Re: Re: We have a new member! Please welcome Pam

Welcome to the website where you will learn much about accepting the diagnosis and accept a total change in your lifestyle with IBM.

To be totally truthful, there is no cure for IBM at this time; accept that fact and plan on the many twists and turns to learn to live with IBM. I was diagnosed in August 1991. Like you, I was very upset, and like you must have to do is to get rid of stinking thinking..

I was very successful in the corporation world, owned lots of big boys' toys and did organ classical concerts all over Europe two weeks each year. I learned that my stubborness only harmed myself; like I was trying to CONTROL IBM instead of ACCEPTING IBM.

Through the years I've bought several vehicles to meet my IBM needs; made alterations and modifications in homes so I was able to do what I could. I began with a cane, then walkers, then electric scooter and several power chairs through the years. My life was not over, just headed in a different direction and learned to live a productive live in helping other Myositis patients - publishing "Coping with a Myositis Disease" book, began this website which has had 342,000+ posts and visitors in eight countries and seven languages spoken.

Eventually you will learn that you "can be very stubborn, and take the bulls by the horns and giving them a shaking" will be of little benefit in dealing in the long run in learning to accept IBM and still make a new life for yourself. As I said, you cannot control IBM, but learn that you must accept IBM and make the best of your life. To accept IBM is akin to the six stages of grieving. Each step will eventually appear and must be accepted.

You will begin to lose strength in your muscles, loss of muscle mass, falling unexpectedly, inability to lift things. At the present, your post indicates you are running around in circles, heading off in all directions for information. Please read all the posts on the website to see how others are willing to help you if you ask in specific terms.

By printing out IBM information and learning about the disease, it would be well to let your family know as they will wonder why you are falling, difficulty in getting up from chairs and climbing steps, dropping things, unable to button blouses, inability to cut your food.

Be aware that your life with IBM will never return to your former lifestyle.

I wish you luck in learning how to deal with - and accept - IBM.

This post is not to scare you but to alert you somewhat what the future holds. None of us progress at the same rate - some sooner, some later.