Posted 05 November 2006 - 08:10 AM
Posted 05 November 2006 - 05:49 PM
Boy do you ask not only a very BIG question, but a very HARD question! How do we prevent progression? Every time I think the disease has leveled out, I get a new development. At least now, with all the regularly scheduled testing, I've caught the new symptoms early. So that would be my best suggestion is to get your 6 month checkups for all organs, periodic bloodwork for the major organs and CBC and stay in touch with your body. When you feel something new happening, make an appointment and check it out. In the meantime, live each day to its fullest. Accept the fact that you do have a disease or two (as in my case) and that it's just part of your job in dealing with it. Don't let it control you, but rather you control it. Maintain a great attitude about life, eat healthy, keep moving even though it may be slower and harder than before, maintain contacts with friends and family. I have rule that I go out to lunch with at least one friend each week. I love that rule! This week I have two lunch dates. WhooHoo!
Everytime I start feeling sorry for myself I see someone a lot worse off than me and it kicks me back to reality.
Attitude, attitude and did I mention - attitude
Use us to cheer you up on those down days and on those days that you feel good, help one of us cheer up. We're all in this together
Big, big Hugs,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 06 November 2006 - 03:21 AM
Funnily enough, I'm doing the lunch thing too!
I'm one of those types that wants to know everything RIGHT now, wants to know what's down the line NOW~ That's the attitude I'm going to have to give up.
This forum is so much help. Thanks to everyone.
Posted 07 November 2006 - 03:33 PM
This is the exact question I asked my rheumatologist when I was first diagnosed (with undifferentiated connective tissue disease) 5 years ago. He told me to walk at least 3-4 times a week. I do go to an exercise class at least 3 times a week. And I think the other big thing (not that it is the easies to do) is to avoid stress as much as possible as stress is known to exacerbate symptoms and cause flare-ups.
Posted 08 November 2006 - 02:04 AM
Posted 08 November 2006 - 06:10 AM
Posted 09 November 2006 - 08:32 PM
Obviously the theory is these meds dampen the autoimmune response, and studies have proven this.
Of course they have side effects and can't be good for you as they are poison. So it would be great to see research on when to start immunosuppression?
Posted 12 November 2006 - 03:54 AM
Posted 12 November 2006 - 05:55 AM
Hi there! How have you been? I hope you are feeling better soon and can make a decision. It is a tough one. I am on Cellcept. I am interested in your opinion on Cellcept. I struggle with it too...wondering if I should even be on it. I have not improved according to tests, but I do feel better on it??