Wednesday, September 24, 2014

Not why but how? An 18th surgery.

"What surgery meant to Monica (Lucy) and what it means to almost anyone else were two different things entirely. For Monica (Lucy), a single surgery was more like fitting for a dress, or the rearranging of living room furniture: it was only a step towards something else. She never gave up believing that there would be a final moment, a last surgery, a point at which her "real life" would begin."  Ann Patchett, "Truth and Beauty"

I'm 38 years old.  I've had 17 surgeries in my life. The discovery of my Ehlers Danlos Syndrome and Chiari in October 2011 which led to my first brain decompression and fusion of occiput to C2 in November of the same year was the hardest and required the longest recovery. I have always known there would be more spinal surgery necessary down the road. When you have EDS once you fuse a portion that is compressing your brain stem or pressing on your spinal cord you rely on the vertebrae above or below to manage your range of motion. Our connective tissue defect lends itself to further subluxation and the need for more fusion. Since my initial decompression and fusion I've had tethered spinal cord release with removal of two large Tarlov cysts, three major abdominal surgeries including removal of a large mass in my pelvic region and then another surgery to remove a large hematoma. Last year I had my hardware removed from my initial fusion because it had come loose on the right side and caused a bone spur. I had two brain shunts.  This year I had a 12 day hospital stay in Maryland for plasmapheresis and the beginning of a round of IVIG that I finished here at home. I was hospitalized multiple times as well for adrenal crisis and even meningitis. Three weeks ago I completed another round of plasmapheresis here locally.

We don't measure my life or our family life in normal months or years. They orbit around these trips to Maryland and surgery or treatment. Every year we hope we might get more time between, better life in between, "real life" in between the punctuation of going under the knife and strengthening what is falling apart. Every time is a risk. Each surgery is an analysis of symptoms, measurements and most of all my pain and ability to function.

I fell the Saturday before my plasmapheresis was to begin. I hit my head and neck hard. I have been in pain since. The initial soreness and normal pain from a fall went away, but I am left with so much pain in my neck and left shoulder. I have had horrible headaches every day. My pressure has increased.  My left eye is blurry and my hearing goes in and out.  I have vertigo and  nausea. My neck hurts like daggers. This is something I haven't had since my hardware removal. When I bend my neck forward I feel like something is choking me and pushing on my throat.  The back of the left side of my head is numb and crawly. When I wake in the morning my arms and hands are numb. Something has moved for sure.

I kept thinking maybe we should do IVIG. I just had my head in the space I wasn't feeling better overall because we didn't follow the exact treatment as before. I had three beautiful months of health and life this summer.  Talking to Dr. Henderson about my symptoms today he said I don't sound sick at all.  The plasmapheresis worked. (I will get all my titers back today.) He clearly diagnosed my C4-C5 as the problem. I have shown a level of instability here on prior scans, but I didn't have this myriad of symptoms.

I need surgery. My 18th surgery. We are looking at a trip for me to Maryland on Sunday night October 20th and scans and clinic appointment with Dr. Henderson on Monday and surgery on Wednesday, the 23rd.  Hopefully I will only be in the hospital a night or two (I often have difficulties post-op) and released later Thursday or Friday to stay a few more days to heal so I can see him again for release.

There is a deposit. I will find out this week the total due. I was told it's typically $4500, but I would receive a 20% discount as a frequent flyer. There is travel and hotels. There is the need for someone to drive me and at least be there the day of my surgery. I have done so much of this alone for the very reason my husband works hard so we can be insured. My insurance and Medicare should pay for the rest of this surgery and hospitalization based on my large out of network deductible that was met earlier this year through your donations and help. Although we have a balance with DCH for over $10,000 for my April/May hospitalization we are appealing and hoping the portion after the deductible out of pocket will be covered. We also paid a huge amount before this spring's visit to cover our past balance from other surgeries just so they would allow me to return. Again, this money came through someone giving and us receiving.

I feel like a woman standing on the corner of a highway exit with a sign that says,


It's humiliating. I want it to stop. I want all of this to stop. I don't want to be a beggar. I want longer than 3 months.

I spent the weekend crying. My pain is so bad, and I think I forgot how it feels to live at a 9 or a 10 on the scale. I've been driving twice a day to get my girls. I have kept the pact I made with myself long ago to never drive with pain medicine in my system. This means I have to wait until evening to take anything. This cycle is so hard. Dan is devastated. My pain physically is his pain emotionally. I've slipped back into Danica's bedtime prayers. Delaney knows it's happening again and pulls away. Our realism about this journey being an ongoing one is clear. We just don't know how the provision will come. In every way this surgery is fighting for my life. It's not elective. It needs to happen. We don't ask "Why?" anymore, but we do look to the heavens and ask "How?"

I've been studying the book of Mark. Timothy Keller's book "Kings Cross" covers it beautifully. Mark was perhaps the most literary of the apostles. Little nuances of text I have never noticed before in passages about Christ and the disciples just knock me over!  Earlier this week I went back to read about two stories melded into one in Mark 5. A man named Jarius comes to Christ about his sick daughter who was surely going to die and while they were rushing there a woman with a blood flow for many years who (listen to these words) "had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she got worse" reached out to Him. (Boy do I relate!!!). She touched Christ. It says the power literally left Him, and that is how He knew what had happened. I never noticed this before. The Greek word is "dunamis" is POWER. Jesus had a sensation of weakness, a draining, and knew a healing had taken place. He stopped the crowd. He turns around and says, "Who touched my clothes?" The disciples thought it was silly since there was a throng around Him. When he finds out the person who touched Him He is clear to tell her the WHOLE truth about what happened. I LOVE how He finishes His conversation with her,"Daughter, your faith has healed you. GO IN PEACE AND BE FREED FROM YOUR SUFFERING." Keller writes, "Jesus is saying to her, 'Your faith has healed you and now that you know that, you are in a life transforming relationship with me.'

There's all the difference in the world between being a superstitious person who gets bodily healing, and a life transformed follower of Jesus for all eternity!"  

(Remember Jarius is there and getting frantic.  His daughter is dying!) While Jesus is standing there talking soul stuff with the woman, men came running up and told Jarius His daughter was dead.  (v.35)  Listen to what Jesus tells him, "Don't be afraid.  Just believe." (v.36)  

Keller writes about the delay, "It seemed to Jarius and the disciples that Jesus was delaying for no good reason, but they didn't have all the facts. And so often if God seems to be unconcsionably delaying His grace and committing malpractice in our life, it's because there is some crucial information that we don't yet have some essential variable that's unavailable to us. If I could sit down with you and listen to the story of your life, it may well be that I would join you in saying, "I can't understand why God isn't coming through. I don't know why He is delaying." . . . Right now, is God delaying something in your life?  Are you ready to give up? Are you impatient with Him?  There may be a crucial factor that you just don't have access to. The answer, as with Jarius, is to trust Jesus."  

It's no coincidence God would have me studying this passage in a week where He would put my family and I in a position where we don't understand how in the world He could come through again, even after all His faithfulness. There are hours I'm ready to give up. I'm inpatient. This seems like spiritual malpractice. Still, I believe with all my heart there is a crucial something I don't see right now.  The simple answer is to trust Jesus.  He is doing a thousand things in this one thing. I will wait in expectation. I will know for sure all this is for my good and His glory.  

Please pray for my pain.  Ask God to be in the details or scheduling. Plead with Him to provide. Most of all, will you pray for my Dan and Delaney and Danica. For me to live is Christ and to die is gain, but they need me here and as whole as possible. This is why I fight. This is why my Hope remains.

(To help with  this surgery there is a paypal donate button on the upper right of my blog as well as a gofundme link here  Thank you.)

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