I was on youtube and watched a couple videos spreading awareness about lupus and about trigeminal neuralgia, so I was inspired to make one too.
I hope it's ok if I post it here...thanks, love Julie
ps. it's way too long, my next video will be better :)
Wow, you've got guts girl!! I don't think I could do that. It was so nice to see your face and hear your voice, to put a better picture in my mind when I read your emails etc. I found even more that I have in common with you. My arms and chest are all scarred up from lupus sores. Some look like a cigarette was put out on me. I hope you posted this at www.lifewithlupus.org too. I have a sore in my nose that w on't heal, its as big as my thumbnail. You also work from home? I used to do it almost full time but now it's like you, 5-10 hours a week. What kind of work do you do?
It was nice to see your hubby and daughter. I saved it in my "friends" playlist and my "lupus" playlist.
Way to go!
Blessings, Sheila
Hey Sheila, I was just writing you when I was messaged that your replied here. :) I'm a graphic designer and I work for the same company I've been with for almost ten years, just at a much reduced amount of hours. I'm really lucky. That's funny you said it looks like someone put a cig out on your arms, that's exactly what my newest lesion looks like. (the bad ones look like flesh eating disease, yuk)
Yeah, my arms are scarred up from hives everytime I go outside., and all the rashes and itching that come and go. I figure it could be worse, but it's totally neat that you have it too, (not good but neat), I feel even closer to you now! I figured my laptop has a camera, so I propped myself up on pillows and my laptop on pillows and then talked away. You should make one too.
How'dya like the way I put my bandage on the wrong side, LOL. That's me. I was scared to put the video not for the obvious reasons of exposing my disease and skin, but for friends like you seeing me (in action) for the first time thinking I'm not what you expected (or like). I feel like you already know the real me, I just didn't want to disappoint anyone.
I think your gorgeous and beautiful. What do you do at home? I can't wait to hear!
Love Ya, Julie
Yes you were different than I imagined but you're still wonderful! Wow, that graphic artistry is a talent I think is like magic!
I'm a proofreader and editor of documents that were translated into broken English for the UK courts, and I make into perfect English. I know my own typing has lots of typos, but that's due to me being too tired to pay attention after doing that for a living, and also due to poor typing. I really do know how to spell things. lol. Before that, I was an editor for a publishing company, also from home.
Julie, would you be up to starting a lupus group here? If not, no problem, just saw there are a few of us in here with lupus. Maybe one of the other ladies can do it.
Sheila
Well that's just like what I do. I design the ads for a publication/newspaper and then do the layout with the editorial, which I also do myself, and I maintain our website. You mean make a mini lupus group inside the TN group? That's a kool idea. I like it. What do you think it would entail????
Yeah. There are 60+ groups, why not one for lupus? I'm in one for Fibro (its been silent, not sure if its still going) and one for diabetes, so it would begood for lupus patients to have some others to share their overlappinf symptoms.
OH Now I get ya! I thought "Bens Friends" made the groups were in, but this is where you can make your own groups. Sure I'll do it. Start thinking of catchy names my friend! :)
Hi,
I posted in here a few months ago looking for someone with both TN and Lupus! Oh, now I have some people to talk to. I am in Lupus limbo and TN comes and goes so I am having a hard time getting a consistent dx, but meanwhile my symptoms are drivign me crazy. Would you be willing to lend me your input if I asked you a few questions? I feel so LOST...
Thanks, hugs and prayers,
Emily :)
Absolutely Emily! Sheila up here has lupus and TN! Ask away, my friend. I'll email Sheila and let her know about the conversation so we can all get in on it. There's more than a few of us with both Emily! You are NOT alone! Love Julie
plus here' s my personal email: ■■■■■■■■■■■■■■■■■■■
Love Julie
No need to email me if you ask here. I can see it.
Sheila and Emily, if your both here we can use the chatroom???
Oh Julie, I hope you do get me, cuz I now see that you didn't join any groups, sio maybe you didn't know there are some. If you go to my home page, on the left side under my pic and my friends you will see the groups I'm in that are all still here in LWTN. you can go to "groups" tab up top and then click "add" at the top og the groups page to add a new group. I'm not too creative. I just can think of "Lupies with TN". You're the artistic one.
jujubeee said:
OH Now I get ya! I thought "Bens Friends" made the groups were in, but this is where you can make your own groups. Sure I'll do it. Start thinking of catchy names my friend! :)