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.
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.)
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).
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.
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.
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?
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.