Friday, April 4, 2014

Refine Retreat and a lumbar puncture

I was supposed to be leaving right now for a spiritual retreat with approximately 30 ladies at Salt Fork Lodge.  I stepped out in huge faith a long time ago.  I registered, paid the money we didn't really have and committed myself to going no matter what.  

I am too sick to go.

I am not in church.  I haven't been for years.  I listen to sermons.  I sing praise.  I am cared for by a church body.  I have relationships that hold me accountable and encourage me in my faith.  I spend time in the Word and prayer daily. Still, there has been a huge void.  I need to learn how to be in real community again.  I need to be included in sacrament and prayer and worship.  I was praying so desperately this retreat would be a fresh beginning for me in my spiritual life.  I shared some of my health issues with the retreat planner, especially my mast cell reactions to perfumes, and she lovingly asked all the women to refrain from wearing any scents for the weekend so I could be there with them. While others had roommates, I made a plan to stay alone to allow for rest and breaks as needed.  I have prayed hundreds of prayers over this upcoming weekend and the ladies who will attend. My dear Christa Wells and Nicole Witt will be there all weekend to lead worship.  I wanted to go so badly I thought God wanted me to go too.

He said "No".

This flare began several weeks ago really but exploded last weekend.  I am the sickest I have been in months, and I don't know why.  I am heading to the hospital for a therapeutic lumbar puncture to test my pressure but also run tests on my cerebral spinal fluid.  My neurosurgeon is always alongside in this journey.  My angel general practitioner is here helping order things and communicating his orders.

Delaney and my mom are heading to West Virginia for the weekend to be with my sister and her family.  I am so happy Delaney is getting this break.  She loves it there and thinks of my sister, Rochelle, as a second mom and feels comfortable in their home and in their lives.   Dan and Danica were planning a together weekend since I was also going to be away, so it won't matter much if I'm at the hospital or here in bed.  So often, I have done these grueling hospital tests alone.  I know most people can't imagine it, but this is what has worked for our family so that the girls are always taken care of and never feeling abandoned at some random person's home just so I can have someone sitting there with me.  It's okay.  For some reason I have been less strong, more emotional and more frantic during this flare.  It could be because I experienced a week of near perfect health in Arizona, and I can't believe I am back to this.  I am trying to look at that week as exactly what I begged God for.  I would often say, "If I could just have one week to be healthy . . ."  I wish my family had been able to see me so well.

This weekend's retreat is called "REFINE."  My plan to attend is a perfect example of how you can "feel" like the Spirit is leading you to do something, but the providence of God will always take you where He can do the most good and get the most glory.  Won't you pray for me in that vein?  Please pray for my husband who is so weary of all this I can see it breaking him and still he warriors beside me and sends me emails encouraging me to keep fighting.  From this morning, "Get stuff done.  Take chances.  Try everything."

My doctors and I still believe there is some form of autoimmune encephalitis attacking my brain and body.  These cycles of intense symptoms that leave me unable to function normally are getting worse in many respects.  Dr. Henderson does not believe the pressure I'm feeling is shunt failure but rather pressure cause from swelling of my brain.  The neurological, the systemic physical and the psychological issues compound how difficult all this is to diagnose and treat and more specifically how hard it is to get insurance to cover at least part of the treatment.

Will you all please pray for the lumbar puncture today?  Please pray I will have caring staff, skilled hands and the tap will not be bloody or with a leak?  Please pray for my doctors to know where to send me for the next stage in treatment and for the extreme cost of this kind of treatment to in some ways be approved and covered.  Please pray I will have a calm spirit, especially while lying there so still after.  Ask God to continue to be near as He refines me through more pain and suffering.

Our Hope remains.

"So that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ."  I Peter 1:7


  1. Monica, I am so humbled to read this and know that I am going to Refine in your place. I wish there was more that I could do than offer to pray, but I hope that through my experience at Refine, God will somehow be able to bless you. You will be in my thoughts, on my heart, and in my prayers all weekend and beyond, as I know God has crossed our paths for a reason that extends past Refine timelines. Before this, when someone asked me, "What's the nicest thing anyone has ever done for you?" I always felt embarrassed that I had a hard time recalling an answer. Somehow, from here on out, I don't think I'll have that problem anymore as this ranks right up there and will be etched in my mind for all eternity! It seems like this is one of your darkest hours thus far and I'm honored and priviliged to be a prayer warrior for you the way that God has orchestrated our paths crossing at such a time as this. Peace, strength, and comfort in the stillness. May he be glorified through you.

  2. Oh Monica- I am praying with & for you now. For the doctors, your husband, your children, all who can are are able to help in some way. Oh Lord - we come before you pleading for mercy and healing. Father, guide the doctors and help them to seek you for clarity as you are the ultimate physician. We can't understand such great trials and we cry out together on behalf of Monica and her family. My heart hurts for my friend. Lord - send miracles abundant today. Spirit God, fall fresh on Monica yet again today, and tomorrow and each day thereafter Lord. You are mighty & worthy of all our praise. Amen.