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'Cause even though when times got rough, you never turned away...

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Happy Friday Eve, bitches!

As you read this, I'm getting poison infused directly into my superior vena cava. Do I know how to have a good time, or what? This business of having lupus is a blast.

Do you all remember back in January when I was bugging you every single day to endorse me for the Wego Health Hilarious Health Activist Awards? It looks like all that begging bugging  paid off, because a few weeks ago I was contacted by someone at Wego Health that I was chosen as a finalist!!



Obviously I'm joking around (about the being popular thing, I AM a finalist!), I was actually quite shocked. Some of the writers who were nominated are professional, published writers; they don't end sentences with prepositions, and they certainly know the proper use of semicolons (did I get that one right?).

Little old me throws around more f-bombs than probably deemed necessary, but, I guess that's all part of this keepin' it real package. I don't sugar coat. When I'm feeling good, you know it, and when I'm feeling bad... you fucking know it.

I was so shocked to be nominated in the first place (who was it????), and to have made it as a finalist when there were SO many amazing and inspiring entries.. well, that completely threw me for a loop.

Get it? Loop. Lupus.

Bueller?

Via

The winners will be announced in a few weeks, so I will be keeping you updated! Again, thank you to those who nominated me, and the many who endorsed the nominations- there were over 300! Thank you to Wego Health who selected me as a finalist. Making it this far is an honor in and of itself!

Thank you! Thank you!!!



I'm going back to my poison. Here's one of Philly's FINEST! A little Boyz II Men bringing you into Throwback Thursday. Love you all <3





Shining like a diamond, rolling with the dice...

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TGIF! Remember those days when Urkel and Uncle Jesse would bring you into the weekends? Well, now you have me!


Anywho, before I get started, I want to give a big Luck Fupus Happy Birthday to my handsome husband, Steve! Happy Birthday, baby!

Our last time celebrating his birthday before I got really sick, in 2012. Maybe it was the dark hair phase that made me sick...



A few years ago, Steve was obsessed with the game Scramble With Friends. Not only was he obsessed, but he was so freaking good at it. Amazing, actually. In the time it took me to find a word, he had found 50. People he played accused him of cheating, so he made a You Tube video to prove he was legit. Said You Tube video went viral, made it on Reddit and was talked about on a Philadelphia morning radio show. 

My favorite part of the whole thing was reading comments people left on the video. Hysterical.

When the makers of the app contacted him to be in some worldwide competition (I kid you not), I made fun of him. When the official Scramble With Friends t-shirt showed up on our doorstep, I made fun of him relentlessly. I may have taken a few insults from some of those You Tube comments.

I kid, I kid.

Maybe.

Two weeks ago, I heard the UPS guy drop a package at the door, and I assumed it was my new Erin Condren planner. Oh, was I wrong...





That's right, for being a Hilarious Health Activist finalist, Wego Health sent me a party in a box, complete with a t-shirt and giant button like my New Kids On The Block days circa 1990. I LOVE it!

I've got the right stuff. Baby.

Thank you Wego Health, you made this gal's day!

Have a Nice Day by Bon Jovi on Grooveshark

Linking up with WhitneyJennieLauren Elizabeth

It's nausea, oh, nausea...

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Hey hey, bitches!

As I write this, a bartender on Bar Rescue just told another one to "eat a dick." All class, baby.

Have you adjusted to losing an hour from your precious weekend? Steve and I didn't get to celebrate his birthday the way we had planned, I was bummed, but that's the way the chemo crumbles.

Last Thursday was infusion número dos at McDicky's office, the heated seat was calling my name. I get pre-medicated with a huge dose of IV steroids, Benedryl, and Zofran. There was a note from McDicky in my chart for the nurses to not administer any, but to have Benedryl on stand by. His rationale was why give me extra meds if I don't need them?  You can imagine my nerves, but the nurses had it drawn up ready to go.

Usually I'm all


from the Benedryl, and it was nice to have a clear head for a change. I took a most unflattering selfie wearing my WEGO Health finalist button. Because I'm cool like that.



Due to the massive dose of steroids, I always feel good the weekend after my infusion, good enough to go out and do stuff (100mg solumedrol = 90 billion bottles of 5 Hour Energy), and it isn't until Sunday that I feel it catch up to me. Unless I don't get said massive dose of steroids, and then I am slammed with nausea/fatigue I was not at all prepared for. What sucks even harder is when you realize at 3:45 on Friday afternoon that there are no more refills on your Zofran.

We had to cancel our dinner plans for Steve's birthday on Saturday night. Balls.

Tuesday morning finds me still nauseas, but with a full bottle of Zofran. And that's all I got.

<3

Just a day, just an ordinary day...

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Hello strangers. Last week was another bad week for me. The only day I left the house was Wednesday, for a doctor's appointment. I'm quite certain if it weren't for the appointment, I would have never left the house.

I've been taking an anti-depressant for a few years now, because, not only does it help with my depression/anxiety, it relieves some of my joint pain. Kills two birds with one stone. It took awhile to find the right one, and when I finally had, my insurance company stopped covering it last October after being on it for well over a year.

At that same time is when McDicky took over my care, he weaned me off and switched me to a medication he saw much better results with in his lupus patients. It was covered by my insurance, and he was right; it worked so much better than my previous anti-depressant. I noticed a decline in my joint pain and a huge elevation in my mood. 

Why is that McDicky always right?

Two weeks ago, I called my pharmacy to get a refill and was told my insurance would no longer pay for that medication. Awesome. McDicky wrote a letter and called the insurance company, yet they still refused. Seriously, what the hell is the point of going to the damn doctors if the insurance company is going to refuse to pay for prescribed medications? Do they think I want to have to take an anti-depressant? It drives me insane, how are people supposed to get better???

I ran out, stopped cold turkey (I couldn't afford the almost $700/month price tag), and crashed. 

I crashed hard.

It took me a day to realize that I was withdrawing from the medication. I'm talking head spinning, nausea/diarrhea, fatigue, aches, mood swings, bizarre, vivid dreams, and so much more. It wasn't quite as dramatic as Dr. Drew's Sober House, but holy hell, it was rough. I'm better this week, but I still don't feel quite right. I've been prescribed something else, and now I'm waiting patiently for it to get through my system and kick in.

It's always something...

*****

Emily from Words I Wheel By is a fantastic blogger I was connected with through the NE Bloggers Network. Emily was born with Larsen's Syndrome, a rare neurologic disorder that affects her bones and joints, and due to her disease, she is wheel chair bound. I should mention that when Emily was 10, she was on Sesame Street. Jealous doesn't even begin to describe it... 

I digress.

A great deal of her time is spent advocating for the disabled, not only through her blog, but writing for other online publications. Emily recently received her driver's license, but unfortunately, does not have the funds to purchase a van adapted to her needs.

This is where you come in, folks. Emily entered a "Local Heroes" contest to win a wheelchair accessible vehicle (which can cost upward of $70,000), sponsored by the National Mobility Equipment Dealers Association. PLEASE, pretty please, go to her link and vote so she can win a vehicle, and gain some independence! C'mon, you all know how much of a bummer it was to have to rely on other people to get around. DO IT!


*****

A happy HAPPY Birthday to my blog turned real-life Philly friend, Steph from Life According to Steph! Her birthday was on Saturday, but like me she celebrates her birthday the entire month! Stop by and wish her a happy birthday!

*****

Speaking of birthdays, a happy HAPPY birthday to my second husband, Adam Levine. Can't wait to celebrate!


*****

April is just around the corner, which means it's almost time for another spending freeze with Steph. Be sure to stay tuned for details and the date we will link up our results!

*****

My mom and dad have two cats, Heckle and Jeckle, brothers from the same litter. Last week Jeckle was diagnosed with metastatic intestinal cancer, and unfortunately doesn't have a lot of time left. My parents are devastated, and my heart is breaking for them. Please say a little prayer that Jeckle's days are pain free and full of snuggles. 

*****

Where is that plane? I can't begin to imagine the roller coaster of emotions the family of the passengers and crew are experiencing. Day 11, and it's all still a mystery. It's hard to believe that something like this can happen in 2014.

I see a collaboration with Jack Bauer and Raymond Reddington. If anyone can find that plane, it's those two. 

*****

And lastly, I've mentioned a million a few times that I was chosen as a WEGO Health Hilarious Health Activist finalist. I thought it was narrowed down to 10-20 finalists, but I realized there are 7 of us in my category. It's such an honor to be recognized alongside the other fantastic hilarious health activists. Tune in Friday at noon (12pm EST) to WEGO Health when the winner is announced LIVE! Good luck to all my fellow finalists!!!

Crazy hair, don't care.
Love you all.

I'm more than a bird, I'm more than a plane...

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Happy Monday, loves!

This weekend was filled with emotional highs and lows. Every time I felt my spirits lift, I would hear something that brought me back down. That's certainly a way to stay grounded.

Heaven received a real-life super hero yesterday, and I know it's now a much better place. I've taken care of so many amazing kids over the years, but there are truly special ones that find a spot in your heart. It was hard to miss the monitors, the IV's pumping medicine through his veins 24/7, his tiny little face covered by the mask supplying nitric to keep the arteries to his lungs open, the hospital room that became home for almost 3 years. But, through all of that came a smile so sweet, an infectious laugh that warmed your heart, and a spirit so strong it gave Superman a run for his money.

My heart aches for his family, who did everything and more in their power, trusted my colleagues implicitly and were grateful for their expertise, and who never once thought they were entitled to anything. Sometimes I don't know where they found the strength to keep going, but I hope they have comfort in knowing he is at peace and reuniting with other heart warriors.

I'm thankful to have known him, I hope I made some type of impact on his much too short life, as he has certainly made an impact on mine.

Rest well, sweet boy.

Spiderman didn't realize he was face-to-face with a super hero (far right)

For information on pulmonary hypertension, go here

I hate segueing right into this, but I do have something exciting to share.

Last Friday afternoon, I was named the 2014 Wego Health Hilarious Health Activist! I'm still in shock as I was up against some extremely inspiring activists, who all deserved to win. Thank you again to WEGO Health for this honor!!

You can watch the ceremony here



Lately I have been feeling blah about my blog, questioning if I was doing enough and if I wanted to change up the format. But, this was exactly the swift kick in the ass I needed to realize that I'm reaching out to so many, and to keep doing what I am doing.

THANK YOU to the judges from WEGO Health for seeing something in me, and thanks to all of you for your continued support!

Congrats to the other finalists, and to the winners of all the other categories!

Love you all <3

Monday, Monday...

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Happy Monday, my loves.

I just tried to do oil pulling, swishing coconut oil in your mouth for 20 minutes to draw out toxins. Apparently, it's been around since before Jesus, but I keep reading that it's all the rage lately. I figure with the 27 pills I take a day, my blood is chock full of toxins, so I gave it a whirl.

I lasted 20 seconds before the texture made me gag and I spit it up all over myself. Classy broad I is.

And now I have a hot cup of caffeinated deliciousness beside me. All is right in the world.



For someone who just won a Major Award, I haven't been much of a good blogger. It took much longer to get used to the changes in my medications, and it figures now that I'm finally feeling normal (normal for me, people), I have chemo on Thursday. What a vicious circle.

Bastards.

My phone just beeped that the 20 minutes is up. Victory is mine.

My new health insurance has an annual out-of-pocket maximum, which I met on January 6th. Is that impressive or what? Since it was one chemo session that met that amount instead of many appointments over the year, we just got slammed with one gigundo (that's a real unit of measurement, folks) medical bill.

That's the cost of ONE (1) infusion, just the medication, not counting access kit for my port, needle, IV tubing, fluids, pre-meds, hospital/nurse charge. No, that is not what we owe, but that gives you an idea of how expensive chronic illnesses can be. That comes to $89k+ for the year. For one medication. Scary stuff. But luckily, they put that nice, happy smiling doctor up in the corner of the bill. How sweet.

With that said, tomorrow starts the April Wallet Watch (April 1-30) with myself and Steph from Life According to Steph. Remember I did the January Spending Freeze and September Spending Freeze? I planned to do a total freeze again, but, looking over my calendar for the month, it doesn't seem feasible. So, with the exception of already budgeted scheduled plans, there will be no spending. No trips to Target, unless it's for food or running of the household items, no breakfast/lunch dates with Brie and PJ.  I'll use the drive-thru to pick up prescriptions at Rite Aid so I'm not tempted by the makeup displays and Cadbury Cream Eggs. No online purchases, again, unless it's for running of the household items. (Amazon Prime to deliver heavy containers of kitty litter... score!)

I am allowing myself:
1. 1 Dunkin Donuts coffee per week for appointments with my therapist, using my weekly $0.49 coupon from Facebook. Problems are much easier to talk about when they taste like Dunkin Donuts.
2. The use of Groupons/Living Social that have already been purchased.
3. I can spend money I got back from Ebates on going out for Flyers playoff games.

Be realistic with the rules you set. If you know you cannot live without your Starbucks mocha choca latta ya ya for your 8am Thursday morning work meetings, then factor that into your budget. Don't set yourself up to fail.

Then, come back to Steph or myself on May 6th, grab the button, and link up! Can't wait to see everyone's results! Happy $aving!!!


Life According to Steph

I have doctor's appointments Tuesday and Wednesday, chemo on Thursday, so I'm not sure how much of an online presence I will have this week. I thought there was a Wego Health blog challenge for the month of April, but there is no information up on their site yet. I have failed both challenges I've tried in the past miserably, so if one does in fact start tomorrow, I will have at it.

Love you all

Oh, I'm feeling your heartbeat...

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Hi my loves.

Today starts the Health Activist Writer's Month Challenge for Wego Health, and I've decided to participate. The thought of blogging every day for an entire month doesn't seem possible, but, I'm going to try. REALLY try. I attempted it in November 2012, and I think I got up to day 8. So, if I make it to day 9 this time around, I'll consider it a success.

Each day has been given a prompt, and today's is Laughter is the best medicine.

It's funny that this is first prompt, because in my profile page for the Hilarious Health Activist award, I wrote that laughter was the best medicine. And dammit, I'm right! I'll choose a good chuckle over methotrexate any day!

The prompt says in honor of April Fool's Day (no 'I'm pregnant' jokes please. That shit wasn't funny even before I knew my baby making factory would be out-of-order for life), tell a funny story or a joke.

Picture it. Pennsauken. 1996.

It was a particularly cold and windy fall afternoon at my high school football game, not a good combination for a color guard member of the marching band. Laugh all you want, twirling and tossing a metal flagpole in the cold and wind takes mad skills.


I remember being utterly exhausted and having a hard time getting air in, but, the show must go on, and I pushed through the rest of our halftime show. By the time it was finished, I was spent, gasping for air and my heart pounding out of my chest.

Next thing I know, I'm in the back of an ambulance with an oxygen mask on my face, the band director, Mr. Webster by my side, on our way to the local hospital. This was way before the age of cell phones, and couldn't get a hold of my parents, but someone got a hold of Brie, and she met us at the ER.

After all my usual tests, we were waiting to see the cardiologist, Mr. Webster and Brie were doing their best to keep my entertained.

And then he walked in; McDreamy before there ever was a McDreamy.

And my heart monitor went...

beep. beep. beep. beepbeepbeepBEEPBEEPBEEPBEEPBEEPBEEPBEEP

At the exact same time, both Brie and Mr. Webster yelled, "MARLA!"

Brie loves telling that story, and the few times I've been to the ER since then (same hospital where I was finally diagnosed with lupus 12 years later), I always looked for him.

I always laugh when I think of that, and I'm sharing this today because the endocrinologist I have an appointment with in a few hours is quite easy on the eyes. I can't help but wonder if the same thing would happen.

Love you all.



Clouds bring the f-stop blues...

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Hi my loves,

Today is Day 2 of the Health Activist Writer's Month Challenege

Today's Prompt
Wordless Wednesday


Linking up with Kathy& Shanna

You shoot me down, but I won't fall...

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Happy Friday Eve!

In a little bit, I'm leaving to go get my chemo and then see McDicky. I really want him to lower my steroid, but I have a feeling I will be brutally rebuffed. The inside of my nose and mouth are covered in sores (no, it's not herpes! Oral and nasal ulcers are one of the thousand annoying things about lupus), which is a sign the disease is quite active.

Boo to that, I say!

Today brings us to Day 3 of the Health Activist Writer's Challenge

Today's Prompt
Keep Calm & Carry On
Make your own poster



Not my best work, but it gets the point across.

Love you all <3

Made my skin a little bit thicker...

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Happy Friday!

I'm quite late getting this out, and it took a lot of strength to get out of bed. Yesterday's infusion knocked me on my ass, and to top it off, my Linky Cat has a bad bladder/kidney infection. Between my throwing up and his peeing everywhere, it's not a pretty sight in my house this morning.

But, I knew I didn't want to fail the blog challenge just yet.

Today is Day 4 of the Health Activist Writer's Challenge

Today's Prompt
Theme song
Imagine your health focus or blog is getting its own theme song.

So technically, I'm supposed to come up with lyrics, but that's not happening today. So, I leave you with a song by one of my favorite singers that has always been one of my Kick Some Ass anthems!

Luck you, Fupus.


Love you all

'Cause I'm bleeding out...

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Happy Hump Day, strangers!

I must confess, I failed the WEGO Health Blog Month Challenge. But, since I haven't written since last Friday, you already knew that. These last few days have been crazy. CrAzY.

Last Thursday I had my infusion and appointment with McDicky. Due to his douchebaggy type A control freak personality, there is a Quest lab right in his office. This way, he knows all the tests are ran exactly how he wants them done. Different labs don't always run tests the same, which can sometimes lead to skewed results. This works out for me since the nurse can draw blood directly from the line when she accesses my port. Happy veins, happy Marla!

I curled up in the heated-massage chair with a blanket, while poison dripped into my superior vena cava. Any infusion patient seeing the doctor or NP that day is allowed to wait in the infusion room, even if the infusion is complete. So even though I had to wait over an hour, my feet were up, my buns toasty, and my back massaged. Not too bad of a gig.

McDicky lowered my steroid!!! I'm on a maintenance dose of 6 mg of methylprednisolone (equal to 7.5mg of prednisone), and this is the first time in almost 18 months I've been on a dose this small!

Happy happy joy joy, indeed!

On the drive home, my nose started bleeding (luckily I had napkins in the car), eventually it stopped and I forgot about it.

Early Friday morning I received a call from one of the nurses in McDicky's office; my white blood cell count was 2.6 and my absolute neutrophil count was 270. That's pretty freaking low. Like, I want to be the Boy in the Bubble so as not to catch all the nasty germs, low.  I was advised to stop taking my methotrexate and imuran immediately, and repeat my blood work in another 3 weeks.

I spent pretty much all of the weekend in bed or on the couch, had a few bloody noses, but again, didn't think much of it.

Monday I went to kiss Steve goodbye when he left for work, and he had this face headed straight for his lips...


He was like, "Mar, your face!" Certainly not what you want to hear from your husband first thing in the morning. Blood all over my face.

Blood all over the sheets, comforter and pillowcase...


Cleaned up and went back to sleep for an hour or two, a call from Brie woke me up. Her husband Pete is an ER nurse, and even though I wasn't bleeding in that moment, suggested I go to an ER.

Yeah sure, just what I want to do on a Monday.

Brie was on her way down to pick something up from my house, so I grabbed a quick shower. I was sitting on my bed, when I sneezed and felt a giant clot come shooting out my nose. Within seconds, blood was pouring out my nose. I'm a little crazy (I won't post them, it looked like a scene from CSI), started snapping pictures and sent them to Pete (with a wad of tissues clamping my nose shut). I managed to get dressed and not get a drop of blood on the carpet! BOOM!

Brie came in and off to the ER we went. It slowed down on the way there, and by the time we got there, the bleeding was minimal. 

I got registered, and we were taken back to the fast track area. While waiting for someone to see me, an elderly woman next to us kept everyone amused. She reminded us of Mom-Mom, well-dressed, full makeup, and sharp tongued. She had the entire room cracking up. We were sad to see her go home.

The nurse came in, placed an IV and drew some labs, then a Physician's Assistant (PA) student came in to assess me and get my health history. Brie and I, always the mature ones, could not stop laughing. Everything she asked made Brie giggle, and the poor girl used about 10 pages in her notebook to get down my entire history. She was pretty excited to hear my heart murmur, and I still wasn't bleeding at the time, so she went off to talk to the PA.

Then the flood gates opened, and blood started pouring out of my nose again. The PA came in, looked in my ears and throat, and determined the bleed was high up in my nasal passage.

For all you Sex & The City fans, remember when Steve walked in on Miranda and Robert the doctor getting it on, he smacked his face on the wall, and Robert shoved a tampon up his nose? 



Yep, turns out that's basically what they do in the ER. I just didn't have the luxury of a hot, practically naked doctor doing the honors. And, while the Rhino Rocket resembled a tampon, it has plastic tubing attached to inject air into it once it's inserted. The pressure of the air against the nasal cavity walls stop the bleed.


I am happy to report that after years of being relentlessly teased for my big nose, the PA couldn't get the 2 larger sized rockets in far enough, and she had to go with the smallest size. I was thrilled! Then, I sneezed and blood managed to splatter all over the curtain 3 feet away. Everyone was impressed.

I can't begin to describe how uncomfortable this felt. So. Much. Pressure. 

And when the right nostril began to drip blood, the PA decided to remove the left one, and insert packing in both bloody nostrils. That shit hurt. My eyes teared up and my head instantly began to pound. 

The results of the blood tests came back, my PT/PTT were normal, my hemoglobin and hematocrit were normal (not sure how, it looked like a lost a ton of blood), and though my platelets were low, they weren't low enough to cause spontaneous bleeding. I was told to see an ear/nose/throat specialist on Wednesday to remove the packing and follow up with my hematologist to look further into the neutropenia.

Finally home.

I'm a walking ad for Tampax

There are no words to describe how miserable I've been, literally counting the minutes til the ENT appointment on Wednesday. Just like regular tampons can cause toxic shock syndrome, Rhino Rockets can, too, and now I'm on antibiotics for a week. I learned how much I've taken eating and drinking for granted, as it is damn near impossible when there are two giant tampons shoved up your nasal cavity tickling your frontal lobe.

Last night I was sitting on the couch, watching TV, minding my own business, when I sneezed. Don't you know those damn Rhino Rockets came shooting out my nose. Holy fuck, it hurt. Cue the tears and the panic. And with tampons dangling from my cheeks, instead of asking Steve if I was bleeding, the first thing out of my mouth was "did my nose go back to normal?!?!?!?"

It did. Phew!

Miraculously, there was no blood, but I've been so nervous making any sudden movements or doing vigorous activity will dislodge the clots, and I'll start bleeding heavily again.



I went from having no doctor's appointments this week to having 3. And that, my friends, is why I failed the WEGO Health blog challenge.

Linking up with Kathy and Shanna

I've been wondering if all the things I've seen were real...

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Oh, heeeeeey! No, you don't have to adjust your computer screen, it really is me blogging after an almost 3 week hiatus. I want to thank all of you for the sweet emails checking in when you noticed my absence. It meant a lot.

For my first piece of business, how about the badass makeover on the blog? Through the beautiful and hilarious Lo from Our Crazy Ever After, (quite possibly my Midwest sister from another mister), I was able to find the amazing and uber talented Tia G from Hands on, Pants Off (best blog name, ever). During a late night bout of insomnia, I was stalking perusing Tia's blog, and happily discovered she does blog design.

In the beginning of the year I was working with an awesome gal to design my blog, but, she found herself dealing with some tough, and couldn't finish the design (full refund given, no hard feelings. Family first). I LOVED what she done up to that point, and was so bummed that I was left with part of a draft and broken dreams.

And enter Tia.

I sent her the draft, she worked her graphic design magic coming up with the blog design my dreams were made of. That's a real picture of yours truly, my real tattoo, sitting at my real vanity, with only 1 chin (fucking prednisone) donning my cute lupus rash. Ahhh, the wonders of Photoshop.

I get giddy when I look at my blog, so SO happy with the end result. I mean, scars under each sidebar title? Pure genius. So, my Lo-love, thank you for bringing Tia and I together through the wonderful world of nose tampons and infertility. Only you. And Tia, thank you for one badass blog design. I shall be sending anyone who asks your way! <3

It's been quite some time since having the roller coaster of emotions I am currently experiencing; Many commitments forgotten and lots plans changed recently. Not how I usually roll, but sometimes, things take precedence over others.

In the past few weeks my mother-in-law was in the hospital, a good friend in a car accident, a cousin had surgery for cancer, both my parents sick on top of my mom battling Parkinson's Disease and my dad with Chronic Lymphocytic Leukemia (see mom, I DO care!), my best friend's husband was just officially diagnosed with ALS (Lou Gehrig's Disease), a dear friend is having surgery for breast cancer, bringing up a horrible time in my life with my therapist, the nose tampon debacle, my usual schedule of tests and bloodwork, and late Saturday night/Sunday morning, Steve's dear Uncle Anthony passed away after a courageous battle with prostate cancer. No, this is a not a "my life sucks more than yours," pissing contest. It's just been a lot. My brain is full and my heart heavy. I needed a break from the computer screen.

Back in September I went to a new gynecologist and discussed my looooong family history of breast cancer. She sent me to get my first mammogram (boobies clear!), and suggested I follow up with a genetic counselor and an oncologist to come up with a plan to begin monitoring me for breast cancer.

I put it off until this February, and met with the genetic counselor and oncologist, both of which were wonderful. As the oncologist was feeling my boobies, we were chatting and discovered she knew my mother from her time at Fox Chase! Small world! My breast cancer prevention plan consists of a yearly mammogram and MRI, alternating 6 months in between each test.

Two weeks ago today I finally went and got the MRI, and when I told my mom I was going, I said "this is the only test lately I KNOW will be fine!"

And last Monday, the dreaded call...

Hi Marla, this is a nurse from Cooper oncology. We got the results of your breast MRI, and Dr. G wants you to come in and meet with one of  our oncology breast surgeons, we have tomorrow at 1:45.
Erm... 
This never happens that we have an open appointment this fast, so you should definitely take it if you can.
Erm...

Somehow my larynx sprung to life, and I managed to form words and schedule the appointment.

Clearly the person who was supposed to have that appointment suddenly died, or they thought I was about to.

And cue the mental breakdown.

I toot my own horn quite often over how well I handle all these fast balls that come straight for me. But hearing this news, on the 2 year anniversary since I last worked a shift at CHOP, was too much.

I called Brie and she talked me off the ledge. She's amazingly good at it, and we always end up laughing/snorting/snotting by the end of our conversation. I broke the news to Steve that night, he immediately took off work for Tuesday, then proceeded to open a bottle of wine. Sometimes, a drink (or a bottle) is the answer.

Really long story short, I have a lobular mass in my left breast. The oncology surgeon (who was fantastic, by the way), tends to think it is benign (hooray!), but, because of my family history and laundry list of problems, it needs to be biopsied. This is something I never thought I'd have to do for at least another 10 years.

The biopsy is scheduled for this Friday afternoon. And since my appointment with the surgeon, I have been going to second base with myself pretty much every chance I get, groping the mass and trying to decide if it's gotten any bigger in the 5 minutes since I last felt myself up.

I'm nervous and could use some "YOU GOT THIS!" words of encouragement. Like I said, even though I have a strooooong family history of pre-menopausal breast cancer, this isn't anything I ever thought I'd have to deal with yet. I'm optimistic the surgeon is right, but can't keep these fingers from (feeling my boobs) hitting the The Googles and reading all the scary things.

Ye, it's been quite a few weeks, to say the least. Forgive me for my disappearance.

Love you all <3

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And I cursed the sky and begged the sun to...

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It's been one of those weeks where I feel like this:

I'm Calvin

The Flyers lost in game 7 last night against the Rangers, and I've had doctors appointments, tests and blood work every day this week. 

Sunday, about 40 minutes before Flyers/Rangers game 5, I was sitting on the couch watching the pre-game show, when I got an intense, stabbing pain in my right lower abdomen. What. The. Fuck. I can handle my pain, but this had me in the fetal position within 30 seconds. From where it was, I figured it was my appendix, and hoped that it wouldn't perforate before the Flyers game was over.

Priorities, people.

Steve found me curled up on the couch, offered to cancel the gathering at our house, and I quickly stopped him from doing that. I was watching this game, dammit. And watch the game I did, in utter silence, sitting in the fetal position in a corner of the couch while my friends yelled and cursed at the TV (the Flyers looked like a bunch of degenerates on Sunday). I couldn't even partake in friendly Facebook banter with all my Rangers fan friends from north Jersey. But hey, I'm a trooper, watched the game, and when everyone went outside to enjoy the sunshine, I crawled in bed with my heating pad.

By this time I realized the pain was far too low to be my appendix, and imagined the spawn of Satan was somehow gestating in my out-of-order baby maker. Pain on my lower right side, radiating down my thigh and around my back. Extra strength Tylenol and Aleve didn't touch it. Convinced I was having an ectopic pregnancy (a risk after having a tubal ligation), a few hours later I made Steve go to Rite Aid for pregnancy tests. 

No baby.

Steve suggested the ER, I said fuck no, took a cocktail of Percoset and Benedryl which barely made a dent in the pain, but my brain felt fan-freaking-tastic.


The pain was horrible on Monday, but began to subside more and more, and now I feel fine. The culprit? An ovarian cyst on my right ovary ruptured. You would think after having my fallopian tubes tied up like one of Christian Grey's submissives, the doctors would be able to make some kind of magic happen down there so things like ovarian cysts don't occur. According to the doctor I paid the insurance company paid good money for me to see, her remedy for the type of cysts I have is to "wait until the extra fluid is resorbed, and the pain will resolve."

Google told me that Sunday night, why the hell did I drive 25 miles to the doctor on Wednesday?

Monday, loopy on a Percoset, a nurse from the radiologist's office called to inform me the radiologist looked at the CD from my breast MRI, and wants additional testing before he goes ahead with the biopsy on Friday. The good news? I can have it all done the same day as long as I come 3 hours earlier, and don't eat or drink anything 3 hours before that.

Oh boy!

I don't even know what the hell to think anymore. And no, that's not the Percoset. I'm trying hard to remain positive, but everything has been a total shit show lately. If it's not my lump in my boob, it's a lump on my ovary, if it's not my lupus, it's the lupus medications doing things they aren't supposed to. 

Last week after my meltdown upon hearing I needed to see a breast surgeon, Steve opened a bottle of wine and I more or less (read: more) drank the bottle. I don't normally cope that way (I'm serious!), but I didn't want to be able to think straight. And luckily, I got silly, I got control of the radio, and I kept making Steve motorboat me "just in case I have to get my hooties cut off!"


I was happy (read: drunk), and Steve got boobs in his face. It's a win-win as far as I'm concerned.

Tuesday early morning blood work followed by the funeral for Steve's Uncle Anthony. The service was beautiful, and although sad circumstances, nice to see Steve's family. I was blessed in the in-laws department, and the Italian Catholic family I married into isn't so different from my Jewish brethren after all; after a funeral, we gather, get loud, and chow down on delicious food!

Wednesday found me at the lady bits doctor, and today I get the drippage of poison into my port and a visit with McDicky. Hopefully he can get me back on a medication regimen that doesn't make my white count plummet.

Friday has been designated "B( . )( . )B Day" The mass in my breast is approx. 1.5cm x 1.5 cm, and I can only hope the needle doesn't slip and accidentally take my nipple. If that's the case, I'm demanding a double mastectomy, getting big, fat fake ones, and not have to worry anymore.

Hey, if Angelina Jolie can do it and be deemed a hero, so the fuck can I!

Anywho...

For the past couple of years, May 1st has resonated within me. In 2011, my marriage was in shambles, and the tension in our home was palpable. As spring turned into summer, we pushed each other farther and farther away, until I finally moved out after a blowout on my 30th birthday. The thought of being alone and starting over didn't scare me, but, deep down, the thought of losing Steve did. Even with all the hurt and anger on both ends (I was just as much to blame), I knew what I had with Steve was not worth throwing away. Instead of heading to what I thought may be greener pastures, I cleared my head, and decided to water the grass.

May 1st, 2012 was my first official day of disability. I would have never guessed I'd still be at home wondering if this is as good as I'm ever going to feel again. Having said that, I'm happy. Is home where I essentially want to be, no. But, these past two years have taught me a lot about myself and those in my life, allowed me to connect with wonderful people from all over, and do things that I wouldn't have been able to do otherwise. 

And this day last year, I was on the operating table at CHOP getting a cardiac catheterization, wondering if Dr. Rome was going to have to give me a new pulmonary valve, place stents in my pulmonary arteries, and if I'd wake up in the Cardiac ICU with a diagnosis of pulmonary hypertension. Anyone who's been reading for awhile knows that by the grace of God (and an incredible cardio-thoracic surgeon in my childhood), I woke up in the CPRU with no additional hardware, or a scary diagnosis.

And today, it's gnawing my brain (ice weasels, Brie) wondering if my early May good luck has run out, and come Monday or Tuesday, I will be told I have breast cancer.

Yeah, yeah, stay positive and all that jazz. I'm trying, I swear. But, if it is what I don't want it to be, it will be another obstacle for me to overcome, grab by the balls (errr... boobs, as the case may be), and say, "I got this, bitch."

Thank you all for the love, laughs and support. It means the world!

Let me end with saying...

HAPPY LUPUS AWARENESS MONTH!!!
During the month of May, all of my blog posts will be about lupus. Well duh, jack-ass, that's the title of my blog. But, I'll use this month to spread some knowledge on this terrible disease, and by the time I'm done with you, y'all will be lupus experts.

Watch out Dr. House!

Please note Friday, May 16th is PUT ON PURPLE DAY!
For my blog friends, wear purple and post it on your blog that day, and for my real-life friends, post it to Facebook or email me a photo! On the 19th, I will have a huge collage of all my purple wearing, lupus supporting friends!

PUT ON PURPLE DAY 2013

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And we'll never be Royals...

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Hi my loves.

Whoever decided scheduling biopsies at 1pm on Friday afternoons needs to meet my new close personal friend, Dexter Morgan (I've binged on seasons 1 & 2 this past weekend. Maybe not the best thing to watch, but I am hooked). Seriously, I'm going bonkers. Every time my phone rings, my heart skips a few beats.

I guess I'll get into more details about last Friday when I actually have some news, good, bad, or otherwise.

So today, with the lovely Steph of Life According to Steph, I bring you...


With Linky Cat's kidney infection and the nose tampon debacle in the beginning of the month, I did quite well; pretty much all the money I probably would have saved went to the vet bills. I'm not counting that because my best fuzzy dude was sick and needed antibiotics. But then 2 weeks later, I got the call from the oncologist, and it all went to shit. I engaged to some retail therapy. Target tends to turn my from upside down.

4/1- Lunch with Brie at the Pop Shop. Used Groupon!!!! Tip- $6
4/2- Dunkin Donuts coffee on the way to rush Linky to the vet- $1.81
4/11- Dinner w/ Danielle & Bridget. Budgeted- $40 Spent- $24 Saved- $16
4/18- Impromptu pizza lunch at a friend's house Spent- $20
4/19- Lupus Foundation of America south jersey group breakfast- CANCELLED 
        Budgeted- $40 Spent- $0 Saved- $40
4/23- Adult Congenital Heart Defect Association dinner- CANCELLED
       Budgeted- $40 Spent- $0 Saved- $40
4/22- Breakfast at the diner w/ Steve before oncologist appointment- $22
4/25- Friends Dinner at the BYOB- CANCELLED due to playoff hockey Saved- $60
4/26- Target Retail Therapy- $223
4/30- Dunkin Donuts- $1.81

I will subtract what I saved in budgeted outings from all discretions to find out how much I spent.

$274.62 - $156 = $118.62

So definitely not my best work, but I guess all things considered it could have been worse. How did all of you do? Link up, and let me know!














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Pink, it's my new obsession...

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When I decided to get a tattoo, I knew I wanted something meaningful. I'm not knocking anyone who has Hello Kitty, punctuation, or a Tazmanian Devil, but for me, if I was putting something permanently on my body, I wanted to make sure it would still have meaning in 40 years. I finally decided on my awareness ribbons (see above), something that showed love and support for important people in my life.

Purple- Alzheimer's Disease for my Mom-Mom
Orange- Leukemia for my Daddy
Red& Blue- Congenital Heart Defects for Me!
Yellow- Support the Troops for my friend Sean who fought in both Iraq and Afghanistan
Pink- Breast Cancer for my Mommy and 8 other strong women in my family

I got inked in 2006, and right before my February 2008 wedding, my dad was diagnosed with prostate cancer. Shortly after his diagnosis, dad asked if I was going to add a blue ribbon to my collection. I laughed and told him, sorry, one ribbon per person.

I received my lupus diagnosis in August that same year, and I remembered my one ribbon per person rule; I quickly learned purple was the color for lupus awareness. I was the exception to my own rule.

When the surgeon said I needed to get the mass on breast biopsied, the possibility of having yet another disease to make my personal ribbon count three, broke my heart.

Last Friday I had the mammogram and biopsy; my nerves were already shot to hell, plus I couldn't eat so I was a cranky bitch super grouch. Steve was just as on edge as me, but at least he had the luxury of coffee.

When taken back, I was given a locker for my belongings, and told to put on a waffle-knit robe. Had I not known that I was at the Cooper Cancer Institute, I would've thought it was the spa.

First up, the diagnostic mammogram. IV was placed on the first time, contrast dye injected, and before I knew it, my boobs were squeezed like they were in a vice from wood shop class. This was much worse than a regular mammogram, plus there were extra views. As the nurse was taking each picture, she said "don't breathe!" and I remember thinking,"DONT WORRY I CANT!"

The radiologist immediately looked at the images and said the mass lit up from the IV contrast, which can be indicative of cancer.

Enter tachycardia stage right.

In the waiting room before the US and biopsy, I cried. That feeling of impending doom washed over me, like I already knew the outcome.

The biopsy was uneventful, another radiologist did the procedure. She numbed me up, and soon enough was digging away. Whatever type of instrument is used sounds like a drill from the dentist. Thank God for lidocaine!

The doctor was asking me all about lupus and my heart defect, told me I was incredibly knowledgeable and suggested I go into medicine when "all of this is over." Let's get through the biopsy before I think about med school! One step at a time.

I was steri-stripped and bandaged up by a tech, given instructions, ice packs for my soon-to-be-sore boob, and she explained since it was Friday afternoon that I wouldn't hear until Wednesday.

Who the fuck thinks it's good for anyone's sanity to schedule a biopsy on a Friday afternoon?!!?

The next 4 days felt like the longest of my life. The bruise on my breast was black, and it looked like some crazy rope-suspension BDSM shit gone terribly wrong, or a titty twister from The Hulk.

On the bright side, the instructions said I couldn't do laundry, vacuum, or lift anything over 5 pounds for 3-5 days, and I may or may not have milked that a little more than deemed necessary.

I can't put into words how terrified waiting for for the results made me. Breast cancer took my grand mom from my mother when she just 9 years old, changing her life forever; the disease has terrorized every woman on mom's side of the family, and my Mom-Mom (my dad's mom) fought the disease. And now, at 32, it was coming after me.

I ransacked my bathroom cabinets while sobbing, throwing away anything with parabens, cursing myself for not being more mindful of the lotions and potions I put on my body. (I didn't throw away my deodorant, because hello, I sweat like a pig). I rifled through my vanity and got rid of a ton of makeup if I wasn't sure of the ingredients. I spent time on The Googles, on discussion boards, trying to soak up as much knowledge as I could. I used my juicer 5 or 6 times, hoping the organic fruits and veggies would magically shrink the mass.

And, when I wasn't doing any of that, I decided it would be a good idea to start binge watching Dexter. Because when you're freaking out about your own mortality, watching a show that revolves around a (super fine hunny) sociopath serial killer is clearly the way to get your mind off things.

The weekend was excruciating, and I think I racked up a whopping total of 6-7 hours of sleep. Come Monday morning, knowing I still had 2 full days of waiting was agonizing. Every time my phone rang or a text came through, my heart stopped, yet if it was silent for more than 15 minutes, I would stare at it willing it to ring.

More Dexter. Lunch with Brie. Online discussion boards. Playoff hockey. Lots of coffee. A manicure. Dexter.

At 6:13 on Tuesday evening, while out to dinner with Steve, Pete and Brie, my phone rang. I knew exactly who was on the other end (well duh, caller ID), and once again, my heart stopped.

I felt like Elle Woods in Legally Blonde, with all her sorority sisters silent as she opens her LSAT scores, and screams out "179!" Brie, Pete and Steve were silent and staring...

BENIGN!!!! Cheers all around!

The biopsy came back showing atypical lobular hyperplasia, which is basically pre-cancer, or as I like to call it, Cancer-In-Training. Even though it is benign, I need to have surgery, a lumpectomy, to get that bad boy out. If left alone, the mass can eventually become malignant. No chemo (if it had been malignant, the mass was 1.5cm, and anything over 1cm is an indication for chemo) or radiation. No big, fat fake hooties.

I spoke to the breast surgeon yesterday about the results and surgery. After 4 heart surgeries, this will be another walk in the park. She explained that although the biopsy came back benign, there is always a (very small) possibility somewhere else on the mass could be lobular carcinoma in situ (LCIS), and to be prepared.

I'm not 100% out of the woods just yet, but I feel so much better, the proverbial weight lifted. The spring is back in my step, and Ann and I celebrated yesterday with Starbucks and pedicures!

Lobular breast masses are not detectible on mammogram, which is why mine came back clean last August. In September when my gynecologist suggested I meet with a geneticist and oncologist, I didn't go until February. When the oncologist suggested a breast MRI and requested authorization from my health insurance company, I almost blew it off altogether. The insurance company called Steve twice, reminding him that I hadn't had gone for the test, and that the authorization was going to soon expire.

I went for the MRI two days before the authorization was up. Two days. If I had blown it off, it could have been cancer by the time it was found. I joked to a friend that I finally went for the test out of boredom, nothing better to do with my time since I'm not working.

I'd like to think somehow, some way, my grandmom Minerva (my namesake) and Mom-Mom were watching over me, making sure I made that call and had the MRI.

Thank you to Steve, Brie, Pete, PJ, Mom & Dad, Danielle C., and Danielle B. (you talked me off the fucking ledge) for getting me through the weekend.

Only 2 of those ribbons are for me!

Love you all <3


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Purple Haze all around...

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What's up, bitches?!?!?!

Do you know what today is? That's right, it's finally...



So many of you have reached out saying you are going to Put On Purple for Lupus Awareness! PLEASE tag me on Facebook and Twitter, or email me any pictures of you wearing purple and representing the 1.5 million Americans living with lupus!

Yesterday was the World Lupus Day Rally in Philadelphia's LOVE Park. My favorite fountain in all of Philly put on purple! I was joined at the rally by Steph from Life According to Steph, and Steve who was our official photographer!


That gorgeous ring was handmade by the talented Alli from Allena Mistral. I won a giveaway for a $30 credit from her jewelry store, and chose that piece (the stone is light purple). PLEASE go check out her Jewelry Store where you will find so many unique items, and tell her I sent you!

My friend Amy made those awesome lupus earrings that I will be wearing today!


Gonna sport some purple cosmetics and, of course, my purple tutu. Yes, I will wear it in public, and no, I don't give a fuck! That kick ass tutu was made by one of my very good friends, Kelly. Girl is amazing. Check out her Fackbook store, Little Lily Lulu's.


King of the Castle! King of the Castle!
Even Linky Cat got in on some purple action.



Yesterday I tweeted some famous Philly locals letting them know today was Put On Purple Day. Not thinking anything would ever come of it, I noticed Bill Henley, a meteorologist from NBC 10 Philadelphia retweeted me!


Brie became really excited he retweeted me, tweeted him, and he "favorited" Brie's tweet!

EEEEEK!!!

I turned on the news this morning...

Bill Henley, Philly meteorologist extraoidinaire, is wearing a purple tie for Put On Purple Day!!!!

And then I saw this.....

And I peed my pants! NBC10 Philadelphia, you freaking rock!!!
My life, is complete!!!
And, Chris Cato started following me on Twitter.
Damn, I love the social medias!

Thank you to EVERYONE who is wearing purple today, even though it's raining here in Philly, seeing all this purple warms my heart! 

I LOVE YOU ALL!!!

Be sure to hop over to Alli's blog (she made me that gorgeous purple ring), where I have taken over today, coming at you with five fast lupus facts! Boooyah!!!







Linking up with JoyAmandaWhitneyJennie

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Start wearing purple for me now...

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Hey hey, mofos! It's funny, last year when I posted all the Put On Purple pics, it was my Mom and Brian's birthday. And guess what today is? My Mom and Brian's birthday! Happy birthday to two of my favorites! Brian is actually one of Steve's best friends, but, he likes me better.

I had big intentions for this post to happen yesterday, but clearly, that didn't happen. This will probably be the only post for this week, as I have appointments to see 5 different doctors, and somewhere in there I restart my iron infusions. Talk about letting the good times roll.

Whenever I see an appointment free week on the horizon, I day dream of going back to work full time, doing what I love. And then, I turn the page in my planner and see 6 appointments crammed into one week.

Reality bites, indeed. (side note: the soundtrack to Reality Bites is amazeballs)

Where was I? Oh yeah, Put On Purple Day. Last year I made a college for the blog, and I remember being floored by all the friends/family/blog friends who participated. It seems 2014 said a big ole "SUCK IT!" to 2013.

PUT ON PURPLE DAY 2014




Put On Purple Day even made its way over to Italy! Thanks Jodi!

 My friend Carlee posted a picture of the AWESOME SAUCE, and it's just like purple only better!
And doesn't Danielle look uber cute??? She's a future nurse, and I'm super proud!


Of the 14 people represented in this picture, I have only met one of them face to face (Hi Gwen!) The fact that all of you took time to put on purple, and take a selfie to support little ole me, blows me away.  I know a selfie posted on Facebook or IG takes 4 seconds out of your day, but it means the world <3

Love that face!!

I received my Go VoxBox in the mail on Friday, and it seems the fine folks over at Influenster knew it was Put On Purple Day! (hoooray for free stuff!)
*I received these products complimentary for testing purposes*


Even famous people put on purple. Yep, I'm a giant nerd who thinks the local news broadcasters are famous. (Can you imagine what I was like when I met the Philly Phanatic?!?! Best day of my life)
I spent all day Thursday bugging the shit out of them tweeting NBC10 Philadelphia about Put On Purple Day, and imagine my surprise when I turned on the TV Friday morning, and saw all the grape colored goodness! Channel 10, you all rock my socks!
Steph's Mom (also known as the Dalai Momma) tweeted Fox Philadelphia, and two of the women on Good Day Philadelphia wore purple!
1. Chris Cato, Jillian Mele, Bill Henley
2. Renee Chenault-Fattah
3. Brittney Shipp
4. Keith Jones
5. Bill Henley
6. Kacie McDonnell and Sue Serio from Good Day Philadelphia

Put On Purple Day ended at a local hole in the wall for Brian's birthday. I wore my purple tutu with pride (ain't no shame in my game), drank seltzer all night, and garnered stares and weird looks from anyone that passed by me.



Success!

Love you all <3

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I'm waking up, I feel it in my bones...

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Happy Friday Eve!

I know, I know, where the hell have I been? I hate repeatedly saying, "this week is SO crazy!" but, I speak the truth.

I do have some kick ass opportunities coming my way quite soon, but we'll get into that all in good time. Even though a lot of my time is spent with doctors (and not ones I work with), it's nice to stay busy.

Today's just going to be a bit of a random brain dump. "Thursday Thoughts" as my gal Steph would call it.

Even though it didn't come back malignant, since I had my breast biopsy, I've been freaked out. Thank you, Captain Obvious. I've spoken to a number of oncologists, both at Fox Chase in Philly who have treated my mom and all the other women on her side, and the ones at Cooper, trying to come up with the best plan of action. Of all the shit I've been through in my 29 29 29 32 years, knowing the boob cancer (it was atypical lobular hyperplasia- cancer in training) was coming right for me has shaken me up.

I've been so on edge, that's it's forced me to reevaluate what I'm putting in my mouth (not that! bunch of perverts...), and be more cognizant to eat healthy. Which is, damn near impossible on steroids. I'm constantly craving cakes and pies (cakes and pies!), and although delicious, broccoli and hummus doesn't do it for me. On a good note, since McDicky lowered my dose of methylpred, I've been losing weight faster than you can say "Marla, put DOWN the fucking Cool Mint Oreos."

16 pounds and counting. In a weeks time, I bet I'll be up to the number of Duggar spawn, but in pounds!

Where was I going with this? Oh yeah, eating better. I'm never going to give up the bacon, but I found a way to get organic fruits and veggies in this house without having to deal with the asshats at the supermarket.

How, you ask? Door-to-Door Organics. No, I'm not getting paid to write this, I just like a box of fresh, delicious fruits and veggies delivered right to my door. Shit is good, and I learned I like beets.


If you live in my area (Philadelphia/South NJ) I can shoot you an email to get 50% off your first box. Let me know. And again, just trying to share the wealth, I ain't getting paid!

Tip: Ginger root is VERY strong. If adding it to a juice or smoothie, only use a TINY bit. I did not know this. The results... not pretty.

I'm getting iron infusions again, I started last week. Per usual, knocked me on my booty, and the bones were aching. Bone pain blows, it comes from the inside out. Bastard. I had infusion numero dos yesterday, and it wasn't so bad. Except, my nurse deaccessed my port before she instilled the high dose heparin. I went to smack her hand, and I swear, I heard that loud, slow-motion "NNNNNNOOOOOOOOOOOOOOOO!" but she pulled the needle out. Port reaccessed, heparin instilled, and port deaccessed. 

Remember when I started this chemo bullshit a few years ago, there was a Treat Lady who handed out treats, and last year I won a few rounds of 'Chemo BINGO?' Well, I'm in a new infusion room now, and there's no Treat Lady and no Chemo BINGO. Blasphemy.

Poison can be FUN!

Hmmm... what else? I got new perfume. It smells good.

Since I'm a spoiled brat, I treated myself to an "I don't have titty cancer!" Coach bag. I ordered it the day after we got the results from the biopsy, and I've been checking my email every 4 seconds for the tracking information patiently awaiting it's gorgeous arrival. And, last night...

What the fuck, Coach? What. The. Fuck.
I know, I know... #firstworldproblems

And, that's all I got. Next week I see my cardiologist and McDicky to get surgical clearance, I have an iron infusion, dinner with the Adult Congenital Heart Association, I'm trying to get in at Fox Chase, and the cool thing I can't talk about yet. 

"My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style."
-Maya Angelou

I feel like that is my mantra. The world lost a good one yesterday.

Love you all <3

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So you wanna play with magic?

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TGIF, bitches!



It's been 9+ months since my last iron infusion. Even though it looks like hot liquid death oozing into your vena cava, now that I've gotten over the hump of the bone pain from infusion #1, I forgot how freaking good I feel on this shit. It's amazing how much better one feels when they are circulating more amounts of oxygen in the body!


In NHL news, the New York Rangers are going to the Stanley Cup.
I think I'll wet my pants...

I want to thank all you lovely gals who Tweeted Coach yesterday bitching how they cancelled my order 3 weeks AFTER charging my credit card. You guys REALLY REALLY love me. But, we were all brutally rebuffed, and I didn't hear one single response out of them. Dick Biscuits. 

Sarah wins the gold star, I was cracking up!

In the grand scheme, not getting an expensive bag I really didn't need is not the end of my world. Yes, I thought I deserved it after those few terrible weeks of going through that scare, but, considering the results, I think that was gift enough. I was reading an article yesterday where one of the women who was held captive by that nutbag Ariel Castro for over a decade was interviewed, and I was humbled by her strength and courage to not only live through that horror (she explained things that are nightmare inducing), but to be able to start rebuilding her life, and share her story. It made me realize I needed to shut my mouth and know my role.

On yesterday's post, you'll noticed I used Imagine Dragon's Radioactive as the title. One of my best friends sent me this video of her son. Please watch, I promise it will make your day.


I can't even with this kid. The stage presence, the spin, the Mariah Carey hand wave. I see a future in music...

Speaking of music, if you know me at all, you know that music has, and always will be a monumental part of my life. I may not always have the most constructive things to say, but I can consistently come up with a song/lyric for any given situation. Despite my deep love for music, you know I have a gift of jacking up the words. Or making up my own as I see fit.

Somehow I got on this subject with Nicole, and she said her husband Dave does the same. When he heard Katy Perry's Dark Horse, he decided, "So you wanna play with my dick?!?!?!" was so much better. 

Given that I have the maturity level of a 13 y/o boy in the throes of puberty, I was hysterical, and now every time I hear the song on the radio, I sing Dave's version. Tuesday afternoon in the car, windows open, radio blasting, Dark Horse comes on while coming up to a red light. I'm singing, practically giving the car seat a lap dance, having a grand ole time, not even realizing I'm singing Dave's lyrics at the top of my lungs. And then I see the guy next to me staring, slightly horrified/amused at my performance. I'm waiting for it to show up on YouTube or BuzzFeed.

Womp. Womp.


All class, baby! Enjoy your weekend <3

Dark Horse (feat. Juicy J) by Va - www.musicasparabaixar.org on Grooveshark
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Linking up with Amanda, Whitney,

It's just another manic Monday...

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So how many of you are never going to hear Dark Horse the same ever again? Yeah, sorry about that. And by sorry, I mean not sorry.

I cannot believe June is upon us, summer officially starts in 20 days. I feel like my planner was opened to February, I skipped passed March and April, blinked once or twice, and here we are. I seems like I was just bitching about the all the massive amount of snow, and now I'm going through sunscreen faster than you can say basal cell carcinoma.

I'm not going to have much presence on the interwebs this week, so much going on. It's mostly boring doctor stuff, but, I feel like I can tell you about that "exciting opportunity" I received last week.

Later this morning I'll be over in Philly at the cardiologist getting the ole' ticker checked out. Tick tock, mofos.

And ironically enough, tonight is dinner with the Adult Congenital Heart Association. It's funny, at one point in time, our collective pulse ox's may have been 97%, and now, we are all living full lives with careers, families, and an adequate pulse ox. All our heart journeys, so to speak, are distinctive in their own way, but we each managed to reach the same end point.

Tomorrow is McDicky Day, which will no doubt be an all day affair. McDicky runs on McDicky Time, and is far different from the 24-hour clock we are all used to.

Wednesday is the Big Opportunity I've been a bit secretive about...

Kristin at WEGO Health has asked me to participate in a roundtable event, Medical Marketing and Media Leadership Exchange: How can pharma think more like a patient?

The roundtable discussion with have 8-12 participants, including the Director of global Clinical Development from Bayer Pharmaceuticals, the SVP of WebMD, the Associate Director of Clinical Trial Intelligence from Novartis Pharmaceuticals, a few other important people... and me.

It will be a moderated, 2 hour discussion hitting on key points like empowering the patient, educating the healthcare professional, clinical trial recruiting, and content marketing. Excerpts from the discussion will be published in the August issue of Medical Marketing & Media.

Am I nervous? Yep! I do think I will be able to bring many valid points and arguments to the table, as both a healthcare professional and a patient with multiple chronic illnesses. Through my experiences, I've been able take note of loose ends and experience first hand where the gap between healthcare/pharma and the patient originates.

Since I won the "Hilarious Health Activist" award and not the "Big Word User Pulitzer Prize Winning Blogger" award, I'm honored that WEGO Health has confidence in me to represent them along side such influential members of the industry.

Call me biased, but I truly believe I've not only had the best doctors and nurses in the world save my life at CHOP, but as a medical professional, I learned from the best at CHOP. My God, it better have all rubbed off on me!

And, if all else fails, I can only hope this will happen...


Thursday I have my iron infusion, and then meeting an old friend for coffee, and Friday morning an eye doctor appointment.

Friday afternoon someone is coming to clean the house! !!!!!!! Call me a Princess, call me a spoiled brat, I don't care. Between Steve's new position at work, and my being all blog famous now, it's just not conducive to keeping up with the house. 


Wish me luck this week! 

Love you all <3


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