Silence

[Guest guest]

Wow-- my last post must have been a TKO-- (technical knock out- used when the referee wants to call the fight over due to injury.

Well, there has been some injury, and we need to do some repair work. As this group grows- it is important to remember that we all will go through various stages of learning to deal with the new script called sarcoidosis.

I've been reading through the emails, and I know that some of you are looking at the financial losses and having to make difficult decisions-- do you refinance your home- (assuming you have a home and aren't renting), or do you file bankruptcy. Do you cash in your retirement or do you borrow more from family?

These are hard issues, very hard-- and the anger that comes up, not only for each of you, but for those of us that have been there-- done that; we can tell you that you will get through it all.

There are those of you that don't know yet what it is that has wiped your body out, so that you live in a foreign object. You are tired, exhausted, you hurt, and you still have a family and kids to get off to school, spouses to get off to work, and very probably are trying to figure out if you can continue to work or if you will need to go on disability.

It is hard not to lose it-- to scream and rage in anger- the system sucks. So does sarcoidosis. Sometimes you find yourself fighting the medication you are on, and the prednisone psychosis that can come on like flies on poop. It's ugly, scary, invasive. It has taken over what is you-- your career, your relationships, your self-esteem, your personality.

Several of us have brain involvement that influences our choices, and what we once wouldn't tolerate, we now find ourself being pulled into. We don't realize until later that our choices have hurt others, and that we need to reassess what we are doing. Our spouses may have been telling us that we are making bad choices, but that is good for a fight at home--and there is sometimes way too much of that. We've lost the ability to multi-task, problem solve, and show loving compassion to those that need it most.

What this group has gone through this last week has been a huge grieving process. We are all in an Anger mode, and we want the world to know we are very mad. We want to be heard. We want to get our life back, and we want competent medical care to find answers.

We want to be recognized for the efforts that we've put forth-- and that is what this group is about. We've built a LINK LIBRARY so that you can look up different issues with this disease, and print out the articles and take them to your MD's. We have given you access to the ARCHIVES so that you can search information on DRUG ASSISTANCE PROGRAMS AND SSDI and MEDICATION CHOICES.

This hasn't happened by itself- we have had wonderful VOLUNTEERS-- that have spent thousands of hours putting this together for all of us. Your OWNER-- Darlene Arney, took this group over from it's original owner 3 yrs ago. This last year, she was in the hospital for 6 or 7 months, and her MD's brought her back from death multiple times. With the exception of this time frame, Darlene has been very instrumental in "cleaning up the ARCHIVES" deleting the 'high fives' that constitute a lot of what gets posted. She's saved the emails that have pertinent information and links. That way you don't have to look through 100,000 emails.

Debbie, Rose, and I have been fortunate enough to be asked to work alongside Darlene. We have another moderator--- Kim, that we've not heard from, but we know is very, very ill with NS and epilepsy. These women take time each and every day to answer your questions, joke with you, laugh and cry with you. We are all dealing with sarcoidosis-- and all that it entails-- and we do so from a place in our hearts that makes us want to make this world a better place--even for sarcoidians.

So what happened that injured the Spirit of this group. Honestly, we got carried away, and we made some bad choices. We allowed ranting to go unchecked, and it became a barroom brawl. Were we "just being ourself" or were we starting a forest fire? Like I said- we made some bad choices in allowing this to go on. We've learned a hard lesson, and we will do better. We'll also make some mistakes along the way.

We can still be ourself without damaging the Spirit of the group-- we have chatrooms available, and if you need to vent- invite someone to join you. They are open 24/7.

Now that the group is "growing up" it is more important than ever to be cognizent of others feelings. Darlene has left the group, and given up her ownership- and I can't begin to tell all of you just how much a loss this is. Most of you don't know her like we do-- she's only recently been able to be back online-- but she knows this disease, and she knows more than most of us how much you can lose. (She had to learn to do EVERYTHING over-- walk, talk, feed herself, etc.) I am hoping that she may yet change her mind.

For now, Rose, , Debbie and I will continue to be here for all of you.

Sincerely,

Tracie Feldhaus

NS Co-owner/moderator

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[Guest guest]

I'm waiting for the dust to settle. When confronted with stressful situations I tend to "run" or "deny". If we need to vent we can always "IM" a person (with their permission) and see if they would like to either talk in instant messenger or go to a chatroom. I'm here odd hours, for this time zone, and if anyone wants to rant I am a good listener. Except when I'm on too much steroids then I'll set my messenger to invisible. Join our Sock Challenge for Orphans in Kazakhstan - 265 pairs needed by 9/15/07 http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@...

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