Sunday, April 14, 2013


"You want to cry aloud for your mistakes.  But to tell you the truth the world doesn't need anymore of that sound."  Mary Oliver

I haven't been writing here because who really wants to hear anymore of the sound of pain and sadness.  Still, lovingly so many of you continue to ask how I am doing and how our family is.  It is hard to keep up with all my communication when I am in a slump like this.  I'm sorry for neglecting some of you who could and would support us and love me in a different way if I was more honest about what is happening.

I have had a whirlwind of appointments the past two weeks with specialists.  This coming Thursday Dan will take me to Cleveland Clinic for a defecography.  Yes, it is as horrible as it sounds.  I am so demoralized by my body failing me in this area.  Wednesday I will go through a special prep.  It will be very hard on me physically, and  I never know what to expect from my crazy body.  I would really appreciate prayers for strength and courage.  I will meet with an even more specialized colorectal, pelvic floor surgeon on May 6th to decide how we could repair the damage.  I have had so many abdominal surgeries I am not a candidate for the usual surgery.

I want to write a separate post about my cardiology appointment last Friday.  My dear friend Sarah drove me to Toledo.  I can't put into words how much I needed to meet this doctor and what a positive experience it was for me in all ways.  I am beginning new cardiac drugs including bystolic and midodrine.  I'm still taking the propranolol but hoping if I find stability with the other meds I could wean off of it.  I'm hopeful my POTS symptoms will improve and allow me to be a little more active.

I am thrilled to report after a week of new treatment for my abdominal pain I am seeing some relief.  I began taking neurontin for the nerves that were cut twice within a couple weeks when my abdominal mass was removed and then the hematoma.  I began using lidocaine patches every twelve hours and a TENS unit to help change the pain messages to my brain.  A week ago I was curled up in bed crying.  I had several days this week I couldn't function.  I am still always aware there is something wrong but it is a dull ache today and not a knife in my gut.  For this I am so thankful.

I definitely haven't wanted to update on our financial journey.  I felt we had taken all we could or should.  I believed if my health issues would just calm down and Danica would be well and Dan and Delaney would stay well we could find at least a place of calm.  We have never thought we would ever achieve financial freedom again, but we hoped for something better.  The stress of the deep cost of medical care is perhaps one of the most painful parts of being sick.  One of the tragedies of living through what we have for oh so many years is losing your life and then losing it again.  There is so much shame.  There is the sweeping feeling of doom on even good days when a past due bill comes or the phone rings AGAIN, and you know you can't even make a payment plan.  We owe so many different people. If we even made a plan to pay each one $20 a month we would not be able to eat.  On top of this the actual copayments and medication are overwhelming.  In the last month I have had $200 in copays and over $300 in prescription copays.  If it weren't for the continued help from The Canton Chapter of the Foundation for Community Betterment from their fall fundraiser I would have had to cancel appointments or not buy prescriptions I need.  We have finally met our in network deductible.  These past months we have had to pay out of pocket for so many claims because Summa was not processing them.  It is a nightmare to try to even manage the paperwork and the bills coming in and trying to pick who to try to pay.

Yesterday both Dan and I were served by certified mail of a summons to court.  Imagine the heartbreak and fear.  Here we go.  More can't be far behind.  How do you respond or handle this?  The suit is for $2,470.87 to Akron Children's Hospital.  It is a little ironic because that is the place all this began.  It is probably the hospital system we owed the least to.  It was before Danica's Chiari diganosis.  We had several scans there and lots of physical therapy.  We moved on to University Hospital in Cleveland for her first brain surgery.  It quickly became a "pay to play" world for us.  We had to keep our heads above water for the current care we needed.  Dan had a year of very expensive treatment and scans for his kidney issues.  My bills and surgeries began.  We traveled to get opinions for Danica when her surgery failed.  We landed at Cincinnati Children's.  We then fought to keep them paid with the help from you all.  I needed a hysterectomy.  I needed bowel surgery.  I needed brain surgery and fusion.  I needed another spine surgery.  I needed two more abdominal surgeries.  The details are etched in my head because I try to manage this, but I can't.  I'm clearly failing.  I don't want to do this anymore.  Any of it.

I am just praying today.  I can only look to God's faithfulness over and over again and know what He has asked us to do will somehow be possible through His provision day by day.  We haven't forgotten about all the lessons in manna living.  The golden thread running through our messy story is the great love carrying us.  I know for sure He hasn't brought us this far to abandon us. We need wisdom to know how to move forward.  Won't you lift us up?  Please pray for Dan and I not to become overwhelmed with this.  We need one another to just get through the physical issues I am facing and the strain of this is so disheartening.  We always knew we might never have credit again and forever owe money to these people and places who saved our lives, but a lawsuit is scary.

I promise to write again soon about meeting Dr. Grubb.  It was life changing and gave me a fresh perspective on not just surviving with chronic health issues but thriving.  This is not wasted time.  Our Hope remains!

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