Update on progress

[Guest guest]

Hi,

I have been following this group now for 2 years or so, I was originally

diagnosed with stills almost 3 years ago when I was 24, I had suffered from JRA

since I was 14. As most of the contributors here I had horrific symptoms, with

excruciating pain in joints and throughout my body, preventing me from sleeping

or having any type of normal life. I had abnormal organ functions and was under

constant watch for 6 months in 2008 with a donor liver on standby. I was

initially treted with prednisilone steroids and was up on 60mg daily with all

the regular drugs for the side effects caused, my symptoms seemed to be coming

under control and I was beginning to be weened off the steroids and was down to

30mg daily when I had a relapse with no mercy, the symptoms and pain was the

same but there was no period where I would have relief, constant pain, constant

fever, constant sweats and feeling like I wanted to be dead.

Fortunately I had an expert team looking after me and they did an awesome job, I

was put onto anakinra, kineret, immuno suppressent treatment, which had

immediate effect and gave me hope. I was on various doses of the drug for over 2

years with extraordinary results and am now off it completely and leading a

normal life.

I guess what I'm saying is that there is hope and a lot of my recovery looking

back on it was psychological. I was very damaged and depressed during my worst

times with stills, especially because I was so active before the symptoms took

hold.

I want to do something to raise awareness for our plight and some money too for

the great job done by this group. Please hit me with some ideas.

Thank you,

[Guest guest]

Steve

 I have no ideas for you but I wanted to thank you for what you said as I to at

the start felt as you did only I did not get the full relief that you did and to

this day still fight it but no were near what it was at the start. but I loved

how you said how you believed a large part of it is also " psychological " and

added . " I was very damaged and depressed during my worst times with stills,

especially because I was so active before the symptoms took hold. "

Recalling how many stories I have read here from so many that seams to be one

link we all shared we were all very active or type A personality's even if we

refuse to admit it. That being said when your slammed to a stop it is hard to

handle it right away and that is why many I be live fight depression so much and

also why many fight to never let there old life go and to get back to it no

matter what. I know I did but now days I embrace my new life even tho I do not

like all of it and move forward from there. For me wishing for my past life job

ect is not a good thing and drives a deeper depression and it is worse then

taking both my hands wishing in one and you know what in the other to see what I

get more of . well doing that I always get more of what I do not want so by

stopping that and taking my life as it is now and working from it to were I am

going forward not back has helped me greatly. O I still have my times let me

tell you but nearly as many as I used to. see yesterday is gone and there is

nothing I can do about it as its never coming back no matter how badly i want it

to day is here and now and it is the gift I have to live with that's why its

called the present. tomorrow is not here but its filled with hopes and dreams

yet to come but if I forget to live to day hopping for tomorrow then I lose a

lot as no one has promised me that when tomorrow comes that I will be here or

that it will be every thing I want so I live for today hope for tomorrow and

forget yesterday as its all but a memory now

 thanks Steve

my best to you

 

 

 

 

 

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

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