Rocker,
I am so impressed by your outlook on things. Truly you have a great attitude and determination to face this head on and still try to live as much as you're able. To be so determined to enjoy things is such a strength to have. I think your perspective on things is very uplifting. I'm so glad you're writing as well...I enjoy reading your posts, I can tell you have a gift with words and expressing yourself.

I agree with Tayla...sometimes hope can be lost because usually people who post here are suffering. I have seen posts and read elsewhere of people recovering or at least experiencing long remission periods. I'm so glad you brought that up Tayla! It's important to strive for these goals while accepting day by day the changes we've had to make and dealing in a way where we can still live.

We should also realize that there are people out there who can not, under any circumstance, continue on with life because of off the chart pain. I think of these people constantly; they truly break my heart. For those of us who still have some fight in us...it's very important to spread the word not only for ourselves but for those who are not able to. I can't help but to wonder if maybe that's part of why we're here, to understand the pain and to help spread the word...I would like to think there is some reason we are here. (For my own spiritual benefits at least)

I'm not an expert either...this is all new to me as well. I had a feeling I had this before I was diagnosed by a doctor. It took months to find someone who was able to pinpoint a reason for my ailments. I was told several times by numerous Specialists..."There's obviously something wrong, but I don't know what it is". Unfortunately my suspicions were correct...I have this horrible thing!!!!!!! It took a little whle after the diagnoses to come to terms with it and to accept it. It was like being given a Life Sentence for something I knew I was innocent of doing!

Now I think in previous struggles in life that I have had strength through, there have been many. I think of the determination it took to make myself an independent woman.

I broke free from an abusive marriage, and started a new life with my two toddlers. (Not easy to do at all!) I got my drivers license and found a respectible but low paying job. (No previous experience) I had to pay for Day Care (for two), I was the only one responsible to care for them while they were sick while trying to hold down a job. All this while finding my own identity which had been lost through years of physical and mental abuse. Through that experience I found I'm a fighter!!!!!! I fought for my children so I could give them a better childhood. I fought like hell to give us a future together that we could share in peace.

I'm fighting, once again, after re-gaining so much... only this time it's against something I can't just walk away from. I have to walk with it and build up courage to fight against it daily. (Sometimes courage is difficult to find on certain days)

I see you have this drive too Rocker!!!

Luckily, like you, I have support this time. I'm married again, but this time to a wonderful man who has given me my third child. I've not only found support through him, but through my treasured family, friends, co-workers and people I have encountered here. People in my life give me what they are able to give me through these difficult times. Again, they will never truly understand, however, the fact that they try is comforting and I'm truly lucky in that regards. I can blaime myself for people not understanding more or being conscieous of my disease at all times. Also like you...my pride prevents me from displaying my frailties. People forget what's going on with me...I think though...I'd prefer it that way when possible. It's like holding on to my identity in a way...I've changed so much and I can accept this, but I'm trying desperately to not let it go completely. Maybe it's that stubburness Sadra has mentioned!!!!!!

Heather, it's so impressive you have carried on through this and even had a baby. That's such a brave and optimistic approach to this. Cheers!

My mentor has been Sandel (Sandra) through all of this, she's been very uplifting and educational. Really read what she posts because the information she has shared with me has helped and had given me some great days.

While we still have fight inside of us...we can hopefully reach more painless days. For those who can't...I'll fight for you as best as I can.

You know, I aways come on here thinking I'm going to post something short and quick, but inspite of my freezing cold swollen fingers they still have a lot of energy in them. (SORRY)

Love to all...

GHL