Thursday, March 30, 2017

This Sunshine.

Getting a rare diagnosis comes with some problems. It gives you some answers, but:

The answers tend to be scary.
There may or may not be enough data to even pretend you have answers.
You're probably sicker than you should be at this point because it was difficult to recognize.
There most likely is no cure.



Pulmonary Hypertension. 

It nearly killed my unborn baby and me three years ago. They couldn't figure out what it was, and we kept getting much worse. Looking back, I don't know how we survived it, but it still bothers me I was left without proper treatment and watchfulness.

My story is going to be cut short. 

But in the time I have, it's going to be worth telling.

Don't get me wrong, even when you've decided to focus on the future, you'll get those moments. Absolutely righteous anger...




But, it's not productive to stop in that spot permanently. 

The good news is somebody has figured it out. I've met many patients so far who've switched to my current MD after he saved their lives. If anyone can help get me effective treatments, it's going to be him. And I intend to fight like hell.

I would love to be able to see my children grow up. If that can't happen, I'm going to go as far as I can, then. The beautiful family I have as an adult is my whole world. That is the sunshine, the reward for a life regained.

I have decided to just focus more on my writing. In my stories, I can give people who have no hope something. I can inspire someone to be fast and brave enough to make a difference in saving themselves or another person. That is going to have to be my legacy. Mostly because I'm no damn good at anything else. But partially for those other reasons. And I think all of that, focusing in on what remains, is how I'm best going to overcome this.


I was lucky enough to hear this last week, played on our local NGEN radio station while driving somewhere with the kids. There has probably been nothing in my life so poignantly popping up at the moment I needed it the way this did. 



And I feel like I need to update this with the news I recieved today. Right now, with treatment, the PH should improve, and my heart appeared strong in the testing even with the appearance of possible scar tissue. I don't even have to take another new medicine if I don't want to. 

I get to be left alone. 

I know now that I can't waste any of this time gift. 

I got the good news I needed. 















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