Things Scleroderma People Do Differently

Scerloderma is a quiet disease.  Hardly ever talks about this hard-to-understand disease with a funny name.  You may see disfiguring signs that a person has this disease or you may not since it affects both internal and external parts of the body.  Nobody gives Scleroderma much thought until a doctor sits in front of you, holds your hands in his and tells you that the disease that you are now facing and can't pronounce is "progressive, without a cure at this time."  From that point on so many things change.  Here is an example of how life altering this prognosis can be:

• I have to substitute clapping when we're at a basketball game because my fingers are bent so they aren't flat, to slap together; even if they weren't, my palms hurt to touch the other hand. So I'm the crazy one at the Zag games who wears her thick winter mittens and "pretend" to clap with them on; I feel I'm part of the action and nobody has had me committed yet either!
• I drive all year around, wearing thick winter mittens so my fingers are able to more easily grip the steering wheel.
• When I'm reading a book, I wear soft gloves so the page edges don't make my palms achy.
• Scar tissue makes the opening to our mouths slowly narrow and thus it takes us longer and longer, to eat a meal. I realized this the first time I went out to lunch with the girls and discovered I was still halfway through my soup when they were ALL finished with everything and it was suddenly quiet...because they were sweetly waiting for ME?!? I nearly died of embarrassment! So if I NEED (only a need; not a fun thing any more) to go to a lunch, I order a roll or a small potato and work my way through it, while judging how quickly everyone else is done. Then I come home starved (but happy) and have a real lunch at my own pace.
• Dentists have to take special care with us as it's so hard for them to see into and work on teeth at the back of our mouths. Sometimes they suggest sitting for 30 min. pre-appointment in the waiting room, with hot steamy cloths on our jaw joints, to soften them up, so our mouths open a little more.
• If I am at a family dinner, I run out of breath trying to eat AND visit with them. My solution is to think ahead of questions they'd like to answer about their lives, and when I ask, then I can eat some bites, while they are talking. Otherwise, my limited breath makes visiting impossible.
• Scleroderma has shrunk my upper lip so I no longer am able to grasp a straw, to drink something. I never realized you need BOTH lips to do that.