Re: Remission

[Guest guest]

Barb--

YES THERE IS HOPE!! AND YES, SOME OF US HAVE HAD REMISSIONS-- I WAS FORTUNATE ENOUGH FOR 5 YRS TO BE PRETTY WELL SYMPTOM FREE.

I ended up in a job where the stress was through the roof, and at the same time, my husband ended up having open heart surgery at the age of 45. So it was extreme stress that knocked me out.

What I'm finding it that I have to do the little things that make a difference-- watch what I eat, get some exercise (minimal) but even to do something is better than nothing at all. There is a show on PBS called "Sit and Be Fit" that is for people who have mobility issues. You literally sit in your chair and march in place-- or do arm raises, or arm circles or whatever. It is an excellant place to start.

Ifyou get winded doing anything like this-- tell the docs-- so they can order an exercise tolerance test, and get you on supplemental oxygen so that you don't create any additional problems.

If you find that you end up with your arms or feet or legs going numb when you do any exercise-- it's a signal that you are "desaturating"-- that is not getting oxygen to your extremities, and that you need to slow down-- breath deeply and EXHALE fully-- so that you aren't holding carbon dioxide in your lungs -- and can get as much oxygen going through the lungs as possible.

If you search the MESSAGE ARCHIVES for breathing exercises or relaxation, meditations, etc-- you'll find that I've posted alot of stuff on this-- and some actual meditation exercises you can do.

It's amazing how much difference this can make!

If you have some "Guided Meditation" CD's or tapes- use them. They will help greatly with pain control!

I'll try to scan a copy of some meditations that I was given so that you can print them out, have someone read them onto a cassette recording for you, and just kick back and listen!

What you will find is that as you make these small changes, in return for the effort, your Quality of Life will improve-- even with sarcoidosis!

Love to all,

Tracie

NS co-owner/moderator

To: Neurosarcoidosis Sent: Monday, December 29, 2008 8:44:11 AMSubject: jackie

I AM WITH YOU ON THE WHOLE CAFFIENE THING.!!! I THINK I WAS BOTTLED RAISED ON COFFEE!! WE ARE JUST GOING TO HAVE TO DO THIS SLOWLY, I QUIT COFFEE ONCE I CAN DO IT AGAIN!! I WENT ON VACATION IN AUG AND ALL HELL BROKE LOOSE THAT IS WHEN I DID NOT CARE ABOUT HOW OR WHAT I ATE. ALOT OF GOOD IT DID LOL!! TRACIE I JUST GOT SCHEDULED ON JAN 15TH TO SEE DR.STONE THE SARC NEURO SPECIALIST AND THE PULMONARY DR.THE SAME DAY!! BEING THAT I LIVE 3 HOURS AWAY MY HUSBAND DAVE AND I MIGHT JUST STAY OVER. I AM UNABLE TO DRIVE RIGHT NOW SO I CAN'T EVEN HELP HIM OUT. THANK YOU FOR THE ADVICE ON WHAT TO EAT AND TAKE . I WILL DO MY BEST! HAVE YOU HEARD OF ANYONE GOING INTO REMISSION FROM THIS? THERE IS HOPE RIGHT?