Our lives on a Tankful

...of oxygen that is! Actually, that isn't quite correct, as I only use oxygen at night - but many many of my phriends are hooked up to oxygen tanks, Intravenous (in the veins) or subcutaneous (under the skin) needle infused devices, huge supplies of medicines, ice chests to keep the medications cool and some of them are even bound to wheelchairs, walkers or worst yet -- bed.
We all have one thing in common - we have Pulmonary Hypertension. Pulmonary Hypertension is a rare, progressive and incurable disease that affects the pulmonary artery and the rest of the circulatory system. You'll learn more later :) In the meantime, this is a journal of my adventures since being diagnosed, the phriends I've met along the way and how we want to shout to the world "we may be small in numbers but we are mighty in heart and hope".

Thursday, June 21, 2012

Across the Gap to Conference 2012 Day Uno

I know I'm not the only one who is waking up this morning with a nervous stomach and fear of the unknown. It's only natural, and it gets to the best of us at the best of times. Heck, it's even been out of fear that has taken me so long to get to blogging - this is only my second blog since 2007 - ok - second blog ever. But, I owe it to everyone else out there who lives in fear to show how stepping out can really be the right thing to do....hopefully.... :)

Ok gang, it's Thursday June 21, 2012 and even though today is all the pre conference tado - I'm sure the festivities are well under way. It sounds like the partying has already begun as FaceBook has been pretty quiet except for travel updates. I've been pretty quiet on there as well. Homecoming was full of it's usual excitement, drama, and tragedies as ever - toss in final exams in 4 online classes, late nights with old friends, late night and hot tea with my momma, the constant running and Pulmonary Hypertension and you have quite a mess. Oh, did I mention that my son also came down and saw his 3 sons for the first time in 2 years? His youngest had never met him before except as a new born. They spent 3 days with us - and it was amazing watching the four of them bond. The most tender of moments was after Dane went running around with the youngest, Lucian, on his shoulders - Lucian says to me, "this is MY daddy!" Made us both well up with tears. Some day, you'll know just how monumental this day was - besides being Father's Day.

CONFERENCE!!! And I'm scared as poop!! It's odd. I'm usually a very openly excitable person and this has me shaking in my boots. I have to wonder if it isn't all related to the craziness that went on after my last right heart catheterization and what I believe (and all my other physicians) is a major misdiagnosis due to computer, equipment, and doctor malfunction. Nothing like being left on the edge of the fence and your fanny hanging out to dry. If it walks like a duck, talks like a duck, and breaths like a duck - by george, it's a duck!!

I hope to find some answers - or at least a good path and phantastic friends at conference 2012.


Love and hugz 'n prayers to all

Sylvia

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Location: Winter Haven, FL, USA

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