Anyone else from BYDLS? ButYouDontLookSick.com Roll Call! Don't be shy!

It really is great to start to see more and more familiar faces from the old butyoudontlooksick.com boards. an email is going to go out to all our old members soon. but in the meantime- PLEASE let our bydls spoonie friends know that we are here, and the party has begun! join right in. send your friends the link, post it on FB whatever— lets spread the word!

I found this place through bydls. Saw the spoon story some time ago and had to pass it on to my husband and mother. Now we refer to it all the time. I am glad to have found this place and hope to make some new friends who don't think I'm a hypochondriac and can commiserate with my frustrating journey.

I was never official, but was a frequent visitor!

Here! Love your site and all you do for the chronic illness community! Love ya!

Thanks for coming by jen!!! Now it really feels like home! :)

Off and on for several years.

BYDLS saved my life! Been a member for years and especially miss the message boards! So now I have switched by following Christine to Lupusconnect and then joining the communities that share the same diagnosises for example CrohnsConnect, LeukemiaConnect, etc. So now I spread the word to look here for support and to BYDLS for the Spoon Theory. I just need to home in on a group the same age as me, the 55+ people in addition to participating in the general illness population, age grouping helps me too. I have passed these sites on to my Health Psychologist and she passes it on appropriately to her patients as she sees how passionate I am on the subject. Great to find a new "Home".

Hi Teri! Glad you found us here! I'm in that 50+ age group too..

Hi Teri! Welcome "home" Thanks for spreading the word. Luckily, because we are becoming apart of an even bigger community, there are people of all ages and experiences here!

Thanks! I did find the box to find people my age, it was on here all the time. It is easy to navigate - just need a little practice. I agree we learn and get support from all ages and stages of this "game" called life.

I am a new Lupie 2012, love the BYDLS web site especially the "Sick Humor". I am new to this site. Until finding this site I had only found the Lupus.org forums. I like the format of this site.

Nursenanna53 - ya gotta have a sense of humor about chronic illness - if not - we all might as well just give up. My mom and i always said - "if we were gonna go - we were gonna go laughing!" We had great adventures.

Christine - yea - i joined in 7/2005. weird eh?

I love BYDLS.com!! I can't even tell you how great it was to find a place that put into words how it felt every time I was feeling like well, you all know what, and so many people would look at me sideways and say that now infamous phrase…'But You Don't Look Sick…you look really good…????" :( I have learned so much from that site!

Thank you!

I have posted there many times. I admit being told constantly "how good I look" or "I don't look sick" makes me feel that they don't believe I'm sick and minimizes what I go thru. My response usually is "I wish I felt as good as you say I look".

I hear ya! I purchased a T-Shirt from the BYDLS site store that says, "My disabling chronic illness is more real than your imaginary medical expertise…". I get many nods from those that understand and likewise, I never knew some had any health issues. I find the humor a necessary component of managing the stress of all that we go through. Ya gotta find or make the humor cause you are already doing all the work to just keep going and functioning. Humor/laughter releases positive hormones that help in many ways. A medicine you can't bottle or make a pill for. Keep smiling and saying if you only knew…

I'm a Spoonie from the BYDLS message boards, which I miss terribly. I was known as "Phoenix" but when I tried to register here, was told that name was already being used :( So I'm rechristening myself as "Holland Phoenix". I hope that more former board members will join here, following Christine's invite. I'm a bit paranoid about social networking sites, so am keeping everything private for now, other than communicating this way.

Hi Pheonix! This is kinda funny re-connecting with old friends. I know this format is different, but just consider it a "new paint job" on the BYDLS family you always knew!

Hi phoenix! I was Lindak on the boards. I believe i remember you - it's nice to have old friends connecting again!

Hi, Im Sue. I've had Lupus since 1995 and then dx with Fibro in 2001. Currently struggling with lung and neuro issues. And of course who can forget the constant Pain! I love the bydls website and the Spoon Theory

I am new on there. I love the spoon theory and share it with all who ask me how it feels to have Lupus.

Woot! old friends and new! I don't have lupus - but I love some who do! my main issues are fatigue and other autoimmune issues. I've worked with Christine the Spoon Lady for the last 7 years - oh god - that long? I love the community she created and unfortunatley crashed, and i'm hoping we can build a new one here.

Have we really been spoonie sisters that LONG!!! 7 years!

Hello, I am from the old BYDLS site,SO happy to have a community again! I have Lupus,Shogie's Psoratic Arthritis,,and the list goes on… I'm ready to make friends (:

Hi fellow spoonies. I was diagnosed with Lupus in 2006, and I also have Graves disease. I am excited to be a part of the group.

:) I like the name. "hope and coffee"

I feel like in "field of dreams" if you build it, they will come! Now we just need to start telling the world where the spoonies are!

Coffee gets my day started, and hope keeps me going!

Hello fellow spoonies. Hoping I am on way to managing this mess. Up to physical therapy where I can stand up from a chair 5 times without wanting to fall over. I will get stronger

Hello :) I have been sick for 6 years but I don't have a diagnosis…well I did, then I didn't…and I have gotten diagnosed with FM and Hashimoto's but I don't have the money or the insurance to keep going…thank you all for sharing your stories and support with others…my name is Lisa and I live in Georgia.

Hi!!! I am Kristina. Newly diagnosed lupus and sjordens 04/12. Found out Fri Dr believes I have MS as well. So happy to be around fellow spoonies. I live in The Hudson Valley area of NY.

Hi everyone! I'm new to the group and am excited to be here!

Hi. I'm from BYDLS on FB. I have Lupus, Sjogren's, Fibromyalgia and, just diagnosed, thyroid cancer. I live near Philadelphia, in Newark, DE. Any other spoonies nearby?

wow! see.. we already have a little party going! :) spread the news and get the word out. The more the merrier! I am learning my way around here just as you are… so if there is any tip or trick that you like— please share it with all of our "spoonie" friends.
(I like that you can tweet or FB any part of the discussions on the message board that might be helpful or interesting.)
I like giving gifts and even asked them to make a spoon gift!

Love and Spoons,
Christine

Hi Christine and fellow "Spoonies". I'm Dottie from Long Island, NY. I have Lupus and MS plus many other side invisible illness as well. Hope to meet many other people here and support Christine as well as everyone else. Still new, not sure how this site works, but so far I like this forum. Hope everyone has a peaceful night. :) <3

hi ya'll! i'm Adrienne from TN. i was recently (finally) diagnosed with lupus. my 19 yr old daughter has Ehlers Danlos. we both suffer with very similar symptoms and spoon shortages. ; )

Being able to explain my "issues" is soooo much easier now that I am a spoonie!

Here…I have primary Sjögren’s syndrome with secondary Lupus…and other things as most do. Looking forward to this new group!

Hi, I am Jenny from MS. I have Lupus and a host of illness including psoriatic arthritis, primary polycythemia vera, heart attack at 40, multiple spine surgery and the hits just keep on coming. I was just diagnosed with Sjogren's syndrome. I don't have a lot of info on the sjogren's yet. I know that it has destroyed my salivary glands, they found lung damage, and my eyes are affected. I am curious if you have any advice or info on treatment. Thanks so much!

I'm here! I'm known as Nessa…Although I don't have Lupus but I have do have several other issues. And I know several others who have Lupus.

I love wearing that shirt to doctors visits! Starts the visit off with a good sense of humor!

Im here.. Im known as Robbyn_in_tx. Im soo excited about what is to come from this site.. !!! Robyn

I am here! formally known as "the spoon lady" (obviously) lol

Who else has made the big jump over here?

I know I haven't made the full on BIG push on butyoudontlooksick.com but I am sure we will all start to gather, and make "home".

Love and Spoons,
Christine