Out of the Shadows

SPOKANE NF SYMPOSIUM

I wasn't sure what to expect when I got the letter about a gathering of NF families.   Part of me was afraid to meet others with this disease.  I don't really know what I was afraid of, but as the date approach, I began to feel like perhaps I shouldn't go.

My family cleared the calendar and I decided that me and Rachel would attend the meeting.  I was one of the first to arrive, and Rachel and I ducked behind the corner, so that she could finish her breakfast.

We were soon met by a wonderful woman, Cheri Stewart who  invited us into the room, and offered a bunch of "freebies".   I was excited to see so much information!  Rachel and I grabbed up some stuff and went to sit down.

I immediately noticed one gentleman who was affected by NF...I wasn't sure how to introduce myself..."Hi, I'm Kristi, I have NF too, nice to meet you..."?  That sound a bit weird to me, so instead, I smiled and half waved.  That seems weird too now that I look back on it.

A few other families trickled in, while Dr. Judith Martin began speaking.  Rachel met her a couple months ago at her clinic and Dr. Martin 'officially' gave the NF diagnoses.  Dr. Martin was pleasant and very likable.  I was quite impressed and I will forget ALL about her using the word "ass-hole" to describe the way some doctors can be.  ( my daughter who is SIX, looked over at me and said "Mommy she said a naughty word")   I will also try to forget that she compared having NF to living with freckles, or a bump on the nose.   I supposed it is truly difficult for someone without NF to know what it is like.  Unless you walk a mile in my shoes, you won't get it.   I'd like Dr. Martin to live life as  Reggi Bibbs for a day, then see what she has to say.

I had asked a few questions .... which I did not get very clear answers, but, she did try.   I asked about the type of mass Rachel has, Gleevac, and Vitamin D ....She doesn't seem to feel NFers require yearly MRI's....which I totally disagree with.  If WE didn't have a yearly MRI....we wouldn't have found out Rachel had something going on in her brain.....To her, I guess unless something is hurting....there is no need for medical intervention....Hmm, what about PREvention?  What about things like mamagrams?  A woman with breast cancer, doesn't usually know they have it, unless they get checked out.

After the key note...we had a meet and greet.  I went over to a very nice couple and introduced myself.  They have a little girl, who Rachel just loved!  We talked about our stories of NF, and seemed to have the same beliefs as far as bringing children into the world.  

We shared some pizza for lunch and visited the rest of the time.   I met a few very nice people, and got their email addresses.  I know how it is, to be living with a disease, no one knows about, or understands....So any way we can stay in contact, I am all for!

I am glad we went to the symposium....I am glad to know that I am not alone.  It's a very big world, and NF makes it feel even bigger.    Maybe, one by one....we can make it a little smaller and make a difference.