Wednesday, May 14, 2014

Something Bigger Than Me

I’ve posted before about having lupus and pulmonary hypertension (I know, I know...I'm quite the medical case). Both are serious diseases (not that there are lighthearted ones), one of them rare. When I was diagnosed, I went through pity parties and battled symptoms that I thought would alter my life forever. Today, I think what has most been altered is my perspective. I appreciate life in a different way and little things don’t stress me out as much. The reality that they don’t matter enough to monopolize my mind rings truer somehow. That said, until yesterday, I felt a bit isolated in my experience.

Let me explain. I have tons of support from friends and family. Honestly, I don’t think I would be where I am without them helping to lift me out of Pity World. Yes, that’s a place and my support system loved me hard and kicked my ass until I agreed to leave it. All of that said, no has been able to feel what I am going through physically and emotionally. The combination of the two diseases has drastically altered my life plans and has limited my abilities.

Yesterday, that changed. I went to my first FDA public meeting. I even sat on a panel and talked about my experiences with pulmonary hypertension. The purpose was to educate them about the symptoms associated with the disease and the attributes of an ideal treatment. The hope is that the open dialogue will lead to development of new drugs and hopefully a cure.

As I sat in the room, I heard my own story over and over again. I also heard a lot of heartbreaking stories that overwhelmed me a bit.

In the end, I walked away with a new sense of validation, a renewed appreciation for how blessed I am, a strengthened faith and a sense of accomplishment for being involved in the fight for a cure. Over the last several years, I’ve done a lot of awareness work through my blog, walks for a cause and educating through personal conversations. Almost all of that work was lupus-focused. Now, I’m in the room speaking for another part of my experience and I’m hopeful it will lead to a cure. My hope lies in my faith, which is strong beyond measure. Yesterday cemented the importance of that.

What causes do you get involved in and how have they impacted you for the better?

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