The countdown is on...

Getting nervous...

I'm leaving soon for my "big appointment".  The one everyone is banking on.  Pretty much the "last hope".  Everyone else is anxious, nervous, excited, so on the outside I remain level headed and strong.  But inside I'm terrified.  What if they don't find anything?  Or worse...  What if they do?  My mortality is becoming more and more of a reality...

It's hard for so many people to understand.  Since I've last written, I've been getting stronger and feeling better.  They see the healthy, upbeat, positive me.  They forget I'm sick, think nothing is wrong.  And that's good.  Most of the time.  But sometimes the expectations are a bit much.  And the support isn't there.  It's like being a widow.  Everyone is there for the funeral but soon disappears shortly thereafter.  There are still bad days.  And there is the fear that since I feel great, something awful is hiding right around the corner.  Why?  Because that is how it happens. every. single. time.  And I feel way too good too keep going at this pace.  Sad, I know, but it's the honest truth.

I remember when I first started learning about auto-immune disease.  I thought, "What's the big deal?"  But I soon learned.  I watched, observed, absorbed.  The hurt, the pain, the suffering.  Diseases that are misunderstood, misdiagnosed, and most times judged harshly.  An awful way to live, a cruel way to die.  Some quicker than others. Their very own bodies attacking them, their sad eyes full of pain and sorrow as they would lay in horrific pain on the stretcher, wishing for someone to not only make them better, but to hear their pain.  To believe them.

And here I am.  Yet another statistic of whatever is causing millions of us to have these disorders.  I don't know whether I am fortunate or unfortunate, as mine seems to be progressing rather quickly.  One day I am fine, the next some organ is freaking out, shutting down, reminding me that something is wrong.  Yet know one can figure it out, slow it down, or stop it.

So yeah, I'm a bit nervous about this appointment.  It's pretty much my last hope.  No one else knows what it is or how to stop it.  There's no denying the events that happen; the heart and kidney problems, loss of vision, fainting...  you name it.  Yet the can't seem to put a name on it.  Which means no treatment.  And thus, the vicious cycle continues.

For now we count the good days.  We say what needs to be said, what we want to say.  We enjoy time together and have fun.  And count the moments until the appointment.