I find if I simply say I have a "form of muscular dystrophy" or I'm a "Jerry's kid" it produces a little more sympathy from acquaintances. They think I'm a "future goner" so I get the pity as well as few expectations. LOL People I have deeper relationships with get the whole story.

When I am looking at doing something physical like hiking or going to the beach and I'm feeling good, I rarely think, "Should I do it?" I just go and deal with the fallout later. It's important to me to do things as normally as I can. If I am feeling crappy prior to an activity, I'll likely still go, just modify how I do it.

There has been nothing "normal" about my life. I spontaneously went into a full remission early on with the disease. It lasted 2.5 glorious years. Let me tell you, the relapse was FAR worse than the initial onset as I knew what I was losing. That lasted for 10 years until I did the reboot. Now I say I'm STABLE, but don't use the word "remission" though many of you would probably consider it a remission. Still, there's nothing normal about needing to stick a needle in your chest every 3 weeks for IVIG, or to take all those pills, going to get labs, seeing a neurologist and crashing occasionally.

With all of that...it's still my life. I make from it what I can.