HI ALL

[Guest guest]

Just wanted to jump in and say hi to all. I've noticed that lately

alot of us have been having bad flares and higher levels of pain. I

too have been having a bad week. I know the weather changing is

doing havox on a lot of us. I really hate this damp cold weather! My

pain level is high today. It may have a " little " to do with family

and friends opinions I have been hearing this week! Just when I

think I can handle this higher pain level, they have to go and say

something stupid that sets me into a spin. My 14 yr. old

granddaugther always calls me a hyprocontriac. I don't even act like

I am in pain when she is here; I put on my " mask " most of the time

for everyone that matters to me in my life. Babysitting when I am in

pain, doing everything I can for everyone. It is hard to " act " like

super nanny when I can barely walk and at times, barely able to

think! Well, anyhow, today my granddaughter said something to me

that I know had to come from her mother's mouth! ( sorry, that

sounds bitchy, but sometimes we have to vent! lol) She said " Nanny's

meds are placebos. " Well, her mom works at a hospital as a surgical

tech and works for a neroligist that I have been to three times over

12 years. He does not believe in RSD (hard to believe, lol) and now

I know that he doesn't believe in " burning pain " and my back and

neck hurting as much as it does. I asked her mom if she thought I

wasn't in pain and she said " I know your foot problems are real. "

DAAAAA Well, my so call meds consist of 1 750 viciden around 10 PM,

2 clonizapam at bedtime and colesteral med and anti-biotics for

bronchial problems this week. I am on Medicare and no script

coverage, so I have to do without. I wait on the viciden till night

so no one can call me an " addict. " So, I guess I did without for no

reason because they all think it is in my " head! " I want to just say

to hell with trying to " act normal " and go the whole pain drug

regime! Living with this pain is so hard but having love ones think

you are making it up just kills me. I am so angry! All they want is

for me to be super Nanny and do all that they want me to do for

them! (Venting way too much here!) Right now I am just so mad!

Jan: I am so sorry about your lose. I just lost my best friend, like

a sister to me, 2 months ago. It is so hard. My prayers to you.

Everyone that has been talking about Dr. Swhartzman, I have some

news. I called to set up an appointment with him and they said he is

booked until 2006 and they took down all my info and said they will

call in January to set up a 2006 apointment for me!! OMG! Can you

imagine?? I have a doctor's name in NJ and was wondering if this is

the one someone has been talking about that had RSD in his thumb? I

live in PA, so I think I wouldn't be able to use him because of him

being out of state for me. I wish I could just find a doctor that

knows and treats RSD around me. Still looking. Anyone in the group

know of any that are around Langhorne, Phillidelphia, PA? This heal

and foot burning when I am in bed is driving me insane! I use

my " placebo " (lol) lididerm patches and that helps a little. The

clonizapam doesn't seem to be helping me much at all. It is suppose

to help me sleep but it takes me about 2 hours to fall asleep after

taking them. They use to put me right to sleep but not working

lately. I will end this novel and thank you all for letting me vent!

I needed it! I wish you all pain free days and God Bless. Praying

for the CURE... Nannyshere aka Janet M.