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.

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