Tuesday, May 21, 2013

"My stupid mouth, has got me in trouble..."



I have this funny little habit of putting my foot in my mouth. I think I'm being hilarious, but more often than not, I end up offending someone or making myself look like an ass.

Or both.

Steve's brother Dave and his wife Kelly live on the estate side of our development. They are the Farms, we are the Meadows, and there is a group email list that goes to all the residents of both developments.

Last summer, Steve and I went to a BBQ at Dave and Kel's, attended by a bunch of people who live in the development. To be honest, Steve and I don't hang with a lot of our neighbors. Everyone is friendly and wonderful, and we love them, but it's hard for me to be around everyone and their children.

* Buzz, I am NOT complaining, we love where we live, and it's my own demons that make me anti-social. I LOVE paying property taxes for the neighborhood kids' to get an amazing education! *

Ahem.

Anyway, at the time of the party, there was some neighborhood drama via email. Something to do with a pool and cops, and I don't know what. The man at the center of the drama wrote a mass email filled with F-bombs and 'why don't you come here and say it to my face!' and there was a huge backlash against him.

A few of Kelly's friends were talking about said email, and I interjected.

Me: "I read that email. What a douchebag. Way to be a big man writing threatening emails."
Guy I haven't met: "I'm the douchebag that wrote that email."



We are all guilty of having those moments. Some (me) more than others. 

In the almost 5 years since I've been diagnosed with lupus, I've encountered far too many of these moments. I know a lot of the comments I receive do not come from a place of malice, but from ignorance. Lupus doesn't get much "publicity," and when it does, it's not to educate about the disease. 


Blue are things people have said to me, and red is my commentary.

"Lupus? Isn't that the disease George Constanza was so afraid of getting?"
Reason #837468736 why I fucking hate Seinfeld.

"At least it's not cancer."
This one kills me. You're right, it's not cancer. In many cases, cancer can be beaten, or one can have a surgical procedure to prevent certain types and be deemed a hero. Cancer receives billions in funding, and rightly so. But, I don't get that option. Lupus has no cure, and there never will be in my lifetime due to lack of funding. It took over 50 years to come out with one medication specifically for the treatment of lupus. There was nothing I could have done to prevent this, and I will more than likely continue to swallow handfuls of pills and take a shot every day and undergo infusions for the rest of my life.

Don't get me wrong, cancer is awful. It's directly affected the lives of too many people I love. It's an ugly, ugly disease, and I know firsthand how scary it is to hear that it's in your body. In my case, it was one of my lupus medications that sped up the process for my cervical cancer developing. By the grace of God, I had a few uncomfortable procedures, and it was gone. There are so many that aren't that lucky.

If I had the flu or an ingrown toenail (gross!), then yes, tell me "at least it's not cancer." I am alllllll about looking on the bright side and finding a silver living. I know I wouldn't win the "whose got it worse?" game in many cases. But, until you fully understand how debilitating the disease is, that lupus has affected my heart, lungs, cervix, blood, brain, bones and skin, and all that damage can't be undid, then please, keep your mouth shut.

"Must be nice to not have to work."
As I type this, I am looking at my 3 degrees I worked my ass off to get. Aside from taking years of my time to earn, they cost me close to $80,000 (that's with scholarships and tuition reimbursement). I didn't go to school to stay at home, and I get myself in such a funk that I am not working. I adore my job and being a contributing member of society. Had I chosen to stay at home, then yes, it would be nice. But, I've said it before and I'll continue to say it 'til I'm blue in the face; I didn't choose this.



"I wish I could take a nap in the middle of the day."
I get it. You're tired. Everyone is tired. We live in in a society where it is frowned upon if you can't do 42 things at once. I thought I knew tired before lupus, but it turns out it was just night shift and hangovers. I can't explain the fatigue that plagues me every single day, no matter how much sleep I get.  I never feel refreshed. Aside from the pain, the fatigue is the hardest thing for me to accept. I don't know how I spent my first 3.5 years working full time, school full time, social life full time, etc... I think the older I get, the less I care what people think and have finally come to terms that I can't function without some kind of nap during the day. But don't tell me how lucky I am. I assure you, there are 42 things I'd rather spend my time doing than taking a nap.


"My boyfriend's cousin's friend's baby mama had lupus and cured it by eating beets and lettuce every day."
No. Just no. She may feel better with her beets and lettuce, but she is not cured. Hopefully for her, maybe her lupus isn't very severe. But, no. Beets and lettuce? I'm not a fucking rabbit. Fogo de Chao, take me away.

"EXCUSE ME!!!! Is that a fashion statement or are you fighting something?" (stranger in the mall asking about my lack of hair)
Bitch, I'm about to be fighting you if you don't get out of my face.

"But you don't look sick!"
This is the most frustrating. Do I need to look like Rick Grimes most recent victim to convince you?  

It's luuuuuupussssss


Monday, May 20, 2013

"Purple rain..."



Happy Monday, my loves!

Today is the birthday of two of my most favorite people- my Mama and Brian Steen-Brian Steen! Happy HAPPY Birthday tooooooo yooooouuuuuuu!

I had one of those weekends filled with the warm fuzzies. The amount of purple love that poured in on Friday for Put On Purple Day was astounding!!!

LUCK FUPUS!!!!!!

The days were busy busy this past week, so I'm going back as far as Wednesday. I did some early morning food shopping  Not only did I have Coffeemate coupons, they were on sale, and then I came across these precious gems. Jackpot! It's like the heavens opened and the Caffeinated Gods answered my prayers. I'm fairly certain the Hallelujah Chorus was playing as I reached for them.

And He shall reign forever and ever!

After my religious experience at Shop Rite, I rested up for a bit before heading to Cooper for Venofer infusion numero dos. 

mmmmm... liquid metal in a bag poured directly into my superior vena cava

I was not a happy camper when I threw up my delicious calzone (sure tasted better going down than it did coming up!) after my first infusion, so this time I was better prepared and popped some Zofran.



It worked wonders, no nausea or vomiting. But, unfortunately, the bone pain was just as excruciating as week one. 

I was somewhere between seeing Jesus and Ebola

In all the madness, I went to be the witness for my great friends Megan and Rachael to apply for their civil union license! Woot woot!! I would have been there for them if they had to carry me (I warned Meg she might have had to!) and I am so thrilled to have a small part in their day!

Meg Pregnant Belly < Marla Prednisone Belly

Thursday my car battery died. Lame. My brother-in-law had to come save me.

I took the dead car battery as a sign from above to stop and recharge my own batteries. Spent the rest of Thursday in bed.

Got up to watch the series finale of The Office. It was everything I wanted, and more. I will surely miss that show.

Friday I had blood work in the morning, then a neurologist appointment and then a hematologist appointment. My hematologist is wonderful, I would recommend him to anyone. I had my Dad go to him for a second opinion for his leukemia and his own issues with low iron. But, I kid you not, he walked into the exam room and said...

"New hair do?"

Really? He's a hematologist/oncologist. Isn't treating the bald and the shiny his thing?

I was too tired to come up with the usual smart ass comment.

My last blood work showed my serum iron was 6, iron saturation 2 and my ferritin of 3. It's no wonder I feel like shit every day, and can't walk up stairs without getting short of breath. The plan is to go ahead with 4 more Venofer infusions, wait two weeks, get labs done, and reevaluate.

Still no reason as to why this is happening.

Ho hum.

My iron deficiency is kicking in, and I'm getting too tired to write coherent sentences. Here is a picture college of the rest of the weekend starting from the top right and going clockwise.

1. SMD sent me some love in the shape of a Sephora gift card. Does she know me, or what?
2. My nieces playing limbo at Shelly's baby shower
3. Sunday morning shenanigans
4. Riley & Me at the baby shower
5. Steve faking a smile b/c he is annoyed I am taking his pic while he's eating (suck it up, bitch!)
6. Awesomeness in the form of sparkly shoes.

Happy HAPPY Monday


Friday, May 17, 2013

"Start wearing purple for me now..."



Happy Friday, my loves!

The big day is finally here! What day do you ask???


I Googled "songs about purple" and found this song "Start Wearing Purple," by Gogol Bordello. Never heard of em. Apparently, the song is about some loony broad who wears purple all the time.

Sounds about right.

Thanks to everyone who shared my Facebook posts and retweeted my zillions of Put On Purple tweets!!! It's barely 9am, and I've already received a ton of texts, pics, tweets, and FB love about Put On Purple Day! I've have some amazing people in my life!!!!


Here are the purple things I am putting on today! Laid out on my gorgeous purple chair, of course!!

1.
Old Navy sparkle tank top

2.
Maybeline Color Tattoo eyeshadow in Luscious Lavender

3.
Urban Decay 24/7 eyeliners in Rockstar and Ransom

4.
MAC lipglass in Perky

5.
And the creme de le creme... my amazeballs Coach bag


Even Grimace supports Lupus Awareness! I love big purple hamburger eating blobs with kick ass tattoos!

Princess Matzo Ball Honey Boo Boo Child and Linkavitch Chomofsky lounge on a purple chair for their Mommy!!!!

Hop on over to SMD for a faboo beauty giveaway!

Check out the gorgeous Bells representin Put On Purple Day in the UK! Bloody fantastic!

Visit my sister from another mister Christi at Mascara & Madness. She rocks my socks, gave me the sweetest shout out (with a little Foo Fighters! BONUS!) and I'm just now getting around to acknowledging it. I suck. Thank you Christi!!!

And this amazing post by the gorgeous Gwen at Confessions of a Gila Monster.

I'm totally tooting my own horn today. 

TOOT TOOT, mother fuckers!!!!!!!!!!

I never thought this whole blogging thing would pan out to much of anything. In fact, it's been over a year since I've starting this thing, and if it weren't for Brie, I would have ditched it 2 posts in. But, I've "met" so many wonderful people through the interwebs that I would have never crossed paths with. Some may think the blog world is lame (I used to!), but I've gotten so much support throughout this year from people that wouldn't know me if they passed me on the street! And for that, I love you all!!!

HAPPY PUT ON PURPLE DAY!!! 
You all rock my socks

Linking up with Joy for The Friday Five and Lauren for High Five Friday





Wednesday, May 15, 2013

"Nobody said it was easy..."



Hello my loves.

I wanted to thank you all for the support and kind words yesterday.

Nick's funeral was surreal, and I have to be honest that it went by in daze. Even though he hasn't been in my life for quite some time, I guess I always took for granted that he was still a part of the world.

The service was a beautiful tribute to a good man, and it warmed my heart to see how many lives he touched in his much too short life.

As I write this, I'm getting my second Venofer (iron) infusion. I normally go Tuesdays, but I changed the day so I could go to Nick's service.

Wednesdays are much quieter, there are only 3 of us getting infused. No BINGO, no Treat Lady, no fun. The man getting infused next to me is blasting Maury Povich and interjecting much more than I deem necessary over who is and who is not the father.

Must bring earplugs.

My nurse tried to access my port without wearing a mask. When I told asked her to put one on, she seemed a little put off. Honey, I have enough problems, I don't need endocarditis. Put on the damn mask.

As a nurse and a patient, my advice is to ALWAYS speak up! It's ok to ask if they've washed their hands or to wear a mask. If I learned one thing through all of this, it's that I'm my best advocate.

And, to end on a much lighter note, I'm happy to announce that I was asked by Rachel from the North East Bloggers Network to be the Blogger of the Week! Oh, hell yes! Thank you Rachel!!!

Go check it out!!!
Blogger of the Week

Don't forget that Friday, May 17th is Put On Purple Day for Lupus Awareness Month! So be sure to wear 50 shades of purple (or one will suffice) to show support for the 1.5million Americans who suffer from lupus!

Check out Bells over at Bells Little One who blogged today about Put On Purple Day!!! MWAH! <3

Love you all

Tuesday, May 14, 2013

"Pulled away before your time..."



Hello my loves.

It's been an emotional past few days. I learned the man I talked about in this post passed away last Friday, after an almost 3 year battle with cancer. He was 33.

Nick and I were together for close to 3 years, and he was my only other true significant relationship aside from Steve (I don't count my college boyfriend, ironically, also Nick, as I wasn't very nice to him. And my high school boyfriend...shudder). I'm not sure if this is weird to be talking about my ex-boyfriend on my blog, but hell, it's my blog.

I met Nick when I was a bartender at Tiki Bob's; I gave him and his friends a round of free drinks because I thought he was hot. Apparently, at age 21, the way to a man's heart is through his liver.

We had one of those full of fireworks, early 20's type of relationships, ignited by far too many alcohol fueled nights. Nothing like Jersey Shore's finest couple Ronnie and Sam; we never broke up and got back together, we never threw anything at each other, we didn't cheat, but just a frenzy of emotion. We talked about marriage after we were living together for awhile. There was no doubt in my mind that I was in love with him, and he with me, but one day I woke up and knew I couldn't live with the tumultuousness forever. I broke up with him and moved out.

There was no ill-will, no drama, no after break-up closure sex. We just weren't right for each other. He went on to be a successful civil engineer and married his wife, while I forged ahead with my nursing career and married Steve.

I stayed in touch with his friends (they even came out for my 25th birthday!), and I worked with his Aunt Dana on the Apheresis unit for 3 years, so I knew how he was doing. I was always thrilled to hear of good things coming his way, happy when he got married and when his wife gave birth to a beautiful baby girl.

When Dana told me of his throat cancer diagnosis over 2 years ago, I was stunned. He was a social smoker, at best, and I always associated throat cancer with older people, not a healthy 30 year-old man.

I knew he made it through tough surgery, radiation and chemotherapy, so when I hadn't heard anything in awhile, I assumed that meant he was doing well. He had already done some major cancer ass kicking.

I was devastated when I found out he passed on Friday morning. Nick was a part of my everyday life for 3 years, and even though he hasn't been for quite some time, it's strange knowing he's gone.

I can't stop thinking about his beautiful wife and daughter, who have been robbed of their husband and father. His parents who have to bury a child. It's so unfair...


I'm not a religious person, but after every performance with my high school show/concert choir, we joined hands and sang this song. It means so much, and it never fails to help me through a tough time.


Nick, I find comfort in knowing you aren't in any more pain. I have no doubt you're still the tenacious person I once fell in love with, and I believe with certainty that you fought for as long and as hard as you could to stay with Courtney and your baby girl, Presley. Watch over them.

Rest In Peace, Nick.



This is my favorite picture of Nick and I. It was Back To School Night at Tiki Bob's for the local Philly colleges. All the bartenders had to dress up as school girls, and Nick and his friends came in. There wasn't a night I didn't come out from behind the bar so I could go dance with him!

Linking up for Just Because





Friday, May 10, 2013

"I've got Friday on my mind..."



Happy Friday, my loves!

After a few days of feeling like death warmed over, I'm finally starting to feel somewhat better. Just to do it all over again on Tuesday.... But, who's complaining?

Steve and I have plans tonight that I am very much looking forward to, and then I'm doing a whole lot of nothing. It's like my brain and body aren't quite on the same wavelength, and I'm giving them both a much needed few days of rest.


Happy World Lupus Day!

May is Lupus Awareness Month! I had these grand plans to blog every day of the month on some lupus related topic. I even went as far as writing the topics and song title on the specified days in my planner. 
Big. Fat. Fail.
I blame it on the lupus. 
But, today is World Lupus Day, so make sure to hug your favorite Lupie today!

2012 Philadelphia Lupus Loop

On the Lupus Foundation of America's website, every day in May a new lupus awareness fact is being posted here. 

Here are a chosen few....

1.
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body.

2.
Ninety percent of the people who develop lupus are women. Men can also develop lupus and their disease can be more severe in some organs.

3.
African Americans, Hispanics/Latinas, Asians and Pacific Islanders and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

4.
Factors that may trigger a lupus flare include infections, ultraviolet light, and stress.

5.
Lupus can affect any organ system in the body, including the heart, kidneys, lungs, blood, joints and skin.




Next Friday, May 17 is Put On Purple Day, in honor of Lupus Awareness Month. Be sure to wear your purple to support your favorite Lupie!
Have a fantastic weekend and Happy Mother's Day to all the amazing Mamas I am blessed to know! Linking up with Joy for The Friday Five 

Love you all


Thursday, May 9, 2013

"But life is both a major and a minor key..."



Happy Friday Eve, my loves!!!

This week has flown by, and not because I am doing anything fun or exciting.

One of the medications I take, Plaquenil, causes damage to the retina of the eye. Over the past 7 months, I've been on a higher dose than usual while we were waiting for the infusion medication to start doing its job. Anyone on Plaquenil requires eye exams 6 months to monitor for the potential damage it can cause. So off to the opthamologist I went.

Eyeballs are to me what Francesco Rinaldi is to my Italian mother-in-law: absolutely disgusting.

I'm not sure why they bother me, as I have peered into the open chests of many of my patients. But eyeballs? Gross!

Needless to say it took about 10 tries for the tech to get the damn drops in my eyes as I kept pulling away or blinking. 4 open-heart surgeries, and I can't handle eye drops. Something is wrong with me.

I'm happy to report my retinas are damage free!

Happy, healthy eyeball

On Tuesday morning I started my iron infusions, a drug called Venofer. My hematologist is the only doctor I stayed with at Cooper, all my other specialists are at Jefferson. Since he is handling my iron and blood issues, I am getting infused there. The nice thing is I don't have to go over the bridge or pay for parking.

When I started infusions in 2011, I was going to the same place. There is a general hematology/oncology infusion room and a gynecology/oncology infusion room. I had been getting my treatments on the gyn/onco side, and was also scheduled there this time around.

I was happy to see one of the same nurses from 2 years ago, but sad to see some of the same women still getting chemo for their cancer. One of them recognized my tattoo (and she nicely said, "you look a little different."), we chatted and she said she's been getting treatments this entire time. This is the same woman, who every week in a benedryl premed haze, gets up and hosts BINGO while attached to tubes putting poison in her body so we have something to do while we are there. She humbles me.

That shit that looks like jaeger got pumped into my veins. In the wise words of my best friend's two year old son, "that's nasty!"

What's the name of this game??
I WIN!!!

After years of trying multiple different types of chemo and medications, nothing kicked my ass like this infusion did. By 7:30 that night I was in bed. At 8 I felt like a train hit me, by 8:30 the bone pain was so bad I was writhing around in bed sobbing (and I have one hell of a tolerance), and by 9pm, Steve was rubbing my back as I vomited into a trashcan because I couldn't make it to the bathroom. At 10, I was heaving up the Zofran.

Suddenly, a little constipation from the oral iron didn't seem so bad. Last night was the first time I ever regretted going forward with a new treatment. Between sniffles and hurls I wailed to Steve, "Whhhhyyyyyy did I do this?!?!?!" (Maybe it really was jaeger in the IV bag!)

Not one of my more glamorous moments, that's for damn sure.

It was a rough night, but I made it through. I cannot believe I have to do this again next Tuesday, and the 4 Tuesdays after that. Fingers crossed it gets better.

This isn't one of my more upbeat posts. Can't win em all...

Love you all.


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Philadelphia
I'm a thirty-ish year-old foul-mouthed girly-girl who spends my days saving the world as a nurse in a Pediatric Cardiac ICU and my nights trying to be a good wife and mama to my handsome hubby Steve and the best kitties, Princess Matzo Ball Honey Boo Boo Child & Linkavitch Cringer Chomofsky. Enjoy my ramblings as I struggle with systemic lupus erythematosous, cervical cancer, congenital heart disease, domestication, and the quest to find the perfect moisturizer.


Luck Fupus


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