Re: Best friend w sarc

[Guest guest]

Hi Dawn,

It is so awesome that you are willing to be there to support your friend through this. Learn all you can about this disease, and if you can get her to join and learn also-- that would be great.

Sarc is a tough one, and for those of us that are private people, and don't want others to know how we're really feeling- it's a double edge sword.

The exhaustion and fatigue, along with the chronic pain are hard issues, at best. I really preach making sure you get enough fluids down, as with sarc we run a constant low grade fever-- and that makes us sit at the edge of being dehydrated all the time. Caffeine and soda's make it worse, as does alcohol. So, it's decaf teas, fruit juces that aren't sweetened with corn syrup, and water.

MSM powder can help her with the body, bone and joint pain. It's a natural mineral that is no longer in our soils and what little bit is-- is gone once foods are processed.

Rest is crucial, and learning to pace yourself is so important. The energy she uses up today will deplete tomorrow's -- and that's a hard lesson for us to learn.

If she's on prednisone, the weight gain has a tendency to screw with our minds. As we lose the ability to work, those are all things that really take a toll, and change your idea of who and what you are-- so you have to learn to refine your identity.

Being there, coming over with a salad or a simple dinner are excellant ways to help out. If she says she's too tired to have company, just drop it off, and let her be. She is too tired. MOst of all, when she pushes people away, and she will-- call and let her know that you're not going to pushed away forever, and that you will come when asked. It can get real lonely as most people don't understand that if you can't do whatever tonight, or you've scheduled something and she has to cancel-- that it's not personal. Call her to reschedule a day or two later--

Know we are here for both of you, and please feel free to look in the ARCHIVES and LINKS and pull up articles on sarc-- and print them out and share them with her.

Take care,

Tracie

NS Co-owner/moderator

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: HouseTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, March 9, 2009, 8:19 PM

Hi All!Just wanted to mention that tonight's episode of House actually mentioned neurosarcoidosis as a possible diagnosis. It turned out not to be that after high pred dosing, but I was surprised to hear it mentioned in such a popular show. Public awareness is so important if we want to someday find a cure...Take Care,Dawn

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[Guest guest]

Thanks for the advice, My dear friend could teach classes on this awful monster, she was a nurse before all this happened. She is in a wheelchair and on oxygen. The prednisone has made her have a different looking body but I think she is the same gal inside,I didn't know her before but I am so blessed to have her now.She lives in content pain that I know others don't understand, but sometimes I think she just wants to be herself again and not the woman she is now.Rats! I think she is one of the most beautiful and funny I'll ever meet. Any advice would be great, Thanks gals, keep up the fight!! Dawn

From: dawnschwartz@ verizon.net <dawnschwartz@ verizon.net>Subject: HouseTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, March 9, 2009, 8:19 PM

Hi All!Just wanted to mention that tonight's episode of House actually mentioned neurosarcoidosis as a possible diagnosis. It turned out not to be that after high pred dosing, but I was surprised to hear it mentioned in such a popular show. Public awareness is so important if we want to someday find a cure...Take Care,Dawn

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