Killed 2 birds with ONE stone...

April 29, 2009,

Gotta say feeling quite pleased with myself that I did not HOLD a thing back...with all my "WaWa's"(ya know, my complaints about living with AMN). The Number #1 Energy Vampire just happened to be sitting in the Doctors office with me.  Dr.Clarke, and Metabolic peeps, spent 2 hours going over my wawa's, physical exam and when they thought we were done...BOOYA...Michelle, says to Joe Clarke, "could you possibly elaborate, on what UNDUE STRESS does to one with a condition like myself". He explained...I understood... Metabolic peep says "Have you thought about getting some personal therapy?" I looked at her and said..."I have been asking MY husband to get help for our family for a long time." ALL EYES TURNED TO THE ENERGY VAMPIRE. Dr. Clark asked him..."So you get it, right"...Paul said "Yes".  I hope what I have succeeded in doing today, is going to make a difference, in my life, my children's and for the future of this family's happiness...

The Awareness of ALD

Today, another beautiful spring day....my tulip bulbs have emerged...Life again, before my very eyes...

I watched Eva Lapin (link below) tell HER story of how ALD has affected her, and how it robbed her child of life, because of the misdiagnosis of ALD...I can not stress it enough....EARLY DIAGNOSES before any symptoms is KEY.  I hope that it will become a mandatory newborn test which is a simple VLCFA (very long chain fatty acid), IT HAS TO HAPPEN NOW! 

I AM trying to Twitter as many celebtwitters as possible, because this disease needs the kind of exposure that HOLLYWOOD/MEDIA can give.   Hmmm, perhaps I'll come up with my own challenge and see WHO will be the first Well known, influential, person to help save a LIFE, by bringing Adrenoleukodystrophy into the LIMELIGHT!!!

Please take a moment to listen to Eva Lapin, my heart was aching for this Mother who has helped so many, and hasn't stopped bringing awareness to Everyone.  It gives me MORE get up and go, and a HOLLA out to my cyberfriend/ald friend Kevin...You have done INCREDIBLE with your Awareness blog! Stay strong my friend.

Here is the link...http://bit.ly/rX62s

Beautiful Spring Days

My friend Jenna, has reminded me that I MUST update my blog! Here it goes...The sun is beaming...the snow is melting...SPRING!  I love everything about this season.  5 years ago...Zach had just got home from the hospital, with his "new seeds of life" and we ventured out on my scooter finding signs of Spring everyday! 

My goal at present, is to keep spreading and raising awareness for ALD. Checkout my links for more info and links... Makes me feel grateful for everything that I DO have.

Signing off for now...MamaShell :*