laziness around the holidays

Well it's officially December which means I can start talking about the holidays without fear of being scorned or have rocks thrown at me. I've been warming up for the holidays with thoughts of gifts in a box as well as some good holiday-themed music. Tis the season and remember the reason, you crazy bitch.

Not everyone is as cheerful or organized as the big LL. Let's examine a couple examples of laziness during the season exemplified.

Case and point #1:

Wow, you are super lazy. L-a-z-y. For reals. I mean at least get a fake tree like Nik made me do (then just keep stating "recycle, reuse, refresh"). Nope this dude stopped by the gas station on the way home, while picking up a 40 oz. and chewing tobacco, and got a wintergreen scented air freshener. Then he sat at home thinking about a good way to display it...that was until he got an inch on his back and discovered his trusty back scratcher. At least it is smells like a Christmas tree and you don't have to worry about all the presents fitting under it!

Case and point #2:



Yeah you suck too. Lazy mother fers. And PS your arrow point left is burnt out so you suck more.

Sometimes extreme apathy can lead to extreme ingenuity. With one simple word and a minuscule fraction of the effort, the guy on the right is expressing the exact same level of Christmas spirit as his show-offy, bigger-budgeted neighbor. Plus that guy borrowed a rake from him like three years ago, so it all evens out.

Case and point #3:

Jesus didn't even have electricity....what does he care!?!?

This is totally the lupus way of approaching the holidays. Good intentions immediately shot to shit with a little bit of pirate-like swearing thrown in there. Sounds about right.

Well tis the season everyone!

it's been one of those weeks

You know how you have those types of weeks...the ones that make you drink....the ones that exhaust you...the ones that make you want to run into on-coming traffic. Well I had an exhausting one, and I will be the first to admit that it pales in comparison to Helga and McBetty's everylives. Let me explain...

Case and point #1: Learning how to walk again and drive with my left footsies

I have been prone to ankle sprains for over a decade and this last spring was no surprise when a spikey pine cone of death look all 6 feet of me out. I was on the ground before I even knew what had happened. Then during a later spring hike I tweaked it again. Since then apparently I have been walking funny or at least in a way that has irritated my old stress fracture from 2002. Same foot, same bone-like-area. Now I can't put pressure on my front of my foot without pain and there is no way I can push up or stand on my toes.

Is this why I stopped doing yoga? Yeah that could be a subconscious reason. And now I don't get to work out for a month. That makes me happy.

Here's my new accessory for the month of October:



God, isn't that sexy? And those pasty white legs...grrr! I've been workin on some good stories to go along with it. Bar fight? Sword fight injury? Got any other ones I can use???

The exhausting part was I walk uneven now, which means you either don't move or you are pretty sore by the end of the day. Damn muscles you don't typically use. And crawling out of the plastic pinto, all 2 inches from the ground, really blows. Plus I have to wear a tennis shoe instead of my beloved flippy flops.

Case and point #2: Butt plugs for your eyes

This week I had my annual eye doctor appointment, and I really hate people touching my eyes. Due to side effects of my lupie drugs, I have eye complications and they have to absolutely rape me with every test in the book. I only do afternoon appointments so I can go home and start drinking afterwards :) Better yet, why wait till afterwards?

The last two years I had eye plugs put in, which I call my eye butt plugs. This blocks the duct from my eye to nose and thus keep moisture in my eye balls. They completely numb your eyes (like your teeth at the dentist) and then shove butt plugs in your eyes (it's fun). Turns out the plugs are expensive and don't stay in for me, so this week they announced that I should have them soldered shut. HOLY BALLS!!! You want to sew my eye ball ducts? That beyond freaks me out.

Yeah I may need a week to process that business before making a decision, I mean I just got put in a moon boot, OK? How much can one girl take in a week relating to health problems? Well apparently all could be butt plug free though.

Tomorrow's a new week, one which I'll still be adjusting to my new life as a cripple.

this year we walked in the rain

Well Saturday we all hauled our sexy booties back up to #DC for this year's Walk for Lupus Now. M, B, and I were up before 7 AM to cook our balls off. There was coffee and eggs and "beef, it's whats for dinner" aprons, and fun with red cops-and-robbers bandanas. We had a slight mishap with the plastic pinto that AM, but we are just going to pretend like that didn't happen. When we got into the district and the sky promptly opened up. We were completely soaked to the bone for the next 3 hours. Despite this, many people still came out, including a good number of Lupies from my group:



Damn we're a sexy bunch of people. My little grass roots team TOTALLY kicked ass raising about $23K, killing last year's record of 13K. Holla! Last night I was back in DC for meetings, had got a round of applause and some flowers for all our hard work. Truly inspirational.

McBetty told me that her boss, who consequently is married to a high-up at HGS, got a couple good jabs in for that fact that my Lupie team was beating their corporate team a week before the walk. After that they picked it up and basically stomped on us donation-wise :) But as McBetty and I said, it's not like they haven't done a TON this year for Lupus, you know getting a drug to treat it through clinical trails for the first time in over 50 years. We all thank you, HGS!

THANK YOU! THANK YOU for your continued support. It means alot to me and to this community.

telling you your lupie business

Well this was my 4th year to suit up and attend the Lupus Foundation of America's Advocacy Days on the hill in DC. Last week we had meetings with all my representatives from the big commonwealth of VA. I didn't get to meet another Senator and I severely missed little Tommy P, but I found my voice....

As many of you know, I have a big damn mouth but when at LFA events I tend to be the tall quiet one in the back. My story is not nearly as traumatic or sad or meaningful as all my friends. I was diagnosed early, I can work a 40 hour job, I have health care, and therefore I keep my mouth shut. I don't know if I can accurately articulate this to those who don't experience it daily--the degree of disaster that this disease takes on the lives of the people affected, and how much I am abnormal. I was just emailing with one of my more sane support group friends who was THRILLED to get her drug list down to 8 prescription a day, and seriously she is what I would call high-functioning.

This year on the hill (for the first time ever) I felt strong enough to talk more, to share, and to give a 20-minute "tell-you-your-business" speech. And luckily, it went well. I'll be the first to admit that it might just be that my expectations have changed, in that it didn't bother me when those crazy women go off on their stories or when the foundation can't get their business together. I articulated our purpose and I didn't get as upset when the staffers replied "we are in a budget short fall" or "we don't support that."

Last week, I got a little crazy tweeting up a storm with the LFA stuff. Also, if you want to write any of your representatives, using an LFA form letter, you can do so here. Tell them someone special to you was on the hill (for big block of cheese day) last week, and you too support the cause even though you couldn't be there.

xoxoxox

run, my friends, run!!

Well I'm overdue with chronicling my vacation about a month ago. It all started with a marathon race on Halloween in DC. As in the District of Columbia, you ask?? Why yes, the entire town shuts down, 21000 people run, and thousands come to watch the craziness. I mentioned previously that my friends are the best, and they had decided to run their balls off in order to raise money for the Lupus Foundation of America. They ran 26 miles and raised over $2000. AMAZING!!! (PS, you can still donate).

There were lots of stories that started around 7 AM, but let's skip ahead to 3ish when we all reunited:



We got TWO FINISHERS!!! Woot, woot. JB and B got metals whilst Helga and I were still in our last minute Halloween costumes. Typical, I'm the tall devil with horns! While Helga gets to be a little pussy :)

At this point of the marathon-day-of-fun, we were just so happy to find JB. We saw them both at mile 1, JB at 10, and both at 16 where we were a little worried. JB finished like a trouper (despite the bum knee), then collapsed in the arms of a hot marine who was "concerned about the slurring of words"--yep I saw the medical report word for word!!! If Brian or I were there we would have thrown her over our shoulder and said "she's fine, don't worry about"--the line we've been saying for 10 years whenever she looks drunk in a bar! They med-tented her up and then sent her through the crowd of 20,000 people. When we finally found her, we embraced, we cried, we gave her more oranges to smear across her face and the first words she says "THAT WAS TOO LONG!!!" We slowly carried her back to the plastic pinto (hoping she didn't crap her shorts due to excess laughter), but half way across the bridge we heard the finish line music and.....



....Cripple dance party!!! 1 Luppie and an injured runner. There was lots of pelvic thrusting and air humping right there in the middle of DC. We were bumping to the song that eventually became the jam of the week. And speaking of pelvic thrusts, we all had a good time stretching it out with the Big B whilst waiting for JB:



Betty's favorite photo was Helga and I thrusting each other while Brian did a squat. Two thrusts and a squat....can't complain! Sooo here are some of the highlights for you all:

• During mile 1, some dude ran by and yelled "here cat girl" and through a Marine OooRah flag at Helga. From here on out I carried that flag yelling "WHO-HA" instead of Oorah, until I was afraid that someone might shoot me for basically yelling "VAGINA" as part of my enthusiasm.
• I balanced my f/phat ass on a cement barrier holding up a "Run, Brian, Run! You can do it!" sign for over an hour, and neither Brian nor JB saw me. They both ran by seeing the people on the damn ground!
  
• At some point I was commenting about how my arms had been in the air for at least 45 minutes holding up signs.....Betty turns and is like "really, really? you are complaining that are arms hurt while your friends run 26 miles???" Well in the words of Crazy Grandma, gravity is a bitch!
• Sign of the day "My wife beats me (at running)"
• Due to the random shootings in DC that week, there was some major security and firepower at the race. Helga and I saw a SWAT guy with 3 guns strapped to his legs and a 4 foot sniper riffle guarding a port-a-potty. Also, there were low flying helicopters with men hanging out of them with guns. Scary!
• That carb goo helps with energy during the race, but it makes you dangerously gassy! Light a match, seriously fierce.
• Lasagna and ice baths make for good pre- and post-race activities even if profanities are involved.
• If you are ever going to run a marathon (btw, you're crazy) the place to do it in this race....there are soooo many people, monuments, bands, and excitement throughout the course that you are never bored as a runner (until you make the bridge your bitch).
  

THANK YOU so much for visiting, for running, for raising money for Lupus, and for everyone who supported their efforts. It was a beautiful, fun and amazingly inspiring day!!! Thank you for being a part of it! xoxoxo

PS, and one last photo to make your day....this person was dressed in a sumo blow up suit and had no idea I was being all sneaky behind her:

missing a plug

Well I've mentioned, in passing, that my eye sight is shit (mostly due to Lupus medicine side effects) but that I also have chronic dry eye. Seriously, my eyes are always red and dry and sucking the life out of me, where even the other day a colleague/friend at work asked if I was smoking it up. Ha, I wish, it would probably be much more enjoyable.

Well anyways, last year I chronicled my new eye doctor experiences where they decided to put eye (/butt) plugs in my eye sockets. My friend, B (not McBetty but the other one), reminded me about this classic conversation a year ago where I met her husband and just kept talking about the butt plugs in my eyes :) I guess he was sold on me after that. Ahhh, good times.

During my return eye doctor appointment the other week I found out that one of my eye (/butt) plugs has fallen out. She asked me "have you noticed that your right eye is drier than the other?" Really? I don't pay that much attention, they are always dry, hooker. So apparently, I have only had one plug in for awhile....I've been lop-sided. But don't worry I'm on it and going to get re-plugged!!!

Everyone needs a good eye (/butt) plug!

DC luppie update

Well here I am in DC being a Luppie rockstar and during the first two day I've already got a number of observations:

1. Most Lupus researchers are short, tiny little Asian men, whose names I cannot pronounce. I'm not even going to try either.
   
2. LL tall white lady with short Asian men = AWKWARDness
3. Lupus researchers are some serious people, they don't laugh, and they don't smile. If I was that serious about my disease I would have killed myself 3 years ago...
   
4. There are a number of foreign dudes who I swear can talk without opening their mouths. They would be amazing puppetry people. This one guy has an France accent and even though I am listening very hard I'm about 2 sentence behind on comprehending what he is saying...
   
5. So not only do these people mumble, they also talk fast and by using very big words. Seriously, I am sooo dumb. Not only am I bringing down the average age but also the IQ range in that room...
   
6. There was soooo smrt talk happening for 11 hours today that at lunch I had to run back up to my hotel room to read celebrity gossip and watch ET lunch edition. One of the little asian men asked me if I ate lunch and I was like "yes, but in my room" hahahaha, away from you people.
7. We worked for 11 straight hours today discussing 19 proposals and my emotions ranged from "I think I'm going to cry" to "I'm mad as hell" to "This totally sucks my balls." As always with these Lupus-related events, I'm on the fence whether I am doing something meaningful versus pushing me into a deep hole.
   
8. I don't know if I'm needed. Anything I have to say about how this idea would help Lupus patients, it is always trumped by the poor science. And on top of it, the Lupus research is so in its infancy that rarely things are actually getting to the patients.....SO FRUSTRATING!!! I have to just sit there and discuss my own humanity.
   
9. I did talk. I did tell one of them how I didn't appreciate him making fun of the sun symptoms--he said "Well this idea isn't novel, we know there is sun exposure problems" and I said "Well yes but because we know that is common doesn't mean we have solutions for it. It is one of the most common symptoms and one which affects alot of patient's lifestyles" and he goes "It is not like the army folks are going to be sun bathing in Iraq" and I said "Well no one with Lupus goes to the beach or sun baths" What is your damn point????
   

Done with this all tomorrow and maybe in a week I'll feel like it was worth it.

changing a luppie's future

Well I've mentioned previously about my volunteerism with the Lupus Foundation in raising some money, drinking at their galas, and meeting with our senators to tell them their business. The newest addition to these efforts was being nominated to review Department of Defense (DOD) grants for the future of Lupus research. How freakin awesome is that???

Earlier this spring I was nominated by LFA, went through application process and interviewed with the feds. Luckily, they deemed me an acceptable/passing/OK "consumer reviewer." This means I speak for the entire Lupus community....you know all 1.5 million of us Americans (no pressure, you idiot). Well me and my millionaire mentor are representing, big time.

So at the end of last month, you know with all my free time between spending two weeks in NC and burying my grandma, I got my Lupus proposal assignments. Last weekend I finally sat my f/phat ass down to read through all 10-15 of my full DOD grants. I sat on a conference call last week and one early this morning, and am feeling like I can now actually confidently rate these applications.

I actually got to a point this weekend where I went from feeling overwhelmed to feeling very excited about the potential of some of this work. I can't tell you about it because I had to sign my life away and my first born child to the government--sort of like my sister who gets electronically shocked if she talks about her work on the "dark side" of building military satellites (oh wait, did I just say too much?).

BUT one exciting thing had to do with creating a Lupus pee stick, sort of like a preggers test but for figuring out if my kidneys are rejecting me quicker. I was all about this effort. When I visit my 30 doctors every 3 months I have to pee in cups, and I'll be the first to admit that my aim isn't very good. I think I can confidentially speak for me and all the lab technicians, that a pee stick would be much more appreciated....I'm on board with it. Sign me up for the luppie pee stick and artificial silicon cell coatings to trick my crap-ass antibodies not to attack my body. Sounds good to me!!!

I will be in DC next week for 3 days of meetings to debate the good, the bad, and the ugly in the future of all Luppies....no pressure....better be professional LL. On it.

raising awareness

I received an email this week that my fav, Snoop Dogg, was going the View. Turns out he was bummed by the big BO (you know, Presidents take priority especially when they have the highest daytime ratings EVER). But next week, apparently, you can watch the big D-O-double-G talk with the hen party about his daughter having Lupus. Here's hoping the man can get a word in edge-wise....

I don't wish Lupus on anyone but all these stars coming out to talk about the disease is only raising more awareness, and this makes me grateful. Snoop has publicly said that his daughter coming down with the chronic disease bought his family together and saved his marriage. His young daughter first starting showing signs around five years ago and is currently on meds which appear to be working.

Tune in on Friday, so check out the new issue of People for more info. And thanks Snoop, you rock for stepping out and speaking publicly.

crap, that's an ugly mug

Well crap and a half, I got an email today that just about knocked my socks off. As I've mentioned previously, I got the best friends in the world. They are my family and I love them dearly. And apparently because they are nutters, they are running their balls off in my honor and raising money for LFA.

My friends at LFA found out and decided to feature them in their foundation newsletter. I agreed to this thinking that we would be one line near the bottom of the damn thing after people had already stopped scrolling through it. Turns out we were right on top and they stole our picture!!! FOR CHRIST SAKE....my ugly mug got emailed around to hundreds of people in the DC metro area today. Crap. My white, sweaty (due to massive amounts of football practice on the National Mall) and looked HUGE!!! God damnit.

Here is what they said:

• "Friends of LFA-DMV, In addition to providing you information on our upcoming events and programs, we want to highlight interesting efforts of other members/supporters. Jilly Bean and Brian are running in the Marine Corps Marathon in October and they are raising money online in support of their friend LL.LL is an active member of the Alexandria Support Group and her friends are using their FirstGiving page to honor her, further her efforts with LFA-DMV and bring lupus awareness to a larger audience. Check out their FirstGiving website. FirstGiving is an online giving site that individuals can use to collect donations for non-profit organizations like us. You can turn any event into an awareness and fundraising opportunity!"
  

Want to the pic that was sent around???? Check out this older post and scroll to the one of Jilly Bean, Brian and I. YIKES, scary huh? Fine for the privacy of my own site but I'm not sure I was prepared for it to be mailed to everyone related to Lupus in the tri-state area......

I hope it got us some donations.....remember you can donate the pennies in your couch here!

I have the best friends

I seriously have the best friends in the world. They are truly the most amazing people ever. In a show of solidarity against Lupus, my friends have decided to run a marathon in my honor. They are raising money to run 26 million miles with a bunch of hot Marines. That is truly amazing for a number of reasons:

1. Anything over 3 miles is like a marathon to me. What? You are running a 5K, yep sounds like a marathon/triathlon to me.
   
2. I only run downhill, occasionally on level ground, and NEVER uphill.
   
3. I only run when being chased....no, no, no, I only run when being chased and NOT wanting to be caught.
   

So I do like myself a good parade or running event. I like events where people are putting their hearts into training and/or waving from a gigantic raspberry float. I get a little too excited and tend to shout inappropriate things like:

• "Pull it out!"
• "You can do it!" (and that is only now dirty because of Rob S.)
  
• "I love raspberries!"
  

So a tip of my hat to my Jilly Bean and Brian.....and perhaps Helga and T who may be convinced to run parts of it along side of them. I, on the other hand, will be fully clothed cheering from the sidelines with my mug'o'coffee with a little Bailey's creamer. Here's hoping that big ball of death in the sky stays hidden and you run like Forrest Gump....

Apparently there are other Lupie supporters running during this marathon too, so LFA is going to highlight them in the next foundation newsletter. Bitchin, huh?

lupus rockstar part 2

So the second part of my Lupus rockstarness is that I got to meet VA's Senator Mark Warner this spring. I forgot to post this great picture of my Lupus friends as we are standing on the Capital Steps in DC. You have to admit we are one sexy group of Lupus bitches, hooootttt:

OK so the real second part of my Lupus rockstar internship is being asked to be a peer-reviewer for the new Lupus-related research proposals coming into the government. I was nominated by the foundation, had to submit a personal statement and CV, and be interviewed by the Dept. of Defense (or something). I figured this too was a once-in-a-lifetime opportunities to be involved in who gets funded by the government and what Lupus issues are on the front line of our research and attention. Plus I figured this was a moment to apply this experience to my professional life, even though it is a separate topic. Soooo I found out this week I was accepted and will be heading up to the hill in September to participate in 3 days of meetings and decision-making (which I apparently also get paid for, so bonus there too).

Also this week I got an email that I'm going to be mentored by someone else who has be apart of these committees previously. I google stalked this person and I'm pretty sure he is someone important, especially since I think he has a forbes.com profile. Soooo THAT made me slightly more nervous, but I'll work it out. More on this as it unfolds.....

lupus rockstar

Well, it's official, I've turned into a Lupus rockstar. You raise $13,000 for the foundation and all the sudden you are a hot commodity. Since the successful walk, I've had two great opportunities presented to me. First, we got to go a Gala, and second, I got asked to be a peer-reviewer for all new Lupus research proposals (but more on this later).

First, I got an invitation to the National Lupus Gala which was on the hill in DC. At first, I was going to say no, but then I figured when the else was I going to be able to get dressed up and go to a GALA on the hill. So T and I hoped in the plastic pinto and drove up to DC, polished off a bottle of wine while getting gushied up, and headed to the event. We decided we would drive into the district so that we could valet the pinto. It was super hot rolling up in my 8 incher rims, low riding to the ground (and not on purpose!). Some hot men walked us in and right away we were bedazzled by fanciness of metal detectors, name cards, open bars, tuxes, heels, and amuse bouches. Listen, I'll come back to this event year after year just so someone will amuse my bouch!!! (hahah, I got a hundred of those thoughts going through my head)

No seriously though, those appies were amazing, and I kept trying to put the lemon chicken ice cream cone one in my purse. T and I were social and rubbing elbows with important people, drinking wine and maritias. Finally, they opened up the ballroom which was amazing decorated. There were tall columns with sheer drapes, orchids center pieces, purple butterflies everywhere and fanciness. We found out that my good friend Kassandra was sitting at our table (who admitted to me during advocacy days that we would have been "sandbox buddies" when we were younger), which meant our night just got exponentially better.

First thing Kassandra suggests is for us to try to get back into the VIP room. Well HELLS yes, both T and I said without hesitation. So we sneak back and sure enough guess who is there....no other then Jullian Lennon, John Lennon's son, getting ready to go on stage. For those who don't know, in situations like this I tend NOT to be shy, but belly up to that business because this is a once and lifetime opportunity (case and point, asking DMB for a pic or chasing down naked man during bachelorette parties or making out with men dressed as Moses--life is too short not to take full advantage of these types of situations), which resulted in this amazing picture:

We said thanks, I gave him a reach-around, and we went back to our seats. During the amazing 4-course meal, T and I continued to down our own bottles of wine. Seriously, they just kept bringing more! We sat through the speeches, the awards, and also got some goodies bags (Ted Turner's biography was a real page turner, let me tell you). After the banquet, we decided to sneak back into the VIP room where we were able to met the other LFA model spokesperson, who won America's Next Top Model, and take this picture:

During the after VIP room, I walked up to one of the bars to ask for a drink. The suited up guy behind the bar goes "Oh I'm not a bartender, I'm just making myself a drink" and then hands us a bottle of vodka. So there we are, dressed to the 9's, on the hill, walking around with our bottle of vodka, and hanging out with the Lennon family. Pretty wicked awesome if you ask me!

The night ended with us waiting for the plastic pinto to be delivered next to all the caddies, and a trip into the DC ghetto to take Kassandra home. I said "We are headed to Rosslyn area" and she said "I'm on the way" which translated meant "we are going to all over DC, passing at least 20 cop cars on the way, and praying you people can find your way back at 11 PM at night." Needless to say, T and I got home safely and I'm pretty sure T was passed out on the floor before we were through the door!

Those are the nights of good memories! Maybe this chronic illness thing has some perks after all.....

the lady talks Lupus