Friday, February 21, 2014


Hello my friends.

For all these months, the years of having a constant urge to write had left me.  I haven't really been journaling or doing any logging like I had for so long.  Lately, it's been creeping back ever so slowly. I don't have the vivacious need to write, but I do feel a tug.  I know that not doing so will leave large holes in my story that I have for so long painstakingly archived, if not well at least in almost its entirety.

While I know I have no energy to do continue that, I at least would like to tell some daily stories that might be boring but will at least share the struggles and triumph of living with this disease.  The simplest of chores gave me the inclination.  I was trying to get myself put back together after a shower.  As always, it took an unreasonably long time, at least twenty minutes, to do what would take you 2 minutes or less.  My two IV fluid lines got caught up in my bipap machine at least 4 times, tangled up in me, tangled up in everything else it could find.  I kept tripping all over my bags and the vent till I wash shaking.  I have to get dressed and hooked up to things in the proper order or I'll be all tangled yet again.  By the time I'd finished I was so frustrated I was reminded why I only go through the process of a halfhearted shower once a week, something most do once on average without even thinking about the ease of it.  It's exhausting and I have to literally rest up to get it done.  Other chores take similar buildup in stamina in order to achieve, such as dressing changes or a simple trek down my stairs to sit with my family for an hour.  At the end of that time I'm exhausted and can't wait to go lie down in the silence and solitude of my room.

I try to keep my blog posts light and positive, and I always want it to be known how truly blessed I have been in my life.  But I feel the urge to share the reality of what not only I but all who share my diagnosis's go through, for when we share I'm constantly amazed by the unity in our stories and feelings. I want to share for them as well.

Because of my limited energy, please forgive any mistsakes.


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