I think, for me, one of the greatest frustrations is the variety of faces and stories you encounter in this angioma-dx'd world.
Young, old. Those who love those affected by angiomas, those who have angiomas. One angioma, more than they can count. Operable, not operable, partially operable, and the every joyful sort-of operable. No symptoms, a few deficits, to this really sucks. And I mean really sucks.
No one is quite in your situation. No one quite has the same issues.
It's frustrating.
Right now my world is all about transitions. And that's frustrating too.
As I type, my kitchen is what they fondly call a gut job that has, indeed, been completely gutted. Ditto the bathroom. Transition. Lots of hair being ripped out, and, yes, most of it is mine.
As I type, spring is considering an appearance. Summer showed up last week with her eighty degree weather, but spring, she's being elusive today. Some minds need to made up. Winter, spring, or summer, which is it going to be already? Transition. You're driving me insane.
As I type, I'm waiting on the local area service agency to call. Bob's Big Brother is turning 21 this fall. For children with disabilities this is a critical period. He's going to be transitioning from high school to adult services.
Of course, all this requires funding and knowledge of what services he needs and will qualify for, and lots and lots of meetings and paperwork. And phone calls. Lots of phone calls. I'm also going to add lots of phone calls that don't begin when they're supposed to because no one is ever on time for these things.
And while all this is going on, we're shuttling BBB back and forth to Children's Hospital. Issues, he's having them, and once again he's wired for an EEG and has gone into the MRI tube and we wait for answers.
But then that's the part of angiomas that isn't that discussed a lot for those of us who love those affected. The medical paperwork, applying for guardianship and SSI, and services and dealing with agencies, all while dealing with the health issues that just won't stop.
And of course the part about letting your children grow up and become independent adults. Or, well, as independent as they can be. It's hard to find others who are going through the same exact thing.
So. Yeah. Today I'm frustrated with transitions. Doesn't mean life isn't good or it won't be less annoying tomorrow, and, sure, this is all fleeting. But it would be really nice if the sun would come out and my water worked...Just saying.
:)
