Friday, October 09, 2009


I am feeling incredibly discouraged at the moment..and it's not a diabetes thing. It's
a Bartter's (Syndrome) thing. When you've got any disease(double so on the rare ones), you've got to be your own best advocate for your health.

But I'm stuck. Stuck in the 20th century, stuck in the concept of how said disease used to be treated, stuck in a doctor's office where new and novel is not something they want to try. I don't blame them, off label use of something is hardly something most doctors want to do but this is something I want to try. More then that, this is something I need.

Stuck, in a rut. Stuck, in an endless,expensive, time consuming, rut. The need for magnesium infusions is not going away.4 hours a week..thousands of dollars a month. It's like being on life support.(if we don't go bankrupt first) I've read medical journals, I've heard its possible to administer subcutaneously(much like insulin), but when I asked about it(an endocrinologist and a nephrologist) I get a "no, not possible." It must be, I'd sooner take the word of JAMA, they're up on the latest research. And I've also heard it's possible to administer as a shot, though no one wants to talk about that either. Although I'd much rather use a pump to administer it..double pumping would not be a problem. (have done it before)

I need to get unstuck, I need to go somewhere where they're actually interested in rescuing me from this pithole of a disease. More then anything, it's the money-if they were happily giving away infusions with no effect on the bank account whatsoever, I could deal with it. And it apparently being forever, next of all. Something else has to work, must work, there is another solution to this. A major teaching hospital, is my best bet.I still may stay stuck,but it's my only shot.


phonelady said...

i love this . Thanks for sharing and posting this .

Scott K. Johnson said...

Good luck Heidi. Being stuck stinks. Keep pushing on, you'll get through it.