Lark

I have had linear/morphea since age 6 or 7 and am now 44. The scleroderma is on my left leg, on the inside part, from foot to hip (by some miracle it "arrested" itself at the hip). I underwent a lot of experimental medical treatment at the Cleveland
Clinic back in the '60s. A arterio/venous shunt to help circulation and allow my leg to continue to grow resulted in months of hospitalization. I would have these terrible ulcers that would take weeks to heal. I also wore a leg brace for a couple of years to correct "scissors gait" of course caused by atrophy. Things were relatively calm until around age 30 when I suddenly acquired a "sore" on my foot that stayed almost 2
years! The pain was incredible (anaprox was the only drug that helped) and anxiety was HIGH (elavil for 6 months). The doctor never suggested amputation although a few of my friends/family did. I know it was intended well, they couldn't stand to see me suffering.......but I decided that you just don't cut something off just because it's giving you a problem!

I have found, like several others I have read about, that eating right and taking vitamins can only help improve this condition. Also, make sure you ALWAYS get your rest, sleep, etc. every day. I believe that the two times in adulthood that I had these sores is largely due to the fact that I was under a lot of personal stress and was not sleeping well, eating well, etc. This is only MY personal observation. I have
learned that this disease has a lot of "quirks" to it. What worked for me won't necessarily work for someone else. A lot of people assume that I had polio as a child and that this is why I appear the way I do.

It was so nice to see everyone's story and know others are sharing your situation in one way or another. I learned early in life that the friends I have are special because they have always accepted me exactly the way I am. My husband of 16 years has always been very supportive of everything involving the scleroderma. I taught school for a while, then worked in government purchasing for 14 years. I love to read, watch movies, cook and do just about anything that isn't too stressful, as I have learned that stress and fatigue can be your worst enemy when managing something like scleroderma. I'm not a very social person, but can be extremely so when necessary (this can also be tiring, especially when you're already tired!). Every now and then I feel like doing something physically challenging, but know I must rest after such activities (bicycling, walking, shopping, housework, etc.) Of course, we all do housework, so I kind of plan one of my weekend days around that. It is just that much more gratifying to complete a project when you know how chancy it is that you will have the energy to complete it!
I just wish all of you the best and try to be happy and healthy. That is
the best medicine of all!

Anyone who wants to email me, please do. My email address is: plc9848@usl.edu