Friday, July 16, 2010

Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile.

Friday, July 2, 2010

AFTER CUSHING'S: Wish and Do List

I have become so discouraged lately. I am really at my wit's end. No tumor on my 3T pituitary MRI this past Tuesday. Biochemical evidence is still equivocal, docs say, "not high High HIGH enough," I say. I am so depressed. I just keep thinking of all the things that I am missing by being sick.

If there is one GOOD thing about having a chronic disease that makes you as hopeless as Cushing's does, it is that I have had lots and lots of time to sit and wish and wonder.

SIT because my weak leg muscles, caused by documented adult growth hormone deficiency, keeps me from walking or running or many other activites.Shoot, I can't even stand in my own air conditioned kitchen for longer than 10 minutes at a time. That's sad.

WISH for a change so that I won't be trapped in a broken body that doesn't match my vibrant spirit.

WONDER when I will ever get to do what *I* want to do again, do the things that make me *me*, and wonder, if given that chance, what would I want to do.

I know me, and when I am down in the dumps, I really need to focus on something positive. Not just teensy weensy positive. Big mama gargantuan monolith o' positive.

I decided to share things as I think of them, things that I hope to do once my bod is both physically and mentally ready to do them. I hope that day is soon. For you, I hope you can find it in yourself to galvanize your wants and dreams, and even with this awful disease, feel like they are still close enough to reach out and touch them.

You see, I have a love for language, cultures, and photography. Cushing's disease has kept me grounded for the last 10 years, and I am just itching to get back out in the world--to explore and to live. Who wants to go with me? ~mm

National Geography Expeditions' Photography Workshops and Expeditions



For more than a century, people have thumbed through the pages of our magazines and felt inspired by some of the best photography in the world. Now we’d like to invite you to travel to incredible places with some of the best photographers in the world. Our Photography Expeditions are designed for photographers of all levels. You’ll learn tips and techniques while exploring fascinating places with one of our renowned photographers. Our Photography Workshops, also led by a top National Geographic photographer, cater to those who seek more intensive instruction, and build photo editing, instruction, and critique sessions as well as photo assignments into each day’s schedule.

Doesn't this sound awesome?!

Another thing that makes me happy is thinking about travel. I love all the possibility, the expectation, the wonder. I love it all. Rick Steves' Travel Philosophy captures it better than I could ever say it. The intensity of travel: I love it, and I need it.

Rick's Travel Philosophy (excerpt)

Travel is freedom... one of the last great sources of legal adventure. Travel is intensified living with maximum thrills per minute. It's recess, and we need it.

Extroverts have more fun. If your trip is low on magic moments, kick yourself and make things happen. If you don't enjoy a place, maybe you don't know enough about it. Seek the truth. Recognize tourist traps. Give a culture the benefit of your open mind. See things as different but not better or worse. Any culture has much to share.

Of course, travel, like the world, is a series of hills and valleys. Be fanatically positive and militantly optimistic. If something's not to your liking, change your liking. Travel is addicting. It can make you a happier American, as well as a citizen of the world. Our Earth is home to nearly 6 billion equally important people. It's humbling to travel and find that people don't envy Americans. Europeans like us, but with all due respect, they wouldn't trade passports.

Globetrotting destroys ethnocentricity. It helps you understand and appreciate different cultures. Travel changes people. It broadens perspectives and teaches new ways to measure quality of life. Many travelers toss aside their hometown blinders. Their prized souvenirs are the strands of different cultures they decide to knit into their own character. The world is a cultural yarn shop. Back Door Travelers are weaving the ultimate tapestry.