I'll start with the good: the boys are fantastic, thriving at school and growing like weeds. For that we're thankful.

I unfortunately am not.

This spring I was diagnosed with Autoimmune Autonomic Ganglionopathy, an extremely rare autoimmune disease that attacks the autonomic nerves (the nerves that control the heart, breathing, gut, eyes, etc). Treatment worked initially but I relapsed in August and have been inpatient for a week now trying to get things under control.
High dose steroids do not seem to be working and the options get progressively crummier, so we're sorting out just what kind of 'crummy' we're willing to run with at this point.

I wish I had something profound and meaningful to say but right now I'm pissed off, starving, frustrated with my body, and missing my family.

I know I'll make peace with this and find a new happy medium but right now the 'magic train ride' that one gets whisked off on when they are inpatient (that one your expected to bump along quietly on, agreeing with and complying with every doc/nurse that talks to you, lest you be labled 'difficult') has taken it's toll and if I didn't know I would simply be back here in 2 days worse than when I came in, I'd likely march out the door myself.

Hopefully tomorrow will find me in a more positive headspace. For now I'm gonna put my headphones on, watch more food network and mope for a while.



  1. Sending love and peace. Nena


  2. Keely, our thoughts and prayers are with you and hope that you feel better soon and back with your family!

    Laura and Tony


  3. Keely, many, many, many HUGS! I will keep you & your family in my thoughts & prayers for peace & healing.



  4. Keely,

    I totally haven't kept up lately. Praying that you are out of the hospital soon...and feeling much better. HUGE HUGE HUGS!


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