Please note that the comment section is "no reply" which means I can't reach you unless you leave a way for me to do that. My email address is at the top if you wish to contact me. Also, please, no soliciting. Thank you.

Thursday, March 27, 2014


I’ve been doing a lot more spiritual work lately, trying to calm my mind.  Things just keep happening that test my resolve.  Being in pain is not for whimps.  And someone, another NF challenged person, sent me this:

Now grant it, healthy people don’t normally tell everyone if they have a urinary tract infection.  Some of us play our health cards close to our chests; others tell everyone they meet on the street if they have a rash somewhere on their body.

The point is, we get so exhausted mentally, physically, emotionally, spiritually and everthing else that is us that we don’t have the energy to explain much of what our struggles are with NF, and sometimes leave out important clues to people who need to know, like our doctors.  I sometimes get angry when a doctor says to me “You seem to be doing well.”    I want to scream but the truth is I’ve left out details that matter.  And they don’t want to appear negative, I get that. 

But guess what?  I know I’m not well.  Putting on a smiley face isn’t going to convince me I’m not.  Sometimes, just saying “I get it. I’m sorry. I wish I could do something” as a way of acknowledging the truth, would be nice.

I’ve been working on turning around my thinking about what G-d wants from me, what I should be praying for, and finding ways to serve G-d in spite of my condition.  I’ve been reading the Book of Psalms lately and having meetings with a Rabbi my brother introduced me to.  He’s Orthodox, but also a Cabbalist, which is an odd mix.  But he and his EIGHT brothers are all Rabbis all over the world.  He and one of his brothers happen to live here, but he is sought out all over the world for his knowledge of the Kabbalah.   Very interesting conversations.

The struggles with the pain continue.  And someone who got in touch with me via this blog just dropped off the face of the earth.   We only wrote a few times, but his last email to me was his last.  I had responded to a request he made about where to email him and he never got back to me.  He was very unwell with NF related issues as well as others.  Jaime, if you read this, I’m still praying for you.  If you’ve chosen not to continue our correspondence, I understand.  If you are too ill to write, I pray for you to get better and if you passed, G- d rest your beautiful soul.

1 comment:

  1. Dear Sherri,

    This has to be one of your most beautiful posts ever. Beautiful may seem like an odd verb to use to describe such a heartfelt, gut-wrenching and soul searching blog, but I know that you understand what I mean. I, too, pray that your friend, Jaime, is well and just tired. I know that Ashley has to protect herself most of the time from any negative or even positive news, whether it be from the media, or friends and family. It is her way of survival, and that is why, my friend, I try to protect you too. I know that in my heart, God is loving you so deeply, and just wanting you to turn his way so that he can help you. One thing that I know for sure is that we serve the same God, the God of love, of peace. All my love to you and Vinnie!


Click on "Older Posts" to read more!