RE:Gotta get this out

[Guest guest]

Hi everybody...gotta get this out...and possibly get some feedback....

I have been in major flare ....was given medrol dose pac and felt sooo

good for about a week...then I guess it is out of my system and

crashing down I come...I saw PCP yesterday and we talked about the use

of long term steroid treatment..and how that is not a possibility for

me because of the severe destruction of my spine already they just

dont want to chance more...surgery is not possible because three

different ortho surg refused to do surgery because of the scleroderma

I get the big pep talk about how I have been so positive about all

this mess and just one of my problems would knock most people down and

I have been such a good girl dealing with

scleroderma-lupus,fibro,severe DDD of lumbar and cervical spine, ...on

and on...that I know there is no cure and there really is not a

treatment for scleroderma...just band aids for the symptoms...I dont

want to be a good girl right now...I am sick and tired of being sick

and tired...by this time I am bawling like a baby...and he says come

on this just isnt you....we still have the enbel//I have been waiting

7 months and Immunex says it looks like not until late fall...they

told me the enbrel was just a shot in the dark , but I was so excited

thinking maybe I will get my life back..I think to myself get over it

....you are not dying of cancer or some other terrible disease, but

it is so hard to be positive at times...I think I have gone through

all of Helen Kubler Ross's steps to find myself back at number one...

sorry to bother you all with this....but it really helps to know that

other people are going through much the same...not that I am glad that

other people suffer, but that others can understand...well I guess I

am through my personal pity party...thanks to all of you for being

there....Kathi in OK