(((((((((( Jennifer )))))))
*sigh* I'm SO sorry you've lost your new passion. I feel deep down for you. I was participating in backpacking weekends when my first big flare hit. I had been walking 11 miles at a time with a 35 lb pack. I was SO enjoying my walking and experiencing the different wildlife etc. I have very gradually been able (over some years) to build my walking program to a slow paced 2 miles. I did a 4 mile hike a couple weeks ago. I'm really encouraged recently as I've found a way to get more distance in. If I walk two or three very short walks most days, I can fit in a nice two miles on occasion. So I've been walking my dogs.
Your situation is SO different as your issues sound really degenerative. I actually feel very fortunate. I am one of the least affected at this forum.
I do seem to have Undifferentiated Connective Tissue Disease (but not Mixed Connective Tissue Disease - which is a horrible overlap of Lupus, Scleroderma and Polymyositis). Undifferentiated is when there isn't enough criteria for firm diagnosis. I also have some issues with my large intestines that the Cleveland Clinic GI doc says is most likely Crhon's. Right now that issue is quiet, and I've been very gradually rebuilding strength, energy and endurance. I'm cleaning my house again and am very happy to be able to function again.
I hope your issue will be minimized or disappear now that you are off of pred . . . but it doesn't sound like it works that way. What is your prognosis? Expectations for disease advancement or healing?
Most folks at this forum have a great attitude and I am blessed to know such courageous people. It is really helpful to be able to gather courage and hope that comes from knowing them.
Thank you for sharing.
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
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