An eye-opening loss.

I found out this morning that a cousin I never met died from complications from an autoimmune condition that runs in our family--and that I have, along with my mom, brother and sister--called hereditary angioedema. It's a swelling condition, and, while I don't have all the details, what happened to my cousin is that his throat swelled shut, and he died. He was 19.

As you can imagine, it throws me for a loop when I hear about someone dying from something that I have. Unfortunately this isn't the first time I've been in this situation--I know many people who have died from complications from juvenile arthritis. My angioedema has historically been pretty mild and manageable. I have been lucky. But this is a disease that my mom, brother and sister all have as well, and it's not always as gentle to them as it has been to me. Especially to my mom. It terrifies me to think about the possibility the same thing could happen to one of them, or even to me. And this is a disease for which there is no cure, and that is so rare that treatments are practically nonexistent.

There is a clinical trial at MCV for a new medication for angioedema that I'm enrolled in, and ever since I heard the news, I keep thinking, "That drug could have saved his life." Instead, he died in the hallway of a hospital not 20 miles down the road.

I don't talk a lot about how I feel about my two autoimmune conditions or how serious either of them could be, because it seems like a big enough burden for me to bear on my own... there's no reason to worry anyone else. And quite honestly, I don't often worry about it for myself. I am, again, very lucky and healthy for the most part. But when I was talking to Bryan about what happened to my cousin this morning, I sensed a little worry on the other end when I mentioned the "this could have been me" sentiment. I couldn't help wondering when I got off the phone if he was thinking about the children we hope to have one day, because talking to him about it certainly made me think about them.

The statistics are that any child I bear has a 50% chance of being born with hereditary angioedema. The chances of my children having juvenile rheumatoid arthritis are significantly lower (if they exist at all), because I sort of hit the lottery and got that as a recessive part of the angioedema gene--that's not something I'm likely to pass on. I have often thought the HAE gene must be stronger in my family since all three of my mom's children got it AND my uncle's child got it, but I trust science and there is certainly the possibility that my family's coin flips just landed that way. My brother and sister and I have always been able to cope well with our disease, we have never been so sick that we were incapacitated for more than a couple of days. My mom, on the other hand, has fought horrible swelling episodes that leave her housebound for many days at a time and have sent her to the hospital more times than she can probably count. She has felt the disease was about to take her life on numerous occasions. My cousin had it worse than any of the rest of us ever did, and although I never knew him, I always heard stories of his struggles.

So, I wonder often, if I did pass this down to a child, how could I possibly know what lot he or she would have? Will there be medications approved by then that would prevent any serious problems? Would he or she just have the issues that I have, which are totally manageable? Would knowing the answer to these questions change mine or Bryan's desire to have a family?

These are obviously questions that my husband and I have thought about, and will need to continue to think about. I don't know the answers. Even if our children don't inherit this disease, there are a million other problems children are born with that could have nothing to do with either of us. My rheumatologist encouraged us to go speak with a genetic counselor, and I decided not to a couple of years after asking myself this question: If I knew my children would have the problems that I have had, would I still have them? The answer is yes. I love my life, I am extremely happy, and I believe the medical problems I've had have made me a stronger person, better equipped to handle whatever life throws my way.

Still, my cousin's death saddens me and is a reminder that life is not as simple as I'd like it to be. It opens the door to many questions, some about the bigger picture of how this could happen in the United States in a hospital, others that are about the smaller picture of my own family choices. Each of those questions leaves me with a heavy heart today, and many prayers for my cousin's family, especially those on my side of the tree.

What's happening to people? A sad day for humanity.

Last night on the news I heard the story of the 78-year-old man in Hartford, CT who was hit by a car in the middle of the street at 5:45 on a Friday afternoon. He was hit so hard that he flipped up in the air, then crashed to the ground, bleeding but still awake. The car that hit him sped away, and pedestrians in the area and cars driving by did nothing. No one stopped to help him, no one ran to his side to comfort him. Later it turned out a few people DID call 911. But not a single person went to this man's side, not even to wait with him and give him some words of encouragement until the paramedics arrived.

What in the hell is wrong with people? Stories like this make me think that I am incredibly naive, because I still have faith in my fellow man. I--apparently wrongly--still think that most people are genuinely good and care about other people. But seeing this, I wonder, have I totally lost touch with reality? Am I so caught up in my little bubble of a world that I don't realize what it's really like "out there?"

If I saw something like this happen, I would have my car stopped in the middle of the street and be by this man's side in a heartbeat. I wouldn't be able to do much, but as humans, sometimes just having someone next to us is enough until someone gets there that actually can do something to stop the bleeding or assess the damage. A warm hand, a kind word, just knowing that you matter in this world because you are a HUMAN BEING--these things are essential in any time of need, even if the person helping you is a complete stranger. Hell, sometimes it even means more when a stranger stops because then you feel a part of something bigger, this thing we call mankind. And if we all actually felt connected to each other, well, I think a lot of our problems would diminish, if not vanish.

A few years ago on the 4th of July, we went with some of our neighbors to a little empty lot near our house to watch fireworks from the back of their pickup truck. Not more than 5 minutes after they ended, we heard a horrible noise and looked to see a Nissan Xterra flipping over after colliding with another car just up the street from us. All six of us ran up the street to see if we could help somehow. None of us had training, but we REACTED. There was an EMERGENCY and people would need HELP. No one else was there yet. Going to these peoples' aid was not a choice, it was an instinct. Yet, as we saw by this story, not everyone has that instinct.

It makes me incredibly sad to think that humans have gone from creatures that dwelled in tribes, where survival of the whole group was the responsibility of everyone, to creatures who care only about the individual or perhaps a small circle of family and friends. That some people can see someone in extreme duress and just walk or drive on by. I mean, good lord, when I was in college, I made good friends with the lady who scanned our IDs at the lunchroom because one day I walked past and she just LOOKED sad. I stopped and asked if she needed a hug, and she started crying her eyes out, and a friendship was forged. Yet there are people who see someone hit by a car and laying bleeding in the street who don't even stop to ask if there's anything they can do?!

Ugh. This story makes me so ill. Let's all commit to using our instincts and lending a hand the next time we see someone who even remotely looks like they need it. I know we're all busy, but the five minutes (or even 30 seconds) you spend making someone else's life better will make you feel more alive, more human, more loving for exponentially longer than the time you take out of your life for a stranger.

The blog where my conservative family and friends cringe.

I'm officially coming out of the closet on my blog as a liberal. Most of you probably already figured that out, but there are some people I love who I know have quite different political views than me, so I figure I might as well lay that out on the table.

The thing is, last night I watched Hillary's "concession" speech (if you can call it that), and then I watched Obama's victory speech. And I cried, because I am so freaking invigorated about the direction we could be headed in the United States.

For more than seven years now, I haven't watched more than 30 seconds at a time of what our president has had to say. I honestly can't stand to listen to him talk. I always end up cussing at him and turning the channel, not just because of his policy, but because his actual manner of speaking drives me bananas. And last night, I watched two people who are just in competition for the office speak for more than an hour. And I enjoyed it!!! It made me PROUD to be an American and EXCITED about the future of our country. And while I have always loved this place we live in, I can't recall ever feeling this level of optimism about my country.

A lot of people think Barack Obama is all talk, no experience. I won't deny his speaking skills outweigh his years of service to our country. And I know his whole purpose right now is to get people on his side, and a lot of what he says could be labeled "politics," but I don't care. I am on the CHANGE bandwagon, for better or worse. And if nothing else, I can't see how it could possibly get worse with him in office.

I mean, jeez, the man even had nothing but GLOWING things to say about Hillary Clinton, and even managed to compliment John McCain (with a backhanded jab attached, but still). The very idea that a president could speak to us and say POSITIVE things is so freaking refreshing that I even considered volunteering for his campaign. Even though I voted for Hillary in the primary (and right now, my Grandma is having heart palpitations... sorry, Grandma!).

I can't wait to see what happens in November. I can't wait for health care to be available to EVERYONE. I can't wait until education is more focused on individual children instead of some abstract concept of "no child left behind." I can't wait until the United States is back to making friends with the world instead of enemies. I can't wait until our country focuses more on our OWN economy and our OWN people rather than blowing billions of dollars in other parts of the world and sending our jobs to foreign countries when there are people in our own backyards who could use the work.

I'm not naive enough to think all of this is going to happen overnight, but I am hopeful that we are at a place in time where we could very well be on the cusp of something awesome.

Yes, we can.

This is what it's all about.

I am off today, as a "comp" day from working the whole weekend. It's nice--in my former life, if I worked weekends there was no such thing as comp days because the next event was barreling down on you and there was no time to take a day to recover. But at this job, most things can wait, and I can take one little day off (since I worked 2 I wasn't necessarily scheduled to) to relax and rejuvenate.

The reason I worked all weekend is we had some extra funds on one of the grants I manage to do education for the kids in the clinic. The grants I work with are HIV/AIDS grants--we provide services for women and children (and their families) affected by the disease. My job is very behind the scenes--I do the budgeting and the bill paying and such--so I rarely get to actually see the money in action. This time, though, was different. We decided to do a weekend conference for 12 of the families we see, and, because of my background in planning things like this, I was on the frontlines of the action.

And it was honestly the best two days I have had since I started this job two and a half years ago.

Not that I haven't had good days at this job--I love the people I work with and I like what I do. But being around those kids and their families... and being responsible for this awesome event that brought them all together... people, that is what it's all about.

Most of these kids had never met anyone else their age with HIV. They were all affected through their mothers (I think...), and so they've had it their whole lives. As you can probably figure, HIV isn't something a kid can talk about with his or her friends (imagine all the problems that could cause at school!). So finally, really for the first time in their lives, they were able to talk about this with kids JUST LIKE THEM. God, it makes me teary eyed just thinking about it.
We had the conference at Great Wolf Lodge, a resort in Williamsburg that has an indoor waterpark. The funding we had allowed us to cover all of the expenses for the weekend, which made it even better, because I'd say at least 90% of these families would NEVER be able to afford this sort of getaway for their family. One kid, at lunch on Saturday, was talking about how much fun he was having and how cool the place was and he said, "Ahhhh, pure luxury!" To hear that from a kid who was born with an awful illness and who is a foster kid with god only knows what sort of life up to this point... seriously, that is what it's all about. I will never forget that moment.

One of the teens came in on Saturday morning looking all forlorn and pissed that he was there. No smiles, arms crossed, slouched in the chair. Sunday afternoon when he left, he could not stop smiling and was hugging his new friends and shaking hands and... SMILING. HAPPY. Wow, it was amazing. One grandmother told a co-worker of mine that her 18-year old granddaughter had sung in the shower that morning. She said her granddaughter used to sing all the time, but she hadn't heard her do that in more than five years and that she had been very depressed, but told her grandmother that she was actually happy this weekend. PEOPLE--THIS IS WHAT IT'S ALL ABOUT. And while these examples might give you a little bit of an idea, it is really something you have to experience to truly know the wonderful feeling you get.

When I got home yesterday afternoon I was exhausted, but it was that good exhaustion that is a result of really caring about something and wanting to make it right and putting all your energy into something and then watching it all come to fruition and be successful. It is something I truly miss about my job at the Arthritis Foundation, when I felt that all the time. This was the first time I had really seen that what I do at VCU, no matter how non-visible, actually does make a difference in peoples' lives. And that is the only thing I ever knew I wanted to do with my life--make a difference. I am rejuvenated and repurposed in what I do. I can't wait until next year's conference.

The Epitome of the Chick Flick

I rarely--VERY rarely--see movies on opening night, but tonight, I did. I just got home from seeing "Sex and the City" and it was totally wonderful. A few thoughts on seeing the ULTIMATE chick flick:

1. Sold out theater full of women = noisiest movie theater EVER. But, oh, so fun.

2. Must. Shop. More.

3. I love love. And this movie reiterated that, like, a lot. Made me yearn for my husband (who didn't decide he wanted to come until it was already sold out and who I found on the couch, asleep in his work clothes, when I got home at 9:50pm).

4. When you go to an action flick that's exciting, you can take a potty break with that giant-ass Pepsi hits your bladder half way through during a fight scene that you know will last a couple minutes, so you won't miss anything. When it's girly action where what people SAY and DO actually matters, you can not pee.

5. Unbuttoning your jeans and unzipping them halfway buys you, oh, a good 30 minutes in your quest to avoid missing any part of the movie to use the bathroom.

6. It's a little awkward if you don't get your pants done back up before the lights come up (do they usually turn them back on that FAST?).

7. Oh yeah, and us women? We ALL seem to hold it so we don't miss anything. I believe the line to the ladies room was a good 30 women long after it was over.

8. Go see it. It's good. Real good. :)

Hard Workin' Man.

Sometimes, Bryan gets REALLY dirty working at the power station. Like today.

I'm no Annie Duke.

So we spent a couple days in Atlantic City.

And we lost our money.

Do you know how freaking ANNOYING it is to play poker and either not get a freaking hand to play, or to get great cards and be winning all the way 'til the LAST CARD when some IDIOT has stayed in with a freaking 3-5 suited and catches his effing flush on the river?! UGH!!!

Yes, that's how the three days went for me, and I apologize to all you non-poker players, since you probably have no idea what the hell that means. The point is that Lady Luck was not standing behind me, or beside me, or sitting in my lap. Obviously she prefers the men, because they're the ones whose chip stacks kept growing and growing and growing... Bryan had better luck the first night, but after that we both just died a slow chip death.

The good news is that the Borgata is an awesome hotel to stay at, so we did at least enjoy the amenities a bit...

And besides, in just about three weeks, we'll be in Vegas, where we'll win it all back.

Reason #1247562 why I love my husband.

Last night, my husband actually did not complain about me watching American Idol. He let me sit there and watch the WHOLE thing without ONCE saying, "Can't we watch something else?!" I was entirely impressed and must admit I sort of sat there thinking, "Come on, Davids, hurry up and sing before Bryan thinks it's time to go to bed!" (Okay, that may make it sound like I have to jump as soon as Bryan says so, that's not the case. What is the case is we enjoy being together, and we have DVR to record our (my) shows, so if Bryan's in a tv-watching mood, I usually postpone viewing whatever I'd be watching otherwise because I'd rather find something we both enjoy and spend time together. Just wanted to clarify that. :) )

Anyway, American Idol was good, but I'm pretty sure Archie's going to win. He wanted it more if you just go by last night. David Cook will be bigger though. Mark. My. Words.

So, this post is NOT about American Idol. Let's get to the point, shall we?

About 10 minutes before Idol ended, Bryan called down to me from upstairs, "Do you want to come up here with me after that's done or should I come downstairs with you?" I debated... upstairs probably meant in the bed watching TV. I flipped through the guide on the tv, didn't see anything particularly exciting coming on at 9pm, then realized if he came downstairs I may be able to talk him into watching last week's episode of LOST (the one show we watch together all the time). "Come downstairs!" I told him.

So he waited until Idol was over, and came downstairs and headed straight to the DVD player. I asked what he was putting in, he said porn. Of course. He's a man. But don't worry, he was lying.

The DVD loaded and onto the screen came something I had never seen before. It was US! On our WEDDING DAY!!! On VIDEO!

Now, shortly after we got married (a year and eight months ago), Bryan made a photo slideshow onto DVD, but there were two friends who brought their video cameras to the ceremony and recorded it, but we had never figured out how to get the tiny camera tapes onto a DVD (we didn't pay a videographer, and never regretted it, for the record). (Now that I think about it, I think I was supposed to figure that out... oops.) The first Valentine's Day after we were married, Bryan borrowed the video camera of one of the guys who had recorded for us and brought it home so we could watch the tape for the first time, and that was the sweetest Valentine's Day gift ever. I have to say, I had sort of forgotten about those tapes even being here, so that DVD popping up was the most randomly romantic thing EVER.

What's even crazier is that I had not even an hour before this been reading Dear Abby and the letters were all about women who were writing because some other person had said her husband didn't buy her jewelry so he wasn't romantic. Yesterday's writers were giving examples of how their husbands were romantic and jewelry played no part in it. After I read those, my first thought was, "Oh, my husband is romantic! This makes me want to find our wedding vows and read them again with Bryan." And then, wouldn't you know, the man reads my mind and pulls out of thin air a DVD with us reading our wedding vows.

People, how did I get so lucky?

The greatest sports injury ever.

A few weeks ago, I began having horrible back pain... I talked about it a bit, I think. Well, on recommendation from my rheumatologist, I got an appointment with a physical therapist, and my first appointment was today.

So I have a sports injury. And yes, it is a BELLY DANCING INJURY.

What the hell. Only *I* could be injured by doing something as non-strenuous as BELLY DANCING.

Basically what appears to have happened is that when I moved up to the advanced class and my instructor started pointing out ways for me to sharpen my moves and do them more correctly, I overdid it a little bit. Muscles that I've never used were asked to not only work, but to do things they had never even CONSIDERED doing. And to retaliate, those muscles squinched themselves up in a little ball and have not un-squinched. So I basically have a tight ball of muscles on one side of my spine, which has also caused those joints to go all wonky. But the wonky joints can't get fixed until the tight ball of muscles gets undone.

And so... I get PT twice a week for several weeks, until it gets all straightened out. At the low low price of a $35 copay each visit. And I thought we were saving our "economic stimulus" check. Not anymore!

Well, we're going to Atlantic City on Wednesday for a couple nights, so I guess my new goal is to win enough money to pay for all my physical therapy.

Dominion Family Reunion

There are a few guys that Bryan works with that he has become close to, and for the past several years, we've gotten together with these guys and their wives/girlfriends/families every couple of months. Usually we sort of rotate houses, and sometimes we go out to a restaurant instead, but we haven't been the "hosts" since our wedding, which was September of 2006. Needless to say, it was our turn. So this past Saturday, we had everyone over to cook out and have a few beverages. We also invited a couple of our non-Dominion friends that we hadn't seen in a while... if you're having everyone over, might as well take full advantage of the socializing opportunity, right?

The weather was PERFECT for a party, and Bryan had even gotten off of work early the day before and cut our grass, so we actually got tons of compliments from our friends about how nice our yard was. HA! If only they knew that just over 24 hours before, it had been waist high! :) I love having people over... it gives me a great excuse to clean and cook. Ironically, the cleaning part I *hate* to do, but know it needs to be done. The cooking part I *love* to do, but it's sometimes ridiculous to cook things like buffalo chicken dip and a big batch of chocolate chip cookies for just Bryan and me.

So what I didn't stop to think about when I planned a nice afternoon get-together is that most of these guys had been working non-stop (like, 60-80 hour weeks) for the past several months, and they were ready to unwind, AKA drink. Luckily we had plenty of beer and margaritas to keep everyone's thirst quenched. And so by 9pm, we had a full blown party on our hands.

By 10pm or so, I convinced everyone to play Apples to Apples, a VERY fun board game. I love playing board games, but usually I can't talk people into playing them unless they're drunk. Apples to Apples is easy enough that it doesn't matter how many you've had, you can figure it out. I'd explain it to you, but, unless you're playing it, I'm sure you don't care. Just know that it can get pretty hilarious. Once we had a winner, well, then it was just crazy. By then the tequila had been opened, AND the Captain Morgan's, and then somehow a roll of paper towels became a dance partner, and... well, it was fun, that's the main point of all this. :)