800 Pound Gorillas Starving When They Need Feeding

Thinking outside of common subjects that my rare disease communities are hesitant to discuss (for fear of coming across as morbid or negative), I was thinking of innovations we should be celebrating, but are hesitant to because they may run afoul of our friends & family’s personal ethics & would cause several heated personal & social media discussions over the ethics involved.

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Social Security is NOT Just For “Old People”

Sometimes, when an important issue arises, I have to call attention to it. As I inch closer & closer to possibly needing Social Security Disability benefits I get concerned not only over the process & fight I will need to get it, but if it will even be there when I need it? How many of us in the younger generation, (unless we have parents reaching retirement age) really know about Social Security & what it does?  How many of us recognize the urgency & diligence we need to possess to keep it going?  (Let me be clear, this is not a political soapbox posting. This is a bipartisan mess that needs to be sorted out.)

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Empowerment When It Counts

Today is a day where I woke up not feeling well. My energy was off.  But yet, I still got up & did something with my morning. As Ronda Rousey says, “I’m not a DNB (Do Nothing Bitch)!” I think I need to buy one of her shirts & wear it for inspiration on days like today. (Though I admit, my interpretation of being a DNB might differ from others. I’m totally picking up what Ronda’s putting down with it at it’s core, however).

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Survival And The Other Side of the Coin

When I first started talking with my doctor at Penn in late 2010/early 2011 & we had the initial facts & figures talk, it was estimated that the national averages for double lung transplants were around 50-60 percent from what I remember. In addition to that percentage seeming to correlate with data I could find online during that time from reputable sources.  I am going to be honest, some of the initial information was hard pill to swallow & the statistics hard to hear.

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To Share Or Not To Share

Thanks to Elin Silveous, I am pretty sure I pinpointed the reasons for not starting a blog sooner.  She tweeted this important article today from U.S. News & World Report.  While I am all for advocacy & awareness, it can be a fine line deciding what to share or not to share when it comes to my rare diseases.

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Outgrowing Resources

This weighs fresh on my mind today. I just received my testing schedule for my lung transplant evaluation on August 17-21.  One of my friends received a transplant at UPENN a few years back (I referred her over to my doctor, after problems she faced at another center). I went to visit her at the Gift of Life Family House & was really impressed with their programs & accommodations. Little  did I know then, that I’d have to utilize these services.  But what if I didn’t have this resource?

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A Day in the Life

This week is Donate Life Week in Australia (Donate Life Month is April which I will have to make a mental note of for future reference).  In honor of this, but also because this cause is so important year-round (across the country & globally),  I am highlighting transplant documentaries that show factual & accurate representations of transplant journeys.

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