lack of understanding about my life with this dis-ease

Sorry but I have to vent.  It hurts when those who say they love you don’t understand what you go through everyday because they do not live with you, near you or visit you, and they do not call you but they feel that you should be able to attend events like everyone else.  I don’t want to beg for understanding because that is not me.  It has been 9 years of suffering with this dis-ease and even though society does not get that everyday is a challenge for me just to exist, I at least expected those who know me personally to understand.    This event is out of state which requires me a long drive and with someone on oxygen support and living with debilitating pain, this is not an easy task.  This arrogance for someone who is supposed to be my neice, wow… Anger, frustration and disappointment is all of the emotions that are going through my spirit right now.  I don’t need this!  I am trying to live each day for my husband and three children.  Right now, my youngest really depends on her mom.  It hurts that I cannot be the mom that she needs, but I am here right? I thank God for each day that he gives me.  I have tried to exclude all negative factors out of my life, but my extended family on both my side and my husbands are giving us grief and much unnecessary stress.  They should be our biggest support systems, but sometimes I think it is more about self then love.  We often feel alone.  My biggest fear is that when God calls me home, my family will suffer alone.  My husband already has shut down somewhat and it scares me that there is no one for him to talk to.  No one wants to hear it.  The thing that helps me is my Sarcoidosis support groups listed in my links.  They have become my extended family of sorts.

Bernie Mac Tribute

Losing a Snowflake

I am in a very solemn mood today because I have just learned that a Sarcoid Buddy of mine has lost her battle with this dis-ease yesterday.  I am getting madder and madder at the fact that all of the tv stations and radio personalities that I have contacted have not taken me seriously.  This disease needs more awareness just like cancer, lupus, arthritis, MS et. al  What do we have to do to gain the attention that we really need.  With this attention comes more research, more compassion and more overall awareness of this debilitating silent but deadly killer.  More and more of my friends are dying and still nothing is being done about it. 
 
Rest in peace Sue Beard