Nightmare on Wheels

I’ve started a new system.  I want Pam here when I shower, so instead of changing the patch when I shower (which used to be after she left) I’m showering earlier and will change the patch later.  I’m just too wobbly these days and one false move could mean a fall.  So many changes all the time.  And I’m literally exhausted, so that doesn’t help with my balance.  I’m just not sleeping.

My pain nurse said she wants me functional but I don’t see that happening.  I went out twice this week and was in so much pain when I got home nothing helped.  I’m sure the exhaustion is a combination for these drugs and not sleeping. 

It’s amazing to me that someone can have ONE tumor that ends up killing them, but I have hundreds and they won’t let me go.  I know mine aren’t cancerous…but non-cancerous tumors can kill too.  This disorder is a mysterious nightmare on wheels.  And they can turn cancerous.  I just haven’t got the energy to put myself through any more MRI’s.  I’m not even sure if I want to have another mammogram.  And I’ve had breast cancer.  I just don’t care. Period.

Millions, no, billions of dollars are spent on “finding the cure” for this or that disease….but how much is really being spent to do that, and how much is spent on administrative costs?  I realize people have to be paid, but when was the last time you heard of a disease being cured?  I know I won’t see it in my lifetime, but for the sake of the children with this demonic disorder, I hope the end is in sight.

And as bad as it is for me, seeing children suffer from the slings and arrows of NF break me into little pieces.  Yes, I’ve had a lot of losses in my life over the last 14 years or so.  But I had some good years too.  And for that, I am grateful