Re: JESSICA AND SARC GROUP

[Guest guest]

Barb,

Man can i relate to enstein playing basketball. Hell, with our prednisone moon faces, all we need to complete the picture is the perms we had in the 70's to be the basketball itself!

I even have the picture of when...

(No, I'm not posting it!)

As for the breathing-- get ahold of your pulmonologist- this isn't an issue of "being out of shape"- it's more than that. When the sarc hits our lungs, the scarring that it leaves creates pulmonary fibrosis, and we don't have enough healthy lung tissue to get enough oxygen out to our bodies. So we end up needing oxygen. This needs to be addressed this week, so call and get an appt. Waiting until the 15th isn't a good thing-- (Sorry Martha, not all of us can fake it..)

I know one of the other part of the gang will stear you to a link about pulm sarc-- and deep breathing exercises that can help, I apologize but I'm to wiped out today to help.

Hugs,

Tracie

To: Neurosarcoidosis Sent: Monday, January 5, 2009 9:37:44 AMSubject: JESSICA AND SARC GROUP

SORRY TO HEAR YOU ARE NOT FEELING WELL!!! HOPE YOU WILL GET SOME RELIEF SOON!! I WILL BE PRAYING FOR YOU AND ALL THE GROUP!! I AM PAYING FOR YESTERDAY MY KIDS HAD OPEN BASKETBALL PRACTICE SO I WAS SITTING THERE WATCHING MY FAMILY HAVING FUN. INSTEAD OF ME SITTING THERE SORRY FOR MYSELF AND GETTING ANGRY ABOUT THIS STUPID DISEASE I DECIDED TO HAVE FUN INSTEAD!! DO YOU ALL KNOW WHAT FRANKENSTEIN LOOKS LIKE PLAYING BASKETBALL!! WELL THAT WAS ME AND BETWEEN THE LAUGHING AND PLAYING I WAS DESPERATELY SEEKING OXYGEN!!LOL! ! PAYING FOR IT TODAY . WITH EVERYONE BACK IN SCHOOL IT WAS TO QUIET AND MY PARENTS MUST OF SENCED IT BECAUSE THEY ASKED ME TO GO TO BREAKFAST SO OF COURSE I WENT (PARTLY BECAUSE THE HUNGER FROM STERIODS IS IN FULL SWING!) WELL ANY WAY AFTER THAT THEY HAD TO GO TO THE GROCERY STORE. I FELT LIKE I WALKED AROUND THE WORLD AND WAS SO OUT OF BREATH.MY MUSCLES JUST DO NOT WANT TO COOPERATE!! ANY SUGGESTIONS WITH THIS MUSCLE RELAXERS DO NOT SEEM TO WORK!! I SEEM TO BE RUNNNG OUT OF BREATH MORE OFTEN AND USING MY INHALER MORE AS WELL. I AM HOPING TO GET SOME ANSWERS WHEN I GO TO CLEVELAND CLINIC ON THE 15TH OF THIS MONTH. TRACIE TRY TO LET YOUR UNCLE KNOW YOU LOVE HIM THIS MAY BE WHAT HE NEEDS TO HEAR!! I GIVE YOU A LOT OF CREDIT FOR MAKING THAT TRIP WHEN YOU FEEL LIKE CRAP!! IT IS SO HARD!! HAPPY BIRTHDAY AMY AND MANY MORE!!! BLESSING FOR A PAIN FREE DAY AND NEW YEAR BARB