PDA

View Full Version : How did you find WeHaveLupus.com?



admin
01-05-2010, 01:20 AM
I was interested if members can recall how they found WeHaveLupus.com - Our forum was started in September 2000. Hey, almost ten years now!

Back in 1999 I ran an ecommerce company and we made a LOT of money. As part of my tithe I opened up a network of 100 free discussion forums. I was brainstorming different subjects and was talking with SaySusie - and the idea of a Lupus discussion site came up. So September 2000 I launch the 100 forums and SaySusie sits at her computer.

I see her and she's like "no one is here, but I'll wait". And then six months later "there's like two people here, but I'm happy I can help." And then one day she signs on and there's all these people here.

There was actually a time where I had a warehouse and team of coders running our forum network. Now it's just me doing messy updates. I closed my ecommerce company several years ago (balloon crash like all the others) but I kept the forums running that I thought were fun or useful, WHL being one of those.

WHL is very special because from the very beginning it had a real person watching it constantly. My only connection with Lupus is this forum and knowing SaySusie; so we're free from any endorsement or product affiliation.

So, how did you find our website?

rob
01-05-2010, 02:27 AM
I had never met, or talked to anyone else with Lupus other than my mother. I was in a terrible rut where I was stuck in self isolation. Didn't call people, didn't answer the phone or the door. I was desperate to reach out to someone else who understood what it's like to live with SLE. I had done Google searches looking for a forum, and I found a few. They had some good info, but were rather cold and deserted. Technically good forums, but lacking a personal, human quality. So I continued my search, and came across a website simply titled We Have Lupus. I was surprised to read so many honest, in depth posts, so I signed up, left a rather long first post, and signed off for the night.

The next morning, I was pleasantly surprised to find nearly a dozen welcome messages from some incredibly understanding, and friendly people. I met Saysusie, then Oluwa, and I knew I found something very special. Hard to believe that was nearly two years ago. So, long story short, Google searches brought me here, and the friends I've made keep me here. I am thankful every day for this place, and the friends I've made here.

Rob

Angel Oliver
01-05-2010, 06:39 AM
Wow so glad you met Saysusie Conrad.What an amazing place to come to when you are so distressed.This is how it was for me.Last i think maybe October, i had just been diagnosed with Lupus.Id heard of it before as i followed Back Street Boys and new Howies sister had had it. So i came home in distress,wondering what it was properly,so i logged onto google.Just put in Lupus help and i saw this group so i clicked and joined.Immediately i had help.Much friendly people who understood my messed up thoughts,people who listened,understood and made me feel welcomed.Unfortunetly,,my diagnosis was changed,as even though i have all the symptoms,my bloods came back better than the rheumi thought.I nearly then left the site as i felt like a fake.But the kind members here told me to stay,which im so glad i did.For with their help i got the will to fight the doctors,not take what they said for the truth and 1 year later now have for sure,Fibromyalgia,Sjrogrens,Reynaurds,being tetsed again for Lupus as recently i found the courage to tell the doc i am not gonna leave it that i have not got Lupus as my rheumi is still testing me and i have all the symptoms.He said he thinks i have it too but will also keep his eye on me.A year ago i would never have had the courage to say anything like that to a doctor as they intimadate me allot.So always keep fighting them ..you know your own body.
So Conrad,Thanks for doing this for people like me,who found the courange from members here to keep fighting!
Lots of love
Amanda.xxxx

Bonita
01-05-2010, 07:16 AM
When i was diagnosised i really was flying blind because i did not know anyone who had these dieases and was lost and scared and i look up lupus on the inter net and somehow came across this site. I thank God he directed me here and to all of these wonderfull knowledgeable people who have answered all of my questions and their geniune care and concern because we all share a common ground. Thank you to everyone God Bless all of you Bonita

Saysusie
01-05-2010, 10:05 AM
Wow, Conrad! What a great question and, yes, I remember those days just sitting and waiting and getting a little down because there was no activity here. Now, we are practically global. Some of my happiest memories are from members who we've helped so much that they actually do not come here anymore (weird huh?). But, my greatest moments are from the true and dear friends whom I've made here and who are always there for me when I crash or when I'm floating (lol).
As I've said many times, this is (and has been) one of the greatest gifts that I have ever received in my life!! Thank You Conrad
Can't wait to read the other responses!

Peace and Blessings
Namaste
Saysusie

DrinkofWtr
01-05-2010, 12:06 PM
I found this website by doing a "lupus" search.

abbasgirl
01-05-2010, 12:08 PM
I arrived here via google search.

Why isn't the world more knowledgeable about Lupus? The only time I had ever heard of it was years ago...I had heard a friend of a friend had Lupus. I asked what it was and a friend said it makes you bruise easily. Zeesh! I think of that knowing what I know now and it's sad! When the doc told me she thinks I have lupus and SS, I didn't know what to think because I bruise easily but not that easily, and what the heck is SS and how do you spell it? She filled me in a little bit and then the search started online. And soon after I found this site and became very educated about lupus! Hugs of thanks to Saysusie, Conrad, and everyone else here for sharing and caring.

Nonna
01-05-2010, 12:52 PM
I googled also. The handout from the doctor was brief and concise. I want to talk to others who have been diagnosed. so here I am.
Thank you Conrad and Saysusie.
Enjoy Life it's wonderful!
Nonna

Bonita
01-05-2010, 01:23 PM
So many people have lupus and why do the drug companies keep turning down the meds my doctor puts me on because they are not for lupus. Well what drug is labeled for lupus only? Bonita

ritzbit
01-05-2010, 02:20 PM
Before I was diagnosed I had only heard about Lupus from the show House lol Before going to the doctor appointment when they told me they thougth this was what I had I did research about auto immune diseases and Lupus was one of them. About a month after I found out I was a mess and trying to find people to talk to after my bf dumped me for always being sad. And google had this website on the first page =) lol

I love this forum. I'd probably have gone crazy a few days without it lol

debbie-b
01-05-2010, 04:12 PM
After I was diagnosed with lupus, I wanted to tell my family in Germany all about it. They would ask me questions, I couldn't answer, at least not in german, so I searched for a German lupus Forum. After all, everything I know is what my doctor told me in english. And alot of that you can't translate.
Well, I have found this german lupus forum, but let me tell you, these people are harsh.
If somebody would say, " i am having such a hard time, with pain or whatever." The response would be " stop your whining".
They would fight or be mean to each other. They would even call people stupid.
I found out real quick, this was not for me.
So I googled lupus forum and found you guys. I love it here, because people care about each other. Now I take, what I have learned here and translate it, so I can answer my families questions.
At WHL, I have never heard anyone call somebody stupid and people are very compationate.
Thank you for being here.

Debbie

Leksie
01-05-2010, 09:09 PM
Google lead me to this site also! We are all great people with so much to offer the world and eachother.:cute:

magistramarla
01-05-2010, 09:29 PM
Wow Conrad,
I am so impressed with what you are doing for other people by sponsoring this forum. You are truly a great man. I belong to another forum that I love, for AVN, which also has a version of SaySusie, named Marie. That forum was recently updated and looks lovely, but we are all going to have to pay $20 per year to be members. There are many people who would never be reached if they had to pay for membership, so you truly do a wonderful thing by keeping WHL free for everyone.
Like everyone else, I was frantically googling information about Lupus as soon as my PCP mentioned the possibility, and I quickly ran across WHL. I firmly believe that the best way to learn about something like this is to get the information from those who have the real experience - the patients. I learned this when I was a La Leche League leader. The so-called medical experts just can't give the "real" information that people who are living the experience can.
I was so excited when I found this group. I also disappeared for a while when a bad rheumy made me doubt whether I really had anything like Lupus, but I'm glad to be back and I've found some wonderfully understanding friends here.
Speaking of the old days, SaySusie, do you remember ILoveHistory? I wonder what ever became of her?
Love you all,
Marla

SandyR
01-05-2010, 10:27 PM
Conrad I was wondering about this very thing last night when I looked at your profile pics last night. I didn't feel comfortable asking you out right if you had any AI issues that made you start this site but had noticed that you rarely comment on threads that have to do with how our symptoms make us feel & I just couldn't wrap my head around how Saysusie was involved with creating this with you. Thank you so much for explaining this. I was going to ask you to make the history of WHL a thread but thought I had better look around and see if I had missed one already here and low and behold I come on tonight and here it is! Thank you! :laugh:

To answer your question - I found WHL through the wonderful world of Google too. -What did we do before Google?- I had done a lot of research on my symptoms when I was flaring last year and went back through my old medical records and started to look for patterns and googled that too and Lupus was one of the AI diseases that constantly came back as a cause of all my symptoms and not just one or two or three. It was like a lightbulb went off. I remembered that about 5 or 6 years ago I had a period of about 4 or so months where I was constantly sick and the PCP I had at the time suggested running a test to see if I had Lupus. I didn't really know what that meant at the time and when the test came back negative, I didn't think, or know, to question the validity of ruling Lupus out completely based on one test (which I can only now assume was an ANA) so when the symptoms again brought up the "L" word, I decided to learn everything and anything about it and after I learned the basic medical info, I wanted to know what it all meant in real life with real people so I started looking around for real people with real experience and Google took me to WHL on the first page of that search. This and one other site where the only 2 out of the bunch that were POSITIVE :yes: and not full of negativity and critism and meanness. I posted an intro and was pleasantly overwhelmed to see how many lovely people took me into the WHL world immediately and fell in love with your (our) forum. I almost left too when the last 2 docs said I have a different AI issue and not Lupus (which, like Angel, I still think is a strong probability for eventual diagnosis) but Saysusie convinced me that I was welcomed here with our without the Lupus label and I love it. The forums that exist for my condition is are nothing like this. They are full of people who only talk about death and dying and nothing happy and seem to have nothing to look forward too. I am only 31. I didn't want to be surrounded by death and dying. I want to live and WHL helps me do that more fully. Thank you, thank you, thank you, Conrad and Saysusie from the bottom of my heart for starting this.

Sandy

PS- Sorry for the long-winded reply.

MicRoMediC
01-06-2010, 07:46 AM
I have had the suspicion I had lupus for about ten years and then I was finally able to go to the rheumatologist and be diagnosed. I knew I needed a support system and my family isn't it. I came online and googled lupus support group and this one just sounded like the perfect fit. The title is just catchy and I knew it would be perfect for me. I started reading other people's stories and decided to join. Thank you so much for the opportunity for us to share our feelings and ups and downs with people that can relate.
Micromedic

Saysusie
01-06-2010, 09:57 AM
Magistramarla;
I do remember ILOVEHISTORY and how she suffered, both physically and emotionally. She was having some very serious problems when we lost contact with her and I, actually, think about her almost daily. I hope and pray that she is doing well and that she is one of those members who do not post because things are really good for her now. I try to visualize her healthy and happy!!
I failed to get her e-mail address before we got the new site (prior to this one) and could not locate her. Since you've mentioned her, I am going to do another search for her.
Also, I have not heard from James in quite a while (our other moderator). So, I am going to also make an effort to locate and contact him. He, too, was suffering greatly the last time we spoke and his wife was also extremely ill.
Thank You So Much For Reminding Me!! I'll let everyone know what I find out!

Peace and Blessings
Namaste
Saysusie

Saysusie
01-06-2010, 10:13 AM
Sandy;
No need to apologize for your response. It was beautiful. I do think that your question about how Conrad and I connected to form WHL is a valid one. So, I am going to give a brief history here:

I lost my sweet Lauri in December 1999. As I am a singer and my emotions were overflowing, I decided to do an Album in her memory with songs that talked about my journey through grief and healing. I had a friend who told me about a producer named Conrad Askland who was extremely talented.
I contacted Conrad and explained to him what I wanted to do. We had lots of meetings and I was so impressed that he, quickly, understood my vision. Also, Conrad will never tell anyone this, but due to my grief and unhappiness..my voice was not what it had once been and I could not find enough motivation to make it do what it needed to do. But, he worked miracles with me and I am forever grateful to him for that!
At any rate, during this process, I fell in love with Conrad as a friend whom I knew would be in my life until I died. During the process of making my CD in Lauri's memory, he mentioned starting a Lupus website that would be a support group for people with the disease. As I've mentioned before, I had no idea what a forum or website was at the time :huh:. But, when he showed me the first website, I was actually moved to tears!! We have been here for nearly 10 years now and I am still overwhelmed by the people who are here and who genuinely care for one another, I am still overwhelmed by Conrad's generosity and devotion to WHL, and I am still filled with love for the guy who pulled me through the hardest period of my life and who made my tribute to my daughter sound so beautiful. That is CONRAD!! There are no appropriate words that I can use to express my care, love, appreciation, and devotion to you, Conrad!

Peace and Blessings
Namaste
Saysusie

rob
01-06-2010, 10:39 AM
It's interesting how many people mention that they were put off by the negativity and downright mean demeanor on other websites. It never made sense to me that people would be that way in a place where you gather for support. Not everyone is going to get along all the time mind you, and we are all entitled to our own views and opinions. But, at the end of the day, we all face a common enemy, and as such, we share a camaraderie that transcends any differences we may have.

I have been impressed every single day by the sincere, caring, and honest people who are members here. As a moderator, one of my jobs is to make sure people maintain a civil and respectful manner with each other. However, in all my time here, the number of times I've had to cool down a heated exchange can be counted on one hand. This forum has some of the most polite, down to earth people I have ever seen on any forum. There is something very special about this place, and I am honored to be a small part of it.

Rob

Oluwa
01-06-2010, 11:13 AM
I wrote this in my personal journal just before I found WHL on May 22, 2007…."Today I woke up feeling like I was pushed into cement. I felt of stone. Like my body was encased in cement, laid in a distorted arrangement to set for the night. I could literally feel my spine from the base of my head to my tail bone. Shoulder and neck aches the most of all joints. The sockets of my eyes ache….with extreme light sensitivity. Head aches…on the top. I feel inflamed. I feel like I am in a fog. Broken sentences. Lost words. Nausea. The butterfly is fluttering. Sun, heat increased nausea. Been awake for 15 hours and the pain in my head and eyes and the nausea hasn’t let up.

Depressed. Burning belly. Cried. Alone.

I wish I could find the strength to move my body, exercise. Fear of the pain to follow, but I need to break through to feel good. I wish I could find the momentum. I wish I had support. I wish I had a cheerleader."

The day after I wrote that I looked for my cheerleader, May 23, 2007….I found her, Lauri’s Mom, Saysusie and then all of you. I ended my first post, which was so long with … "Does just being alive matter? I lost my creativity. Will I ever get better? This is the most I've done today, writing this..this ..this thing called my life." Saysusie was the first to replied with.. "....you do matter…. I am sending you a cyber hug because I can feel, through your words, that you need one. I want you to know that you are not alone.” (As you can see I save everything anyone writes me…)

I wrote.."This episode has been three months, it is getting old and as each day passes I am too a day older. Closer to the dirt than I am to a dance floor." I wanted to die….and here it is almost 3 years later since I stumbled into here. Though I may not be physically better, perhaps worse as I have been in a flare ever since…but my spirit is better. It was my spirit that was dying. I've learned, well almost...because I still sputter along...on how to share my life with Lupus and how to baby sit my body and I do matter. We all do. Sometimes we just have to be reminded of that.


I love you all very much and I do think of you every, every day even though I don't make my presence known with a post anymore.


Enjoy this day, I am and I am hoping I will have another tomorrow.


Hugs with love,
Oluwa


Stress makes the butterfly flutter.

BonusMom
01-06-2010, 05:56 PM
Thanks for sharing your story Conrad about how WHL evolved and, most importantly, supporting Saysusie's vision.

I was told by my motility specialist that my labs were out of whack Summer of 2007 and was being referred to a rheumy. I did some research and when that didn't answer the real questions with a human element i.e. labs, non-supportive spouse/family/burning/painful feet, I googled lupus support and found WHL. The knowledge and kindness has kept me coming back.

mountaindreamer
01-06-2010, 08:24 PM
I struggled alone for 12 years with all of the life changing symptoms of lupus coming and going through my body and attacking different areas at different times. I was diagnosed with fibromyalgia in 1996, so i just kept pushing through the pain. In 2008, after the two-year battle with my daughter's cancer, my entire body fell apart, and i became non-functional. I thought my body was just tired from the war on cancer. My wonderful rheumatologist saw my condition, and she spent over 2 hours with me while we pushed deeper into the diagnostic criteria. At the end, she looked at me and said " you and i both have known for a long time that something other than just fibromyalgia was going on....i am afraid that it is time to diagnose SLE. "

Even though i was prepared to hear this diagnosis, i was not ready for it, and just fell apart and did not know where to turn for help. I had no experience with online forums or chat rooms, so i asked my son to help me find an online resource and someone to talk to. He came back a couple of days later and said he had researched many forums, and he recommended WHL. I joined that night without ever visiting another site....I am so thankful for my son.

Conrad, I can not begin to tell you how much my "family of the sky" has helped me....i truly believe membership here has saved my life. I thought i was going to have to move into an assisted living facility and i thought my life was over.....well, from the incredile members here, i learned how to live a new life with lupus, how to stay in my home, and how to smile and be thankful for the little things in my day. I even refer to my horrible day after MTX as my "weekly vacation." (makes me smile everytime i say it)

thank you conrad, saysusie, and rob.....and I send my love to everyone.

BadFlareDay
01-06-2010, 10:32 PM
Well I feel a bit guilty about how I found the site, but I've become a reader...not much of a talker though. I guess I talk so much on a big forum that I moderate at that I end up too frazzled to talk elsewhere. I have an online shop that sells Lupus related shirts, and happened to notice someone from here had posted a link to it. I followed the link back via my site stats and the rest is history. I recommend this site to anyone I know that is curious about either my own lupus or suspects that they too may have it. I have read many articles on other Lupus sites but I find this one to be more like a close knit family. Thank you for creating the site, and especially a TY to saysusie for sticking it out!

SandyR
01-07-2010, 05:24 PM
Saysusie - Thank you for explaining that. Finally, it all makes sense now! :laugh:

BadFlareDay - what is the website for your online shop?

Linda From Australia
09-27-2010, 05:48 AM
I followed a link from The Lupus Group of Western Australia. I don't think you would have known that there was a link from the other side of the world did you Conrad. It is a pity no one else chats from Western Australia, it would be nice to go out for a coffee with someone from where I live. Anyway, you guys on this site are wonderful!!!

Hunniebun
09-27-2010, 10:48 AM
I was looking for information on google about what I was newly diagnosed with, as well as support and understanding from people who were experiencing the same thing, as nobody around me could understand what I was feeling and how it affected me. I was going crazy trying to deal with this on my own and after failed attempts with Arthritis support groups (only full of old people), that made me feel even worse. I do better socializing from a distance because I am very shy and anxious (which I'm working on). This site has been a blessing, and it is full of wonderful people who REALLY get it, and of course they would, we're all dealing with the same burdens, some worse, some not, but in the end we are all here together, for each other.
I was going through baaaaaaaad times, and this site and everybody on it REALLY helped.

Islablue
09-27-2010, 09:17 PM
Google of course! :)

SandyR
09-28-2010, 06:36 AM
Google of course! :)

This was my favorite answer. I Google EVERYTHING! lol. ;)

Linda From Australia
05-22-2011, 12:22 PM
I think it is time for the new members to let Conrad know how they found WHL. Since my post in September last year, I have met up with two wonderful people from Western Australia and spent some time with them in the real world. Thank you Conrad for helping me to get in touch with some wonderful online people, which helped me to make physical contact with some people where I live. It is nice to actually give a real hug to someone who knows exactly how you feel. Without Saysusie and Conrad, I would not have known how to deal with the &$^(@ that comes with this disease.

ferrini
05-22-2011, 12:30 PM
I found WHL yesterday with Google..am grateful for this site. it is already helping me.

steve.b
05-23-2011, 12:30 AM
i found this site, from a "bing" search. bing is the msn web search engine.
i was searching for this type of site, and it was the first on listed. i had never been in a chat room before, and had problems with support groups being negative.

iseedeadmonkeys
05-23-2011, 09:30 AM
I cant remember how i came accross this forum lol, i think i must of googled it, but thanx to this forum i now have a wide range of friends with lupus from all over the world who i keep in contant contact with, Like Rob a lob i was reaching out to speak to someone who knew how to deal the every days of living with the lupe, so for all that conrad i have you to thank, and Carlotta xxxx

Tracyl50
05-23-2011, 09:33 AM
i found this sight by doing a search on lupus and it came up on the list.. i am so happy i found it.. i get most of my info from all of you guys on here so thank you for your help!!!!

rob
05-24-2011, 05:22 PM
I found WHL yesterday with Google..am grateful for this site. it is already helping me.

Welcome to our group Ferrini!