Re: Stills board in general...

[Guest guest]

No prob. Alli..although I did repond to frustration...remember the knee?

Frustration because plans were changed? I for one have not shied away....just

that I have been very sick....and maybe folks stepped back for a colllective

pause...maybe not...but if so that can be quite good......and of course this is

a STILLS group first...that is why suggested a site for caregivers

seperate from our own....I appreciate all you said but personally believe we are

ok...and yes I too am frustrated as hell over a lot of things brought on by this

damn disease and its change of lifestyle!

Love ya All!

Larry B.

Sent from my Verizon Wireless Phone

alli wrote:

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>Hi everyone,

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>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.

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>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.

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>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.

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>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 " .

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>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.

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>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

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>Hugs to all,

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>Alli

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