My hands are getting more twisted all of the time as well as knots on my elbows. My wrists are stiff and painful. I can hardly use my hands. My knees are swollen and painful and my feet! Oh, what do I say about my feet. The arthritis is in all of the tiny bones/joints in the tops of my feet.

My back is the worst pain. It is twisted at the top and at the bottom and is loose where the discs pull apart and go where they want to when I bend over or side ways which is why I wear the brace. It feels like the top is going to just meet the bottom any day (like it is going to implode). I have a lot of muscle pain which can be the Lupus Myositis or the Fibro and the AS is something that I have no idea whether all of my pain is from one thing or the other. I told the dr. I really didn't care what he calls it as long as he helps me.

It has been a couple of years now that we have stopped treatment and are just going for quality of life. Pain treatment is it. He says he will put me on big Pred doses when I want to do something like travel or something out of the ordinary. He tells me he wants me to enjoy life all I can because there is nothing more he can do for me.

The Lupus has affected my intestines, my lungs, my heart, my eyes!big time, CNS, joints and muscles.

I am very thankful to be leading as good a life as I am at my age after fighting this stuff all of my life. I am very thankful that I have had good medical care and the means to have it. We are blessed with good insurance (this year anyway). With the crazy stuff going on in our country, who knows what is going to happen. I am at the age where I will be one of those who will be "counseled" on end of life options. I will "counsel" someone! )

I think of you all every day and I pray for you because you are so much younger than I am. I went through all you are going through when I was your age. I just want to encourage you to take care of yourselves. Eat right, exercise, get plenty of rest, learn to say "no", do what the dr. says and enjoy every moment of every day. Well, if not every moment, at least find joy in every day. Enjoy your family and friends but learn when enough is enough. Educate your family and your close friends about your disease. It is wonderful to have friends who understand when you shop or lunch or whatever and you have to call it quits, they understand and say "Oh, let's go home. We always have another day."

Love you all.
Possi

[Linked Image]

Possi
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RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."