Thursday, July 25, 2013

"Check, baby, check, baby, 1-2-3-4..."



Hi my Loves!

As you read this, liquid poison is getting pumped through my veins. And I'm not talking vodka! It's infusion day!

I said yesterday that I was actually looking forward to today, just because it will actually force me to slow down. Gwen said she has a friend who refers to her chemo day as "Spa Day," because she gets to take a break from life. I'm digging it. I wonder what will happen if I ask my nurse for a mani/pedi...

I know I've mentioned a few times how much it bothers me that lupus doesn't get much "publicity." You never hear Brian Williams on the Nightly News reporting how scientists have come up with a breakthrough that may lead to a cure. Adam Arkin does commercials for Thomas Jefferson University Hospital praising their great orthopaedic services (did he play an orthopaedist on Chicago Hope?), not the top rheumatologists in Philadelphia. Nick Cannon nearly died from lupus nephritis, Lady Gaga was once in the news that she was "borderline positive" for the disease, and Toni Braxton is a lupus sufferer. Their voices could do SO much for the lupus community.

Hell, on eight seasons of House, MD, it was only ever lupus once. Why? Because it's never lupus.

How wrong you are, Dr. House. This disease plagues more Americans than multiple sclerosis, sickle cell anemia, AIDS/HIV and cerebral palsy, combined.

Truth.

Last week I was watching The Golden Girls and this came on.



A lupus commercial  on real television, and for once no one was making a joke!

Now granted, it was on The Hallmark Channel after 10pm, and not during the Nightly News (get on that Brian Williams!), but hey, we'll take what we can get!

A REAL COMMERCIAL!!!!

And OK, the mask reminded me of that  V For Vendetta movie.... a bit creepy.


But still, an entire 30 second commercial devoted to lupus. I was so excited!

The commercial adresses how the majority of those with lupus (87% to be exact), downplay their symptoms, so as not to upset family/friends. Basically, we put on our happy face masks.

Or, our creepy V For Vendetta masks, as the case may be.

Friend: "How are you feeling Marla?"
Me: "Awww, not too bad, I really can't complain."
Truth: "I'm in pain all the time, my ass explodes with diarrhea at least 3 times a day, I can't go out and enjoy the beach like the true Jersey Girl I am, it hurts to take a deep breath, my mouth is covered in sores, I have no sex drive nor could I imagine how Steve would want to be with me since I look this way, my medicine makes me fat and shake like someone going through withdrawal, I have awful night sweats (Must. Buy. Chillo.), I'm exhausted but I keep pushing myself, my belly is sore from where I give myself an injection every night, I can't have kids, i'm depressed, I'm disgusted when I look in the mirror, I often forget my words and stop in the middle of a... of a... wait, what was I saying? <long pause> Oh yeah, I often forget my words and stop in the middle of a.. of a... sentence. (Brain fog is a true symptom of lupus, and has caused some of my coworkers to go to my boss and question my abilities as a nurse. I've also been approached for stealing narcotics. I used to work alongside some real gems.) I go to sleep every night knowing tomorrow I may not be able to physically get out of bed, could be in kidney failure or have a debilitating seizure or stroke at any time. I can't do so many of the things I love because this disease has affected virtually every aspect of my life. Yep, I'm good!"

If I said that, people would run. Or I'd have no friends left.

52% of us also do this for our physicians. Yes, the same people who are supposed to be helping us live as normal a life as we can with this awful disease, we aren't truthful with.

It's hard to know if any given symptom has to do with lupus.

Hmmm, I'm extra gassy today. Was it the 9 pounds of cheese balls I ate during Here Comes Honey Boo Boo, or are my intestines inflamed?

Hmmm, I notice I've had a poor appetite this week. Is it because I was grossed out watching Pumpkin manhandle a 4 pound Pigzilla (BBQ pork sandwich) on Here Comes Honey Boo Boo, or is it lupus?

Hmmm, I've been more forgetful than usual. Is my brain fog getting worse, or did I just zap too many brain cells while watching Here Comes Honey Boo Boo?

Because lupus affects EVERY organ system in the body, it's obviously so important to inform our physician, wether we think it's stupid, or not.

LupusCheck has developed an awesome checklist that is easily filled out and printed to bring along with us when we see our doctors.

I'm a huge nerd, so I proudly did my homework for my rheumatologist today!


Here's the link to the PDF checklist!

And remember, kids...

Your true friends and rheumatologist CAN HANDLE THE TRUTH!!!

Love you all <3

8 comments:

  1. To the people in my life that I have watched suffer through terrible and terminal illnesses, I always say I may not have a good response or any response at all, but I'm happy to hear the truth because I think it's important for you to be real and share it. Don't sugar coat shit on account of my feelings. No one does it for you.

    Possibility of symptoms being from Lupus AND HBB: high.

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  2. I agree with Steph, as I often do. True friends really do want to know. Even if I can't do anything about it, I can be a shoulder to cry on or lean on.

    It would be too awesome if you could get a mani/pedi at treatment, but if not, I hope there's Bingo!

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  3. It just plain sucks what you have to go through, friend. I hope you do have a friend that can hear the truth and not run away because I'm sure sometimes you need to spill it! I imagine its incredibly difficult to live the life you want to live, and have the marriage you want to have with this chronic disease. It's a totally different life than you and Steve prepared for and I can't imagine how hard that can be!

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  4. Yay for the commercial! That’s awesome. I totally agree with you about the V for Vendetta mask (you should wear one to your next infusion)! The first time I heard about lupus was during one of the early seasons of Top Model, one of the girls had it. I don’t remember her name but she had really curly hair. But even then I didn’t really understand the disease and how horrible it can be! It’s true that I can’t relate to a lot of your symptoms, until I read “mouthsores”. I’m sure yours are probably worse than canker sores but for some reason I am also plagued with canker sores, sometimes 3 at a time and it’s crazy how something so small can put me in a cranky mood all day long, especially when I try to eat. I can’t even imagine pairing that with everything else you listed… you are such a strong person!! Although it sounds like watching Here Comes Honey Boo Boo may explain roughly 27% of your symptoms. ;) But seriously, you are so inspirational to me and I’m sure all your other readers!

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    Replies
    1. Oh and just a few days ago I finally realized that all of your post titles are song lyrics. Now who's the one with brain fog?

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  5. Firstly, I totally think you zapped loads of brain cells while watching Here Comes Honey Boo Boo!! Just sayin!

    As a person who has watched many people suffer through illnesses it's the worst thing to watch and not be able to help but the one thing we can do is listen, and you should be able to spill your guts to the people that care about you most! You are always loved, and you inspire me especially, so much Xxxxxxx

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  6. I saw that commercial on another channel and thought of you! Idk why they have that damn mask but I am SO glad at least there's a bit more chatter.

    As I grow my blog one of the most important things for me to do is to educate those on Lupus, the disease which is considered silent/invisible to the eye.

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  7. Good for you for doing your homework! (LOL!) I know what you mean about downplaying symptoms, I deff do that when I go to the kidney doctor, too! I guess it's just being nervous that they will tell you your symptoms mean something even worse? I dunno. It's best to be truthful though, like you're saying!

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