Tuesday, September 2, 2014

You're the meaning in my life, you're the inspiration...



Wow, I'm such a nerd. Well, you knew that already, but, fun fact- I L-O-V-E the band Chicago, and Peter Cetera rocks my socks. Now you know. The jig is up.

Anywho, I chose this song today, not only because of my love for Peter Cetera, but because as you read this, I'm 30,000 feet or so in the air en route to Chicago. The Windy City! I'm attending a conference, the Adult Congenital Heart Association's 7th National Conference, and fortunate that it happened to land one week post my monthly chemo. That's usually when I feel the best in terms of fatigue and pain. I was hoping I'd be able to escape all things lupus related, but, I have to find a LabCorp near my hotel to get blood work. So close!

Without sounding like I'm tooting my own horn (seriously, I'm not this time), since I've begun going on these speaking gigs and sharing my story with those willing to listen, people are constantly telling me how brave and inspirational it is to do what I do. But the truth is, in the wise words of Peter Cetera, you're the inspiration for my doing what I do. Cheesy and cliche, hell yes. But genuine.

The love, the support, the belief in me and all the "you go girls!" are what keeps me going. From diagnosis in 2008 until going on disability in 2012, I pretended lupus didn't exist. I ignored my body screaming at me to put on the breaks, worked full-time and went to school like a crazy person, I partied away the mental and physical pain, and had not one care that I was literally running myself into the ground.

And then I had my enlightening wake up call, and 2+ years later, I'm just now starting to get some relief from this never ending flare. I'm adamant about living my life and having fun, but I no longer feel like I have to put on a show. I'm comfortable with not hiding behind makeup to cover the rashes and wigs to hide the bald (don't get me wrong, it took awhile to get there!), I just say NO to things when I feel like shit and I don't feel bad about it; this is lupus, it's ugly, it's bloody, and painful, it can tear up relationships, it's expensive, exhausting, depressing, but it's part of ME, and if you can't handle the brutal honesty I bring then you better just check yo'self before you wreck yo'self.

Um. Did I just say that?

I sure did, and I'm not taking it back.

Where was I? Oh, yeah, doing what I do. As awful as it is, I still get out of bed everyday. OK, sometimes I roll to the edge and hobble to the bathroom. Sometimes taking my morning meds is so tiring that I'm back in bed the rest of the day. Sometimes I use the Pimp Cane to help me walk, and sometimes the cart at the grocery store is better used for holding me up than holding my groceries. But, my point is, I still get up, and I can still do my thang.  Believe me when I say, I treasure the good days.

Damn, I'm wordy. I guess I'll never write the Great American novel. So, I continue with what I'm good at. Raising awareness. Being funny and making people laugh with my brutally honest tales of the lupus life. Demanding that important people in the health care industry listen to me and make some changes already!

Yeah, this is the part where I ask you to donate…. you knew that was coming.

A friend from college has offered to donate proceeds from his trilogy of books (yeah, he's an author. Flipping cool!), Keeper of the Water, for the month of September to Team Lupalicious, my team for the annual Philadelphia Lupus Loop. I know a bunch of you are big readers, so I ask that you purchase his books, support Kevin AND support little ole' me at the same time! A win-win! They are Kindle editions on Amazon (you don't even need a Kindle, just download the app), so get to downloading, reading and donating to a great cause!

Book 1- Drinking Life http://www.amazon.com/Drinking-Life-Keeper-Water-Book-ebook/dp/B005DSA1T4/ref=sr_1_2?s=books&ie=UTF8&qid=1409274458&sr=1-2&keywords=Keeper+of+the+water

Book 2- Recruits http://www.amazon.com/Recruits-Keeper-Water-Book-2-ebook/dp/B006VUYO3C/ref=sr_1_1?s=books&ie=UTF8&qid=1409274540&sr=1-1&keywords=Keeper+of+the+water

Book 3- The Water Queens http://www.amazon.com/The-Water-Queens-Keeper-Book-ebook/product-reviews/B009JGLZ7I/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

You can also donate directly to Team Lupalicious, but you don't get anything cool to read…
Donate to Team Lupalicious!

And if you want to decorate you car and show lupus support, you can still buy the Luck Fupus #Team Marla car decal from Fluttering Creations
Car decals are COOL!

This post was far longer than I anticipated. Love you all <3




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Monday, August 25, 2014

Make it like your birthday every day...



Hi my loves!

It's been quite some time since I've done a weekend recap, so I thought why not rehash the Month of Marla. Everything has been lupus or butt hole or advocacy related, so here's a post on the lighter side to start out the week.

Ann and I have this knack for having more fun at kid birthday parties than the actual kids. Because we're fun. Or really immature. 

Here's a throwback to Nicholas' 1st birthday party circa 2011. Nothing has changed; Nicholas gets a year older, yet our age stays the same.
I love us.

Melissa & I taking the ferry into Manhattan on a gorgeous night.
People used to swear her and I were twins, and our own fathers would mix us up! True story.


Economy boosting at the 3rd largest mall in the country with Nicole. My girl discovered what a bad influence I am when it comes to spending money. "Yes Nicole, you NEED that Tarte palate!"
Also, we got to be Victoria's Secret Angels for a few minutes. Eat your heart out, Adriana.

The Hubs and I clean up pretty damn well. Butcher & Singer for my birthday dinner!

The Book of Mormon with Brie, Steve, Pete and a few more of my favorites. Matt Parker and Trey Stone are flipping geniuses. Brie and I were laughing harder and louder than anyone in that theater, and it reminded me how much I miss musicals/plays. Best night ever.

Dinner with my Zipper Sisters.

A night with my faves.

A pretty fun and successful Month of Marla! And now, it comes that time of year when I ask you to generously donate to Team Lupalicious, the team I've been proud to call MY team for the past 6 years in the Philadelphia Lupus Loop. No donation is too large or small, believe me when I say every penny helps the cause.

CLICK HERE to donate to Team Lupalicious



Love you all <3

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Thursday, August 21, 2014

You wanna stay alive, better do what you can...



Happy Friday Eve, mofos! In honor of Throwback Thursday (and because I would loooove another Propofol nap), I'm starting off with a little Michael Jackson circa 1983. You're welcome.


Beat It by Michael Jackson - Beat it on Grooveshark

Thanks for all the kind words last week regarding my bloody ass and tight butt hole sphincter. I consider it a huge compliment that so many of you praised me on my ability to turn a shitty situation (sorry, I had to!) into a funny story. It's a gift. My surgery is tentatively penciled in for September 9th, which means I have to cut my Chicago trip 2 days short, and that sucks on

so

many

levels.

I can only hope that as I drift off into a peaceful general anesthesia slumber that I have dreams of cool mint Oreos and gummy bears, and not nightmares of handsome Dr. Butt Hole making the rest off the OR staff giggle by giving me a Dirty Sanchez.



OK, how the hell did I win the WEGO Health Hilarious Health Advocate Award with this 13 y/o boy mentality? I really need to meet the judges who made the final decision, cause I have a feeling we'd get along just fine!

Speaking of WEGO Health, since being honored with the Hilarious Health Activist title, I've made so many connections I couldn't have possibly dreamed I'd ever make. If someone told me a year ago that I would be sitting at a table speaking my mind as a patient to the SVP of marketing for WebMD or the Director of global clinical development for Bayer, I'd have said "you're talking' gibberish !" (that was for you, Brie & Ali!) It destroyed me that my nursing career will never be what it was, and my reality is that I will never treat patients at the bedside again. If I were a parent, I wouldn't want Nurse Lupus Brain Fog taking care of my child; it's not safe for anyone involved.

And so, channeling my frustrations of this shit show that is lupus, into a blog for anyone who can use The Googles to find pictures of me with tampons shoved up my nose or so fat from steroids it looked like McDicky stuck a tire pump in my ass and filled me up with air, to prove that one can still laugh and find joys in life while dealing with this nightmare, has become a passion of mine.

True story. 


Of course, despite that I can poke fun at the anal interrogations (hehehe… poke… anal) and other lovely things I've been subjected to, the fact of the matter is, changes won't be made in healthcare unless I speak up for the lupus community. And that's where WEGO Health comes in.

I was asked to be a panelist in a 1:1 "spirited and thought provoking discussion," Painting The Starting Line Together: How Industry & Patients Must Partner To Define Engagement Goals, with Carrie, Senior Member of product public relations for Pfizer,  and moderated by Todd, the SVP of strategy and insights of WEGO Health. Yet another forum for me to tell my story, speak my mind, and bring valuable insight to the health care industry.

The conference was in NYC, so it gave me a chance to stay with a good friend who I've known since 6th grade chorus, and who I don't see anywhere near as often as I'd like. Melissa and her husband were gracious enough to let me take over their couch for two nights.

I arrived and signed in, and was told to find and wear my name badge.

Yep.


I didn't see the one person I knew (Todd), so I used that time to get some caffeine in my veins, grab a muffin, find a table in the back and do my weird, morning medication taking ritual. And of course, that's the exact moment someone came up to start a conversation.

Yes, I'm speaking today in front of the entire group, but excuse me while I choke.
Via

Todd arrived, I met Carrie and it was clear off the bat the three of us were going to mesh quite well. I networked, handed out my business card (!!!), and soon enough the group was shuffled into the auditorium to begin. Once we were seated and Carrie was making jokes, I knew we had it in the bag. The three us were a good fit!

I may or may not have taken twelve three copies!

The agenda.

Holy crap, I'm an author! Eat your heart out, Stephen King.

The speakers all made great points, but the one I found most compelling was able to use his own experience with Guillian-Barre syndrome to play a pivotal role in his position as Chief Experience Officer in the North Shore- LIJ Health System. It's damn near impossible to "sell" a "product" if you don't truly understand the need/use/value/impact.

During a short break I used the time to empty my bladder, take in some full breaths since my Spanx were down, and clear my head. I was sharing MY experiences, and unless I had a total brain fart, there was no way I could tell the story wrong. I got this.

Todd, Carrie and I were set up with microphone packs and took our seats on the stage while the rest of the group trickled in.

And then it all… is a blur. It was another one of those moments where I can look back and recall I was up there, words were coming out of my mouth, but I couldn't give you specifics. 

MarlaJan…32… pediatric nurse…tetratology of Fallot with 4 open-heart surgeries… my parents went through hell to keep me alive… lupus… cervical cancer… overlapping autoimmune diseases… chemo… hair loss… pain… so. much. PAIN… steroids… blog… Luck Fupus… Oh, good! You all get the name…  took my ability to have children… leave my job… depression… dent in my marriage… permanent damage to my heart and lungs… you. get. the. point.

Todd asked the questions, but let Carrie and me take the reigns and run with it. We played off each other quite well, there seemed to be no lull in the discussion, we made the group laugh from time to time, and formed clear points, mine being that the health care industry can never be fully "patient-centric" without using the voice of the patient. I'm aware everyone's needs will never fully be met, and I made it abundantly clear that as a patient, that's not what I'm asking for. What I want and strive for is awareness, to be heard, to play the starring role in my journey of being sick, to be taken seriously, to not have to swallow handfuls of off-label medications that in the end cause more harm then good and take medications that are specifically for what ails me. I don't need a cure (although, that would be nice), I want changes. I want better. I deserve better.

And if to get any changes requires me to sit on a stage and tell my story over and over and over, then so be it. I've heard this rumor that Rome wasn't built in a day, and it's the same within healthcare. Big things don't happen overnight; they take time and effort, trial and error, drive and focus, and those willing to cause a stink. As long as someone has an interest in what I have to say (and if they don't, I'll make them listen anyway! bitches!!!), I'll continue on this road. 

How cute are my shoes? DSW for the win!

Afterwards, people went out of their way to speak with me, to exchange business cards, discuss the possibility of working together in the future, to say how amazing my story is and how brave I am to share it, and (toot toot!) to tell me they enjoyed what I had to say the most. Validation at its' finest. My mom and dad tell me how wonderful I am all the time, but it is so Goddamn gratifying to hear it from others. 

Another great opportunity for the record books, and so grateful people have found something in me that makes my story worth sharing.

Love you all <3

Don't forget to buy your Luck Fupus #TeamMarla car decal! Represent Luck Fupus! The cool kids are doing it!

Click Here to purchase



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Thursday, August 14, 2014

Doo, doo, doo, lookin' out my back door...



*WARNING! If you are one of those people who gets squeamish hearing about stomach/GI issues, or you're one of those weirdos who thinks girls don't poop, this is not the post for you!*

I know, I know, I suck at this blogging thing anymore. I got all blog famous going to conference after conference, and now the last thing I want to do is sit down and do the very thing that made me famous in the first place.

I kid, I kid.

Between speaking gigs (that sounds so cool), there's been a lot of tests and procedures and doctors, thrown in with a three-day 29th 33rd birthday celebration. After all, a gal's got to celebrate her birthday when her very own ticker tried to make sure she didn't see her 2nd. Suck on that, ticker. Suck. On. That.

The worst thing about lupus is that it can effect any part of the body, and there is virtually little warning. Six months after a normal (well, normal for me with my repaired TOF, terrible for someone with a healthy heart!), another echo showed moderate aortic regurgitation that wasn't there 6 months prior. The culprit- lupus. It's frightening to know that at any moment I could have a seizure, a stroke, a heart attack. Or, I could wake up one morning and be pouring buckets of blood out of my ass.

True story.

Off to the gastroenterologist I went, where I received very little answers, and we wouldn't get them without more tests.

So. Sick. Of. Tests.

First up, the camera capsule endoscopy to check for signs of crohn's disease, colitis, celiacs disease, or any else that could point to the source of my ass bleeding. You swallow a capsule, the size of a large pill, and as it makes its way through your GI tract, it takes and records pictures for the doctor to see any abnormalities.

It's like paparazzi for your small intestine.

Let me start off by saying that at age 33, I can't swallow pills. You would think by now I could take handfuls at a time, but I can't. I'm flawed.

The day before the study I did my bowel prep (4 liters of GoLytely… gross), and shit my brains out til there was nothing left in me. So glamorous, the life I lead.

You know where this is going, I couldn't swallow the capsule. I tried. I REALLY tried. The tech rolled her eyes at me and told me that was $10,000 down the drain, to which I replied, "good thing you're not paying for it."

For the losers like me who can't get the pill down, I would be put to sleep and a doctor would place it through endoscopy, and that was scheduled for 2 weeks away.

In the meantime, I had to see a colorectal surgeon. Yeah, that's a specialty. Why someone would want to spend their days elbows deep in butt holes is beyond me, but I guess someone has to do it.

In walks a handsome, dark haired, blue-eyed man who could have been on the cast of Grey's Anatomy. No, he wasn't an actor, he was the butt hole surgeon. Of course he would be gorgeous, because let's not make this any more uncomfortable (literally and figuratively) than it has to be.

We chat about my health history ("TOF AND lupus?!?!") and what led me to see him, my bloody butt. The inevitable came, he got out a paper drape, told me to undress from the waist down and he would be back with his assistant.

Oh dear.

When they came in, he wasted no time gloving up, lubing up, and sticking two fingers in my rectum. Rectum?!?! Damn near killed 'em!

Ahem.

So handsome doc is digitally assaulting my bum, asssssking me questions, and all I can do is pray to the Butt Hole Gods to keep me from farting, as I will more than likely blow the poor man's hand off, leaving him to never operate again.

No farts. Mission accomplished.

Just when I think the rectal invasion is over, he says he wants to take a look with anoscape. Yep. An anoscope. That's a thing, folks. I told him he needed to buy me a few drinks first if he thought I was going to let him anywhere near my butt again.

And in my anus he scoped (no drinks, what the hell?), and after a ton of pain, he finally said to get dressed, and he would come back in to chat.

Anal fissures. I gots them. Lots of them. They are small, oval tears in the lining of the anus that can cause extreme pain and bleeding with bowel movements. My God, I get sexier by the day. He thinks the cause is due an inflammatory process, such as lupus or some other type of inflammatory bowel disease.  Dr. Butt Hole also said I have a tight sphincter, which made me laugh. All those years thinking I had great, tight buns of steel, turns out it's my sphincter. Womp womp.

I need colorectal surgery, because due to the inflammation and all the imunosupressants I'm on, the fissures will never heal themselves, and result in the continuation of bleeding every time I go to the bathroom, not good for a gal with chronic anemia. Surgery consists of performing biopsies which will likely diagnose any type of inflammatory bowel disease (somewhat common to see an overlap with SLE and colitis, more rare to see SLE and Crohn's), injecting Botox in my butthole to relax the muscles, and a surgical division of the internal sphincter, all with hopes of loosening up my ass a bit, allowing the fissures to heal.

There's a joke there somewhere. I asked BEFORE he put any Botox in my bunghole, if he could inject some in the crows feet around my eyes. Who would have guessed Botox is a wonder drug. No wonder those rich, tight-ass housewives love it so much.

I wanted to get it over with, but the recovery time is about 6-10 weeks, and I have a trip to Chicago for a conference coming up. Probably won't be until the middle of September, which I will recover and then have a much more intense surgery (not on my butthole) not long after. Can't accuse me of being boring.

On Tuesday morning, Brie took me to have the endoscopy and camera capsule placed. I didn't sleep Monday night due to another fun bowel prep, but the thought of a delightful Propofol sleep (I totally get it, Michael Jackson), made up for the explosive ass all night long.

I vaguely remember the CRNA explaining that the tube used to place the camera capsule was much larger than the usual endoscopy tube, that I would have a pretty sore throat for a few days, but I was asleep before I could reply.

Ahhhh, Propfol….

I woke up feeling like I spent hours deep throating Shaquille O'Neil. Holy fuck, did my throat hurt. It still hurts. All the popsicles, ice cream and Sucrets in the world aren't helping. The endoscopy showed a hiatal hernia, which are quite common in lupus patients, but mine is not large enough to need any type of intervention. I'll get the report of the camera capsule (ie- intestinal paparazzi) in a few days.

Yes, it's been an assload of fun up in these parts!

Love you all! <3

Linking up with Kristin

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