kind of long reply but redneck words get that way. Re: Hi. I'm new. Hope I am doing this right.

[Guest guest]

Rennie

 First welcome and glad you found us but a many here say sad that you were

looking also.

 Your story sound like a lot of ones here mine included with some twist. on

being a guy I do not and did not go threw some of what you did ;-p as for

having a Ra doctor not wanting to say you have stills I also have gone threw

that both in trying to get a DX and even after it a few times when I have had to

change doctors because of moving, Not fun as you know. I also know the scared

feeling of all the testing and having to be seen by an Oncologist and them

saying that C word only to later tell you that it is not the case and boy what a

relief that was.

 

 my onset to Dx was a bit over a year not from many doctors try to DX me but

from it being more of a case of test to see what it is not then what it is.  I

was one many meds at the start to the point I was using 12 of them daily and 2

weekly and one monthly. Plus one that was added later as an IV infusion. Some

worked for me and some did not and yet the mix over all at lest for me turned

out to be a bad thing in side effects.. That part lasted a few years then

things got better not so good I could go back to work but were I could enjoy

life a bit better at lest. Now in the last year plus things have started in

again for me.

 Short way I stopped working on Sept 14th 2000and have not returned at all. I

was 41 at the time. We now believe I may have been dealing with this from the

time I was only 4 years old because of sick I was then and no one could really

put a finger on it. This would go on my whole life periods of good and bad

lasting a few years. The start of my Adult and then being Dx was after I passed

a kidney stone. From there on many things have gone one but at lest for me few

joint problems tell this time as most of my still problems have been internal

organ related as in Heart lungs spleen digestive and others.

 right now I am using some old and proven meds and they are working very well

they are MTX injections as the pills were not doing to well any more for me ,

Topamax,  Baclofen, flexural, Vicdine and Perkiest for break threw pain, and

some Rx vitamins and that’s it for the most part now but each trip to the RA

doctor now days adds more and or changes what I am using so it is also an always

changing list so I am always doing research on them before I will say yes or no

to any medications because of what happened years back that doctors and

Pharmacist did not notice. I see you have a personal rescores available to you

and that’s good because you can bounce things off of them and I bet there

really honest with you in return. Some thing about loving some one makes then

takes a good interest in your care your luck there.

 

I will tell you and this is based on my self only as we are all so deferent but

then that is why our mix ( cocktail) of medications is also. I have had my good

times and my bad times but few if any have I felt like I did before I became ill

with stills. I did end up on SSDI it was not easy but it seams to be changing

some what now days also so that’s good for you and other people now days. I

have tried one time to go back to work and well I never should have as I could

not do it I knew it I short order and left it behind me. I wanted a cure and I

wanted my life back and I was miserable trying to search for it and get it. Now

I accept stills as apart of my life. I do not look for a cure I do not hope to

get back to normal or life as it was I now live life as it is and enjoy what I

have right now with out fighting for what I used to have or wishing and fighting

to get it back were I lose what I have right now today. Stills took a lot from

me but has

also given me a lot in return. I am speaking of good things here. I have

slowed down but now I smell the roses instead of zooming past them saying ya the

look nice now I enjoy there smell feel and color every thing about them because

I am living a slower life so that I take care of me with stills and that lets me

enjoy them

 So welcome and glad you found us. Remember if one door in life closes on you

others will be opened it's a matter of seeing them and being willing to act on

them

Sorry it’s long

Hugs

 

 

the redneck

Marty G.

Experience: that most brutal of teachers. But you learn, my God do you learn.---

C.S.