Wednesday, August 29, 2012

swimming with Remo

Partial promise kept; here are pictures of us swimming with Remo on our vacation in St. Thomas:


Friday, August 24, 2012

♫happy birthday to meeee...♫

Today the sister and I turn 36! I so do not feel like a 36 year old. Well, mentally. Physically I'm a little old lady. :)

19 years ago (give or take a few weeks) I was diagnosed with NF2 (neurofibromatosis type 2). I've talked about it a lot on here and there are resources on the web where you can find more information. But in 1993 the innerwebs was not a household object because computers weren't household objects. We had to rely on the little information a doctor who had never treated an NF2 patient was able to give us. And, boy, was it scary. So scary that at 17 it totally changed my view of the world and the place I had in it. I no longer felt able to plan for my future because I no longer thought I had a future. At 17 I wasn't thinking about living until I was a little old lady, sitting in my rocker on the porch, gossiping with the sister (that's my dream now, though); I was thinking about college and careers and family. The scary things the doctor told us caused me to reevaluate not only my career dreams but even the college choices I would make that year. (With all the doctor visits I had to stay close to home and Stanford was just a little far from Missouri.)

But I'm veering off course... what this post was supposed to be about is this: when I was 17 I thought I would only get maybe 10 more years to live, that NF2 or the tumors or the surgeries to control those tumors would take my life from me before I really had a chance to live it. But here I am now, NINETEEN YEARS later, still going strong. I had my career (not the one I would have chosen but I was damn good at it.), I have a family (maybe my kids are not my blood but they are MY kids.), and I have faith that in 25-30 years my sister and I will be sitting on the porch in our rockers, gossiping about the neighbors.

Wednesday, August 22, 2012

new school year

School started last Wednesday. We are all having trouble adjusting to the early morning alarm clocks. What I don't understand is this: the kids grumble and complain about getting up every morning (I sometimes have to wake K up 3 or 4 times!) and yet they also bitch and moan about bedtime. I guess I sort of get it. Kids want to stay up "late"; it's like a sign that they are more grown up. But the middle school has the earliest start time (7:20) and with two kids to get ready we have to wake up at 6:00, even if they both take their showers the night before (often only one makes it though). We have yet to get through a morning without raised voices, threats (or as I call them "promises", as in "I promise you, I will take your phone away if you don't ready for school and you know I'll do it!"), physical violance (from the kids, not me- so far) and these four words "You're late! Hurry (the fuck) up!" Yes, it's four words because I don't say "the fuck" out loud... most of the time. And we have 9 more months of this, plus Christmas Break-itis, Spring Break-itis and Summer-itis, to get through. Joy.

Last night, an hour after bedtime, S came out to say "I can't fall asleep!" (in a very pissed off voice like it was possibly our fault somehow). So, I knew I was in for a real treat this morning. And boy, was it a show. He tried to wear a shirt he has already worn twice (I'm pretty sure he hasn't done laundry in about 2 weeks). It's only the 6th day of school. I'm flattered he likes a shirt I bought for him so much but every other day? Really? After changing he actually threw himself to the floor and refused to get up until the afore-mentioned phone promise. As he started to wake up, his mood improved, though he didn't stop trying to weedle his way into a day off (puh-lease, it's the 6th day of school!). I even saw him smile, though he quickly changed it into a glare when I caught him. Hopefully I can get him to go to bed early tonight so he's not such a bitch tomorrow. Only room for one bitch in this house and right now, that's me! (I'm going to take a nap...)

P.S. Totally off subject but- I will still be uploading pictures from the awesome vacation. I'm just waiting until after I share them with the Seester.

Sunday, August 19, 2012

i'm still "here" even though i'm not here

This last 4 weeks has taken its toll on my body. So, I'll be around but not posting very frequently, as I regenerate. I will post those vacation pictures eventually, (girl) scout's honor.

Thursday, August 16, 2012

the most wonderfullest, fantabulous, awesomest time...

It really was great, y'all. I'm not saying it was perfect, because there is no such thing, but it was pretty amazing. To catch everyone up: Last week my husband, the 2 dorklets and I went to St. Thomas for our first "real" family vacation. There was no medical stuff attached, no wedding or family reunion, no work commitments- five days of just us, the sun, the water and a new place to explore. Travel to the Caribbean in August can be a real hit or miss experience because it's officially hurricane season, but I took out full trip insurance coverage and packed two big umbrellas, so, according to Tracey's Law*, we were in for blue skies, and they mostly were. Just some white clouds thrown in and the occasional gray one. I'm not going to go into massive detail about everything. Because that really would take several posts, and after TN last month I'm so over that. But the highlights shall be fully highlighted.

Where we stayed: Sugar Bay Resort and Spa on St. Thomas, US Virgin Islands. It's an all-inclusive resort with 6 different eating places (3 meals a day included!), free soda and certain alcoholic beverages (yay, pina colodas!), 3 pools, a private beach, a nature trail (with it's own mini-jurassic park thing going on- iguanas everywhere!!), and a mini-golf course. There was a shuttle that took you all over the resort, the bellhops were FANTASTIC, and we really liked it. Could have spent all 5 days just hanging out there...

Places we visited: We spent a lot of time enjoying Sugar Bay (including all day Friday) but we did get out to see the sights a couple days. On Saturday we took a guided tour of the island. We saw Drake's Seat (great view), St. Peter Mountain Great House & Botanical Gardens (too many stairs, but pretty flowers and a huge parrot enclosure, plus a pretty good view), and Mountain Top (best view ever! plus some fun touristy shopping. The so-called world famous Banana Daiquiris kinda sucked though.). Then we went to an outdoor shopping plaza that I forget the name of for lunch and retail therapy (or, in my case, alcohol therapy). We ate at this restaurant called The Fat Turtle and were introduced to the most wonderful concoction called a Walk the Plank. It's a (house specialty) blue margarita with a mango twist. Even K got a "virgin". So. freakin. good. Then we skipped out early and took a taxi back to the resort. We were supposed to go parasailing but it was too windy for it, so we hit the pool and played instead.
Sunday we went to Coral World ( and possibly the best time ever had on a vacation. The boys and I got to swim with Remo, a huge 400 lb sea lion who is so graceful on land and in the water, and he gives great kisses, too. Then the boys and Shawn went on an underwater Sea Trek (I'll definitely have to post this picture- they look like Storm Troopers!) where they got to walk along the floor of the ocean. They saw all sorts of aquatic life, including sharks! Almost everywhere is handicap accessible with ramps and handrails (except the Undersea Observatory Tower. you can get to the Tower (it's a pod looking thing that I can't believe hasn't been blown away!) but you can't get to the undersea part. The stairs are those circular kind, like the ones to Dumbledore's office except they don't move (now that would have been cool). While the boys trekked I wandered. I saw lemon sharks being fed, turtles playing (big turtles, could swallow my cat whole turtles- ok, maybe not my cat because he's getting a bit chunky, but a small cat would be history, if turtles ate cats.), stingrays hiding in the sand and I got to visit some lorikeets and play for a bit. (Also, the hotdogs there are grilled and like twice as long as the bun. So yummy.) There were coral reef exhibits and a "hands on" tank where you could pet some starfish. And iguanas everywhere! I'm pretty sure I didn't even make it through the whole park. Gonna have to go back some day.
After C.W. we walked next door to Coki Beach. It's a sandy beach with calm waters, so perfect for klutzy broads and so-so swimmers. The boys went snorkeling and I just played in the water. Shawn had to haul me in and out so I stayed in for as long as I could. I missed the wave action but I felt very safe swimming in the flat waters- no risk of a wave pushing me under. It really was a perfect "last day".
Coming home: We left Monday. The airport was packed and Delta's ticket network was down. We were given boarding passes to get through customs and security and promised seating assignments at the gate. Shawn checked in with them as soon as we got through to let them know I would need a wheelchair to board because I wouldn't be able to get up the stairs to board (you board staright on from the tarmac. what do they do when it rains?). I got "lifted" to the plane door. It was pretty cool actually. And guess where our seats were?! FIRST CLASS! I know it's all because of me. :D It really is like the movies, y'all. Hot towels to clean up with before dinner, blankets and pillows, and the in flight movie was The Avengers (too bad it wasn't captioned; gonna have to contact Delta about that!). It was a nice first experience to include in all of the other great first experiences we had on our trip. Once we landed in Atlanta things went downhill fast, so I'm going to pretend our trip ended there, flying over the ocean with all the leg room we needed and a not-yet-released-to-dvd movie playing on the monitors.

Pictures soon!

* Tracey's Law- if you prepare for it (and I mean really prepare, not some half-assed attempt to fool the universe), it won't happen.

Tuesday, August 14, 2012

henceforth this blog shall be called...

my vacation dumping ground. :D At least for a few days (or weeks- it was a lot of vacation packed into a teeny tiny living space). I have stories about land, sea and air; weather, sea lions, walk the planks, beaches, beaches, beaches and pina colodas! Just give me some time to reacclimate myself to the real world. And, yes, I have pictures! (Geez, where's the trust? LOL)

Monday, August 6, 2012

exactly! (wait. have i used this title before?)

My friend just posted this on FB but I thought it was highly appropriate to share here. I've talked about my NF2 before and even shared my journey with you, but this will help you to quickly understand why my recent vacation was the adventure that it turned out to be.

 NF2 is caused by a lack of Merlin produced by the body to stop tumors from growing where they’re not wanted. Merlin is the body’s home-owner’s association, and without it, thugs come in and set up shop along the brain and spine.
These are benign, mostly harmless, and they’re only dangerous when they start to infringe on their neighbors rights, like those filthy hippie squatters and their VW van bringing down property rights around here.
All people with NF2 get tumors in both ear canals, which is where the cranial nerves run and why NF2 is so dangerous to hearing, vision, facial movement, and balance. But other than that, NF2 affects everyone differently; this is why it’s so hard to treat. Doctors have no set pattern to study. Tumors pop up on the lining of the brain, by the brainstem, on the spine, just hanging out. They may sit there for YEARS not bothering anybody, then decide to strap a bomb in a backpack and blow up the nearest 7-11, biologically speaking. But it’s not as simple as removing tumors as they pop up; there’s too many, for one thing. Brain surgeries take a lot out of you, and having them done repeatedly isn’t feasible. There’s also the “surgery begets surgery” axiom; once you open up a skull and expose the brain to air, something happens and you trigger tumor growth.
So what happens is, we monitor tumors with annual MRIs, which are compared to previous MRIs to check growth. Today, scans are kept digitally or, at worst, on CDs. “WHEN I WAS A KID” walking uphill through the snow both ways to the doctor, we carried our films with us. I always had to drag 3-4 years worth of giant envelopes full of scans to my appointments, and the doctor  would compare them using a pencil and paper to scale.
Nowadays doctors just click and drag. Technology is awesome.
Then it becomes a game of, ok, this tumor has grown more than this one but this one’s closer to something important…  So when an NF2 patient gets a report of “stable,” that’s the best we can get. “Come back in a year” is good also.   But an NF2 life is that annual gut-wrenching MRI waiting game. So “come back in a year” is great news.

Sunday, August 5, 2012

promise kept- vacation pictures

My injuries- the colors got washed out in the upload but you get the picture ;)
(this is actually almost a week post-fall)

official "we own you, mountain!" picture, with some pretty birds added

No, we won't share our time machine with you :) Official
"we survived the sinking of Titanic" photos

Southern Belles

Told ya so- this is a bear!

and that is an idiot blocking a bear

More pretty birds

Indian food really is good, guys

Did I leave anything out?

vacation- the end

I'm so ready to move on to other things so I'm blasting through the end of my vacation tale.

After our fall Tuesday and resting up we headed out to Mellow Mushroom for some seriously delicious pizza. And we got to meet our friend Wendy! Which was even more awesome than the pizza. (Mary will probably tell you that I thought the waiter was a cutie, which is true, but he was a horrible waiter. Being cute does not excuse poor service!) We closed the place down and they had to kick us out. Afterwards we just went back to the hotel and stayed up late gossiping.

Wednesday: A very full day. We (hold on... what did we do all day?) slept in a bit. Went to Smoky Mountain Brewery for lunch. Good burger- and the cook actually cooked it medium- but their BBQ sauce was GROSS! Glad I got it on the side. Afterwards we went to the Titanic exhibit. It's So. Freakin. Cool. You can actually touch water that is the same temp as the water the passengers went into. (It burns, it's so cold.) And we got to see the grand staircase- the one that Jack and Rose meet on at the end of the movie. We got our picture taken standing in front of it. (Ok, so we were really standing in front of a blue screen- the picture still looks awesome.) After all that walking I needed to relax so when we got back to the hotel we went swimming. Well, Mary and I did. Meg was worried about the water stinging her wounds- and it probably would have. I was mostly bruised but the few "road rashes" I had definitely did not like the chlorine. Especially in the hot tub. After getting back to the room Mary teased me that I didn't realize some guys were showing off for us. What can I say, I was all about just enjoying the water. (Being in a pool is like being weightless... and there's no real need for good balance when you're floating. I even "dance" when I'm in the pool. Ballet is my specialty but I can bust some other moves, too.) For our last night we got all spruced up and headed out for some Asian Fusion for dinner. I had Japanese. It was pretty good, a little salty. (Which is saying a lot since I generally snack on salty type foods like chips, pretzels and nuts.) Then we went for the highlight food of the trip- FUNNELCAKE! Oh, nom nom nom nom. It was made fresh (of course) and so gooooood. Next door was an old fashioned photography place so after we finished our snack we got our picture taken as true southern bells. Turned out better than I thought. We be some beautiful chicks. Another late night gossiping. Our last night. :(

Thursday: Up early for our last free breakfast at the hotel. Then loaded up the cars and said our goodbyes to Mary. Megan and I had one last thing to do. We never really gave up on our dream to see the parrots at Parrot Mountain. It's a rescue and rehabilitation place, which fits right in with Meg's philosophy. Me, I just really wanted to see and feed and pet some pretty birds. Plus, I had something to prove. That mountain did not defeat me! So, we headed back to the place of what is probably the scariest fall I've ever had. And it was every bit as scary as I remembered. But there was no way I was letting Meg brave it alone. We had some nice strangers let the employees know that we needed a ride up from the parking lot. When we got to the top of the ramp and got out I realized that the whole place was slopes like the parking lot, with a few flat places in betwen. Worried that I would again ruin the day for Megan I told the driver that I would need him to take me back down and he said the most magical words: "I can take you on a tour in the golf cart." Yes, yes, let's do that. :) We paid up and got settled in and off we went. Some of those hills were even scary in the golf cart. New appreciation for just how bad my balance really is. We got to stop for as long as we wanted at every habitat (cage just sounds so... prison-like). And the ground was flat enough that we were able to get out and feed some little birdies (Meg knows what kind they were- I just thought they were adorable). While I was feeding one, another apparently decided my head was a good place to nest or something. I didn't see it but I sure felt it. (Really wish we had gotten video or a picture of that.) The end of the tour was at the nursery (I think) where there were lots of birds being helped to... (do something I'm not sure about, heal?) But they were not flying around and they weren't tied down or caged so they must have been recovering from something. We were allowed to pet them at our own risk and boy were they quick to snap. I didn't stay long; the gift shop was calling my name. :) I wandered around a bit and ended up getting the boys some "happy birds" t-shirts. Then, while Megan went back out to spend more time with some of the birds, I ate lunch ( a really good hamburger) and rested my leg. Finally, one of the high points of the trip for sure, Meg and I got our picture taken with real parrots! The one sitting on my shoulder would NOT sit still. It kept doing its little parrot dance (you know what I mean, bobbing back and forth.) At least it didn't try to next in my hair; it was quite a bit bigger than the other one. After we were done visiting the birds we got a ride back down to our cars and said our final goodbyes. (There was an incident in the parking lot involving a total bitch but that's a story for another time.) The only thing left was the drive home. And all I can say about that is it was very long and I used my cruise control A LOT.  And it was very late FRIDAY night before I finally made it.

So, the first girl's week was a complete and total success in my opinion. Because even though my vacation tried to kill me, I had a blast and made it home in one piece.

Friday, August 3, 2012

killer vacation (part 2)

Now, where was I? So, I made it "safe and sound" to TN, we all unloaded and (literally) chilled out, then headed out to dinner. And I was introduced to the wonderful yumminess that is Indian cuisine. (Nom Nom Nom Nom). I had chicken tikka (?) and na'an bread (?) and it was so good. I took pictures. I'll try to add them when I add the leg injury pictures; the colors kind of complement each other.
Tuesday, we got up (way too) early and went for a drive through Cade's Cove. I admit the slow, windy roads put me to sleep a bit, but I was awake for most of it and it was beautiful. I saw a few deer, and a couple bears and lots of mountains. Plus, we were early enough that there wasn't much traffic. Bonus! (Yes, I have pictures. I said I'd try, so stop bugging me.) Afterwards we did lunch at McAllister's Deli- love that place! It was delicious- and I got a free shower when Mary knocked Megan's tea all over me. :) So, back to the hotel to change then Megs and I set out for Parrot Mountain (and The Garden of Eden). It really is a mountain, y'all. And their "handicap" ramp does not have handrails. We really should have taken the stairs. (That's my fault. Stairs are my kryptonite.) We pushed ourselves up the parking lot (on the side of the mountain), then pushed ourselves up the first part of the ramp. Or, I should say I pushed, while Meg pulled (she's way stronger than she looks). Then we got to the switchback and realized the 2nd half, which had been hidden by trees, was even steeper than the first half! And again, no handrails. So we were stuck; had to go up or down. We chose up and pushed on. About 2/3 of the way up my vacation REALLY tried to kill me. I was leaning pretty far forward against the slope and felt myself start to fall forward. I knew if I fell on the ramp there was no way I'd be able to get myself up again so I tried to counter it by leaning back a bit. Well, I over-balanced and started to fall BACKWARDS instead. Even though I'm like two of her, Meg would not let go of my hand when I started to fall. So, I twisted to the right to try to stop her from falling, while I was falling. I'm pretty sure that twist saved my life. Instead of landing on my head and back, I apparently landed on my right knee. That's based on evidence, not recollection. I don't remember landing, just rolling down the side of the mountain (no way am I ever calling that a handicap ramp again) after we fell. The evidence? Well, once we stopped rolling I immediately scooted over to Meg to make sure she was okay. She hit her head when we fell (hard enough that her ABI flew off into the bushes. But not hard enough to crack it; she's got a really hard head.) and scraped up her legs and arm pretty bad. I thought I came through just fine until our first "rescuer" asked "Is your leg broken?" There was a HUGE bruise and lump that had formed immediately. It was very freaky looking and scared the crap out of me. For about a minute. Then I thought "You know, that doesn't really hurt that bad. I think a broken leg would hurt a lot worse." An on-site EMT checked us over, then some burly men helped us back down the ramp to sit on the steps while we waited for the ambulance to get there. They had called for it when they thought my leg was broken and Meg might be concussed or brain-scrambled or something. Those EMTs also said it wasn't a break (it's a soft tissue injury). And they dressed Megs leg up real pretty, then sent us on our way. :) Once we calmed down a bit we headed back to the hotel to rest. But we still wanted to see the parrots so we didn't give up on the dream.

And that's going to be another day. This is exhausting, reliving my adventure. And I'm only halfway through Tuesday! I think though that after I survived falling down the mountain my vacation realized I'm just not that easy to kill.