RE: Sites-- MESSAGE ARCHIVES -research

[Guest guest]

It is tough when our docs have the access and the info is outdated. That is the biggest reason that we keep researching and send all of you the links to articles that support the advancements that are being made.

If your MD's won't accept the articles you bring in-- then find new docs who will. We have to be the voice to change and educate. It's a huge HUGE job, but somehow, we are the chosen ones.

Sites like ours, and others, www.sarcoidosissharma.com, and www.stopsartcoidosis.org are so very important in getting the word out.

Support groups are excellant, and the banter we send out is important to keep ourself in a sociatal community-- but when we find that we're spending all our time bsing over the trivial stuff, instead of sharing what is going on with our bodies, what we're doing to make it better, and what we have learned-- and we decide not to print out an article or think that what we share or has been answered is only important to the person that asked the question-- that is where we fail. BTW-- I like the trivial banter also it's a great distraction from this disease-- but I am feeling like we need some balancing.

For every question asked on this site-- the answers have come primarily from intensive research on the part of your moderators. They are willing to type in --for example, "rapid heart beats and sarcoidosis" or "muscle wasting and sarcoidosis" and read the articles to find ones that most easily explain what is happening to you, and why-- and give you the site article to print out and take with you to the doctor's appt.

You can all search the MESSAGE ARCHIVES by a specific topic and you'll find an article that you can use. This is why I suggest that we all pay attention to the SUBJECT LINE--and if you've changed the subject from ie. House diagnosis (as this one started with) to what you're really writing about.

It takes a few extra seconds-- but we all benefit. and we can find info we need-- and not always have to wait until one of the mods gets online to research and answer the question.

This group was started 8 years ago-- in Dec of 2001. We now have 575+ members, and the library of LINKS and MESSAGE ARCHIVES is tremendous.

If any of you have any insight in how to make it better-- please bring it up and share your ideas. I'm at a loss- and would love to see the next part of this group site become one were we can learn from each other.

Do we need a topic of the week? Are you finding the chatroom helpful? What is working for you, and what needs more attention?

What do you like?

What do you dislike?

I know these are questions that require you be honest-- if you don't like the scripture or religious quotes --then speak up. If you feel that you can only participate if you can quote scripture--speak up.

If you feel that I come on too strong--speak up.

I'm glad that sarcoidosis finally has been mentioned on House-- but if we wait for them to cure it-- we may be dead before it happens. After all, it's going to be 2 years on high dose prednisone before they figure out it isn't working and the patient hasn't gone into remission, and they haven't had the relapse and havent even started on the DMARD'S yet alone the BRM's-- so help me-- help us help you.

What do you need?????

I'm back from my long weekend (it was only a day over, two nights and a day back-- so my 3 days on the coast was great, and has taken 10 days to recover -- but I think I'm back. So gang-- what say ye???

Take care,

Tracie

NS Co-owner/moderator

Well, someone finally got a diagnosis of Sarcoidosis on House last night. i was really surprised! It's mentioned as a possibility about every other episode over the whole course of the show's history but has never been the final outcome. Of course, it was mixed with other health concerns but at least it was finally mentioned. I sure hope some of my family and friends were watching...lol. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Yourways, O LORD, teach me Your paths; guide me in Your truth and teachme, for You are God my Savior, and My hope is in You all day long."Psalm 25:3,4,5 NIV

Windows Liveâ„¢ SkyDriveâ„¢: Get 25 GB of free online storage. Check it out.