Anyone still reading this? After my morning, I may soon revert to being only a reader. Not that I'd become an aspiring novelist or what have you, not by any means, but, DAMNIT, I had become hopeful. Grrrrrrr!
First things first, I need to hit rewind. Back to the opening door and email from Brooklyn. Yeah! With Jason's patience and computer know-how, Excel was installed on my lap-top, my meds from upstairs fetched and my cheek kissed with love and encouragement. I love that guy! Has anyone picked up on that yet?
Once all the fields were filled and the document attached, I took a deep breath in and clicked SEND. With the breath out I gave it all to God again and attempted to relax. My boys were back early from camping and I welcomed the distraction.
We watched a movie. I can't remember one characters name. Storyline? Nope. Title, even? Hmmmm? I began to blog. And blog I did. I'd still givin' it up to God, but recounting what had gone on so far couldn't hurt. As a matter of fact getting things off my chest and out of my head helped me sleep better last night.
Sure, the countless trips to the potty still remained, but at least they were accompanied with a hope they wouldn't have to last. Bye, bye neurogenic bladder and hello fancy new sexy panties!
Raring to go this morning I made a mad dash (funny, I know, right?) for my lap top. I had so wanted another early morning e-mail from Brooklyn. No dice. Maybe one of the several local inquiries I'd made would be answered by now. No again. I set out to inquire more and research more. Spread the word - eventually it would fall on the right ears.
I thought my neuro's office would never open. Nine o'clock finally came and I chickened out. I reasoned that the receptionist would need to be good and settled in before dealing with me. 9:30? Still too soon. 10:00? I dialed the number expecting (maybe even hoping) for a busy signal. Three rings and an answer.
Rarely at a loss for words, I struggled with even introducing myself. My e-mail address, which I've used alot these past few days, contains Orth, my maiden name. So this morning I was an awkward "Angela or . . Spindler." So I told her I was calling early because I needed to get a test scheduled, but while I had her, I asked if there'd been any progress on the doc's research.
She answers, "Yeh, he had me call the place that does dopplers and they ain't touchin' it. No one around here will." Now how could she know that? Did she talk to everyone around here. And what constitutes "around here?" 50 mile radius? 100? What? Silence. Then she started up as if she were the expert on the entire situation, explaining to me that Europe wasn't even testing for this anymore. Huh?
"What test do you think you need?," she finished, with emphasis on YOU! Swallowing hard I explained I'd been contacted by a doctor doing a trial in New York and that they had asked for a recent MRI or MRV. Welllllllll? She came back with, "You're gonna go to New York to get this thing done?" Well yeh! It's closer than Europe! She took my # and said she'd get back with me. It's nearing 3 now - and no calls.
Meanwhile back at the ranch, what is she talkin about? Eyeball deep in research I've found no such news. This is where my title comes in to play: "Poop on a stick!" I screamed after reading the Wall Street Journal's take on things. Finally publicity, but bad, misleading, flat out false. Grrrrrrrr! This sucks! Stats were wrong, the good doc misinterpreted.
Calm down Angela. Calm. Jason reassures me at lunch. Don't let this get to you. Fine, I'll just kick back, maybe blog a little, look around Facebook and play some Farkle. Upon checking e-mail I discovered the director of our local MS chapter had finally gotten back to me.
She basically explains this is soooo new that only the bigger neuros at the MS centers know anything about it. So new since Sept. of '09? So new some treated patients have been symptom free 2 years since their procedures? What constitutes new? And what self-respecting neuro anywhere can't be up on this? Well at least she got back with me.
More to come later. I've got a Skittles rant to go on.