Monday, April 30, 2012

Lupus Awareness Month

Happy Lupus Awareness Month!

This month, it will be a year since all this Lupus stuff started happening to me. It seems so ironic that I would get my first major Lupus symptom during Lupus awareness month. And my story shows just how unaware everyone is of this disease. Even during Lupus awareness month, when people should know then more than ever about it, could no one figure out what was wrong with me.

Let's Recap.
What is Lupus? Well, according to the Lupus Foundation of America, "Lupus is a chronic, autoimmune disease that can damage any part of the body". This means it is an ongoing thing. Something went wrong with my immune system and decided that my body is the enemy. It can no longer tell who the bad guys are and who are the good guys. Anyone can get Lupus, but it affects mostly women (like me) who are Black or Hispanic (not like me). Most people get it during their childbearing years (this is for the guys too, even though they don't bear children).

There are approximately 1.5 million Americans and approximately 5 million people worldwide who have Lupus. So why is Lupus only heard of in "House" episodes? Well, it's a woman's disease. It affects men less than women, so less research is done on it. Also, it isn't nearly as fatal as other health problems (like breast cancer). And we don't always look sick. We look healthy.

How Can You Help?
There will be plenty of ways this month you can help, especially on World Lupus Day (May 10th). I have a donation page with the Lupus Foundation that you can go to and donate. Tell a friend about Lupus. Buy a Lupus Awareness Shirt. Wear purple on May 10th to show your support. Do something! Silence will no longer be accepted.

Some Great Links:
Donate to the Lupus Foundation of America
Buy Purple Lupus Wristbands!
Buy a "Conquer Lupus" Shirt
Or click on the Important Links page and get your knowledge on!

I'm Not Weak. I Am Strong.

My ex said something to me that really got under my skin. Now, don't judge him because obviously you don't know the whole situation. But, I really want to challenge his perception of me.

He called me weak. He said I have a weak mentality. How am I weak? I don't understand it. He probably calls me weak because I listen to my parents and I respect them. Family is always first. Family will always be there for you. And when he made my mom drive me to the ER, he lost all right to be put first. Just saying.

Weak: 1. Likely to fail under pressure, stress, or strain; 2. lacking resistance; 3. Lacking firmness of character or strength of will

If I was weak, I would have just given up after getting sick. I would have just said "You can't change the way things are" and let things continue the way they were going. I would be relying on medicine to survive the day. There is so much I wouldn't have accomplished if I was weak.

1. If I was weak, I wouldn't have joined an Arthritis Exercise Program and go every day they have it.
2. If I was weak, I wouldn't have walked there today because my car had broken down. I would have stayed at home.
3. If I was weak, I would have gone on disability when I first got sick and work was hard.
4. If I was weak, I would not have started this diet. I would not still be on this diet if I was weak. 
5. If I had a weak mentality, any criticism would knock me down and hold me back.

Seriously, I could go on and on. I don't let things happen to me any more. I take a proactive approach. Sometimes, I have bad days. That doesn't make me weak. If I let those bad days destroy all the progress I've made, that would make me weak. 

Don't EVER call me weak. Or I'll challenge you to live a year in my shoes. And then, we'll see who's the real weak one here.

Friday, April 27, 2012

Stress and Lupus Don't Mix

Regions of the cerebral cortex associated with...
Regions of the cerebral cortex associated with pain. (Photo credit: Wikipedia)
Stress and Lupus don't mix. I'm pretty sure I've stressed myself into having a flare.

I'm done in. This isn't the kind of tired you get when you get sleepy and it's time for bed. This is an "in your head" kind of tired. It's as if my brain is so worn out it starts to just shut down. And I can feel little sleep elves in my brain trying to put me to sleep.

Then I've tortuous agony. Lots of random pain. I'll be in the middle of something when all of a sudden a random body part will experience unbearable pain and a few seconds later it will be gone.

At first I thought it might be my diet. But that seemed silly. I take my vitamins, I get enough protein and iron. I take my Vitamin D. The diet isn't the problem. So what is it?

My extreme stress levels probably. It's started interfering with my sleep, I haven't been able to relax for days, and now I've gotten sick from stressing.

This sucks.
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Thursday, April 26, 2012

Stress N' Skinny

Sorry for the break, guys. I needed some "me" time to just relax as much as possible. Not that I've done much relaxing.

It all started this past weekend when I got a text from my boyfriend saying "Babe, we need to talk". Uh oh, what now? I didn't found out until three days later when he somewhat rudely broke up with me. I was in shock. That was the last thing I expected from him.

The same day he texted me "Babe, we need to talk", I got a letter from my school. I ran out of time to finish my degree program. I can have a six month extension if I pay them $75. I can't afford to pay that on top of the rest of the money I owe them for tuition. Plus, I am so far behind in my program, six months would not be enough. That six month break I took when I got sick is kicking me in the head right now. I'm giving myself 15 days to finish 300 pages of notes, and even now I'm struggling to keep up with my 20 pages a day goal. I'm currently doing about 6 pages a day. Which doesn't sound like a lot at all, but it is.

Then, I'm currently going through a job interview process. I have to turn in some references and then I'm pretty sure I go in for another interview.

Surprise break-up, no money, an impossible deadline for my schooling, and job interviews. If you add that to all the daily stress I've been dealing with trying to manage my Lupus and my life, I'm going crazy.

But on a lighter note...
I tried on my skinny jeans yesterday. For the past few months, they haven't fit. I haven't even been able to get them past my thighs. But yesterday, they slid up over my thighs like it was no problem. Then I started to worry that I might not be able to button and zip them up. But they did. I had to lay flat on my bed to zip them up, but they zipped. I was ecstatic. Victory is mine! All my exercising and dieting has payed off. And I'm not even done yet. And right before bikini season, too. I'm going to look so good this summer.

Also, at my exercise class two days ago, I was doing my pre-class walk when I decided I would attempt some jogging. I did some jogging on a treadmill at the hotel I stayed at a while ago, but there's a difference to running on the sidewalk and a treadmill. I was able to run about three blocks before I needed to go back to walking, but it was a lot better than I expected. Now I just need some more fitness clothes and a sports bra. Once again, my broke-ness is killing me. I might just have to steal some from my little sis.
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Monday, April 23, 2012

Butterfly Mascot for Lupus

Day 24: Choose a health mascot for your condition.

Lupus already has a mascot. It's a purple butterfly. I like it, because we get "butterfly" rashes (malar rashes). It makes sense. I don't know why the color purple was chosen. But I like the color purple, too. It works.

Butterflies are delicate, like us Lupies are. We can say we're tough and in control, but the truth is our health is a delicate balance that anything can crush. But we're also resilient, just like the butterfly.

Lupus Mind Map

Today is a "Pick your own topic" day, so I chose to do a Mind Map of Lupus.
Megan's Lupus Mind Map
Oh, so much Lupus stuff.  Enjoy taking a look at my mind map and if you have any questions, feel free to comment.

Sunday, April 22, 2012

Smile and Listen

Hooray! I've made it to post number 50. I can now cross this off of my Bucket List. I've very happy and excited to share with you my 50th post, which also happens to be Health Activist Writer's Month Challenge #22: The Things We Forget.

I forget everything. If it isn't written down, I won't remember it. There's always something important I need to remember. But what I have found to be the most useful and beneficial thing to remember is one simple phrase. This simple phrase works in any situation that deals with people. Except at funerals. Skip the first half at funerals.

Smile and Listen. When you smile at someone like you're excited to see them, even if you don't know them, good things are bound to happen. I repeat this to myself every day before I go to work or go out in public. First impressions are always important, and a gigantic, real smile will always make a good impression.

After I smile, I need to remind myself to listen. My instinct is to just start talking about myself, but I have to be reminded that the world does not revolve around me. I'd get more enjoyment out of life if I would just listen. I have so much to learn if I would just zip my lips instead of trying to get all the things I want to say in. And it's such a terrible habit I've been in since I was little. It's a very hard one to break. Which is why I must remind myself to smile and listen.

Friday, April 20, 2012

Corny Hippo's Corny Hippo

Today's post is a Madlib Poem. And mine is definitely mad. It's like one of those Dada poems they taught us about in high school English. I hope it makes you laugh, because as we all know, laughter is the best medicine.

corny hippo's corny hippo

I attack my yoga mats and all the mattress brushs money;
I wish my televisions and all is damage again.
(I explode I calculate you up inside my Gene Simmons.)

The tires go appreciateing out in pasty and tart,
And hairy pikachu invents in:
I lock my love and all the freedom bounces Lupus.

I swinged that you danced me into dog
And fly me enormous, called me quite fried.
(I explode I calculate you up inside my Gene Simmons.)

doctor climbs from the pincushion, cell phone's butterflys strip:
shimmy toes and Georgia's Los Angeles:
I lock my love and all the freedom bounces Lupus.

I meditated you'd blink the way you defend,
But I bite sweet and I manage your flyer.
(I explode I calculate you up inside my Gene Simmons.)

I should have punctured a lamp instead;
At least when book strenghtens they sparkle back again.
I lock my love and all the freedom bounces Lupus.

(I explode I calculate you up inside my Gene Simmons.)

- Megan & Sylvia Plath

Create Your Own Madlib on

My Daily Schedule

Today's post was supposed to be a fake news article saying they found a cure for my health focus, but I didn't feel like that really would add any value to my blog and seemed just a little cruel. I don't want to get anyone's hopes up just to dash them. So I'm using one of the bonus posts instead.

My Daily Schedule
My daily schedule changes depending on the day or what I'm doing, so I'll go day by day and tell you what I do.

Monday, Wednesday, and Friday: I wake up at 8am to the vibrations of my phone alarm. I reach over to my bookshelf (which, conveniently, is next to my bed) and grab my water bottle and meds. I quickly take a swig of water, tilt my head back, and drop all my pills in and quickly swallow. I hate how the medicine tastes and this is the best pill-swallowing method I've found that keeps me from having to taste it. Then I run to the bathroom because usually I really have to pee. Then, I go to the kitchen and gather what I'm making for breakfast. Lately it's been a smoothie made from fruits, veggies, and soymilk. Then I either sit down in front of the TV and watch a quick show while I finish my breakfast, or if I'm feeling less lazy I sit at the kitchen table and read the newspaper.

I then check the time, usually I'm running out of time to get ready for my exercise class. I take a shower, put on my sweats and whatever T-shirt I can find, fill up my water bottle, gather my purse and everything else I need, and walk down the steps into my car. I drive to the park on the farthest end from my exercise class. I get there an hour before my class starts and I walk around and around the park. Sometimes I barely make one lap before I go sit in my car and wait for class to start. Other days I feel great so I keep walking until class starts.

When class starts, I walk up the stairs. I don't take the elevator. I think I'm afraid that if I give in and take the elevator, I'll become just as much of an invalid as some of those seniors.

After my exercise class, I go home and sit down. I'll do homework, work on this blog, or just browse the internet. Then when I get hungry, I make myself some lunch and knock some stuff off my to-do list if I feel up to it. Usually though, I just work on my homework.

When everyone finally is home, we all sit down and eat dinner together. But if people aren't there, mom and I will sit and watch The Big Bang Theory together. Then we all go into our separate rooms and either sleep or that's when I usually write my blogs posts.

Every Other Day
I wake up at 8. Take my meds. Run off to the bathroom. Weigh myself and take my measurements. Eat breakfast. Laze about until 10. Shower. Either do homework or something from my to-do list. Sit down and relax. Make lunch. Do whatever. Mom gets home, eat, watch TV show together, I write my blog posts, then off to bed.

Days I Work
I hate these days. Wake up at 8. Take meds. Bathroom. Eat breakfast. Shower. Take pain pill. Put on knee brace. Put on work uniform. Make myself a lunch for work. Blowdry my hair and put it in a bun. Fill my water bottle and get a Gatorade from the pantry. Get my book about how to deal with people, get my purse and keys, and leave the house. On the way to work (it takes an hour to get to work) drink the gatorade. Drink all of it before work starts. Usually I leave early enough to give myself time to mentally prepare for the workday. I read my book and recite my work mantra "Smile and Listen" over and over. Practice smiling. Walk inside the building, use the bathroom, and head back to the employee only section. Get all the food and supplies ready for the day. Practice more smiling. Look for somewhere to sit down until we head out. Use the bathroom one last time. Then I spend the next 6 hours standing. Six hours after taking the first pain med dose, I take another. That's why I always take it before work starts. After work, go home. Sometimes my parents will have the hot tub waiting for me. Put on pajamas or other comfortable clothes. Sleep.

Wednesday, April 18, 2012

5 People I Would Love To Have Dinner With

There is nothing like an autoimmune disease to put you through an emotional roller coaster. The smallest things remind me of my helplessness. All the victories that I celebrate become nothing.

Today it was just my mom pointing to my stack of laundry and saying "This is unacceptable". I don't think you can imagine how much hurt that little phrase caused me. I was sitting there studying and my mom came in and said "This is unacceptable". And suddenly I was aware of everything that I needed to get done and how far behind in everything I am. I just can't get ahead and I can't please anyone, not even myself.

I have laundry and I need to clean my room. My bathroom needs to be scrubbed yet again and I should probably do some vacuuming. I have 10 chapters to finish by the end of the month if I want to even hope to graduate by the end of 2012. I have work this weekend and my exercise class on Friday. My friend's birthday is this weekend and I need to get her a gift and fill my car with gas. I need to fill up my prescription soon and when I get my check I need to take it to the bank. On top of that there are the everyday things that need to get done and I just can't keep up. I don't have the energy. I'm losing my mind.

You know what I need? A life coach. Someone to help me get my shit together because I sure can't seem to do it. Which brings me to the main topic of the day:

The 5 People I Would Love To Have Dinner With

1. Laurie Gerber- President of Handel Group Life Coaching. I really need someone to help me get my shit together because I sure can't. I've heard a ton about the Handel Group lately, all of it very positive. If I had the money, I would hire one of their life coaches on the spot and have them help me whip my life into shape. I would love to sit this lady down and talk about the concept behind her business and how it works. Maybe get a few life pointers from her to make my crazy life easier.

Henri Matisse. Photo taken by
Carl Van Vecthen
2. Henri Matisse- I'm so upset that he's dead. He is my favorite artist of all time. Especially during the Fauve art period. It's all about using color instead of gradation to create shapes and using color to create feelings. And isn't he a handsome devil? I have so many favorite quotes from him, especially this one: "With color one obtains an energy that seems to stem from witchcraft." If I should aspire to be like any artist, it shall to be like Matisse.

3. Audrey Hepburn- It is impossible not to love her. When you look up "classy" and "a lady" in the dictionary, you see her face. I would love to talk with such an iconic woman.

4. Buddha or the Dalai Lama- I would accept a dinner chitchat with either one of them. As you can see by my rant I don't handle stress well. I do meditate, but I'd like to know more and I'd like to use their inspiring calmness to motivate me to strive for a more peaceful mind. If you want to know what to get me for a gift, I'd really like a book on Buddhism.

5. John Keats- Have you read his poetry? I would love to hear him read one of his poems. It's a shame he died so early. He had such great possibility. I'll have to stalk him in the afterlife so I can ask him about the symbolic meaning behind his poem "The Eve of St. Agnes".

Who would you love to have dinner with?

Relating Two Books to Lupus

I have been looking forward to this post since I first saw it early this month. Books are a passion of mine. I own over three hundred books and if I had the room, I would own even more. My favorite books are all classic novels. Jane Austen's Pride And Prejudice and Persuasion, Victor Hugo's Les Miserables, Alexandre Dumas' The Three Musketeers and Guy Du Maupassant's Short Stories all make me unbelievably happy. I wish everyone could feel the happiness and contentment I feel curled up with one of these books and a cup of tea.

The problems with this post is choosing which one of my books to choose a random phrase from. I've decided it would be easier to choose a phrase from a few of my favorites and then pick which one I like best.

"Cosette was musing sadly; for, though she was only eight years old, she had already suffered so much that she mused with the mournful air of an old woman"- Victor Hugo's Les Miserables

Butterflies, he then told me, are very good at seeing purple. In fact they have a very different range of color vision than humans. Reds are usually invisible for them, but they can see all the way up the rainbow scale from yellow to beyond violet and into ultraviolet." Victoria Finlay's Color: A Natural History of the Palette.

I can't decide. These two spoke the most to me. They both seem to relate to Lupus.

We'll start with the phrase from Les Miserables. Poor Cosette. Her mother had to leave her so she could go make money. She was living with the mean Thenardiers who were making this young child to lots of chores and would beat her if she did anything wrong. For her few years in life (she was 8) she had to deal with so much suffering. I, thankfully, have not been in the same situation. But, I have seemed to suffer quite a bit for my age. I'm barely in my 20s and already I have an autoimmune disease. Never in my wildest dreams could I have imagined that I would have to deal with something like this. Maybe when I was older, like in my 40's maybe. And sometimes I muse sadly when I'm all alone in bed. I miss my old life. I didn't know how good I had it.

The we have Color: A Natural History of the Palette. I'm an artist and graphic design enthusiast so I have a ton of art books. Well, not a ton. I have about 7 or 8. I wish I had more, but those books are expensive. This book is one of my favorites though, because it tells you where most of the colors come from and some of their symbols in the ancient world.

The sea snail Tyrian Purple comes from
(Image by M. Violante)
I like this passage because it involves butterflies and purple (violet). And lupus' symbol is the butterfly (I assume it's because of the malar or "butterfly" rashes we get. I still haven't figured out why purple is our color, but it's a good color. In ancient times, it was extremely expensive to make the color purple. That is why purple is always associated with royalty. They usually only allowed the color purple to be worn by royalty. Do you know how purple was created? Tyrian purple, the color used in ancient times to clothe royalty, was made by extracting the mucous secretions from a certain species of sea snail in the Mediterranean ocean. Very disgusting, but the color is so beautiful.

I think it's pretty awesome that butterflies can see something we can't see unless we have an ultraviolet light. I think anyone with a chronic illness or disease can relate to that. You start seeing the world in another light after your diagnosis. You become more aware of your body and everything around you. And you can see what healthy people don't truly understand; you are never truly living unless you have your health.

Tuesday, April 17, 2012

The Hardest Lesson I've Had To Learn

The hardest lesson I've had to learn, and I'm still in the process of learning, is you can't half-ass your health. Well you can, but I'd strongly advise against it.

I've always lived my life with the belief that I'd have plenty of time to do what I should, so why not do what I want now while I can? I always believed that I'd be in my 30s before I had to start really taking care of my body. Little did I know that I wouldn't even make it to my 20s before I had to take my health seriously.

I've never enjoyed physical activity. Except for figure skating and I played tennis for a few years. Other than that I never felt the urge to go out and run around until I was out of breath and sweaty. My family has always been very active. My parents participated in sports for adults while my sister played every sport imaginable it seemed. None of that ever appealed to me. I would much rather stay inside with a good book.

Some very delicious but not so
healthy pumpkin muffins I made a long time ago
I've also never really focused on whether or not I'm getting all the vitamins and nutrients I need because the food I eat is generally healthy. My mom is a vegetarian, so we always have a lot of fresh fruits and veggies on hand, but there's also meat and stuff my mom makes for the rest of the family, which isn't always that healthy.

Even after I got sick, I was still doing what I wanted rather than what I should. I was still eating the same, I wasn't exercising, and I had pretty much given up hope of every being okay again. And doing what I wanted wasn't helping me at all. It probably was making me worse.

About six months after I first got sick, I was lying in bed in too much pain to move. All I could think about was how my life went from pretty great to miserable. I went from living with my boyfriend and working to laying in a bed with no life at all and living with my parents again. My schoolwork was getting months and months behind and I never felt good enough to go out and have fun. And I was scared that I would be that way for the rest of my life. I didn't want to miss out on having fun on my 21st birthday. I wanted (and still want) to travel the world and live in some of the world's major cities and most artistic cities. But with the way things were going, I would never get the chance. When I realized I would have very little chance of having a great future if I kept on the path I was going, I knew I had to start changing things.

I'm gonna stay awesome!
It started with a bottle of hand sanitizer. If I went out in public, I'd use that after shaking peoples hands or touching door knobs. I was starting to get sick less often. Then I started my arthritis exercise class. It has worked wonders for me. Then I started my "Lose 10 pounds in 45 days" thing. I have three days left and I definitely haven't lost 10 pounds. But I have lost almost two inches around my waist and hips and I have noticed how much better I'm starting to feel. And a few days ago I decided I would start an anti-inflammatory diet. It's too soon to tell, but I have a feeling that it will help me get my life back to the way it used to be.

I'm still tempted to just give up and lay in bed until I eventually wither and die, but now I can at least see the possibilities the future holds for me if I keep taking my health seriously.

Sunday, April 15, 2012

Pinterest for Lupus

I created a Pinterest board devoted to Lupus and inspirations to keep me healthy titled Lupus: Conquer In Spite Of. I know, me and that Conquer thing again. Here are my top three images and an explanation of why I chose them:

Here it is again, my Keep Calm poster! Staying healthy is a battle against myself. The winner of the war will be the one most prepared. Which is why I exercise as much as I can, I started an anti-inflammatory diet, and I try not to put myself in germy situations. I want, more than anything else, to be healthy again.

I don't like exercising anymore than the next person. But I know that if I stop, I will really suffer. Exercise has made my life so much easier. To quit on a bad day would be to reverse all that I've gained.

And finally, I chose this picture because there aren't that many people who know what Lupus is or how it affects a Lupus patient's body. This is a great infographic, and I think it should be printed out and taped to telephone polls and shop windows across America. Other diseases get all this recognition, like cancer, but Lupus never does.

I was planning on writing a lot more, but I will be making a visit to my doctor early in the morning. We're talking waking up at 6 and leaving the house by 7. It will be a long day.

How I Write A Blog Post

I have always been passionate about writing. Throughout elementary school and middle school, I wanted to be an author. I desperately wanted to see my name on the cover of a book and I ached to watch people read my books. I still have a desire to publish a book, but until that day comes, I satisfy my need to write by blogging.

When I write, I get into a sort of trance-like state. Sometimes I have no idea what I've written until I go back and edit. My mind knows what it wants to say. It doesn't need me to fight for the right words to express myself. I can do that later when I edit. I write and write and write until it sounds like it belongs on the page. Quite often, I'll be in the middle of writing a post when I decide that I hate what I've written and it's not what I'm trying to say so I erase it all.   That usually happens when I try to force a post and I don't let my brain do what it's good at.

Music and Writing

Danger Days: The True Lives of the Fabulous Ki...
Danger Days: The True Lives of the Fabulous Killjoys (Photo credit: Wikipedia)
There are times when I struggle to get into the trance-like state I need to write a post. And that's where music enters the picture. A good song that gets my heart rate up is all I need to write. And you never know what song will work for that day. It's always changing. For example, today it's My Chemical Romances' "Danger Days: The True Lives of the Fabulous Killjoys" stuck on repeat. A couple of days ago it was "New Low" by Middle Class Rut. Good music with a good beat will not only help you write faster but I find that it also helps me find my rhythm. 

The other key ingredient to writing a good post is location. I write in bed in a reclining position so that I can rest my joints. It's hard to focus when you're in pain. I usually will stick a stuffed animal or a small pillow behind my lower back for extra lumbar support. Plus my bed is right next to my bookshelf, so I'm never far from my favorite books or a dictionary. Sometimes a little literary inspiration is all a person needs.

Once I've finished my post, then I come up with the title. By the time I'm finished writing, I'm usually exhausted so I don't spend as much time coming up with a title as I should. But I never know what I'm writing about until it's finished. Even if I plan it out, the content always changes.
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Friday, April 13, 2012

My Perfect Day

My dream day would be having a sexy little rendezvous with either Frank Iero from My Chemical Romance or Kenneth Nixon from Framing Hanley. Boy would I love to see those two in a hot tub. And if those two are unavailable I'd settle for Channing Tatum. 

But since that will most likely never happen, I'll settle for a different type of perfect day. I'd ask you to close your eyes and imagine this, but then you wouldn't be able to read what I've written. My day would go something like this:

I wake up under my nice warm covers with the sun lighting my room up once again. I open my eyes and smile. I can see my boyfriend sprawled out like a starfish on the other half of the bed. I slide under the starfish arm closest to me until he pulls me closer. Just like a starfish would before it devours its prey.

We're staying in the city I spent most of my high school years at. All those years of homework and teenage melodrama, I now miss. Those years were far from carefree, but I was healthy and I had lots of friends that I absolutely loved. You don't realize how much you'll miss those days.

I look out the bedroom window and I see pine trees and tall grass and wildflowers. It's late spring, so the air is warm and everything is in bloom. We shower, get dressed, and eat before we start our day. My Lupus doesn't even cross my mind. I'm not in any pain and I'm full of energy.

After we finish chowing down, we fill our water bottles and hop in my car. When we finally reach our destination, I grin when I see my boyfriend's reaction. I don't think he's ever seen anything like this. You can't hear the sounds of traffic. All you can hear is wind in the trees. Looking around, all you can see are trees. And a path leading up the mountain. It's about a 5 mile climb to the top, and our legs are burning by the time we reach it. But looking out at the view, we realize it's all worth it. 
Photography by Megan McCarthy
You can see the world from up here. We admire the view. Even though I've been up here a few times, it still takes my breath away. And my boyfriend is just as impressed. We sit up here and just take time to talk with one another. It's been a while since we've had the opportunity to. Eventually, we pull ourselves away and start our descent. We get to my car, and drive down to my favorite restaurant where all my friends are waiting for us. 

They make the most incredible fries in the world there. I hope I never find out what's in them, because it can't be healthy for you. They always arrive at your table hot and crispy and a golden brown. There's no better way to make a memory than a bucket of fries and a group of your friends to share it with.

All my dearest friends are there waiting for us. We order two buckets of fries and spend the rest of the day talking and laughing and having more fun than I've had in years. It feels so good just to hang out. No planning. The only money coming out of our pockets is for food. We aren't spending money to have a good time. We're just enjoying each other's company and that's all we really need.

By the time my boyfriend and I get home, it's dark out. We make ourselves a quick dinner of appetizers and sit on the back porch looking at all the stars. We take a deep breath in. The air here isn't full of smog. Instead it's clean and crisp. It feels the way air is meant to be. And it smells like heaven. 

That would be a perfect day for me. I have had days similar to this, but never exactly like this. I still need to take my boyfriend up there so he can experience it for himself. It's such a wonderful feeling.

What would make your day perfect?

Thursday, April 12, 2012

My Day Off: Day 13

I'm taking the day off from writing my post today. I really need a break. This blog, work, school, trying to keep up with my mounting to-do list, and putting up with my parents has just become too much for me. I need a break from something, and this is the only thing in my life I have control of anymore.

The pain and the exhaustion just never ends does it? You get little glimpses of what it's like to be healthy again, and that's when it returns with a vengeance. 

I'm sorry to sound so bitter, but I am. This past week has been hell. I'm always tired, always hurting. I'm broke. I literally have 8 cents in my bank account right now. I have work tomorrow, and the thought of standing on my feet for 6.5 hours is making me cry. My mom is always on my back about something. Homework, cleaning, chores around the house, my job, and always discrediting my pain and what I'm going through. I'm not lazy. I'm tired of hearing how I'm lazy. I try so hard to keep up. I just can't. And I'm frustrated enough by it already without my mom hounding me about it.

I miss living on my own. I miss cooking my own food. I miss actually enjoying my job and being able to support myself. I miss my daily walks. I miss seeing my boyfriend all the time and not falling asleep while doing homework. I miss walking up stairs without feeling like I ran a marathon.

Fuck Lupus. I just want a break.

Glass Etching and Mirrors

This morning I looked in the mirror. Actually, I haven't yet. I have way too much to do. Right now I'm multi-tasking. I'm checking my email, writing this blog post, and working on a design for the glass etching I'm going to do today. (No I'm not going to etch into my mirror).

I haven't decided if I'm going to make it for my mom's Mother's Day gift or for her birthday. Both are around the same time. I'll probably go with Mother's Day because it's the soonest one. But then I'll have to think of something for her birthday, too.

You know what I don't like about this glass etching cream? It's an acid that eats away at the glass. If you get any on you, it's gonna hurt like crazy. And probably do some serious skin damage. Which is why I'm gonna make sure I'm completely covered from my toes to my nose. And even a bit higher.

I can't wait to show you all the pictures of how it comes out. It's either going to look hideous and we can all have a laugh at it, or it will look amazing and you'll all be jealous. Either way, this should be fun.

Have a lovely day to today and please try to stay out of trouble.

Wednesday, April 11, 2012

Theme Song To My Life

This was tough. I listen to music so much. I can sing every song on the radio, even if I hate it. So I have a huge collection of music to go through to decide what the theme song to my life will be.

At first I wanted to pick Middle Class Rut's song "New Low". But I feel like sh*t today, so that's probably why I chose it. But a theme song has to last through your ups and downs and stay relevant, so I needed to pick something else.

Then I was thinking Ke$ha's song "We R Who We R" would be a good song, but then I realized I'm not some show on MTV where everyone gets drunk and sluts around. So that one was cut.

And then I found it. The song that was meant to be my theme song. "That Green Gentleman (Things Have Changed)" by Panic! At The Disco was made for my life. "Things are shaping up to be pretty odd." My life is odd. I am odd. I can see  this song playing while a video of me doing all this silly stuff I do is running.

My life has never been normal. In school I've always been that weird smart girl who loves to read books. I was bullied all the time for being a brainiac. In high school, I was very "straight-edge". Never did drugs or drank alcohol. And where I went to school, that was far from normal. I get weak at the knees for old books. I like the way the smell when they're slowly decomposing. (It's a bit vanilla-y). One of the items on my bucket list is to pet or feed a hippo. And now I have this crazy, wacky disease. I'm meant to be odd. And the older I get, the more accepting I am of all my quirkiness.

I'm going to tell you a secret. It has to do with theme songs. One of my many, many dreams in life is to have my own reality show about my life. It's a narcissistic dream that my more noble self deplores. My life would have to get a lot more interesting though. I didn't get pregnant at 16, I don't drink copious amounts of alcohol, and I'm definitely not rich or a housewife. I'd much rather use it as a tool to bring awareness to chronic illnesses. Someday, I might get there.

What's your theme song? And do you have a secret reality show dream?

Oh, and don't you miss Panic! At The Disco? I loved them. I know they still sort of exist, but it just isn't the same. I have a poster of them hanging in my bedroom, right over my bed. Right next to my Metallica poster.

Monday, April 9, 2012

Dear 16-Year-Old-Me

Dear 16-Year-Old-Me,

You, or rather I, have Lupus. It's always been lurking in your life waiting to strike. Three years from now, it will find its opportunity when you give yourself a decent cut while shaving. Do you remember those hot flashes you used to get in elementary school? They weren't hot flashes. It was a malar rash caused by sun poisoning. You'll learn that later. And you know how you're always getting UTIs? That will go away once you start taking your antimalarials.

Ya, I said antimalarial. It's neat how it comes from the bark of a tree. Well, the medicine you'll take is most likely synthetic quinine. Did you know quinine becomes fluorescent under ultraviolet light? Too bad it wont make you glow like a glow worm. That would be pretty cool.

The hardest thing you'll have to learn to deal with is the chronic pain and fatigue. Right now in high school, you're dealing with the fatigue. You just don't know it yet. But it makes perfect sense now. It's really just fatigue.

And then there's the pain. That's tough. I'd recommend staying active. The more fit you are when the symptoms magnify, the easier time you'll have dealing with them. And be nice to your friends. They'll be the only ones who stick by you even though you'll be living in a different state from them.

And finally, graduate this year. Don't wait for your senior year. You'll be much happier if you've already got your AA out of the way when you go through this. I didn't, and now I'm struggling to juggle school, work, and this disease. It's overwhelming. Plus, you'll have to rely on your parents again. You were living on your own, but after getting sick, you couldn't work or pay rent anymore.

From your future self,

P.S. Take care of your body. You don't have 20 years to prepare for old age, like you thought you would. You only have three years. Be prepared.

Sunday, April 8, 2012

Keep Calm And....

Keep Calm and Prep for Battle! Day 9 of WEGO Health's 'Health Activist Writer's Monthly Challenge': Our job is to "Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition?". It was a lot harder than I thought it would be.

I was going to do "Keep Calm and Conquer" but, I think that theme is getting old. You can only hear me talk about conquering so often before you start rolling your eyes and laughing at my obsession with the word. And then I was trying to think of stuff relating to Lupus. I had nothing. Lupus is lame. "Keep Calm and Take Your Vitamins" is lame. "Keep Calm and Listen to Doc!" ain't so hot either. Then my brain lit up like it was the fourth of July and Poof! "Keep Calm and Prep For Battle" was born.

Now how in the world does this relate to Lupus or chronic illnesses? Well, let me refer you to Defining Lupus and Myself. You can see my funny little sketch of my internal battle. When I first learned of my disease, I had an easier time understanding what was happening inside me when I compared it to a medieval battle. No nuclear weapons or tanks or anything like that. Actually, it's less medieval for me and more like ancient Greece. Swords and spears and vicious battles. Pillaging and ransacking defeated areas is common.

My body is like Greece. We're the "good guys" (at least in this case). The "bad guys" are germs and stuff. But if you remember your history, you'll remember that the Greek city-states didn't always get along. Like Athens and Sparta fighting in the Peloponnesian War. But they get along sometimes to fight off the enemy (like Persia in the Persian war. Killing off King Darius' army). And that is how my body is. My body is Greece. Fighting each other and Persia. And my body suffers the consequences in the form of Lupus symptoms. Like pleurisy and chronic pain and chronic headaches.

I want to be Sparta. My dissenting body can be Athens. And germs will still be Persia. (Actually, I'd probably be Athenian since I like words and Spartans tend to get right to the point. But that is irrelevant.)
Image by Alexander Chechetkin

We Spartans must prep for battle. We don't have spears and swords like the real Sparta did. But we aren't trying to kill people. We're trying to quell an internal battle and fend of the evil Persians at the same time. That is why we choose to eat healthy foods. We strengthen our immune systems any way we can. We take our medicine to fortify our army. We try to exercise regularly and get enough sleep. We take our doctor visits seriously and try to be the best patients possible. We ask questions. We educate others. If we don't do this, our army will become weak. And they will lose the war. And losing the war means suffering. It means a slow and painful death. At some point in time, Sparta will cease to exist. It happens to everyone. But we can slow down the process.

Do you use any analogies to understand your illness?

Saturday, April 7, 2012

The Conqueror

Conquer: Verb. 1) To defeat in combat; to subjugate. 2) To overcome an abstract obstacle. From

Conquer is such a powerful word. It makes you think of Spanish conquistadors coming to America and stomping out the Aztecs and Incan natives that lived there. Not very pleasant, but very powerful. The word 'conquer' is not a word you can take lightly, which is why I like it. And it fits my purpose perfectly.

Liberty Leading the People by Eugene Delacroix
I am overcoming an abstract obstacle. Lupus isn't really something physical. It's not a type of bacteria or virus. Lupus is more of a status. Lupus is chaos. It's disorganized confusion and violence. It is the United States' Civil War and the Revolutionary War all at once. No one is winning and my insides are just bombing the heck out of everything. Think WWII and dropping bombs all over Europe. (Can you tell I like my history?) The painting of the French Revolution by Eugene Delacroix illustrates this perfectly. It's messy, chaotic, and there are dead bodies everywhere. Anarchy!

The song 'The Conqueror' by The Workday Release is my personal theme song. When I close my eyes and listen to this song, I see myself rock climbing or on a tiny boat with a wooden sword chasing after three headed monsters. I'm reminded of the young fearlessness you feel as a kid when you imagine defeating dragons and going on adventures. You're never afraid that the dragon will roast you with its fiery breath because you know that you'll lop its head off before it even gets a chance.

It's that kind of courage and bravery that we all need. I love the lyrics "From above these monsters seem so small/The fear had gone out from our voice/They turn and run, afraid of the fall to the ground" That is how we should all feel with everything we deal with. We can conquer! There is nothing that can hold us down or keep us back. There's always the fear of death and pain in the back of our minds. What for? If we die, we die fighting. Pain? Well, I'm always in pain. That would be nothing new. Lets take out our wooden swords and chase after those dragons. Bring back the courage and bravery we had as children.

What is your personal theme song? What song inspires you? What makes you feel strong and brave.

Friday, April 6, 2012

Health Haiku

Today I get to write some Haikus for my Health Activist Writer's Monthly Challenge. This is gonna be so much fun!
Image by Pop Catalin

Chronic Pain
By Megan McCarthy

I hate feeling pain.
So I exercise daily.
Lies! Fine, every other day.

Steroid Curse
By Megan McCarthy

Steroids are evil.
They turn me into a cow.
No more sweets, darling.

Image by Billy Alexander

Lupie Spoons
By Megan McCarthy

Let us go hiking.
Ooops! I used up all my spoons!
Time for a nap, then.

Veggie Monsters
By Megan McCarthy

I love chocolate.
But I'm a Veggie Monster.
I will be healthy.

I really Haiku'd it up, didn't I? Getting my poetry on!

Thursday, April 5, 2012

Quiet: Day 5 HAWMC

So for day 5, we're supposed to go on and then use the image to write a blog post and relate it to our health focus. And I got cows on their way home. Lovely.
Bringing Them Home, Sunnyside Farm by Peter G Hall

Well, when I think of cows, I think of all the weight I gained from prednisone. But no one wants to hear me moan and groan about all the weight I've gained.

This picture also makes me think of nature. And since the cows are going home, it's dusk. That's usually when I'm the most tired. It's also when everything starts to get quiet.

Ooh... Quiet. And nature...

When I lived near a forest, I used to walk far away from the roads and houses, up the trails to the spots very few people frequented. I would sit on a rock and just listen. I would breathe they way they teach you to when you meditate, and I would listen to the wind blow through the grass. I'd watch little squirrels bound from tree to tree and listen to the little birds sing their songs.

(Quick interruption: I am a firm believer that we have a very deep connection with nature. It is my opinion that there are thousands of little tiny strings connecting us to the trees and the wind and the earth under our feet. I believe that the earth has a pulse, and we humans are just a tiny part of it. I also believe in Mother Nature. And lastly I believe that nature has a consciousness that we used to be tapped into until we started to develop cities and industrialize.)

I would close my eyes and try to feel with my mind everything around me. I'd focus on my sense of smell and touch and my hearing. I'd feel along the tiny strings in my mind and open myself up nature's natural balance. I'd always leave feeling safe and relaxed and more aware of everything around me. I'd feel happy and just a little more sane.

I got sick a few years after moving back into a house in the middle of a city with very little natural environment. When I go back to visit my house near the forest, I always feel great. No more pain, no fatigue, nothing. And often I wonder if it's my quiet time and connecting to nature that is my little cure.

Does nature play a role in your health?

Wednesday, April 4, 2012

I Write About My Health Because...

I remember the day my doctor told me I have Undifferentiated Connective Tissue Disease very clearly. The visit before, he had suggested I might have a rare type of arthritis, like my aunt. She's always in pain and has to get her medication through an IV. My symptoms were very similar to hers, so we all assumed that was probably what I had. It's not what I wanted to have, but you don't have much of a say in these matters.

We were sitting in his office waiting for him to come give me the verdict. I was so nervous. I hated my mom for being there, while at the same time I was very grateful that she was there to support me.

My mom left to use the bathroom right before my doctor came into the office. He and I sat in silence while he looked through my records. My hands were shaking and my heart was beating out of my chest. I knew that in a few short moments, this would be the moment I would remember for the rest of my life. This would be the moment my fate would be decided and my whole life would change drastically.

My mom finally came back from the bathroom. The doctor stood up, shook her hand, and then leaned against his bookcase before starting his introduction. "Well, you don't have what your aunt has. Looking at your X-rays, at your blood work and your symptoms, you have what is called Undifferentiated Connective Tissue Disease." He then went into his explanation that basically, I have Lupus, but I don't have enough of the symptoms to be defined as such by the American College of Rheumatology. My heart dropped when I heard the word Lupus come out of his mouth. I had heard of it before, but I knew almost nothing about it. I desperately wanted to cry, but my mom and doctor were there. I needed time to process my feelings on my own. There were too many people there, and I had to listen to my doctor's explanation, my mom's questions, and figure out how I feel all at one time. I was overwhelmed.

When I got home, I googled Lupus and tried to find blogs written by people with Lupus. I looked up everything, from pain management, to cures, home remedies, what is Lupus. Everything I could think of. I didn't find much. Not as much as I would have liked. The blogs I did find, I didn't feel like I could relate to them. Or they hadn't been updated in years. I wanted useful information I could apply to my life. I wanted to see someone living with Lupus and living a full, wonderful life.

This is the face of someone who will conquer all.
After my medication started kicking in and I was able to do more things, I knew I had to do something for other people out there with Lupus or similar problems. Even though I am not yet at the point where I can say I am living life to the fullest,  I can work my way up to that point. People can watch me become something greater than this disease, and maybe I can help someone else. I don't want anyone to feel as alone and helpless as I did in the beginning. I want to be the face of Lupus. I want to be the face of victory and overcoming challenges. I want people to look at me and say "She is the girl who conquered in spite of everything she was put up against."

That is why I write about my health.
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Tuesday, April 3, 2012

Day 3 HAWMC: If You Had A Superpower

If you had a superpower – what would it be? How would you use it?

Most of my life I have wanted the ability to read people's minds. Out of all the superpowers people have come up with, the ability to read people's minds is the most powerful of them all.

Image by Artem Chernyshevych

There are so many situations where I wish I could read people's minds. Like when I'm trying to explain what Lupus is and how it affects me, knowing what is confusing the other person and working on fixing their misconceptions would make the process so much easier. Or when I'm at work, I'll be able to focus on the problem at hand instead of guessing and taking shots in the dark.

Of course there are things you wouldn't want to know when reading peoples' minds. You would get an uncensored view of everyone's opinion of you and every dirty thought that crosses their mind. You would be able to hear every single thing that crosses their mind. And just listening to some of the things I think, it makes me second guess my desire to listen to everyone's thoughts.

But the benefits outweigh the negatives by far. If I could read minds, I could be an expert in Human Relations. I'd be able to get a good job because I'd be able to know what the interviewer is thinking. I could gamble in Vegas, make millions, and then donate the money to find a cure for Lupus. The possibilities are endless.