Results 1 to 6 of 6

Thread: New here.

  1. #1
    Join Date
    Apr 2011
    Location
    Georgia
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default New here.

    Hello everyone,

    I'm Alli and I'm 22. I'm mom to a 3 year old whose name is Jonathan. My fiance and I have been together for 8 1/2 years this Sunday.

    I recently had labs drawn and had a test come back positive and that test was the DNA antibody test. After doing research I saw that the test is to find out about lupus. I have scheduled an appt with a rheumatologist but cannot get in to be seen until May 4th. I'm new to this lupus world and I'm welcome to any advice or information that you have to help me until I can get in to see the dr.

    Are there any do's and don'ts to lupus? Any diet restrictions?
    I've tried researching it on the internet but would like to get information from those that actually have lupus.
    Any kind of information you can give me is greatly appreciated.

  2. #2
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Hi Alli! Welcome to WHL! First off I have to say "be careful what you read on the internet"! There are way too many people out there that try to sell "Snake Oil" as our Moderator Rob likes to say. They tell you that this diet or that herb will cure Lupus. There is no cure for Lupus but there are things that can be done to help keep it under control. The best diet is a healthy diet.

    What symptoms led you to go have the blood draws and made the doctor suspicious enough to do a lupus panel? Lupus is as individual as we are. It affects each one of us differently. Lupus can be mild to severe depending on what parts of the body are being affected. How about you tell us a bit more about what led you here and maybe we could be more helpful!

    Glad to have you as a part of our WHL Family!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  3. The Following User Says Thank You to tgal For This Useful Post:

    Saysusie (04-16-2011)

  4. #3
    Join Date
    Apr 2011
    Location
    Georgia
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Well, for the past year I have been feeling what I can only describe as what feels like bone pain. Sometimes it feels like someone is taking a knife to my bones and scraping them. Other times it feels like my joints are inflamed. I went to the Dr and they drew blood and said that they thought that I had RA (rheumatoid arthritis). ANA came back neg, Sed rate came back normal but the DNA antibody came back positive with the titer results of 1:20.

  5. #4
    Join Date
    Jun 2010
    Location
    Perth Western Australia
    Posts
    709
    Thanks
    9
    Thanked 182 Times in 116 Posts

    Default

    Welcome to this site. Waiting 3 weeks to see a rheumatologist is pretty good, I had to wait 8 weeks and I had kidney involvement. I know it will go very slow for you, but keep positive.

    Regardless if the doctors diagnose you with Lupus or not, it is probably a good idea to look at your lifestyle:
    1. Eat a very healthy well balanced diet, including drinking plenty of water. If you have Lupus, alf lafa sprouts are the only food you should avoid.
    2. Exercise regulary. If you have joint pain you still need to exercise to keep them from freezing up. I know sometimes it is painful, but on bad days just go through a range of gentle movement.
    3. Get plenty of sleep.
    4. Keep your stress level down. If your lifestyle is very stressful in the first place, work on some techniques to help you to cope with the heavy demands
    5. If you look afteryourself, Lupus can only be a bit annoying, like a constant small pebble in your shoe Sometimes you might not even notice it there, other times, OH MY GOSH - such a tiny thing can be so painful.
    6. Sometimes it doesn't matter how well you look after yourself and take your medication, you can still get very sick. Lupus is very unpredictable. However, if you don't look after yourself you WILL have some very bad flares.
    7. Take ALL the medication your doctor suggests. Don't think that you are starting to feel a bit better and you don't need your medication anymore.
    No medication = BAD NEWS!!!
    8. Lupus is rarely a death sentence now days.
    9. IF you are dignosed, research on the greiving process, and remember it is only natural to feel the range of emotions you feel. It is a process that we all go through.
    10 . Forget about being sick - and HAVE FUN. Don't let Lupus rule your life, you just need to learn to live with Lupus (like the small pebble in your shoe - annoying, but make sure it doesn't stop you from living)
    Last edited by Linda From Australia; 04-16-2011 at 01:01 AM.
    Diagnosed with Lupus - 22 June, 2010

  6. The Following 2 Users Say Thank You to Linda From Australia For This Useful Post:

    Saysusie (04-16-2011), steve.b (04-18-2011)

  7. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Oh Yes, we understand pain. This is a tough time for you. The waiting is the hardest part and hopefully you will get your answers quickly. For some it takes a very long time for a firm AutoImmune diagnosis. Pay attention to how you feel after being in the sunlight and/or Florescent Lighting. Over half of us tend to "flare" or get worse after UV exposure. If you find that happening to you then make sure you use a high SPF sunscreen outside and when in florescent lighting (office or stores). Wear a hat and sunglasses as well as long sleeves. Some people get rashes and some just feel bad so that is a big thing to watch.

    While you are going through all of this please know that we will be here for you if you have questions or just need to vent
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  8. #6
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Quote Originally Posted by concrete_angel1017 View Post
    Hello everyone,

    I'm Alli and I'm 22. I'm mom to a 3 year old whose name is Jonathan. My fiance and I have been together for 8 1/2 years this Sunday.

    I recently had labs drawn and had a test come back positive and that test was the DNA antibody test. After doing research I saw that the test is to find out about lupus. I have scheduled an appt with a rheumatologist but cannot get in to be seen until May 4th. I'm new to this lupus world and I'm welcome to any advice or information that you have to help me until I can get in to see the dr.

    Are there any do's and don'ts to lupus? Any diet restrictions?
    I've tried researching it on the internet but would like to get information from those that actually have lupus.
    Any kind of information you can give me is greatly appreciated.
    Hi Alli,

    Welcome to the WHL and it's nice to have you with us because people haviing it besides yourself know what your going through and i hope the threads help in many ways and also what Linda as put is a massive help to you.

    Well when you see the Rheumo i do hope he's a good one who will sort you out properly.

    Even though your young i do suggest taking your pace with doing things it will help your body, there are foods which alot eat but i've never done it myself and i don't carry a large appetite either.

    There's one major factor Lupus loves for triggering off more stress and depression but besides that if you have any aches or pains which we all suffer don't stretch yourself in regarding doing things, that's why i suggested pacing things you do.

    I wish you all the best with your rheumo and please keep we updated. xxx

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •