Re: Update on Cody & Actemra

[Guest guest]

 Trica L.

 so Cody is still rebeling I see by not taking his meds just because he can get

away with it not a good thing at lest it was not for me in the long run as I did

that and I was no teen ager when I did it is just a part of the steps we go

threw anger denial and so on. as for remison well for me it was no meds at all

and all normal blood work fact is my life almost returned to normal all but the

fatige that is and the getting so tiered at times I would just drop. It lasted

for me about 3 years and then I started to flair again only not as bad as the

first go around and now days back on meds again but old school ones and few of

them most ly MTX to control most of my stills things so I consider my self lucky

in that

 best of luck to ya all and with Cody sad bpart is ya are just going to have to

let him find were he is going to be with this on his own as it sounds like he

still is fighting the very fact that this is some thing he will have to deal

with his whole life not fun to do but doa able at the same time just have to

find that place were things work for him and for each of us that is deferent

then the next person

hugs

the redneck

Marty G.

 

“We are all born ignorant, but one must work hard to remain stupid. "

~ lin

 

To learn about Stills Disease http://www.stillsdisease.org/stills_info

[Guest guest]

Hi Tricia,

It's good to see your post. It sounds like Cody is really doing his best in

learning to adjust and live with this illness and the issues of life itself

which are already challenging enough for a young man his age. It can be so very

overwhelming with just one issue to deal with much less multiples and your

understanding is what is helping him the most. I am dealing with similar issues

right now with my husband and his recent disabilities of the past two years and

it is just how hitting him psychologically the hardest while he is recovering

from major back surgery. He is normally a very introverted person and doesn't

know how to express himself but that led him to a breakdown this month even with

medication so I am encouraging him to share his feelings and thoughts while

waiting for therapy. Any illness brings life changes though and it often takes a

lot of time to adjust. It is good he has goals but he should as well get rest

and not be too hard on himself.

Thank you for sharing with us. I know it's so hard on you to go through it with

him emotionally! We are here for you to let us know how you are dealing with it

too.

Wishing you some joyous days,

Update on Cody & Actemra

Hello everyone,

Sorry it's been so long since my last posting. Cody has had 3 Actemra

infusions since April. He's done remarkably well with the last dosage.

[Guest guest]

Tricia

 I just have to add I agree with . it is hard I know at 40 when I came

down with stills it was hard but to think back to being a young man just

starting out in life and finding were and who I was o man that would have most

likely knocked the socks off me! As it is I fight with a self worth problem

every now and then because I can not work because of stills. Yes it is hard just

finding were your place in life is with out some thing like stills but then to

add it at that time of life makes it just that much more frustrating. To let ya

know I was one of the kids that did lash out at times and yes it was more at my

parents who I loved because they also are seen as your safe zone. its never a

good idea and nothing give you that right but I say that only to may be help you

understand its not you its just life coming of age and then also now having to

learn the limitations placed on you with stills some thing that comeing of age

you want nothing to do

with, Limitations that is. at that age we are supposed to feel we have the

tiger by the tail not it has us by the short hairs so some of us seam to fight

it more then others . I most likely had stills back then just unknown to me and

my parents as I was always sick on and off threw life with stills like things

from age 4 to now. to this day because of that and how I feel at times as in

what stills stole from me I feel I have to prove my self as just as good as the

next man silly i know but still some thing I feel now and then and I am sure

Cody dose also but most likely more so. ya being 50 plus dose not make the

feeling go away it only changes how we react to them

all my best to you both

 

the redneck

Marty G.

 

“We are all born ignorant, but one must work hard to remain stupid. "

~ lin

 

To learn about Stills Disease http://www.stillsdisease.org/stills_info

________________________________

From: melt

Subject: Re: Update on Cody & Actemra

Hi Tricia,

It's good to see your post. It sounds like Cody is really doing his best in

learning to adjust and live with this illness and the issues of life itself

which are already challenging enough for a young man his age. It can be so very

overwhelming with just one issue to deal with much less multiples ......