Showing posts with label Rare Disease Day 2011. Show all posts
Showing posts with label Rare Disease Day 2011. Show all posts

Tuesday, March 15, 2011

Yawn...


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.

Ahem.

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.


Yes???

Monday, February 28, 2011

Rare Disease Day 2011!



Okay. It sounds really wrong to say Happy Rare Disease Day, but I'm saying it anyway. For those of us dealing with these rare medical disorders it's a way to draw attention to our challenges. And that's huge because most of time, we get nada. Zilch. Squat. So it's something, and I'm saying Happy Rare Disease Day, dammnit.

HAPPY RARE DISEASE DAY!

Learn more, share, go here.