Friday, June 15, 2012

warning... this is going to ramble on & on

Sorry I haven't posted in awhile. I've been busy. Knowing that I have 2 kids you might think "Oh, school's out; of course she's busy." But you'd be wrong. :)  The boys are actually with their Mom until after 4th of July (I think. As far as I know. Great stepmom, aren't I?).

No, actually I've been busy with some NF2 stuff. My hubby and I traveled to New Orleans, LA for CTF's (Children's Tumor Foundation) annual NF Forum. It was a great trip! I actually knew most of what they talked about already but during the sessions focused specifically on NF2 I heard a lot about where our treatments are headed. With NF2 there is no known cure and the treatment options in the past were: watch and wait, surgery, or radiation, such as Gamma Knife (which I've had done twice). But that last option is turning out to be not such a great idea for us NF2ers, so strike that. (Well, that's just great! Did I mention I had it done twice?!) Now we are moving into an amazing new(ish) chapter in NF research and finding a lot of new drugs and drug combos that can help to stabilize and possibly even shrink all the different kinds of tumors (there are a lot) we face before surgery is needed. Can you give me a Hallelujah?! The next 5-10 years are going to be a storm of breakthroughs in how to treat this condition. I firmly believe this. Can I make it 10 more years? Yes, I can! (Just got to stay away from buses. People are always getting hit by buses when they think something else is going to kill them first.)
We also did a whirlwind tour while we were there. I've lived in New Orleans but I was young so I barely remember it, except Mardi Gras. You can't forget Mardi Gras. (And falling into a swamp. You definitely can't forget that.)  We did the Riverwalk, French Quarter, Bourbon Street thing, all in about half a day. By the time we got home Sunday night I could barely walk anymore. Like I posted to my FB family: "Did we have fun, you ask? Well my legs are burning, my feet are swollen, my ankles have stopped bending. Oh and I have a concussion. It was AWESOME!"*
Before I forget. If you ever find yourself in New Orleans, you HAVE to eat at Red Fish Grill. And you HAVE to order the Chocolate Bread Pudding for dessert; it is SO GOOD. Also, you must find Pat O'Briens and have a Hurricane. But I'm not responsible for the consequences.

That's not all that's been going on. I've also started my 2nd yoga class. (I told you about the first, right?) This is a Hatha style yoga (vs. the Kundalini class I'm already taking). And holy shit! I think I lost 5 lbs in sweat and snot during this class! (No idea why yoga makes my sinuses run but I have to keep a box of tissues next to me every time.) I'm really hoping that by practicing these two styles of yoga I will develop more core strength and improve my balance, plus feel more comfortable getting around on my own (no cane, no walker, no hubby to lean on), and also, to lose some extra weight (ok, a lot of extra weight) that I've been carrying around since I was.... 10. (Gulp! It sure sneaks up on you!) I take each class once a week but I'm hoping that as I learn the moves and become better at them (no falls!) I can do them more often at home, on my own.

AND... I'm planning a visit with my M&Ms in Tenn. next month for a girl's week; well, 4 days. We are going to do the touristy thing in Gatlinburg and Pigeon Forge. I'm driving from St. Louis, so send me strength (and snacks for the trip!), please. They also have NF2 and hear with the help of ABIs (Google it), while I'm completely deaf. This is going to be fun! :) I foresee lots and lots of writing. I should stock up on pens and notebooks.
Then, in August, we are doing a family vacay. First time since... ever. So we are aiming high. Five days in St. Thomas. Yes, we know it's hurricane season. That's what trip insurance is for. Found a great all inclusive deal through CostCo Travel. Now I just need to join CostCo. Can't. Freakin. Wait.
Two days after we get back school starts. Hopefully, sometime in there the boys and I can hit the pool (since I DID buy us passes) and do other fun summer stuff. I think I need to take the next 2 weeks to relax and get myself ready for a jam-packed July and August! This is going to be SWEET!

*Yes, I really did get a concussion. I think. I didn't go to the doctor or anything. But I had a huge lump on my forehead with some tenderness and bruising. Good enough for me: concussion. All the taxis down there are SUVs. I have a weak muscle in my thigh that makes getting into a high vehicle almost impossible. It rained Saturday morning and, when I was climbing into the front seat of said impossibly high taxi, my foot slipped (because everything was wet. from the rain.) and I fell forward, stopping myself from falling out of the taxi with my head. Meeting the dashboard. Awesome.

1 comment:

  1. P.S. I'm going to post pictures from the trip. As soon as I figure out how to get them from my camera to my computer.