Molly Takes on Washington

Today is Lupus Advocacy Day in Washington D.C. I am proud to say that my Mother, Don, and I have spent the day meeting with representatives in Washington. We are talking to them about the reasons we need more federal funding for Lupus Research.

There was a really interesting presentation yesterday from a researcher from the CDC. They are actually creating a Lupus Registry, which is a landmark move towards finding out what Lupus is and how we can cure it. They are starting the registry in Atlanta, Georgia and Detroit and Ann Arbor, Michigan. They are working with the state health departments to go through all of the insurance information, lab tests, and doctors diagnosis so that they may finally establish the first ever "true" census of Lupus patients.

All of the numbers that are used with discussing the prevalence of Lupus have been estimates because there has never been a real study on how many lupus patients are out there. The current estimates say that there are 18,637 Lupus patients in Oregon. That's 1.2% or the population that is currently dealing with this debilitating disease. It still amazes me that with that large a section of the population that there hasn't been a new therapy approved by the FDA in over 50 years.

I am incredibly lucky to have such supportive friends and family. My parents have been amazing this week at taking care of me, taking an interest in my disease and it's potential, and coming with me to every meeting and telling their perspective on my illness. Everyone should be so lucky to have friends and family like mine to lean on and that you can always count on for anything.

Some of my favorite moments this week have been getting to know more people with Lupus. Every time I hear someone else's story, it reminds me again of what a devastating disease it can be. It's the fact that this disease is so debilitating that makes it so much more inspirational when you hear the stories of how they are overcoming this disease and fighting back. They are all here in Washington to tell Congress that we are not sitting down in a corner and dying. We are fighting back and we are going to find a cure for this disease.

"To be nobody-but-yourself -- in a world which is doing its best night and day, to make you everybody else -- means to fight the hardest battle which any human being can fight; and never stop fighting."

~E. E. Cummings

Fear

Sorry it's been a while since I've posted anything, but it's been quite the eventful month. I was going through a flare, struggling with rib pain and fatigue. Every day I would wake up and hope that this was the day I had the energy to get up and have a normal hectic day. Unfortunately, it was mostly just another day I had to spend napping and resting. I've had many flares since I was first diagnosed, but this one went to another level.

I was struggling with severe pain, including chest tightness from the pleurisy symptoms. The next thing I knew, my heart was pounding so fast it was all I could hear. My stomach started to churn and there I was laying on the bathroom floor after throwing up. I think I passed out for a while because I woke up there on the floor and was extremely glad that the phone was right there. I called my mom and asked her to come over as soon as possible. My head was throbbing and all I could hear was the pounding of my heart.

I managed to crawl back to my bed and passed out again. The next thing I heard was my house alarm when my Mom came into my house. I was sweaty and weak, but she came and got me back to bed. We laid there for a while until I was sure I wasn't going to throw up again. I don't know what it is, but I always feel safer and better when my mom is close by. It must be something from childhood, but I am extremely grateful that I have such a supportive family.

My mom put her hand on my chest and could hear it beating so quickly. She wanted me to go to the emergency room right then, but I was so exhausted and miserable, I couldn't stand the thought of dragging myself to the car to get there. I talked her into letting me wait out the night and going to sleep.

I woke up early because of the pain and my mom took me to a previous scheduled appointment. I was completely incoherent and not making any sense. I felt like I was in a foggy state where I couldn't get my head to focus. My mom decided to stop listening to me (thank God!) and took me straight to the emergency room.

The hospital took one look at my symptoms and rushed me back to a room. I honestly thought this was just another flare and my mom was overreacting. It turns out I was very wrong. They ran me through an EKG, a chest X-Ray, a CT Scan, echo cardiogram. It was halfway through all of these tests that a surprising feeling hit me. I was scared. Not just a flutter, or moment of fear, I was bone-chilling scared. They were hooking me up to machines, telling me the five different diagnosis they were ruling out and all the different things that could have happened to my heart.

I have been fortunate with my Lupus that I have never had a true organ complication yet. Yes, I know how rare and lucky I am that this is the case, but in the back of my mind, I also always knew in the back of my mind that the day would come when things would get more complicated. It still surprised me though at how scared I became when they told me that my cardiac event was, of course, lupus related.

I've read every book I can find on Lupus. I truly believed that if I was informed as to what kind of complications my disease may bring that I would be prepared when that time came. I guess that plan didn't quite go the way I thought. I still encourage everyone to learn as much about their disease as possible. But if I were you, I wouldn't believe that can make it go away. Fear is everywhere and can happen at any time. It's just a matter of whether or not you let it get you down.

Me? I hopped a plane to Mexico and laid in the sun. Okay, not always a realistic solution, but it doesn't suck, right?? :-)


The more you are motivated by love, the more fearless and free your actions will be.
-Dalai Lama