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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Friday, August 1, 2014

It's the most wonderful time of the year...



No, it's not Christmas. Today officially kicks off….


THE MONTH OF MARLA!!

It's my birthday month, and anyone who knows me is fully aware that my birthday is my favorite day of the entire year. But why celebrate the birth of yours truly on just one day?? Oh no, I take it to a whole new level and celebrate the entire month. Why not? I think I've earned it.

What is The Month of Marla, you ask? It's is when I indulge in all the Dippin Dots and Mack & Manco's my heart and belly desires, I treat myself to a phenomenal day of shopping for ME (I hope you're ready, Nicole! You have no idea what you're in for!), let loose and celebrate the life and times of ME!

To be honest, the month isn't off to a good start. I had my infusion yesterday, and I feel like hell. Some of my blood counts were really off, so I have a feeling there are some big medication changes in the near future. 

Womp womp. 

That aside, I want to start off my month with some exciting news!! 2 weeks ago, I looked at my Facebook and noticed I was tagged in a picture.


My friend Kelly (that maker of my amazing Luck Fupus tutu) took it upon herself to have that made and put on her car! What the balls, that crazy gal! I was close to falling off my couch, I could not believe what I was seeing. Dafuq was she thinking?!!?!?

But then, I got to thinking…

Why not have a way to decorate your car in a badass way, stir up lupus awareness, AND donate to the lupus walk?

And a fundraiser was born.

Denise, of Fluttering Creations has been gracious enough to donate 40% from every sticker sold to Team Lupalicious for the 2014 walk! I think it's fate that the symbol for lupus is the butterfly, and her company name is Fluttering Creations

BOOM.

So, for my birthday, the best gift I could possibly be showered with is by you showing your support, and purchasing a car decal. And when you put said decal on your car, PUH-PUH-PLEASE take a picture and send it my way! I want a decal in every state in the country!


Here's the link to purchase your very own Luck Fupus #TeamMarla decal

Buy a #TeamMarla decal!

Let's kick off the Month of Marla with an ASSLOAD (that's a lot, my friends) of Lupus Awareness!

Love you all <3

Linking up with Amanda


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Wednesday, July 23, 2014

This is your life… are you who you want to be?



Avid reader, I must confess, I've lost my mojo. Not sure what my deal is, but for someone whose career did a 180 (or came to a complete halt, as the case may be), I am BUSY. Like, CrAZy busy. I'm not complaining, but I look at my (kick ass) planner and just wonder how any of this would be even possible if I were working full time.

It's been a whirlwind of amazing opportunity after amazing opportunity, and somewhere in between there have been SOOO many doctor's appointments, sometimes 2 in one day. I'm exhausted, but still managing to keep on truckin.

You may recall in early June, I participated in a roundtable event, Medical Marketing and Media Leadership Exchange: How can pharma think more like a patient? as the patient voice at the table, bringing perspective and opinions on what I feel pharma is both excelling in and lacking on to be better "patient centric."

The event was hosted by Artcraft Health, and a few weeks ago they reached out and asked me to SPEAK AT THEIR ANNUAL COMPANY MEETING. Yeah, you read that right. The girl with tampons up her nose and who drops f-bombs entirely more than any one person should, was asked to be a guest speaker.

Mind. Blown.

I won't get into the road rage induced anxiety caused by the TWO (separate accidents) over turned tractor trailers I encountered on my 80 mile drive up (and I left two and a half hours early!), or the fact that I wore heels much too high for someone with osteoporosis in her hips and spine (beauty is pain, people!), but rather about my talk. They wanted to know about ME, my experiences and journey, if you will, as a patient. The good, the bad, the ugly. And goodness we know there is a lot of ugly!


This is what I refer to as, "no shame in my game."
See also: ugly.

I was upset I arrived late, but, the show must go on and the meeting was in progress by the time I finally got there. Before I knew it, I was introduced by Marc, the Executive VP and General Manager, and all eyes were on me.

As I said, my talk was about ME. Sometimes, it even blows my mind that I have spent my entire life as a patient, so there was a lot of ground to cover - twenty-nine thirty-two years, to be exact. I have no recollection if I spoke too fast, not loud enough, or if I stuttered every other word (lupus brain!), but every sentence or two, I would look up and meet the eyes of someone, and I was shocked to discover everyone was engrossed in my words. Listening intently on what I had to say, and I can't express how empowering it was for me. 

I said my last sentence, and one by one, they stood on their feet and clapped. A standing ovation. For me. And I'm almost certain there wasn't someone behind me (were you, Shuana?) holding up a cue card that said "APPLAUSE."


Again, I was floored. I wasn't sure if I was supposed to bow, curtsey, or do my best Kate Middleton wave. Instead, I sat there like a deer in headlights, a big grin on my face and blushing profusely!

There was time for questions and answers, and I expected maybe one question. Well, color me stunned, there must have been at least 10 questions. Insightful questions that could have only been asked if one truly listened to what I had to say. I think my favorite question asked was how I keep track of everything, to which I laughed and replied, "I have no idea."

Jokes aside, I have a very good planner and an OCD method of recording any new symptoms and/or questions for my physicians, all 9 of them and counting. That said, it gets rather daunting.

A woman about my age raised her hand and told me her best friend was recently diagnosed lupus, and has spent a lot of time extremely ill and in and out of the hospital. She asked if she could pass along my blog to her friend.

And that right there made it all worth it, to be able to reach that one person in my same situation. This shitty disease has taken away so much from me, so many experiences, and has rewritten every single chapter in my adult life. Am I bitter? Of course, to a point, yes, I'm human. I don't ever think anyone has it "sooooo much easier," but, I get green around the edges when I see someone enjoying all the things in life that I wanted for myself. But there's no point to dwell, because I can't change anything.

So, I find myself making light of all of this. To make jokes (hello, tampons up the nose.. are funny), to empower, to educate, to have a hand in making changes, to inspire, to share my story to anyone crazy enough to listen, and to show that is all doesn't have to be so bad.

To everyone at Artcraft Health, thank you for allowing me to be a part of your meeting, I consider it a huge honor, and I hope I was able to bring insight on how to better reach the patient. Marc, thank you for being so incredibly welcoming. Shauna, thank you for having the confidence in me to get up and do this. And the chocolate, where can I get that chocolate? Katie and Lynn, I'm certain you had a hand in this. Thank you.

Love you all!
Linking up with Kathy, SHauna, Candra and Liz

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Wednesday, July 9, 2014

And all these little things...



What day is it? Hump Daaaaaaaay!

Never gets old.

Yes, I'm using a lyrics from a One Direction song today… yipes. But, my newest adorable musical ginger crush, Ed Sheeran, wrote this particular song, which is how I justified the use of this these lyrics.

Now that that's all cleared up.

So, days have been going by in blur, and I forgot to promote the hell out of the fact that I'm co-hosting a linkup today. I suck. The oh so lovely Candra from Camo and Lipstick (seriously love that) asked me to join her today. Canda is who I expect I'd be if I lived down south, a fine mix of girly-girl and rough and tumble. Doesn't mind getting dirty, but wears red lipstick doing it. My kind of gal.

She came up with this idea for a Wednesday link-up called "The Little Things Wednesday"

"The Little Things Wednesday" taking a horrible situation and looking on the bright side. Woke up late, salt in your coffee, favorite skirt ripped, seems like a horrible day but then someone smiles at you on your way to work and suddenly you remember it's the little things that matter most. Link up with us and share some of your little things this week.

When Candra asked if I wanted to co-host, I knew I had to jump on board. 

I'm going to start with the obvious. When I was diagnosed with lupus, it rocked my world, and changed every single aspect of my life. Lupus took my career, my ability to have children, put a huge dent in my brand new marriage, destroyed friendships…I could go on and on. But, without lupus and all the terrible things that have come with it, it led me to starting this blog (with a TON of convincing from Brie, of course). This blog has helped me learn more about myself, more about lupus, has connected me to SO many amazing people, and blog friends have turned into REAL LIFE friends (that's you Steph & Gwen Coco!!). This blog of mine is leading me to opportunities and open doors that I never thought possible (thanks WEGO Health!), and I can't wait to see what it continues to lead to.


Yes, lupus fucking sucks. If I had it my way, this shit would be gone. But, every now and then, you have to take a step back and realize, it's not all so bad.

Love you all!

Now grab the button and link up, bitches!!


Camo & Lipstick


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