Monday, March 28, 2011

Special Event

Check it out:

The Fifth Annual Cavernoma Alliance UK Forum

Saturday, June 4th from 9 am to 5 pm

For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too.

Friday, March 25, 2011

Fundraiser Event!


When: Saturday, April 2nd

Where: Blanchee Boutique
           89 Main St
           East Rockaway, NY 11518

Spend the afternoon shopping at this dress and bridal shop, all while raising money for Angioma Alliance.

Go, go, go!!!

Thursday, March 24, 2011

Special Event

The First Young Persons' Caverhub-Cavernoma Alliance UK

When: Saturday, April 9th  from 10 am to 12 pm (and as this is my birthday and there's lunch at the Rainforest Cafe chased by a trip to the London Aquarium you just know it's going to be a rockin' good time.)

For more info go to Cavernoma Alliance UK here. Or here.

Find'em here on Facebook too. 

Tuesday, March 22, 2011

Trust Me...

Doctors mess up.

They're not gods. They're not infallible. They're not perfect.

They're just people.

Yes, they do a great, almost miraculous, job most of the time. And we are incredibly grateful for them and appreciate those who go above and beyond. But it's that rare occasion where they screw up that you have to be on guard can't just blindly trust in anything or anyone. Because it does happen.

I don't like saying this. Doctors have saved my children's lives. They pieced me back together after I broke my back. I've put all my faith in several, and will continue to, but we've been let down as well. Badly. By "top" physicians. By the "best in their field" doctors.

So it makes me cringe when someone tells me a doctor has told them something and they've just accepted it. A doctor they don't know everything they possible can about...on a diagnosis or treatment or opinion that they don't follow up on or research...that they don't get a second, third, or even fiftieth opinion on when their gut is telling them otherwise. And this happens a lot--people just accepting what one doctor tells them.

They hand over all their control, all their power, and just react and accept.

And I want to scream, Noooooo!!!!

I know I sound righteous here. I know I sound like I'm perched on a soapbox and I'm ranting (because, um, I am), and really, I'll fully admit I'm trying to cut back on both processed sugar and caffeine products as it's getting a bit out of control--my obsessions--so perhaps this wasn't the best time to post on this subject.

But it happened to us. More than once. The most devastating was when BBB was misdiagnosed, and damage was done. Irreparable damage.   Had I questioned...oh, hell, had I even asked for the wouldn't have happened. I was young and stupid and scared, and I didn't, and I learned the hard way at the expense of my children's health.

I'll never make that mistake again, though. Every medical test, every written note--everything I see and question. And our doctors are beyond cool with it, because they rock, and they understand and respect us.

So what I want to say is be strong and brave. Your medical records are yours. Ask for them. Read them. If you don't understand them, have the doctors explain them. That's their job and they WANT to help you.

You have the right to question your doctors, to research them and anything they say. You have the right to get as many opinions as you can. And if you don't like a doctor, or they don't respect you or treat you well, fire them. You can do that. I'll even go so far to say you should do that.

It doesn't make you a bad patient or ungrateful. All it means is you're taking control, being proactive, and honoring yourself and your doctor. It's one of the most wonderful and empowering things you can do. And forgive my rant, please, because I just don't want anyone else to have to learn this the hard way like I did.

The Web-Savvy Patient

Fine. If I'm gonna rant I should at least offer something useful, eh?

The  Web-Savvy Patient: An Insider's Guide to  Navigating the Internet  When Facing Medical Crisis
Check out The Web Savvy Patient by Andrew Schorr.  It's a great read. Only bummer? It's not currently avail on Kindle. *sigh*

*Thx to PattiG for recommending it!

Friday, March 18, 2011

The Long Road Back

Great article on about Red Sox prospect Ryan Westmoreland's recovery from brain surgery here.

* Thanks to Allison for sharing the link on Facebook.

Tuesday, March 15, 2011


So, that's it.

As of yesterday, we are now moved in. The last box has been dragged over. The floors were mopped. The keys turned over.

Our internet is working too. Let me digress to say this is huge as it wasn't. And it was supposed to be and it drove me to distraction because it's sort of hard to blog  and email and have a life any more WITHOUT WORKING INTERNET, DAMN YOU, COMCAST.


But anyway, we're here. We're in, we have the interwebs, we all survived, and I celebrated this morning with a donut and a huge cup of coffee in my new home. That of course is still missing some flooring and only has partially installed appliances and the downstairs toilet runs hot water only which is rather disconcerting. But it's fine. It's ours now.

Of course the respite is brief. BBB seems to be having problems again. The headaches, the seizures, the hearing loss, the vision blurring, all back again. MRI is scheduled for Sat. EEG for the Friday after. We wait, breath held, hoping the bleeding stops and recedes, taking the issues they cause with it as it always has before. We refuse to think it won't.

Because it will.

It will.

Meanwhile, I hope you all celebrated Rare Disease Day

and voted (for PattiG, not that we're trying to sway your vote or anything, but really you should have voted for her) in the 2011 Neuro Film Fest.


Wednesday, March 9, 2011

I have some explaining to do...

I didn't disappear. I swear.

It's worse. Much worse.

We finally closed on our dream house.  Only...

Our dream house? It's a foreclosure nightmare that was in a totally unlivable condition. So we have spent every second since renovating and spending and crying. And then crying a lot more.

I think I've sprained my tush too. Long story. But OW. Those laminates floors should be made illegal.

But it's almost over. Or, well, the moving-in part is almost over. The renovating won't ever end, I suspect. But I will be back in a few days. I swear. I promise. Oh, man, I hope. Besides.  There's so much to tell you!