new person commentary

[Guest guest]

To those of you that have offered me advice (like Cleveland Clinic) or founded this group and work hard to stay on top of things...THANK YOU I do appreciate all of you. I am relatively knew to this diabolical disease and this community has helped me feel human. Other than the meds, I do yoga, eat anti-inflammatory foods, and walk/run in the pool. I wish everyone a heartfelt happy new year and I pray for all of us to feel better. Again, thank you for giving me strength.

Subject: Re: Fw: [NSMods] Re: why i leftTo: Neurosarcoidosis Cc: NSMods-owner , " Abouhamama" Date: Saturday, January 2, 2010, 8:26 PM

,

Thank you for your response. I am so glad that you have finally found a doctor to give you the care you so deserve. I know that it's been a challenge for you for the last 8 yrs. It sounds like they are finally addressing the issues, and that with proper care, you will become healthier!

I am also so very glad that Damian wants and needs you in his life. Just the last couple of years of high school where such an uphill battle, and I know that so many times, it's our kids who take the brunt of our chronic illness ad the inability that comes with it. We end up on the sidelines (at home) instead of on the playing field-- and it's hell.

For those who are new, adopted Damian when he was 10 or so- (if I remember correctly) and what a gift he has been to and to him. It isn't long before they are grown, gone - involved with their own lives-- and we can celebrate the adults they have grown into. It also means that they need us less and less-- blessing and a curse...

We are solid as a group-- and we all need and deserve the love and attention of each other-- and somedays, it's just not there to give. I know you all have those days. It doesn't mean we don't care-- it' means we are as worn out as you are.

Normally, when a member leaves-- there isn't alot of comment. brought up an important issue, and that is what I want to address--

What can we do to make this group more supportive? What do you need from us? What can you contribute?

Let us know, and we'll move forward into a better and brighter and more supportive community.

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sat, January 2, 2010 5:57:45 PMSubject: Re: Fw: [NSMods] Re: why i left

 Just a short response about the group... I did say I was trying to spend time doing things other than the group, and I have. I have a son that has just finished a year and a half of college, even though he's still here in Tennessee.. he's 3 hours away.. and still wants me involved in his life and I do want to be there. Within the last two months, I've found a real life caring doctor that has researched my anemia issues and I've been diagnosised with Portal Hypertension, Cirrhosis of the Liver and a huge fatty liver. I can't walk from here to the door without getting short of breath..

I'm gonna tell ya, we've all felt like we are not liked.. we are not respected.. we are not loved.. I've answered peoples post as well over the last 7 years that never respond so I feel like that unless I was Tracie no one wanted my answers.. I have left the group before and let me tell ya.. just a little appreciation is better than being in the Sarc world alone.. I've been there and the systems ate me alive and I'm talking about the health care system.. which I was a part of for 25 years before sarc entered my life.. Right now..my family comes first... after all they are the ones that have to pick me up with I fall on my face, or can take phyically care of myself. They are the ones that tell me.. they love me and will be there for me 24 hours aday. This is a support group, yes.. but even the support group can't be with you 24 hours aday..and it never was intention of being that for anyone.

I've been here reading post. Darlene is fast on the gun. she's worked hard trying to get things done in a timely manner. She has family that also wants and needs her attention. Tracie, is very ill and has to come here and explain what she's been doing.. she's got family that wants and needs her around and her attention. We give what we can.. It may not be enough.. But its all we can offer..

NS Moderator

why i left

This has been going on for a long time ,, and we addressed this several times. i have been with this group a good many years and I don't know what happend.

but , i feel like i am not liked very much. I know the moderaters are sick and have problems and respond when they can. but others respond to only certin people's posts and mine are not one of them. I've posted many time in the last year and only had responces back once or twice.

I fell alone in this as far as this group. like i am invisable. I never was nothing but helpful and caring and i get nothing back but silence. soooo whats the use to keep trying.

I wish you all the best and hope you all find peace in this horror we are living.

thank you

Many blessings and a pain free day Please support Neurosarcoidosis society