Monthly Archives: October 2013

Past ready

Time is such a funny concept for me.  I have been counting days for maybe the past week.  My mind will think – okay, 4 nights to go…what was I doing 4 nights ago?  Does it seem like a long … Continue reading

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Countdown

T-minus one week.  Again, a lot of information gleaned in the past 8 days and all of it moved us into the direction of final decisions/actions.  Last Wednesday I saw the surgeon in clinic.  After being so nervous about the final … Continue reading

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Trusting me

The range of emotions this week has been high and low.  I am clearly out of the denial phase.  This is no longer just something I am talking about, the latest news, the hot topic.  This is real.  And my … Continue reading

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The Spoon Theory

A woman with Lupus, Christine Miserandino (www.butyoudontlooksick.com), created the spoon theory while out to dinner with her best friend.  It is the best analogy I’ve heard about managing the demands of daily living for those with chronic illnesses.  My TA … Continue reading

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A few details

Seriously, you guys really know how to lay it on me!  I cannot thank you enough for the sweet words, thoughts, and encouragement that have covered me over the past 24 hours.   I feel it.  I know it is there, … Continue reading

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Don the armor

I’m not sure if starting this blog will be helpful.  Will it be helpful to me, helpful to others, or just something for someone to read because they kind of know me or have heard about my rare disease?   I … Continue reading

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