Urology Man

I called my Urology Man's office yesterday and they overbooked the schedule to get me in today due to the issue.

Long story short, the appointment was typical. Another day, another prescription, another test at the hospital. I can't say I'm surprised, unfortunately. I'll fill the script tomorrow while S and J are here. Uro Man warned me it lowers blood pressure so I don't want to be on my own, given my BP crashes anyway.

Things just basically suck. There was however one neat thing about the appointment. Urology Man (who knows more about Ehlers-Danlos than every doctor I have ever seen with the exception of TCI/NY) had trailing him a young woman who was a family practice medical student.

Uro Man, while documenting my situation on his laptop (and there was plenty of it given it's been 2 years since he did my bladder surgery), asked me to explain to the student about Chiari and EDS, the EDS especially. He told me, "I learned about it in medical school in New York but you have taught me the most."

I am really touched by that.

So, the two of us had a talk, and I am really grateful to have had the opportunity (though I wish I didn't need to have the unexpected appointment in the first place). She listened intently about the CM, EDS, and the connection between the two, etc.

The last thing I told her was I hope she will never have an EDS patient because, well, we're a mess.

Today's appt w/the Pain God

I saw my Pain Man today. My Pain God, aka PMP/Pain Management Physician, is someone I am very thankful for. And no it's not because he tries to help my pain levels down just enough where I don't consider offing myself. It's because of his candor, complete honesty, and willingness to admit when things are over his head. He sticks with me through it all. He is the one who told me a few weeks ago about having "Weird-ass diseases," and that "your situation is what we call in medical terms, a bitch."

The truth is hard, but it is better than these ignorant doctors who tell patients they'll be fine if they just do something nice for themselves, like dying their hair.

We did our meds discussion, as usual. I'm keeping the Dilaudid where it's at, taking it at the same time as the Zanaflex. Wean off the anti-seizure med, slowly of course, so I don't actually cause them.

Then he asked how I was handling all of this, as well as DH. He wondered if we'd like to see a counselor trained in our situation. I politely denied.

He wished me well for the surgery being done in less a than a month but at the same time he doesn't have high hopes. He didn't have a specific reason other than the fact so much else has gone wrong. Everything that can, has.

So, that's why it was a little hard. I didn't ever want to have this talk with him, but at the same time I'm glad I've got a local doctor pulling for me here, and not looking at me like a bug like all the rest in this town.