I was having lunch with my Sclero friend the other day when she said "She started new medications for her lungs and hoped she would live another 10 years" if not "She wanted us know she didn't want a funeral - she wanted a party."
What an Eye Opener
My friend is the leader of our Scleroderma Support Group out here in Phoenix. She is my Big S mentor. I called HER when I freaked the F out after hearing my own diagnosis last year, and now she is discussing her end.
She has had "the Big S" for 8 years, this being her 9th year and the year of the onset of severe PAH requiring her to use oxygen.
It happened pretty fast... No shortness of breath and playing racquetball .....to feeling a little out of breath one day and finding her PAH score had sky-rocketed.
Stories like this perpetuate my "Why" obsession.
Why am I short of breath - Is it the Big S or is it the extra 10 pounds I put on.
Why was my BP elevated at the Walgreen's - Is it the Big S or am I just annoyed my RX isn't ready yet
There is always a WHY about everything now.
Before it was just, "damn, I have one hell of a headache" - but not now.
Now its... "Did the Big S make it upstairs?"
Ah...The good old days when a cold was just a cold. When an achy knee was just "playing too hard with the kids"
But now my reality, no matter where that reality lies - in the forefront or back recesses of my mind - will always be... Why? Is it the Big S
I wrote a poem once when I was a kid. I don't know WHY (no pun intended) I even remember it.....
Why is the ocean blue?
To match my eyes?
Why is the sky blue?
To match the far off scene of the ocean?
Why is a question that never gets answered...
Why is the ocean blue?
Yep - That was me - A regular Ralph Waldow Emerson
It's funny though, that I remember that silly poem and now I live in this world of WHY's that do in fact never get answered. No Cure? No Cause? Why? We don't know.
Anyway - I read a story about an event called Fashion for a Cause where the creator said it pretty well:
"Living with Scleroderma is a fight that has no ending. Scleroderma doesn’t allow you to win, then share the victory with your loved ones and continue on with your life. The only thing you can do is build a solid platform to stand on and prepare to fight for the rest of your life. It is a battle without an end. "
Well, I am in the battle and I am gonna give it a damn good fight! Even if I don't know WHY!!