Stills board in general...

September 5, 2011

Hi everyone,

I have noticed that it has been very, very quiet here, since the whole

caregiver topic came up. And since it came up as a response to my email on

being frustrated. Which frankly I still am frustrated and I never really got

any responses to being frustrated, just the responses about be happy because

you are blessed because you have a loving caretaker response, which took the

whole topic a different direction. I decided I would post again. And be

brave enough to post something I think a lot of people may be afraid to post

after the care-giver discussion.

This isn't about me. It's about the 'stills family', about each and every

one of us. Yes, we all try to stay positive. We all have medical questions

and we all have other support needs. Sometimes we have support needs.

Sometimes those needs come out in a way that may not seem as positive as we

want them too, frankly, that is ok.

What I am saying - to be 100% clear, is I think that it has been quiet

because our family members may be hesitant to post because of the

discussions that have happened recently.

We need to remember that this group is here for the members who have stills

and not for the caregivers. My husband appreciated the discussion on

caregivers, but also said, I sure hope that members don't focus on it too

long because it will not be a support group for the primary focus of those

that are sick with stills! And he's right. He also said, people may start to

feel guilty for posting any of their feelings of the disease because they

started to think too much about the people that help them daily. quote " You

still need a safe place to have an outlet for your feelings other than

coming to me with them " .

So, I found this hard to do, because I felt that some may attack me for it.

But decided to be brave enough to do it after seeing how quiet it has been

in here for days.

I do hope everyone understands what I am saying. That I am blessed to have a

loving caretaker, but that this place is a safe-haven for us to say our

feelings, get support and love regardless if we are frustrated, happy,

depressed, need prayer (OT), have medical questions, whatever the reason;

and not feel like the topic will go for a roller coaster ride, like are

physical body's do. J

Hugs to all,

Alli

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