I Just Want To Say

commonsns1 · Not So Newbie Joined: 10 May 2008 Posts: 7

Thank you....... thank you.... thank you.... to all I have 'met' here and especially to those who have created and moderate this forum.

I joined up another forum, the big one, years back. Dealing with the harridans that ran the thing caused me more stress than anything I had going on at the time. They didn't believe in letting people vent about their disease.. anything deemed 'negative' was remoed and they especially seemed to resent a man's voice. Arguing your point, privately, wasn't allowed and I ended up with a life long ban.

The expeence was so awful I started my own yahoo group, wearelupus, with the position in the rules that lupus patients have a right to anger and hurt and frustration and deserve a place to vent without interference... it never really took off but it was there.

It has taken me this long to again try to reach out to a lupus forum and seek a place to find friends and understanding.

I found that and more in you guys, in this forum.

I just wanted to say thank you for giving us all what we so desperately need.... a place to cry, laugh and scream without fear of recrimination.

I'm happier than I can say to have found you all.

Bruce

Saysusie · Posted: Thu May 15, 2008 1:49 pm Post subject:

Bruce;
You are so welcome. As you know, this forum was provided by my dear friend (and Beloved Administrator) Conrad after my daughter passed away from complications of Lupus.
When my sweet Lauri was alive, she and I would spend hours and hours on the web searching for help, answers, a place to get support, a place to cry and compare.......we found nothing! A few sites, as you mentioned, actually acted as if they were angry at us for asking questions. She and I cried together about the fact that we both had Lupus and we could find no one to help us.
My hope, for WeHaveLupus, is that it is the place that my daughter, Lauri, was looking for. As you said, this is a place where the people understand your emotions, where we know that we feel lonely at times, we get angry at times, we become frustrated and we just want to scream. These are all natural emotions and are actually welcomed here. I want this to be a safe place where everyone can express themselves without judgment or repercussions. This is a place where there are NO stupid questions (no such thing when it involves your health or your peace of mind), and the rule is: Give support, provide comfort, be understanding, share your wisdom, share your experiences, give answers, and always be respectful.
Thank You for letting me know that, with my daughter in my heart, I am giving to others what she so badly needed and wanted. Thank You, Bruce, for being a part of our family!

Peace and Blessings
Saysusie
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Rastagirl · Posted: Thu May 15, 2008 2:13 pm Post subject:

Hi Bruce,

I, for one, am very glad that you didn't give up on Forums after your past experience. That you tried again. Sorry you were treated that way. Crying or Very sad

How can one NOT 'vent' about this disease? That's like asking everyone who is suffering to "be stoic. Hold in your anger, pain, frustrations, sadness. Keep that to yourself".

That's like saying, "you're only welcome if you have positive 'happy' things to say."

When was the last time you had something 'positive' to say about Lupus? For me, NEVER!!

The 'positive' things on a Forum come from the kindness and support, the caring, that others share willingly. Not the forced kind.

This world we all share needs a lot more kindness, in my humble opinion!

Bruce, when I read your post, I was overcome with the need to 'vent'!!! #Mad

Many thanks to those that have enabled us to do that freely in a loving, safe, place. You have my gratitude.

I hope you're feeling better today, Bruce.

Fondly,

Lori Razz

sits_inthe_corner · Posted: Thu May 15, 2008 2:16 pm Post subject:

That you are Saysusie

I feel here I am treated with respect. There was another board that I went to before I found this one. There where some good people on it. One day ... one of those people just disappeared. No posts no responses...they were just gone.

I made a post to enquire if anyone knew what had happed to that person, and I found myself banned for asking. Shocked

Seems the other person had been banned for questioning a "rule" and I was informed by email that I was not longer welcomed at the board because I asked after a banned person. Shocked

I felt like a three yr old who had been scolded for not choosing my frineds more carefully.

Here, there is warmth, and concern and acceptance. I've never felt belittled or gone with out an answer.

When this site went down I prayed that it was a glitch or a hic up that would be fixed. That's when I realized just how much this support has come to mean to me.

I'm stuck in limbo with my diagnosis and frankly I'm so disgusted with my medical system. I dont know what I'd do if I couldn't come here and learn and vent and learn some more.

Hugsss and thank you and Conrad and all the other wonderful people who are now very much in my heart Smile

Razzleberry · Puppy Joined: 12 Jun 2006 Posts: 201

I tried out another forum when WHL was down. It was not good! The people were ..I don't know ...not nice and self absorbed and uninteresting. There certainly were no warm fuzzies!

Thank you, Saysusie, for this wonderful site!!!

mnjodette · Posted: Thu May 15, 2008 5:47 pm Post subject:

Ditto seems so....so.....lame...! But, Saysusie, I've got to say "Ditto!!" to everything that's already been said. I've said it many times before - this board was a lifeline for me when I was first visited by IT....I was scared to death and felt so alone. WHL gave me information I needed .... and hope that I needed even more. Thank you!
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"Always laugh when you can. It is cheap medicine." Lord Byron

admin · Posted: Thu May 15, 2008 9:09 pm Post subject:

rob · Bear Joined: 12 Feb 2008 Posts: 677 Location: Maine

I've read some of your posts Bruce, and we have similar situations, and similar problems. I'm glad you are finding a little peace and comfort in the words of people here. This place, and the people here are not like any other site I've been to. I'm thankful every day for Conrad and Saysusie, and for the friends I've made here. I'm glad you found us Bruce.

Rob

sits_inthe_corner · Posted: Fri May 16, 2008 8:05 am Post subject:

Where do flies go when it rains?
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Oh look ... a cookie

Saysusie · Posted: Fri May 16, 2008 8:26 am Post subject:

Ok...we've finally found a STUPID QUESTION! Hmmmm "why is ice cold?"
First, let's look at the word "cold"..............what is cold? is it a real sensation or just a signal from your brain? what happens when the brain receives information from the nerve endings? Is it something that is universally accepted without question? What is it determined by and who says that that determination has to be "cold".

"where do flies go when it rains?" That is presuming that they've gone somewhere. So, what actually happens when it rains? Perhaps we can look at the behavior of flies to actually predict rain? Are they dormant during precipitation or......here's a thought.....flies are somehow connected to the entire process of moisture, clouds, temperature and thus, rain!! Hmmmmmmmm

See, even stupid questions can instigate a conversation (albeit - a conversation that is just as stupid as the question).

Leave it to Conrad Very Happy

With a little help from SITC

SMOOCHES
Saysusie
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Look For The Good and Praise It!

SwirlyGirly · Posted: Fri May 16, 2008 8:27 am Post subject:

Awww great! I'm so glad that there are some smart allecks here! I don't know why, but that just makes me happy. Laughing

Oh and Bugs, usually try to hid from the rain, going into overhangs, under large leaves, seeking shelter when they can find it. I work with kids, I'm used to those kinda questions. Laughing

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~SwirlyGirly~
California
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Rastagirl · Posted: Fri May 16, 2008 8:40 am Post subject:

Thanks, Beloved Admin....

SITC....

Saysusie......

For starting my Friday with laughter! Laughing

You guys are great!

Think I'll go ponder those questions over breakfast. Confused

Have a great day!!!

Lori

NoodleMom · Labrador Joined: 09 Nov 2007 Posts: 305

Glad you are here Bruce. I also believe that it is okay to vent. After all we all have feelings both positive and negative. I do not believe that it is healthy to stuff feelings.

So feel free to vent away.

K

rob · Bear Joined: 12 Feb 2008 Posts: 677 Location: Maine

TERIOD · Posted: Fri May 16, 2008 8:54 pm Post subject:

molecular inactivity Laughing

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Fair Oaks California