When & How Do Recipients Say Goodbye To Their “Original” Organ(s)? Do They?

I do have a question I’d like to pose to some of my transplant friends, of whatever organ or whatever status.  I know that many transplant recipients feel compelled to write their donor families, yet how many have felt the urge to write a farewell note to their original organ(s)?

Continue reading

Advertisements

Struck In The Face With Ableism

I want to thank David M. Perry for calling my attention to something distressing last night.  It both sickened & shocked me, but then really as much as it “ground my gears” also had me examining my own thoughts & attitudes towards the two rare diseases I’ve been living with for so long.

Continue reading

Old School/Retro Is Sometimes The Answer

This is the last time I rag on Dr. Thomas Lowder, my exercise study investigator (who uses an old flip phone), for being “old school” or a “throwback”. The words came back to bite me recently. Luckily, he’s a good sport about it.

Continue reading

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.

Continue reading

It Sounds Almost Too Easy: Print An Organ

I didn’t feel up to a movie or a “regular” TV show on Monday night. I felt like I wanted to watch something to feed my inner science geek.  I was surfing on my Apple TV & remembered as a kid how occasionally I would sit still for NOVA (if the subject was interesting enough).  I was fumbling through the offerings & saw NOVA Science NOW W/Neil DeGrasse Tyson.  Since I tend to find Neil’s programs interesting, I thought I’d check out the program, “Can We Life Forever?”.  Even though this program was from 2011 (or 2012), one of the segments had something I’d seen a lot of buzz about recently….3D Bio-printing.

Continue reading

Doctor MIA? Insurance Issues? Maybe the Answer Lies In “Uber”-Style Medicine?

I know laying out this “business side of medicine” seems a trite & boring discussion that no one should care about. But it’s anything but that.  This is something everyone, whether they have chronic illness, rare diseases, or not can relate to & I’m sure find equally frustrating when it’s happened.  How many of us have called to book an appointment with their primary care doctor or specialist & been told (less than nicely, I might add), “Dr. X is no longer with the practice”. Or “Dr. X no longer takes (insert name) insurance.”

Continue reading

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).

Continue reading