Re: Re: I have systemic sarcoidosis and a liver transplant

[Guest guest]

I get it. I know that for me, what the sarc has done is really change my personality. Lately, I've either been totally rationale-- right now is pretty good, I just had my Remicade infusion last Wed. So I have a couple of weeks where I think I'm doing good.

then I become totally intolerant of everything and everyone around me-- so when you see it coming in a couple of weeks, you'll know what it is--

We know from the Neuropsych Testing that it is the frontal cortex where the executive functioning goes on-- the ability to multitask, the ability to handle stress, daily frustrations, sort out good energy from bad-- basically it's your problem solving, personality, sexuality, multi tasking area of the brain, along with common sense and self-control. For me, there is no "plaques or granulomas" on the brain-- my scans and MRI's are clear-- so it has to be from the vasculitis-- inflammation of the blood vessels themselves, that put pressure on that area as I get closer to needing another infusion.

I am at maximum dose, 10mg/kg-- every 28 days. I also have to take Plaquenil (daily) and Methotrexate (weekly) to keep the bugger at bay. So it's not perfect, but at least I can find my car in the lot- most days.

My husband tells me that I've really changed, and am intolerant all the time-- I don't know, sometimes I think he's right, other times I think that I've grown enough that I no longer sit there and take the verbal abuse and bs of society-- and I've learned to speak up (with alot of therapy over the last years.)

I know that I can be totally abrupt, but I tell it like it is-- and that sometimes scares off some people.

BTW, I loved your reply re: stepping up and being there for the one who's sick- it made so much sense. We do have to stand up for ourself, not feel guilty because things have changed-- and when someone tells you that the "sarc" is in your head-- tell them they are correct-- it is Neurosarcoidosis-- and yep, that means it effects our brains...

Take care, and I'm glad you found us-- your insight into this disease from a man's point of view is appreciated-- we do have a few (Ron) (Quint) guys in the group.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Monday, November 24, 2008 8:31:52 PMSubject: Re: I have systemic sarcoidosis and a liver transplant

Tracie,Thank you for your words. I just found out that theNeurosarcoidosis is exaggerating my PTSD. I got mad today at bank andyelled at my mother. After calming down I apologized. Thought I hadgotten past these issues - guess not will have to pay attention tofeelings and control them. I swear I actually a sweetheart. I am enjoying learning about the NS monster from this group. Istarted using MSM powder in the last 2 weeks. The pain in my jointsare gone now. If only I can stop losing my balance and falling down Iwill be able to start working out again driving myself around.Greg> >> > Terrie G.,> >> > No it doesn't take long the learn about the real monster.> > Prior to NS the Monster was PTSD. Now NS is my Monster to slay or> tame.> >> > Greg> >>