Sometimes...I scare myself

It's nearly 1 o'clock in the afternoon and I have 12 hours of drafting to get done before a presentation in just 6 hours and here I am blogging!

Awesome!

Why...Why am I acting a like an attention deficit squirrel?

Because Doctors suck!!

They get me so riled up, I can't do anything but get angry!

I finally, just today, got all of our medical stuff scheduled!  All the stuff that our Seattle Doc requested back in  the Spring when we got our new Dyskeratosis Congenita diagnosis! The "critical appointments", she said, and here I've been dragging my feet all summer! There are no words to describe how hard this was to do.  We will have appointments steady from tomorrow until the middle of November!  Crap!

Bone marrow biopsies, IVIG, Lung Function tests.  A look at the scarring on Sam's Retinas and more!

I scheduled the bone marrow biopsy for Sam assuming that it would take place at the hospital like it has for the past 16 years, but it was suggested by our less than patient doctor that we just do it in the office without sedation!!!  Why?  WHY would that even be an option???  For ANYONE, let alone a 16 year old boy that was told 6 months ago that he is, in fact, without a doubt...DYING!!!  Ya, why don't we just make life as difficult as we can for him?  Shall We?

I think it's time to move on.  When a doctor stops caring about the person and more about procedures and money and saving time...I'm done.  Call me crazy and old fashioned but compassion far outweighs any knowledge a doctor may have.  I would take a compassionate, dumb doctor who is at least eager to learn than an egotistical, smart doctor any day!!! ANY DAY!

I'm so frustrated!  I can hardly contain my anger.  And that is what scares me the most...the anger I am feeling right now!  Of course, I've learned that behind all the anger I can muster up is FEAR driving it!  Every week, I try to read a little more and a little more about our situation; become educated but I have yet to come across an article that says there is hope.  Everything says, "This is a fatal disease". Sorry, if I'm being dramatic, but those aren't easy words to read when you have been fighting for your kids for so long.  It's just hard sometimes, like today.

If doctors only knew how hard it really was to raise kids that you are preparing to meet their maker not their careers, their dreams, or their anything else that normal kids get a shot at in life.  If they only knew how sad some days can be.  How hard it has been and continues to be.  If they only knew that some days, the hardest thing you have to do is make an appointment for a bone marrow biopsy.

If I could have one wish in life...it would be to educate doctors to be compassionate.



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