Thursday, May 5, 2016

This morning

I received an email yesterday from NIH.  They were doing some last minute gathering of information and fact finding before their big meeting this morning.  A meeting of the minds.

I'm not exactly certain who all will be attending this meeting but I know there will be hematologists, geneticists and a host of other researchers from various specialties.  They will be pouring over decades of CBC's, lab reports, bone marrow biopsies, telomere lengths, x-rays and scans from my kids.  They will be reading about how I was born with a congenital birth defect, grey hair at 24 and a scattering of other facts about me that interest them.  After all...we found our way to NIH because of me.  Because I didn't stop fighting for answers but also because the faulty genes are my doing.

It should be an exciting thought.  I should be full of gratitude that the intelligence of so many strangers care about 5 people living in the armpit of America.   There are families who would give anything to be the talk of this country's leading medical researchers with what seems to be unlimited funding.

Instead, I woke up early with a knot in my gut.  I'm tired of the hope that comes from something such as this.  Hope that they can find a treatment.  Hope that things aren't as bad as they feel.  Hope that there will be answers.  Sometimes, hope is to blame for the trough of discouragement and depression that trails after a life changing adversity.

I find myself in such a strange place.  We are trying to find our way back to the fulcrum of normal that keeps us hinged together.  Some days, I feel as though we may make it, but the very next day, we are dangling in the air on a teeter totter of sideways news.

Shelbie had her transfusion again yesterday and we got blood work back from last week.  Air exchanges are off for Shelbie's lungs and heart.  Liver enzymes continue to rise for the third month in a row.  This time, they doubled from three weeks ago.  The plasma doesn't seem to be helping much like it did when we got a big dose all at once.  It is nice that we have avoided the ER and major headaches but it's a trade off for other nagging issues that are just dull enough to be annoying.

Somehow, there needs to be a way to filter out this news so hope isn't always taking a hit.  I did tell the nurse from NIH that I was not interested in getting any information from them until further notice.  Their findings will be strictly for research purposes and to help them help others.  The news that comes in trickles in can sometimes be too much at once anymore.

This is where things stand.  I have been consumed with trying to understand the unfoldings of this year.  Many things that use to make sense to me, are tangled up in the workings and developments that make absolutely no sense.  I hope I'm getting close to figuring things out.

Yesterday, I applied for three more part time jobs...Clearly, the cost of chronic illness is rising.  Prayers that one of them or all of them work out would be awesome!


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