Tuesday, April 30, 2013

Lupus Awareness Month Awesome Giveaway!!!

Happy Lupus Awareness Month!!!

I have an exciting announcement. I'm holding a contest! In honor of Lupus Awareness Month and my upcoming 2 year anniversary of triggering my Lupus I am holding an awesome contest.

The Prize:

The 32 GB Amazon Kindle Fire HD Tablet.

This bad boy is 7" and has a 1280x800 HD display of awesome. It's got a polarizing filter and anti-glare technology so you can actually see it. 

"Oh, but Megan, I don't really read much. Why would I need one?"

Glad you asked. Not only will you have access to over 23 million TV shows, movies, books, audiobooks, and a whole slew of popular apps and games, you also will have access to Facebook, Twitter, Netflix, Pandora, and so on. Did I mention it also has a camera so you can use Skype or take selfies everywhere you go?

And if we raise:

$1,000.00: I will add on a $25 Amazon gift card so you can get stuff to put on your new Kindle.

$5,000.00: I will turn that $25 Amazon gift card into a $50 Amazon gift card.

$10,000.00: If you can manage to help me raise $10k, I will make that gift card worth $100.

Contest Rules and How To Enter:

When is this contest going on?
5/01/13 Midnight PST - 5/26/13 Midnight PST

How do I enter?
Go to http://lupus.donorpages.com/LosAngeles2013/MeganMcCarthy and donate $5 or more to my "Walk To End Lupus Now" fundraiser page. Each $5 donation is equal to 1 raffle ticket (so $15 is 3 raffle tickets). Make sure you use an email address that you check frequently because that is how I will contact the winner. The winner will also be announced here on ConquerInSpiteOf.com on 5/27/13.

How is the winner chosen?
I will tally up each person's 'raffle tickets' and then use Random.org to choose a random winner. The more you donate, the greater your chance of having your name drawn. Only people in the United States of America can win, and if the winner does not contact me by 6/8/13 I will pick a new winner.

So what are you going to do with all that money?
I am doing nothing with the money. It is going straight to the Lupus Foundation of America and will be a part of my total in September when I walk during the "Walk To End Lupus Now". And if you will be in LA during that time, feel free to join my team!

What would you do with a new Kindle Fire HD?

Wednesday, April 17, 2013

Wordless Wednesday: Word Cloud


My Lupus Word Cloud

Write text here...
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Saturday, April 13, 2013

My Health Acrostic

Poetry time!

My Hashtag: #ConquerInSpiteOf

Corrupted body
Ornery and rife with sores and pain
Never letting me sleep
Quackery promising a cure, some relief
Unexpected strength
Everyday I struggle and survive
Remembering the worth of living

Intermittent
Nihilism of the body

Spending time enjoying life
Patiently waiting for a cure
I never thought I'd find my purpose in disaster
Thankful to find direction
Even though I'd prefer healthy to this.

Oh dear I'm running out of ideas
F*ck Lupus
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Friday, April 12, 2013

Hindsight



I was thinking about this yesterday before I had taken a peek at the prompt for today. Before getting sick, I didn't realize that being a patient was more than being sick and taking medicine. It's a type of lifestyle.

What I Thought It Meant To Be A Patient: Pre-Lupus

When you're healthy, you think that sick people go to doctors, be sick, and then doctors fix them. It's a passive experience. The only thing you need to do is get to the doctor and take whatever they give you. It's how the media portrays it, too. You get sick or injured, you go to the doctor, they fix you. And if they can't fix you, then you die. That was my impression. I didn't know there are so many things doctors can't cure. I was pretty sure only HIV/AIDS and stuff you were born with weren't curable.

What It Really Means To Be A Patient

You actually have to do stuff as a patient. What? Seriously? I thought being sick was enough. Now they're telling me I have to participate! Someone has seriously been feeding me the wrong info for a long time.

Of course I could take the passive route in patient-hood. Show up for appointments, let the doctor control my health, take my medicine only if I feel like it. It takes little effort to be this kind of patient.

But that is no way to get healthy. It's like school. You can take the passive route. Showing up for class when you feel like, doing homework and studying only when you want to, and letting other people choose what classes you are going to take. Unless you make changes, that is a sure-fire way of getting nowhere. And the same goes for your health.

Angry Bull by Sebastian Fissore
You must grab the health bull by the horns. You are in charge of the steering. Who says the bull gets to be in charge? Occasionally it might drag you in some direction you don't want to go, but you have to redirect that crazy animal where it needs to be.

How Do You Do That?

Become that one student in school who kisses ass and is always doing extra credit. You know, that one kid who annoyed the rest of the class because they made everyone look bad. That's you now. You are that ass-kissing-extra-credit student. Take an interest in your health.

Learn what's going on in your body. Monitor your symptoms so you notice changes. And work to improve your health, not just through prescription drugs. This means improving your diet, getting whatever exercise you can (I mean, there are even exercise programs for people with arthritis), and lowering stress levels (something I still need to work on). When your body is as healthy as it can be, it has an easier time dealing with all of the problems that come from chronic illnesses, like Lupus.

What advice would you give to someone who wanted to take a more active role in their health?

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Tuesday, April 9, 2013

Tips For Professional Caretakers

Welcome to day 9 of WEGO Health's Health Activist Writer's Month Challenge. Today's topic is....

Drum roll please....


What advice do you have to give for caregivers out there- professional or otherwise?

Well, I already did a post like this last time that was focused on family caregivers. This time I will stick with the professional caregivers. 

Some Awesome Tips For Professional Caregivers of Patients with Lupus

  1. Lupus is painful. So making appointments and stuff as pain-free as possible would be lovely. I would be happy if the waiting room seats had better lumbar support. Especially if you're really busy and we have to wait forever for an appointment.
  2. Don't treat us like we're insane. I've only had this happen to me twice, but I do tend to get weird looks because I know so much about different medicines and body parts and stuff. I swear, I'm not here for the drugs. I'd rather never see you again. No offense. And I'd much prefer to never have to take another pill in my life.
  3. Be present when dealing with us. You could have a really busy week, but right now the only thing you need to be focused on is me, your boss/patient. I'm paying you for your time, I want your time. This may seem commonplace to you, but to me this is all crazy and strange and is not something I'm very happy to be dealing with for the rest of my life. Respect that and me by engaging in the appointments.
I'm sure there are some more great tips out there, but I've been very blessed when dealing with the professionals in the healthcare world.

What advice would you give professional caretakers?



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Monday, April 8, 2013

Werewolves and Lupus


Lupus has two different animal mascots. The first mascot, which is the official mascot, is the butterfly which is inspired by the butterfly rash.


The second animal mascot is less official than the first but is just as common in the Lupus world. In latin, the world Lupus means wolf. Therefore a wolf is often pictured in association with this disease. We are also lucky enough to get our own constellation. It's not actually ours, but it's called Lupus, so we'll take it. 

But neither of these really feel like they should be the mascot for Lupus. Instead, we should stick with history and mythology and use the werewolf as our animal mascot.

If you look at the history of Lupus, you will see that a lot of the symptoms are similar to the symptoms of being a werewolf. And also vampires. It has been suggested that both Lupus and something call porphyria were the cause of the werewolf myth along with hypertrichosis and lycanthropy.

See, Lupus has a lot of the symptoms of turning into a werewolf. The discoid lesions look a bit like bites or scratches. The malar rash has been suggested to look like the pattern of fur on wolves. And then there are the symptoms that are definitely "werewolf related".

There is the tendency to run a fever which is common in the werewolf myths. (Unfortunately, the Twilight series has ruined both vampires and werewolves for people. Seriously, 'Oh, Jacob was so hot, his skin was burning. Oh dear, Edward is as cold as ice.')
Cover of "Underworld (Unrated) [Blu-ray]&...
Cover of Underworld (Unrated) [Blu-ray]

Then there is the disfiguration that comes from all the stupid Lupus problems like arthritis. The joint pain could be associated with the shape-shifting involved with being a werewolf.

Then there is the sensitivity to light, which I never hear associated with werewolves, but you do see that all the time with vampires.

So I guess all Lupies are secretly werewolves. With a touch of vampire. It's like Underworld! We're like Eve, Michael and Selene's child. Both vampire and lycan (werewolf).
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Sunday, April 7, 2013

Thank You For Your Unsolicited Advice


I think everyone who has a chronic condition or illness has heard some crazy, misinformed bogusness from various people in their lives. And random strangers. I get quite a few of these gems from my own family. I just hope you never hear me spew out something crazy and ridiculous.

Crazy Things I've Heard About Lupus

"When you get Lupus, you have to get chemo. And joint pain isn't a symptom." 
Um... Fuck you. Do you really know what you're talking about? This chick who said that actually has Lupus. And was telling another friend on Facebook that she couldn't have Lupus because she has extreme pain in one of her legs and some other stuff. Boy, did I go a little crazy when replying to her ridiculousness. Yes, I understand that some people have to have chemo when they have Lupus. But it isn't a requirement. 

I really went off on her for that one. Mostly because she should know better. Second, she was scaring the poor girl who is yet to be diagnosed with anything. And we all know that stress is the enemy.

"Why do you still have hair? My friend has Lupus and she lost all her hair."
This woman I worked with practically accused me of having hair because she believed I should be bald if I have Lupus. And she asked this almost every time I saw her. And no matter how many times I explained that there are many symptoms associated with Lupus and not everyone gets every symptom. "Also, if you'd like, I can show you all the sores on my scalp if that will make you feel better. And the ones in my mouth. Oh, I also have some in my ears, too. Did I mention I have extreme fatigue and joint pain, also?"

"So-and-so has Lupus and she cured it so you should go talk to her"
This was something my boss at my old job told me. It was a co worker of mine who had Lupus, but was able to cure herself. I'm ashamed to say that as soon as I got home I blogged about all that she told me and posted it on here. I have since deleted that post and I would like to apologize to anyone who read it. There is no cure for Lupus; there are only ways to manage symptoms.

This one hurt me the most because it got my hopes up. Part of me still desperately looks for something to cure Lupus. But I know now that claiming a cure for a chronic disease or illness is like stabbing a knife deep into the heart and twisting it.

"But you're too young to have Lupus"
Of course I am. That's why I just happen to have it. 

That's another one of those painful things to hear. Thank you reminding me of my loss. I really want to be reminded that I'm not going to be able to live as carefree as other people my age.

And my personal favorite: "My friend thought that Lupus wasn't real because he saw it on 'House'. He thought they just made up diseases".
I have no words. *Shakes head*

What's the craziest thing you have heard about Lupus or a condition you have?

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