Where I’ve been, and where I’m going

Hello everyone.  Welcome to 2014.  A lot has been happening here at the cafe.  The irony is, I started this blog to chronicle my journey through seminary, but as with so many things in life the journey had some unexpected twists that I was having a hard time articulating so I have been blog silent.  Now that the cloud has lifted a bit let me give you the cliff-notes version of what I have been up to for the last 12 months or so.

In December of 2012, I saw a geneticist who specializes in connective tissue disorders.  The purpose was to confirm what one of my doctors and I were already pretty sure of.  Yep, it’s official.  I have Ehlers-Danlos Syndrome (EDS).  This means that the “recipe” my body uses to make collagen is wrong.  The best way I know to describe it is to think of a piece of elastic.  If you pull it, it stretches and then goes back to its original shape when you stop pulling.  But a bad piece of elastic, when you pull it, will crackle, possibly break, or else it will stay stretched out when you let go rather than contracting.  Collagen is like that.  Because it is found everywhere in the body, the entire body is affected.  So, my skin is unusually stretchy and sensitive.  My muscles and tendons are overstretched and weak, causing virtually every joint in my body to slide around too much and sometimes completely dislocate.  As a result I have a lot of joint and muscle pain.  My bones are too porous (osteoporosis).  My digestive system is sluggish and my intestines too stretchy.  My blood vessels are too stretchy so when I stand up for very long blood collects lower in my body.  Instead of accelerating a little bit like its supposed to, my heart rate tanks and I get lightheaded.  

It took about 2 years from the time I first heard of EDS to official diagnosis.   By the time I got to diagnosis, my entire being–body, mind, spirit, emotions–were exhausted.   EDS can be very nasty.   This is scary stuff.  Having an expert in the field go on record saying I have it made it real.  All the fear I had been desperately trying to keep at bay came crashing to front and center.  I freaked.  

The day after diagnosis, I went to my psychiatrist (Depression, anxiety, and chronic illness, especially when chronic pain is involved, often go hand in hand) and he promptly suggested I be admitted to the hospital.  He wanted to adjust my depression medication but because I had a history of reacting badly to medication changes thought it would be safer to do it under 24/7 supervision.  So I spent 4 days inpatient followed by 4 weeks in a half-day mental health program.  From there I continued the hard work of grieving the life I thought I had and figuring out how to go forward.

I am very fortunate to have a great support system.  I am part of a great church with treasured friends who are not afraid to climb into the mess with me.  Friends brought meals, cleaned my house, called and emailed and texted me.  I have foggy memories of sitting in my small group meeting, giving myself silent pep talks to get through it, trying desperately to focus on what the other people were saying.  It was awful.  But they hung in there with me as I crawled my way through recovery.  I switched to a different psychiatrist who did some additional testing and got me on some better medication.  

In September I took my last Seminary class, the Pentateuch.  I will have plenty to say about that in future posts.  But I will graduate in June.  I feel it is a huge victory.  I could not have done it without God’s help.  It feels really good to say that word, graduation.  

Having finished school now, I wish I had some exciting  “burning bush” story of calling to tell you.  I may never have one.  However, I am grateful to be in a place now where I am engaged with the world around me and open to opportunities to serve in small ways.  I have made some wonderful friends through an EDS support group, and have many opportunities to extend God’s love as a result.  I have participated in a couple activities at my church’s disability ministry and have provided some input for making the building and its activities more accessible to the disabled.  They are small steps but I believe God is present in them.  And  I pray they make Him smile.

Diana

1 Comment

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One response to “Where I’ve been, and where I’m going

  1. Congratulations on completing your seminary courses–what a huge accomplishment! Thank you for the way you reflect God’s faithfulness during this difficult season, and may you continue to shine for him.

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