Take back your life

[Guest guest]

So many times I find that my focus is on what I can no longer do. True, we've lost our jobs and careers. We've had our health come crashing down on us. We have a debilitating disease with no known cause, and no cure.

So, in trying to reframe what my life is now, I find that I've had to change what I consider normal and acceptable for me. This is not an easy task, but I do believe that it is worth it.

I share this list of things I do have control over with all of you.

I can decide what I will eat--and choose to fill my body with healthy foods.

I can decide to see the grimness of my situation, or I choose to see the beauty and joy that is around me.

I can still read a good book.

I can sit here and share my journey with all of you.

I can take the medications that are offered to me, and see them as healing tools.

I can take a walk, maybe just to the mailbox, but I can still walk.

I can lift soup cans as weights, allowing the muscles in my arms and shoulders to work- and regain strength.

I can hug my husband, and my son.

I can laugh-- even at a bad joke. Laughter is healing.

I can sing-- ok, you all don't want to hear me sing-- but I can.

I can shower, and put on clean clothes.

I can have lunch with a friend and share my fears and my joys.

I can choose hope.

I hope that each of us sees a brighter tomorrow, and that we share in the small goodnesses that come along. I wish that each of us can find the magic combination of diet, exercise to our individual ability, and medication to allow us comfort for the day.

I want this for all of us, for we all deserve goodness.

Love to all,

Tracie

NS Co-owner/moderator

[Guest guest]

Yes

Tracie and I so wish all this and more for you. You are a blessing to all

of us, Thank you for all you do.

I am

with you on the singing, I find if I am having a “blue” day I turn

on the music and sing my heart out, although when no one can hear me, J if I am up to it, I

even dance, then I feel so much better!

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Tuesday, February 06, 2007

11:18 PM

To:

neurosarcoidosis

Subject: Take

back your life

So many times I find that my

focus is on what I can no longer do. True, we've lost our jobs and

careers. We've had our health come crashing down on us. We have a

debilitating disease with no known cause, and no cure.

So, in trying to reframe what my life is now, I find that I've had to change

what I consider normal and acceptable for me. This is not an easy task,

but I do believe that it is worth it.

I share this list of things I do have control over with all of you.

I can decide what I will eat--and choose to fill my body with healthy foods.

I can decide to see the grimness of my situation, or I choose to see the beauty

and joy that is around me.

I can still read a good book.

I can sit here and share my journey with all of you.

I can take the medications that are offered to me, and see them as healing

tools.

I can take a walk, maybe just to the mailbox, but I can still walk.

I can lift soup cans as weights, allowing the muscles in my arms and shoulders

to work- and regain strength.

I can hug my husband, and my son.

I can laugh-- even at a bad joke. Laughter is healing.

I can sing-- ok, you all don't want to hear me sing-- but I can.

I can shower, and put on clean clothes.

I can have lunch with a friend and share my fears and my joys.

I can choose hope.

I hope that each of us sees a brighter tomorrow, and that we share in the small

goodnesses that come along. I wish that each of us can find the magic

combination of diet, exercise to our individual ability, and medication to

allow us comfort for the day.

I want this for all of us, for we all deserve goodness.

Love to all,

Tracie

NS Co-owner/moderator

[Guest guest]

,

My heart goes out to you. I know how hard it is when our livelyhood is taken from us.

I do want to ask-- did you lose your job because of this illness and the fact that you are sick and have missed work?

I know you can collect unemployment, but are you or have you considered filing for SSDI?

Does your old job have disability benefits? Did they manage to eliminate you before you could qualify for those benefits?

I ask this because I know that some employers will fire a employee rather than run the risk of them being able to get Long-term disability.

There are legal ramifications to employers firing workers because of disability, and I just want to make sure you aren't being targeted because of your illness.

Hugs for you,

Tracie

[Guest guest]

Thank you for helping me put it all in perspective. Couldn't come at a

better time since I found out the other day that I lost my job.

-

[Guest guest]

Hi Tracie,

I've been on long-term disability through my work. Now I am on

permanent disability, but I always hope(d) to get well enough to work

again. When I noticed the other day I was no longer mentioned as a

staff member in the newspaper where I was employed I assumed I had

been dumped. Understandable, considering I am officially on permanent

disability. But I just returned from lunch with my department manager

and she wants to know if I can work from home! Being on Remicade,

Imuran and Prednisone makes working in an office too much of a risk

and she wouldn't consider working from home before. But they have made

changes and now want to try it. She is completely flexible about how

much I take on and undestands that I may suddenly be too sick to do

anything at all. She says that's OK. She'll take whatever I can do.

Now I have to find out from the insurance company if part-time work is

OK. I feel like I have gotten part of my life back. Working from home

would be so perfect.

Hope you are feeling better. Are some infusions worse than others for

side effects or are they mostly the same?