Re: Another Health/Disease Related Question

[Guest guest]

I am sorry I have so many questions everyone. I am just trying to get a handle on this. My cheeks are always getting hot and flushed and red. Is that normal for the disease? I know that is a symptom of Lupus. But can this also occur for Sarc patients as well?

To: Neurosarcoidosis Sent: Thu, December 2, 2010 12:43:59 AMSubject: Re: Disability

La, You are in a very difficult time of the disease process, and all your feelings are very common. I also believe that just about everyone gets denied the first time. I am one very blessed women, My Husband takes good care of me, I don't have to work, but since I've worked all my life, it's hard for me to do nothing, since I left Nursing (Labor and delivery) I've tired teaching at the community college, and that got to be too much for me. I've been selling Kay Cosmetics since I left too, and I love that, and wanted to go up the ranks and become a Director, and after 7 years, I realized I just don't have the energy it takes to do that either, I do some home health for a small company, I do there certifications for there home care providers, and some teaching, it's less then a 1/4 time job. My husband just started a new business and I try to help him out too. I guess what I'm saying is, it's just

plain hard to know what to do, try and work again? or try for Disability again? I still keep thinking I should be working more, try the hospital again, then look for what jobs they have, as there's always nursing positions posted, then see 12 hour shift, there's NO Way I could do that, so I let it go for awhile.What ever you decide will be the right thing for you, I will keep you in my prayers, and hope God will guide you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here.

[Guest guest]

I get the redness and flushing very often, even when not on meds. I get it esp.

when I am hot or overly fatigued or by too much neuro stimulation (ie. people).

It can last for hours. Luckily the family now can see an outward sign of " Mom

needs to go lie down and rest now she is over doing it, or we need to leave,

Stacie is not well " . In a weird way I am thankful there is some outward sign of

this monster that rages inside.

I was a red head too, before all my hair fell out and came back white and had

this Irish red face symptom all my life, but it is a lot worse now since the

sarc.