View Full Version : Hi guys!
08-30-2011, 06:10 PM
Hi I'm Brian, I'm 18 years young! and I have SLE. I remember back when I was a junior in high school this rash on my face appeared...at first I thought wow this sucks my face is so red but I thought it would clear...After having it for 6 months I told my mom I think we should get professional help....we went to a few doctors and some had no idea what it was, some even giving me creams to rash solutions....not satisfied we keep searching, finally I went to the doctor that my grandma goes to, sure enough he said he thinks it's lupus and he wants to refer me to a hospital in LA....and now It's almost the 2 year mark....The lupus is still in full effect and I'm taking medications....it was going good till I decided to stop taking medication and eating fast food now I am in college and I'm doing a diet to try and get the lupus to it's previous state.
Hey Brian (:
You're right...Lupus does suck!!
Have you looked into seeing a rheumatologist in order to get properly diagnosed? What medication are you taking?
Unfortunately, Lupus is a progressive disease, so I dont think its surprising that its in a worse state now than it was previously... though it does suck.
I just wanted to welcome you to the forum though, and say hi!
What kind of symptoms are you experiencing, (If you feel fine telling us, of course), so we can get to know you better?
Welcome to the forum (:
08-30-2011, 07:52 PM
Hi, I am 53 Mother of one Son 21 and one Daughter 29. I am very happy to have found this forum! I have been able to continue working, although I pray everyday that I can continue for another year and a half so I can retire with insurance some Dr's think I should go on disability but I like working. I run the the warehouse for a school district with nine schools. I do all the ordering, and deliveries, shelving and anything else that is needed.
08-30-2011, 07:58 PM
welcome to our cyber family.
there are quite a few males here, so you are not alone.
please continue your search for an answer.
a rheumatologist is a doctor who specialises in the right area for your problems, i suggest you try to see one.
08-30-2011, 08:02 PM
welcome to you also.
i am glad you are able to continue working.
i presume heavy lifting wouls be normal in oyur field.
i have had to retire due to my illness.
i was a heavy duty mechanic, working on minning machinery.
but cannot even swing an axe for long now.
i hope your strenght continues.
glad you found us.
08-30-2011, 09:10 PM
Hello Brian, welcome to our family. I found a wonderful balance with my meds and eating healthy. I am physically doing incredibly well as of late. I hope you can find all the answers you need to feel and look healthy. You are in good company on this forum.
08-30-2011, 09:15 PM
Hello Pegarns, welcome to our family. I'm glad to hear that you like to work. Job stress wears me down! I have a fantasy that some wonderful, man would come along and sweep me off my feet and I would no longer have to work. Lol What are the odds that this will happen? Never mind don't answer that. Anyway, welcome to a great group of sweet people.
08-30-2011, 10:34 PM
I really appreciate you guys welcoming me into this community! I'll continute to update you guys on my status!
@steve I have already visited a rheumatologist and she's great! she's helped so much, I'm taking Prednisone, Plaqui(however you spell it), Cellcept(Mycophenlate*Generic*), Cyclosporine, Nifedipine, and enlapril...I think that's all. They have helped a great deal but then I ran into some moral & depression problems and decided not taking them was a better idea, but now i'm hapilly back on them and making a giant leap to beating this stupid diesease! I hope you guys all are doing well with your lupus
@Lovedbyhim Thank you so much and i'd really appreciate if you shared some of these secret diets with me!
08-31-2011, 10:38 AM
Hey welcome =) I just started college too and recently hit my two year official lupus mark recently as well! I too have learned how bad it can be coming off the meds because I've done it too. There isn't really any special diet thats going to help your lupus unless there are certain foods that you notice make you feel bad. I have cut down on meat because for me I dont think my stomach is digesting it right. Im glad you've found us =) This forum has helped me so much the past two years they are like my family =)
I want to welcome both of you to our WHL Family. This is a wonderful place with fantastic people. Please make yourself at home. Look around, read through old threads or make new ones if you wish. I look forward to getting to know each of you
09-01-2011, 09:27 AM
@ritzbit Hah! College is really enjoyable...I love the atmosphere and no one seems to care that I have this annoying butterfly rash on my face! and okay, yeah I'm pretty sure one diet for someone might not be as effective considering lupus reacts different in patients. And thanks for the warm regards and good luck on beating this diesease. Your not alone!
@tgal Thank you for the welcome! And will do....I continue to look at this forum daily for either inspiration or information....your stories continue to amaze me and let us all fight lupus not alone but together with the WHL fam.
09-01-2011, 09:40 AM
http://www.facebook.com/media/set/?set=a.100753163283972.1702.100000478664188&type=1#!/pages/Teens-With-Lupus/172034412859180 This is a page Im trying to build up on facebook. If you want you can like it and if you want to add me on there Im the admin in the bottom corner of the page =) Im always on facebook lol I've already told most of the new people I've met whats up with me and my lupus because everyone is a speed walker and Im a hobbler lol I've had to ask several people to take the elevator with me instead of the stairs if we're in the middle of walking and I feel like everyone gives us this look like "lazy" lol thats about the only things I've dealt with so far.
09-01-2011, 01:34 PM
Welcome to both of our new friends. This is a great place to be, and it's even better when the readers become writers and share their experiences and support with the rest of us.
09-01-2011, 07:22 PM
Welcome to WHL BeezyKang and pegarns!
As others have told you, we are a friendly, helpful group here. If we can answer any questions about those old threads or a new question, just ask.
Brian, stay on those meds, and enjoy college.