Monday, September 22, 2014

Payin' anything to roll the dice, just one more time...



Happy Fall, my loves! This is my favorite time of the year, having the windows open and snuggling under the covers at night (Linky Cat and Matzo Ball snuggle more when it gets chilly), tank tops get traded in for hoodies and sweaters, flip flops become Uggs, and pumpkin spice EVERYTHING. Yep, I'm that girl.

This weekend was mostly spent getting my lazy on. Saturday was my first post-op venture (not counting a doctor's appointment last Wednesday), out of the house, and we went to a wine festival. We've had these tickets since the end of February, obviously months before I knew I'd be having surgery the week before. I wouldn't have gone had we not had the tickets, but I've been looking forward to this for over 6 months. In February we waited in line one cold Saturday morning to score tickets for one of the VIP tents, which were limited. Having the tent was the only way I could have gone, as it was the perfect way for me to enjoy the day, and still be lupus safe in the shade. I had a great time with my friends, loved being out of the house, and got to try pumpkin spice wine. Yep.





I've been home for two weeks already, but I'm just now getting around to writing about my Chicago trip. I went out there for the Adult Congenital Heart Association's 7th annual conference, being able to be there on both a professional and personal level. I met a number of ACHD physicians and nurses, as well as over 100+ CHD survivors. Since all this lupus nonsense started, sometimes I almost forget I'm part of this elite group. It's scary that my heart defect that required 4 heart surgeries is on the back burner compared to all the other medical issues I deal with these days.

Since I'm not currently working, I feel like my nursing skills and knowledge keep slipping further and further away from me. When I attend conferences, I try to soak up ALL THE KNOWLEDGE like a sponge. What I love about medicine is that there is ALWAYS something new to learn every single day, and I'm grateful I was able to take away a lot from this conference.

I always find it disheartening (no pun intended), the broadness of the knowledge base ACHDers have of their defect and long-term issues that may arise. My parents made certain that even at a young age I knew I had a defect and its' name, that I didn't have pulse or blood pressure in my right arm (true story), my limits in gym class/playing sports, etc... All of my cardiologists believed education was imperitive, and I remember the 1st time I met my cardiologist as an adolescent, he showed me a picture of a Tet heart and told me I needed to know my defect. They were all especially cognizant in reminding both me and my parents, that even though my heart was good for the time being, I would eventually need open-heart surgery for a pulmonary valve replacement, and that other issues could come up, such as my developing cardiac arrhythmias.

I guess I always took for granted that my parents and all my doctors made sure I had the proper education (thank you Dr. F., Dr. W., and Dr. D-squared!), and maybe I was na├»ve in thinking all pediatric cardiologists focused on education for each patient at some point (and for those CHDers with cognitive deficits, then educating the parents). While sitting in a patient breakout session, I almost fell out of the chair hearing over and over how many knew nothing about their defect, how their parents never really asked questions and sent them off to the OR just wanting the surgeon to "fix" them, and thinking they never needed lifelong cardiac monitoring.

I was shocked that a lot of them hated saying their defect was "fixed," because to them that meant cured. I always thought of my heart like a car; if something on you car breaks, you take it and get it fixed. But eventually, that part will more than likely break and need to be fixed again. The same with my heart- it was broken, and Dr. Norwood took me to the shop (err.. operating room) and fixed it. But, with wear and tear and over time, I'll need it to be fixed again. While of course the thought of knowing I'll eventually need another heart surgery makes me anxious at times, I can't imagine what it must have been like of those who truly thought they were "cured," and learned they needed a valve replacement. Scary indeed.

Most of my time was spent listening to lectures for the medical professionals, getting the ins on what's up and coming in the ACHD surgical/interventional field. Amazing stuff, I tell you. It's pretty cool knowing that me and all my "Zipper Sisters" (and brothers!) are at the forefront, and basically the guinea pigs of ACHD care and interventions. Some may not like to see it that way, but I know that how we are surgically and medically managed will play a huge role for even greater long-term survival in the future.

What other way to end the event with a bang, then by holding a Gala?! Doesn't that sound so fancy? I had never been to a Gala before, and was pretty damn excited.



 Roslyn, Christy and I are CHD survivors and cardiac ICU nurses! Talk about coming around full circle! #zippersisters

Pink is more our color, wouldn't you say?

After cocktail hour and dinner was served, all of the CHD survivors were called up to the dance floor for a group picture. I looked around at all of us and became pretty emotional (it doesn't take much, I'm a softie). Somehow, we all managed to beat some pretty terrible odds, and that a mixture of desperation from our parents, dedication from some of the most talented doctors and surgeons in the world, and a general bad ass-ness and fight to survive that's been instilled in all of us is why we were able to be there on that dance floor. 

Front and center, the only one looking at my camera. Typical.
#ZipperSisters #survivors #CHD 

And then the DJ blasted the intro to Don't Stop Believing, and we all squealed, and clapped our hands and danced together. There are a few nights that will always stand out in my adult life, and this will forever be one of them. We all had different journeys (ha ha! Journey!), some harder than others, but in those few moments, none of it mattered. I've never been so proud to be a part of something so big.


For more information on the Adult Congenital Heart Association visit www.achaheart.org

Thursday, September 18, 2014

Talk about bum cakes...



*It's 2am and I'm having awful butt pain. And for some reason Blogger ate this blog post and it didn't save, so I'm using this time to rewrite what was already a genius piece of literary art. I hate you, Blogger.

"It's an easy surgery," he said. "You'll feel so much better, " he said. Famous last words from Dr. Butt Hole.

5 days out from my quick operation, and I'm still extremely sore. The surgeon had to remove a lot of tissue that was swollen and inflamed, took some biopsies from my sigmoid colon, and Botoxed that bad boy (or girl) rectum up. Have I endured much, much worse? Oh, no doubt. But I have never been SO aware of my ass before.

I was going to attempt to rewrite the post, but since I have the attention span of a gnat and have spent the last 25 minutes perusing the interwebs, I will do a play-by-play timeline instead.

Friday, September 12, 2014

2:30am Alarm goes off. What the fuck? So confused.
2:35am Stumble to bathroom and self-administer Fleets enema prep #1
2:40am Frantically run to toilet and giggle at all fart noises and contents that ensue
3:30am Go all enema of the state on myself once again

How I think I look…

How I really look…
Sadly, this is album cover model's most recent mugshot. Perhaps she's the victim of too many self-administered enemas.

3:35am Frantically run to toilet and giggle at all fart noises and contents that ensue
3:55am Shower because I want to be so fresh and so clean clean for Dr. Butt Hole #commoncourtesy
4:05am Wake up Steve
4:10am Wake up Steve
4:15am Wake up Steve
4:30am Leave for hospital
5:00am Check-in at hospital

I have had multiple surgeries and procedures in my adult life, and this was by far the best nursing care I've ever received. Everyone was friendly and personable, hit up the Purell before ever coming near me, listened when I said DO NOT put IV's in my hand, didn't kick me out when it was obvious I wasn't quite ready to be discharged, stayed on top of my pain medication… it was a great experience. Nursing tends to be a very dog-eat-dog profession, and more often you hear criticism before words of praise (I know ALL my nursing colleagues can agree with me there), so I made it a point to contact the nurse manager and tell her what a wonderful experience I had. Plus, this arrived in the mail yesterday…

Yes, I still get excited receiving cards in the mail!

5:35am Put my John Hancock on a bazillion forms
6:00am Doctors and CRNAs come in and out asking the same questions over and over
6:35am Stress dose of steroids. Feel face get fatter instantly (I kid! I kid!)
6:45am Get on stretcher and get nice dose of Versed from the CRNA
6:50am Getting prepped in the OR
7:00am Face down, ass….. asleep

My post-op experience was nothing short of fantastic. OK, well minus the chopped up butthole, but the nurses stayed on top of my pain medications, and I never had to wait more than a few minutes after requesting them. And good Lord, did they keep me well medication. Fentanyl and Dilaudid and Ketorolac, oh my!!! I felt good.

Left: Pre-op
Right: Post-op Whhhhhhheeeeeeee pain meds! (dafuq is with that right eye?)

Before this surgery, I never realized how much I use my ass to sit. In the car, on the toilet, in a chair, on the couch, on the floor. Well I tell you, once you've had someone go all ginsu on your rectum, you become VERY aware. 

Another thing I took for granted is how "regular" all my immunosuppressive medications keep me. After many days of not going, consuming mass quantities of Mirilax, Metamucil, Colace, and coffee, then finally resorting to once again Fleeting myself, I FINALLY went!



Holy. Mother. Of. God. It hurt something awful, and there may have been a few screams and some tears. I'm certain my family and friends in California heard the cries of terror, and just writing about it causes me pain. I will never be the same again.  But once again, in the wise words of Desitiny's Child… I'm a survivor!


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Friday, September 12, 2014

Face down, ass up...



...that's the way we like to - anyway. This will be in your head all day long. You're welcome.

Face down, ass up is the exact position I am currently in as you read this. That's right, the tall, dark and handsome Dr. ButtHole currently has his hands up my chocolate starfish doing God only knows what with Botox and a scalpel. I am so very glad I will be in a general anesthesia slumber, as I have this fear that one of the OR techs will use my ass cheeks as bongos.

At least it's not the lithotomy position. 

I honestly don't know how long I'll be out of commission, but rumor has it that I'll be in a helluva lot of pain the first week or two. I hear colace and percoset will be my new BFF's.

I have much updating to do to this ole blog of mine, so many conferences to chat about…. can we say slacker? I'll be laid up for quite some time, and I can write my little sphincter off. Or what's left of it, anyway.

I ask that you pray the good surgeon is gentle to my behind, and hope for a speedy recovery! And with that I leave you some fun links to support me and the entire lupus community!

Click here to donate to Team Lupalicious for the 2014 Philadelphia Lupus Loop

Click here to purchase the trilogy Keeper of the Water written by my friend Kevin George. He is generously donating September book sale proceeds to Team Lupalicious

Click here to order Luck Fupus #TeamMarla car decals!

Love you all and please pray for my hiney hole! <3

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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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