March 14, 2012


The world decided to wake in full today.  Splendorous sunshine.  The coo of two doves in harmony.  Little green things rising from the dead.  Dan and the girls are out to play in the beauty and celebrate healthy bodies, a safe and peaceful neighborhood and victories of many sorts, and I am in bed.  Heart racing.  Head throbbing.  Face burning.  Sometimes no amount of truth seems to ease the ache of being so afraid and so alone.  I gave everything to be able to watch Danica finally be okay and our family finally just LIVE.  I am left here in this tomb of a room.  The stench of self pity, the worst sickness of all, hangs in the stale air.   

Hot tears burn as I watch this video "starring" a long admired word artist from Lindsey Letters.  

This afternoon I sat at the table and worked through Christ's life in twelve chronological "Resurrection Eggs" for a ministry project Delaney's class is doing.  As the pressure built to a crescendo in my brain and my skull was literally buzzing I went from passage to passage reading almost mindlessly the very truth that would save me.  A child born of a virgin.  A carpenter's son who was also the Son of God.  Loaves and fishes multiplied by Him.  A parable about how the birds and flowers are fed and clothed so why should we worry?  Winds and waves obey Him.  A story about a man on a journey to find a pearl of great price.  A baptism, a dove and the Spirit.  A supper we still celebrate.  His body broken.  We eat.  His blood shed.  We drink.  Arrested.  Beaten.  A crown of thorns for the King.  Crucified.  ALIVE.

My eye was twitching as I supervised this project rich with teaching moments, and I forgot the important part. 


I found myself getting irritated as we tried to finish up.  My head was throbbing and my throat was tight.  Delaney was distracted by the dog and Danica was wanting to add Strawberry Shortcake and Barbie items to the eggs.  I began raising my voice, but I couldn't really make the sound come out.  Strangely enough this is when my girls notice me.  When I'm still and can barely make a whisper they stop to hear me and see me. 

"Mom, what's wrong?"  Delaney stopped mid chaos.  I softly said, "I'm just wanting you to understand this egg carton tells a story from birth to death and Resurection, but Jesus, the Son, always was.  The Spirit always was.  God, the Father, always was.  They are the same today and will be forever.  Do you understand?"  She contemplated as we finished up the last few and looked up the passages that tell the stories for her to share with the eggs.  The project was packed up, and I cleaned up and moved in to my room to rest my head. 


Dan got home. The girls rallied around him excitedly, and they all ran off to play outdoors.  An ache filled me. 



He calls my name.  I am not alone.  I Know. 

Tuesday, March 13, 2012


I am back in my bed, and it's only 9:15 am.  Danica came in to our room at 5:45 am this morning, but I had already been awake for hours, tossing and turning and hurting.  By the time Dan got home from work, taking car to the Chrysler dealership about the frame and going to the grocery store last night I had already tucked Danica in.  I went out into the family room and Dan was eating and watching the HGTV show "Love it or Leave it."  I could tell he wanted me to sit down and relax with him and enjoy some time not talking about anything serious but just being together.  I can only imagine what it's like for him to always wonder what my condition will be when he gets home.  Most of the time I have little or nothing left for him, this man I love so deeply.  It breaks my heart.  He could tell instantly I was in a mast cell flare.  My face and chest were bright red and hot.  I was shaky and short of breath.  I was itchy all over.  I literally felt like my own body was warring against itself and trying to kill me. 

I need help.  I have to find out what major triggers are making me so sick.  Today I am completely wiped out.  I feel like I have the worst flu, but I know it's not.  It's just my thirty-six year old, broken body.  I'm discouraged.  I have book club tonight.  I already know I won't be able to go.  I feel more isolated than ever.  No one, not even my husband, knows how to respond to all this.  He tried to take a picture of my reaction to document the very real physical reactions I have been having.  After seeing his three shots I deleted them all.  They were horrible photos.  I looked awful.  Dan muted the TV and looked at me.  He put his hand on my knee.  He said, "I think you are worse than ever.  Is this how it's going to be?"

Fifteen days from now I will be in the operating room in Lanham, Maryland.  I feel like I need to just get through the surgery and recovery and then make a plan for these other conditions.  I also suffer from POTS (Postural Orthostatic Tachycardia Syndrome).  During my visit with the geneticist he referred me to a cardiologist in Toledo who understands EDS and the relationship with POTS.  He also suggested a few cardiac drugs to try after my surgery.  I called Dr. Grubbs office yesterday only to find out there is a year wait to see him.  I can't imagine living this way for another year.  There are also several mast cell specialists in Boston.  I need to see them maybe more than any other doctors right now.  I know I have to wait to put all this on the calendar until I make it through my tethered cord surgery, but I am desperate for help. 

This morning, I am broken in pieces.  I feel like everything concerning my health is out of control.  I will do ANYTHING to feel better, but I don't know where to start.  Everyone says, "You are more than your diagnoses."  Yes, but I can't push myself any harder to do anything more than basic care of my family and surviving.  This morning I crawled back in my bed laden with guilt because I could hear the voices in my head taunting me about the need to be DOING something to be good enough for God.  I closed my eyes and prayed. 

"God, who am I?  What do you want me to do with the suffering you have allowed in my life?  Did you really purchase me for this?"

I booted up my laptop.  Dan's FMLA papers are due to HR tomorrow and the neurosurgeon has yet to fill them out.  I need to follow up.  A sticky note on my desktop with a quote from Ann Voskamp answers my heart cry.

"I am from the God of Redemption, who restores the years the locusts ate up, who writes new stories on pristine pages washed white with the blood of the Lamb — whose business it is to work out all messes for glorious good."

Next to it is another sticky note with above verse from Revelation.  "HE MAKES ALL THINGS NEW . . ." 

"What do You want me to do with this aching pain, bones out of joint, short of breath body?  How will I clean up this mess of a life?  Where do You want me to bury my broken dreams of doing something big for You?  What can I offer or do well or accomplish in this place?"

"And He said unto me.  WRITE: for these words are true and faithful."

Perhaps this is why He brought me here.  To tell this humble story on pages REDEEMED by Him.  His words are TRUE and FAITHFUL.  My mantra today will be this.  "I will be made new.  I will be made new.  I will be made new.  Glorious good.  Glorious good.  Glorious good." 

I'm back to hope.

Saturday, March 10, 2012

When the wait is over

"The longer the blessing is in coming, the richer it will be when it arrives. That which is gained speedily by a single prayer is sometimes only a half-weighted blessing--but that which is gained after many a desperate tug and many an awful struggle is a full-weighted and precious blessing. The blessing which COSTS US THE MOST PRAYER will be worth the most." Charles Spurgeon

A year ago I wrote this post about faith and a video of Danica getting her Minerva brace off and taking her first steps.  (Please, if you have forgotten where we have been revisit this special video).  Today we experienced the full-weighted blessing of letting her ride a real bike in the neighborhood.  For years Danica has sweetly watched all the kids out on their scooters, riding their bikes and running circles around her.  I think she accepted her restrictions much more than Dan and I ever did.  It was hard to always say "no" about magical childhood fun.  It was as if we could feel something or someone stealing the days that ebbed into months and years.  Watching her ride today I could literally taste the fullness of her joy.  This waiting and expecting we do in Jesus name is never wasted time.  When it is over and the answer comes . . . painfully and slowly, like bone fusing to bone you wake up one day and realize the blessing is greater, the faith is stronger, the knowledge of God is so much deeper and you get on your knees not to ask for a thing but to thank Him for choosing you to be part of this staggering miracle.  If you doubt He is listening to you when you pray, if you think the struggle and the wait are too exhausting and oh so painful I ask you to sit awhile with our story.  Be patient.  He is FULL of compassion and His mercy endures forever. 

Be patient, therefore, brethren, until the coming of the Lord. Behold, the farmer waits for the precious produce of the soil, being patient about it, until it gets the early and late rains. You too be patient; strengthen your hearts, for the coming of the Lord is at hand… As an example, brethren, of suffering and patience, take the prophets who spoke in the name of the Lord. Behold, we count those blessed who endured. You have heard of the endurance of Job and have seen the outcome of the Lord’s dealings, that the Lord is full of compassion and is merciful.  James 5:7-11

Wednesday, March 7, 2012

Mast cells . . . Why I am really sick today

Today is a hard day. Not in a spilled my coffee, yelled at my kids, stuck in traffic, late for work kind of way. More like woke in horrible pain from not really sleeping; ran to the grocery store because I only have my dad's car for a few more days; somehow touched something perfumey (could have been as simple as someone who used the cart before me having a stinky hand lotion on) and got so sick I could barely make it home; carried the groceries in and down the stairs even though I really can't do that anymore; stripped all my clothes off; showered and could still not get the smell out of my body; opened one of our two windows and the farm smell mixed with unknown sickening sweet floral scent brought me to my knees, fell in bed sick and weak; checked email and Dan wrote our one car has a rusted frame that needs fixed before we travel again to Maryland, cancelled Twixy's surgery to be spayed tomorrow; can't cry even though I need to, and it's only 2:20 pm kind of day.

For the first time in my life I have a name for why so many things in my environment cripple me without warning. It is called Mast Cell Activation Disease. I encourage you to link over to this research in entirety or just Google it when you have time, but I will hit the high points here. What I knew before this diagnosis is the fact I am exquisitely sensitive to even small amounts of chemicals. I now know mast cells discharging histamines and other compounds are the reason I develop a hot, red face, a racing heart, erratic emotional behavior, and a metallic taste in my mouth and PAIN. Even one simple exposure can leave me in bed and sick for days. I understand why taking a shower or washing my hair makes me sick. (I can literally taste the shampoo and soap I use, no matter how "unscented" it is.) I understand why someone's kitchen floor they swiffered a day ago can leave me breathless and running to the bathroom. . . I could go on and on. It also explains why living in this basement in a relatively new house built on what was farm land has broken down my body over the past 9 months to the state I am now in.

Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. (This is code for "There is nothing wrong with you, your bloodwork looks fine, you are crazy.") . . . MCAD is first suspected on clinical grounds, based on recognition of compatible mast cell mediator-related symptoms and, in some, identification of typical skin lesions. The clinical presentation of MCAD is very diverse, since due to both the widespread distribution of mast cells and the great heterogeneity of aberrant mediator expression patterns, symptoms can occur in virtually all organs and tissues. Moreover, symptoms often occur in a temporally staggered fashion, waxing and waning over years to decades. Symptoms often initially manifest during adolescence or even childhood or infancy but are recognized only in retrospect as MCAD-related . . . Patients with most types of MCAD often initially enjoy symptom-free intervals interspersed amongst symptomatic periods. Over time, symptom-free intervals shorten, and finally symptoms become chronic with intensity which fluctuates but with an overall trend toward steadily increasing intensity. (This explains why people can only remember you looking well, active and healthy even though you know you have been VERY sick for as long as you can remember.)

When Dr. Tinkle explained that Mast Cell Disorders very often go hand in hand with Ehlers Danlos Syndrome (which makes total sense when you consider their origination in skin and connective tissue) , POTS (my next post will be about this additional diagnosis) and yes, ENDOMETRIOSIS.  (Endometriosis is the insidious disease that ate away my female organs and bowel (This explains why endometriosis can continue to grow even after hysterectomy!) I felt like someone had turned a light on in a room that has been very dark for a very long time. 

The above video explains mast cells, how and why they go rogue, and also details about some of the many symptoms. There are two additional videos in this series posted on You Tube that give even more details.  I cannot tell you how scary but also relieving it is to have these experts talk plainly about the ways I have been feeling on and off for years and now chronically. 

For so long I have gotten weird itchy skin lesions after showering. I have had IBS for a very long time which I now know is probably a combination of gluten intolerance and other food allergies exacerbated by mast cells. I have had what I always called "flash fevers", the facial flushing after being exposed to a trigger which could be as "simple" as stress, hairspray, a baby wipe, a flower or more complicated like foods which cause all kinds of anaphylactic symptoms such as my tongue swelling, throat getting tight and choking, rashes, etc. These food reactions seem to never stay the same so avoiding them can be very difficult. After I eat something that causes a reaction my stomach swells like I am six months pregnant. Every single place I have an incision also begins to sting and hurt during flares. (And that's a lot of my body at this point!) I have periods of tachycardia following a trigger. I have increasing brain fog which I always called "fibro fog". All of this leads to extreme weakness, fatigue and pain. It's disabling and no one can see it . . .

I planned to share more links and information, but it is now 8:06 pm, and I am swollen, shaky and done. Most days I push and I push through. I hit a wall before my Laney and Dan even get home, but I still try to make dinner, fold some laundry, call the insurance company, call the neurosurgeon, have a conference call about a claim, make a plan of action to appeal . . . you get the point. Tonight when Dan came home from what I'm sure was a long, hard day especially in light of the car news. His dinner was waiting. I tried to do laundry, but there was a load in the dryer still. And I tried to cry to get him to understand I am really finished. My face and body were screaming I can't do anything else.  It fell flat because I can't make tears any more. I ask him to look me in the eyes. "I need you to SEE me." I know he hasn't wanted to understand my new diagnoses. He hasn't read the blog. He hasn't expressed any emotions surrounding it. I have heard him tell people, "Once we get through this next surgery we hope our lives will return to normal." (Oh how I hate that word.) He says to me, "I thought you were fixed." It cuts me like a knife. My decompression and fusion were damage control. My upcoming surgery is very much the same. This isn't even like a cancer you can cut out or kill with a strong drug and give a percentage of reccurence. (Sometimes if I'm honest I wish it was something that could take my life.  I wish it was something people understood and wore ribbons for and told you were brave and beautiful for.)  This is my body. This is my life. This is our life. I am not being defeatist or unbelieving in a God who can heal. I am a realist. My outward body is perishing. I get that. For the first time I am trying to positively look at the treatments available. I am understanding my limitations and the truly chronic nature of these disorders. I am willing to do everything I can to have the "best" life possible and be there for my family and give God the glory, but I may always be sick. I will probably always be sick. 

Please don't email me about how my faith could be stronger or my attitude more positive.  I don't even need you to see me.  I humbly ask for you to look through this pain and the continued struggle of my family and I and SEE HIM.  His promises are true.  He will heal all my diseases.  He will wipe away all my tears even the ones I cannot cry.  My heart will perfectly look like His heart someday. 

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."  II Corinthians 4:16

Oh yes, and in all this mess I saw Him in a patch of sunshine falling across my "story quilt", and I was glad and grateful.  He is good and His Grace is greater. 

Sunday, March 4, 2012

Paying the price . . . life with EDS and how you can SEE suffering

I had such lofty intentions of posting several days last week about Ehlers Danlos Syndrome and what life is really like with this disorder. The absence of posts is a perfect example of no matter how much I want to I really can't promise or plan anything. I never know how much energy I will have. I never know how much strength it will take to do one simple task or run an errand. By afternoon when my job as a wife and mother gears up I can barely function and have been needing pain medication just to move through the rest of the hours in the day. I have to lie down to rest a lot. Every single decision to take a shower, dry my hair, make the beds or do a load of laundry can leave me in so much more pain and unable to keep other commitments I might have made. If I push through something with adrenaline I pay a huge price the next day. Every single step must be calculated and the balance is nearly impossible to find in a body that literally changes and moves minute by minute, hour by hour.

Yesterday I attended a very special shower for my friend who is finally expecting a baby girl. I don't know if I have ever prayed so hard for someone to conceive. I had to be there to celebrate this new life. Last evening we had a party here for my niece Andie's sixth birthday. These were two social events in one day that were very important to me. On top of the heightened activity which increases my fatigue and pain level I also was reacting to something I ate. My tongue was swollen and had little sores. My brother came to the party here with cologne on. Literally as soon as he came in the door I could feel the heat rising up my neck and face. I began to fuss at him. I hate being that person who everyone has to adapt around. I know they roll their eyes and snicker no matter how much they love me. If you haven't experienced it you can't imagine it. The world around me is attacking me and making me sick. Church is perhaps one of the worst places. For some reason people like to smell really "good" for God. Just the decision to sit behind the wrong person can leave me tight chested and with a migraine for the rest of the day. The damage is already done once you realize it's there. You can't go back. You have to suffer the consequences.

Unwisely perhaps I had taken Danica to the movies the day before. For five years before Danica was born I had spent so much "alone" time with Delaney doing simple and fun things. Going to the movies at Washingtonian Center, feeding the ducks, browsing Barnes and Noble and having lunch at Corner Bakery was one of our favorite Saturdays. I have a little treasure box where we have kept all the tickets. I have never taken Danica to the movies just me and her, so my promise to take her, JUST her, to the first showing of "The Lorax" had to be kept. Because I have a car to use for the next week since my dad is gone in India I have made a bunch of appointments and plans including my preop appointment with my doctor over the next week. Driving my dad's little car is much easier than our big Pacifica. Friday, I made a critical error of not moving the handicap hang tag over from our car before Dan left for work. I resisted getting one, but I can tell you every step I can save is worth gold. My limited range of motion in my neck makes driving painful, exhausting and yes, even a little unsafe. Backing up in a parking lot is truly dangerous. Sitting in the theater I realized the loud sound was making that reverb in my head. Holding my neck to look up and forward was causing spasms. Half way through the movie Danica needed to sit in my lap because it's so hard for her to sit in the movie seat without it folding her up. Holding her brought tears to my eyes. How in the world did going to the movies become something hard?

Here I am today in bed. Every single joint in my body hurts. My muscles are twitching. For some reason my ankles and toes are screaming. My shoulders sublux no matter how I lay. My right wrist pops as I type this. This is the heavy toll due when I decide to participate in real life.

There are many links I could share that explain Ehlers Danlos Syndrome in medical jargon. None of them are really as effective at explaining it as listening to someone who lives with the genetic disorder. A dear EDS sister bravely shared her story and has given permission for me to post it here.

It is long. It is hard to imagine, but it mirrors my struggle in so many ways. She had the same surgery with Dr. Henderson that I had in November and also had the surgery I am facing later this month for tethered spinal cord. I cannot really put into words how this community of people who share in a unique kind of suffering have helped me to accept my diagnosis and also have given the hope of finding ways to improve my day to day living. Kristin is one of these amazing spirits who shows me how to move forward and yes, even embrace this gauntlet with a secret gift inside.

Simone Weil wrote, "The capacity to give one's attention to a sufferer is a very rare and difficult thing; it is almost a miracle; it is a miracle." Please, if you don't have the time now then bookmark this and listen to it when you can. I will post some of the medical discussions about EDS as I continue to share over the next week, but today I just want to impress upon you the deeply personal way my family and I are affected by EDS. This is where we are living now. Most of the time I love when people tell me how great I look or how well they think I am doing. It means I continue to be able to "fake it" for certain occasions. What means the most though is when someone sees me smiling but knows I am gritting my teeth. They offer me a chair when we begin talking because standing up my legs feel like jello, and I often feel like I might pass out. They offer to carry something that for most people isn't heavy but can literally pull my shoulder out of joint. They understand when they ask, "How are you?" that my answer will probably be something like, "Hanging in there . . ." and then I will quickly move on to the next topic. Truly, looking at another's pain and not turning away is a rare gift. Sitting still with someone who hurts ALL the time and not making it about their suffering but about all the other things they still are in spite of it is a miracle. I am so blessed to have these kinds of people in my life.  I have been thinking about the Bible story found in Mark 2:1-12.

"And again He entered Capernaum after some days, and it was heard that He was in the house. Immediately many gathered together, so that there was no longer room to receive them, not even near the door. And He preached the word to them. Then they came to Him, bringing a paralytic who was carried by four men. And when they could not come near Him because of the crowd, they uncovered the roof where He was. So when they had broken through, they let down the bed on which the paralytic was lying. When Jesus saw their faith, He said to the paralytic, “Son, your sins are forgiven you.” And some of the scribes were sitting there and reasoning in their hearts, “Why does this Man speak blasphemies like this? Who can forgive sins but God alone?” But immediately, when Jesus perceived in His spirit that they reasoned thus within themselves, He said to them, “Why do you reason about these things in your hearts? Which is easier, to say to the paralytic, ‘Your sins are forgiven you,’ or to say, ‘Arise, take up your bed and walk’? But that you may know that the Son of Man has power on earth to forgive sins”—He said to the paralytic, “I say to you, arise, take up your bed, and go to your house.” Immediately he arose, took up the bed, and went out in the presence of them all, so that all were amazed and glorified God, saying, “We never saw anything like this!”

The man could not walk, but his friends believed so much in the miracles Jesus could perform they carried him and went to great lengths to find him healing. The passage specifically says "When Jesus saw THEIR faith." If you know and love someone who is sick and hurting there is no greater gift than picking up their mat and taking them to Jesus. I know there are hundreds of you who are praying for us. You take the time to read this blog, sit for a few moments in our world, and you lift us up. Your attention to our suffering is not in vain. I humbly thank you for caring for my family and I for so long. I am amazed, and I will continue to give Him the glory for this story, the simple narrative He writes in my brokeness, a small price to pay for what He prepares for eternity.