An exerpt from my novel Between the Flannel Sheets

[Guest guest]

Between the Flannel Sheets

CHAPTER II

So as I started at the beginning of the end, I write as I have awoken from a

deep sleep drenched in sweat. Night after night and day after day whenever I

sleep. The flannel sheets wick away the moisture but still I need to change,

crank up the forced heat and think to myself that I am sad. Saddened by the

knowledge that the past six months have brought me to this point again of

symptoms and pain. After so many years of relative remission I'm back again like

an old friend visiting this place I thought I'd never be.

Pain in the mornings, swollen joints until the routine of my coffee and moving

gets me unbent and a good warm shower to be able to start my day without the

ravenous effects of this disease. It takes about an hour now but slowly I can

move and start to feel myself again.

I always turn to my computer for the sign in to email and the messages I hope

will be there to take my mind off myself. I know there are many others that

need, want and look for support from a person just like themselves that has

Still's and knows what they are going through. These people I call family. They

are family in the truest sense of the word. Some even more so than my own

because they live it, know it and can identify with me every single day. I too,

feel like I can help and in my way, give purpose to my life, this disease and

all it brings emotionally.

This disease brings grief. A grieving that is like no other because each day is

different and each day a little more of the spirit is lost with the pain. It has

gifts as well but those gifts aren't apparent until the days of remission come

and the pain has subsided.

The years have passed so quickly and the body deteriorates a bit more with each

one for a healthy person. But with Stills it can happen in the blink of an eye,

the passing of a day or the endurance of a year. But take it's toll it will for

the body, mind and soul. For ones self, ones family and friends.

If you believe in someone or something greater than yourself it takes you there

as well. Asking the text book questions of why me? Will it last? Will I be

crippled? Will I ever be happy or healthy again? Some of the answers are bitter

sweet. Some, a resounding NO and then some a blessed yes. There is often better

days, hours, months, years. But they come with a price. A price of learning

endurance, grace, humility and calm acceptance that to fight this disease one

must fight with all these tools at hand.

Lean on those you have to help. I knew twenty some years without a friend that

could truly know the disease. There may be many that love you and try, but only

those that live with this illness will truly understand when you say " I'm in

pain. " what that means.

We have the International Still's Disease foundation that was set up to help

people understand. It's even on the new programs that are the latest fads now

days and many flock to the site for answers, with questions and seeking any

person that will know what they need. We can help some but really just a few for

this disease is a vast unknown in so many ways to ourselves as well as others.

It used to hurt me that others couldn't understand my pain. They couldn't

possibly know " IT " . Not their fault and not my place to try and make them

understand. Just my goal to try and help those that live with and around others

with Still's to know that I KNOW, I UNDERSTAND and I can listen forever to be a

sister and a friend.......