Marfan Trial Nearing the End!

As many people know, I have a genetic connective tissue disorder called Marfan Syndrome. This disorder affects my whole body, but the most dangerous organ it affects is my heart. It can cause my aorta to become enlarged so much that one day I might need aortic valve replacement surgery.

I was enrolled in a clinical trial from 2007-2010 that looked at two blood pressure medicines (Losartan and Atenolol) and how they can affect the aorta in Marfan patients. Losartan was tested on Marfan rats and it showed that it decreased the aortic size and helped regrow muscle. This is a very exciting possibility for the Marfan community. There is no cure to Marfans, but this could definitely be a more effective treatment than a traditional beta blocker that slows down your hear rate just enough to hopefully manage the aorta. The trial finally has all of the participants it needs and will be ending in 2014! I am anxiously awaiting the results!

Although I believe I was on atenolol during my trial which made me tired, I was still happy that I participated. I want to help advance the research for Marfans so more fathers, mothers, sisters, brothers, etc. don't die early from this disease like my dad did.

If anyone would like to do more research on Marfan Syndrome, the National Marfan Foundation website is www.marfan.org.

My Resolution Words

Last December, I was listening to Klove and got the idea to make up Resolution Words for the New Year in lieu of actual resolutions. These are words that you can remember every day to help you focus on what you are trying to achieve. Some examples can be "dream, achieve, joy, etc". My resolution words for this New Year are "simplify and focus". I want to simplify my life and be able to focus on what's important at the moment. In the past, I have put way too much on my plate, and worried about the next activity. I want to be able to focus on the moment and really enjoy it whether it be work, exercising or playing with my daughter. Let's hope I can stick to this because it seems to be working for me so far. :-)

Humbled by Homeless

Tonight I had the opportunity to help at at Canvas Community downtown. A warming shelter has been set up this week as the temperatures drop in the teens overnight. It was great to sit down with the people and hear their stories. There were many sad stories and some stories of hope.

I met a 19 year old girl that lost her job, was beaten by her boyfriend and was brought to the shelter. She has no family to live with and has sickle cell anemia. Her sister has been trying to donate plasma so they can afford to pay a deposit for an apartment. She has been looking for a job, but has not had any luck.

I also met an elderly man who recently moved to NLR, and his SSI check was not sent to his new address. He is not able to pay his rent and utilities for this month and will probably be evicted. It was so sad as he assured me that he didn't want to be homeless and was doing everything he could to get the needed money. There was nothing I could do for him, but apply him for food stamps.

On a positive note, I did help a guy pick out an outfit for his interview tomorrow with McDonalds. He seemed like a nice guy, and I hope he gets hired. I also referred several people to the MAP Program at UAMS to help with low cost prescription drugs and doctor's copays.

It's so easy to see these people on the street, pass them by and go on with our lives. But when you get to talk to them, you see they have feelings, dreams and wants too. They have stories that will break your heart and make you realize how lucky you are to just have a bed to sleep in.

The Last Year of My Youth!

Today is my 29th birthday, and I'm jokingly calling it the last year of my youth. Everyone knows that you are supposed to make your mistakes in your 20s so that you will be responsible and settled by the time you turn 30. That is why I'm making a list of 30 Things to do Before I'm 30.

Here are a few of my things:
To eat a complete fried food meal (no veggies or anything healthy).
To watch TV for an entire day and do nothing!
To get a tattoo (Josh will object).
And to make a huge difference in someone's else's life (I needed one productive goal).

As for what I have done on my 29th birthday?I actually worked most of today, but I did meet my husband for a yummy lunch at Trios. Later that afternoon, I met my birthday buddy, Andrea, for shoe shopping at DSW.

These are my new birthday shoes -

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Haha, just kidding! I could barely walk in them!!

Here are the shoes that Andrea found -





Andrea didn't get the shoes either even though they made her about five inches taller.

After we left DSW, we headed to Charming Charlie's where we tried on sunglasses while dancing to 80's music. Then we met Karen at Starbucks for yummy Toffee Mocha's and conversation. Finally, I made it home to dine with my family and play with Lily before bed. I'm looking forward to continuing the birthday celebration at Loca Luna tomorrow night!

Thanks to all my friends and family for making this a fabulous day!