Saturday, July 14, 2012

Heartache . . .

It has been a very hard week.  I am lying here upstairs in my parent's bed alone.  For some reason the air in the basement was especially dank, and I knew this was last chance to sleep on this good mattress and breathe better air before they return tomorrow.  Still, I would rather sleep with a spring sticking in my back and my throat closing up near my girls and next to my Dan than on the best bed in the world.  I know making this choice may not result in good sleep at all, because I don't adjust well or quickly to new environments and spaces.  I need my thread count and the weight of my duvet and the heat radiating from Dan just inches away.  I need to hear Danica if she cries out and be there if she comes in during the night with a bad dream.  I have gone over a year now sleeping in a bunker where no light is present and no sounds from the outdoors can be heard.  I miss the simple lullabies like rain, a car passing, a plane overhead, a cricket chirping . . . all those little things that remind me the world is bigger than my life of pain, and it keeps moving with or without me participating.  I miss the way sleeping near a window makes me feel like I could escape if I needed to. 

(Excuse my quick writing break to swallow my pills.  I am glad Dan doesn't have to watch me dig through my bag of meds and open the bottles one by one and choke them down.  I can feel him praying each and every night during this routine.  I know he asks God to let me wake up.  I have about a half an hour until I get a little drowsy and out of it, so I will press on.)

In addition to my other diagnoses I have a condition called POTS which stands for postural orthostatic tachycardia syndrome.  In hindsight I have suffered symptoms of POTS for over a decade, maybe longer, because I remember episodes in college, but for a long time I was told I was having panic attacks.  When I found out there was a real name for my chest pain, shortness of breath, dizziness, fainting, brain fog and disorientation, extreme fatigue after minimal exertion and muscle pain and weakness, and it was related or linked to my EDS and also my instability, I was relieved.  Dr. Henderson began treating me while I waited on my Dr. Tinkle referral, and then I began taking a cardiac medication which truly has helped.  Over the last month I have noticed recurring and worsening symptoms.  When I saw Dr. Tinkle in June we tinkered with my medication dose in hopes I could hang out while I still wait to see the cardiac specialist in Toledo, Dr. Grubb. 

This past weekend my heart was hurting so badly, and I was so scared I knew I had to get some help.  After passing out on Monday Dan made me promise I would call my family doctor on Tuesday morning.  She told me I should go to the ER.  A friend was over with her children, and I had emailed Dan I needed to go.  He got home around lunch, and she graciously drove me.  On the way she prayed for me, and I felt a peace going in.  The ER doctor was one who travels within the health system, and praise God he knew what POTS and EDS were.  This is rare!  They took me seriously and treated me with so much respect as a patient.  My first fear was a possible blood clot in my leg.  They did an ultrasound on my leg and did not find anything.  They also did a CT of my chest.  I know they were looking for a clot that perhaps had traveled to my lungs.  The doctor did not find anything, but because I felt so bad, and we hadn't unearthed anything besides my sticky old POTS, he wanted to admit me.  I decided this wasn't wise.  He admitted the cardiologist on rounds at the hospital would probably not know much about my condition.  I agreed to see my GP on Thursday and packed up.  While sitting on the bench outside waiting for Dan and the girls to get me I read through the reports from my visit.  I was startled to see "Pectus Excavatum" followed by a Haller index.  This didn't mean much to me except I had read about Pectus in relation to Marfan syndrome, something both Danica and I share many characteristics of. 

Once I got settled in bed I googled "Pectus Excavatum" and EDS.  I learned my Haller index is extreme.  I read about how the genetics are often seen in conjunction with connective tissue disorders.  I thought about how my sisters had nicknamed me "concave" for many years in my childhood, because I do have a very visible dent in my chest.  I also thought about how weak my thoracic spine is now.  I thought about how when I lay on my left side in particular I literally feel like my right ribs are so flexible they are squeezing my insides.  I always have an increase in symptoms while lying down.  This is a double edged sword because I am so exhausted and feel like I have to rest most of the time.  In short, my chest is crushing my heart and lungs. 

My dear Dr. saw me Thursday and is trying to get me in to see a local cardiologist for an echo and pulmonary functions tests.  Dr. Tinkle said I needed to see a surgeon as soon as possible.  I have an appointment with Dr. Garcia at Cincinnati Children's on Thursday, August 2nd.  He is a general trauma surgeon who has mastered the NUSS procedure and understands EDS in relation to surgerical intervention and healing based on our special needs.  The NUSS is brutal surgery.  I still have not been able to make it through the video and watch the procedure. 

Dan and I don't know what to think or do or how to feel.  We just needed more time before another storm.  We've had no relaxation.  We watch the endless parade of beach photos from our friends pop up on facebook and all the happiness in the world for those you love cannot completely do away with the hurt we feel of missing another summer, especially an extended period of time away from this "life" and sitting in sand and sun and breathing in salt air.  It's been just over three months since my last spinal surgery which followed the decompression and fusion surgery by four months.  We haven't recovered.  We haven't healed.  We have been under so much stress trying to figure out our living situation and just getting to a place where I might be able to BREATHE even a little easier and now THIS.

I asked Dan last night how he was really feeling.  His word was simple.  "Devastated . . . I just thought God would give us a little longer.  We aren't ready yet." 

My heart hurts.  Every breath in . . . and out reminds me something is wrong. 

I can't focus on what I need or want right now.  I  must survive.  I have to get this crazy elephant off my chest, find fresh air and a window with some light and SLEEP. 

Our faith is calm and still.  I don't know what that means.  We aren't frantic.  We aren't angry.  We are just oh so tired. 

I haven't finished this story, but I am running out of words tonight.  Until next time won't you please pray for my family and I.  Please pray we will inhale and exhale the peace that passes understanding and cling to the giver of life.  Our hope remains.

1 comment:

  1. Praying for you and your family. We are an "EDS/dysautonomia" family as well, so I can relate to your pain. I love the fact that you remind us that "our hope remains." This disease feels so big sometimes, it helps to remember that our hope is in the Lord because there is nothing else.