There’s No Place Like Home

I have been away awhile.

Since the last update I did have to go back to the hospital and was there most of January.

Turns out, the rest of my body didn’t like my first set of drugs (cocktail).  I’ll spare all the gory details, but it WAS NOT fun.

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Being Human

I admit, sometimes I use writing as an outlet for venting frustration because it’s not a strong suit of mine to openly vent verbally.

As much as I’ve enjoyed many of my occupations & volunteer pursuits over time, I’m finding I’m processing & shedding a lot of baggage I wasn’t even aware I had been carrying around up until very recently.

This whole transplant process I’ve found has awoken some internal anger in me that I had just “sucked up” & buried for years.  Occasionally, I see it surface or bleed out in conversations & thoughts.

I don’t think it’s negative to put it out there or admit to it.

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Infantile Spasms Awareness Week

This subject was important for me to talk about today.

One of the tell-tale signs that pointed out the fact that I had Tuberous Sclerosis Complex (TSC) as a baby was my having infantile spasms at around 7-9 months old.

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Latest Transplant Waiting List Data as of 10/23

Now, here’s an interesting infographic.  According to UNOS, as of 10/23/15 here is the breakdown of how many people are currently listed & awaiting transplants & the breakdown by organ/organ combination.

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“Drink From The Well of Your Self & Begin Again” – Charles Bukowski

For the past 8 years or so, I really have been wanting to write on a regular basis. Although, I’ve never felt right about rigidly disciplining myself to do so because when I have it comes off contrived.  Charles Bukowski did it on a regular basis through poetry, novels, & other works. It was more inspired than not (even he admits it).  But for me, it always just seemed to come when it felt like it; even when I would try otherwise to coax it out, until very recently. Feels like lately a day without blogging seems an incomplete day…

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Adjusting To New Learning Curves (Why It Pays to Be Curious)

One would figure by now that I would know tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM) inside and out.  I know quite a bit, but there’s always something to learn in dealing with these diseases because of their unpredictability.  Luckily right now, I’m in good shape with the TSC aspects & it’s just tracking research updates & advances.  But there’s a few new aspects that are waiting in the wings for me to dig into.

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