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.
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