a rock and a hard place

EB is awful. Any type, all types, all severities.

It’s awful.

It’s pain, it’s itching, it’s discomfort.

It’s anxiety, it’s fear, it’s unpredictable.

It’s never ending research, it’s trial and error, it’s learning lessons the hard way.

Today, EB has me feeling completely at a loss.

Julianne’s type of EB often does better if the wounds can be exposed to air to dry out a little.  It’s a fine balance, letting things dry to heal, and letting things stay moisturized to minimize the scarring that comes with new wounds.

We’re at a rock and a hard place right now.  If I keep the bandages off of her legs to help things dry out a little, she scratches the living daylights out of her legs.  If I wrap them every day, it takes longer for the wounds to heal.

No bandages = good.

No bandages = bad.

There is no winning.

If the choice is over-moisturizing vs scratching open new wounds, we choose the lesser of the two evils and hope and pray that one day the rock and the hard place will be crushed by a cure.

Regardless, we smile because our joy isn’t found in our circumstances, and we won’t let this knock us down.

EB isn’t the force with which to be reckoned – SHE is.





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