I’m Off To See The Wizard

July 8, 2008 at 10:40 am (Uncategorized)

Thank you for the many kind comments and e-mails to my previous, bleak posting.  As those of us with on-going illnesses know all too well, sometimes the street lights go out in chronic town.  And the house lights.  And the night lights.  I fumble in the darkness, peer into blackness and see strange and terrifying shapes.  Although I believe it is essential to look at the darkness, I can look too closely.  And this is just as devastating as if I went outside and stared at the sun.  You readers, along with all you people in my life who prop me up and listen to me cry on the phone or watch me cry into my pillow, catch me before I’ve gazed down into the inky abyss for too many days and lost my ability to truly see.

In a few hours, I will arrive in Cincinnati, Ohio, assuming all goes well with my airplanes.  I have lost my connection with the doctor I saw in Philadelphia.  She had a new baby, and was working full-time outside the medical center where I saw her for the sarcoidosis clinic.  At first I felt abandoned.  Now, with the help of those who pull me back from the darkness, I’ve realized that in this loss, there is opportunity.  I am going to meet with a doctor renowned for his work in sarcoidosis.  While my Philly doctor was more conservative (prednisone, prednisone, and would you like some more prednisone with that prednisone?), this guy does more research on new therapies for sarcoidosis—especially for cases like mine, where the disease has affected multiple organs and isn’t responding well to conventional treatments.

I don’t know what I will think of him.  I don’t know if he can offer me anything.  I feel a little like Dorothy on a pilgrimage to find the Great and Terrible Wizard of Oz.  But, like her, I figure it’s worth following this path to see him.  After all, she made it home, safe and sound, even though he turned out to be a humbug.

So, keep your fingers crossed for me.  That I have safe travels, that this new doctor has new ideas, and that these new ideas work.  Or, at the very least, that I find my way home and see the light shining all around me.


  1. Mike Norwine said,

    Please keep me informed on how your possible new treatment is going. My wife has sarcoidosis which currently is only affecting her lymph nodes & skin. So far no other organs but maybe bones because now she has arthritic signs . Thanks for your help


  2. Barb said,

    Hey you…I started this morning thinking of you on the journey and saying prayers for safe easy germ free travel. So I also hope the doc has wide listening skills and likes detective work. I hope you will have assertive patient skills. I hope you have fun too. Mostly though, I REALLY hope your red shoes are way more comfy than Dorothy’s.. red tennies or sandals maybe?

    And when you do come home remember..lots of us are going to “leave the Light on for You!!”.

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