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  1. #1
    Join Date
    Feb 2011
    Thanked 0 Times in 0 Posts

    Red face new to lupus

    I've recently been diagnosed with SLE and I'm terrified. I'm a new schoolteacher and I'm in the midst of a flare so my job status right now isn't stable. I've always been active and an overachiever and I feel lupus has robbed me of everything I love and am used to. It's hard to get those who know me to understand I can't do what I used to do or how I really don't feel well sometimes. Hope u guys can provide some been there done that keep it moving support and advice

  2. #2
    Join Date
    Dec 2009
    Atlanta Area - Dacula
    Blog Entries
    Thanked 437 Times in 351 Posts


    Welcome to WHL, try and stay calm. it's going to be hard. the less you stress the better it will be. We have a wonderful retired teacher on here. She'll be able to give you some advise for teaching, we also have active teachers, so I'm sure that Marla and Linda will be able to help you out there. Now comes my part, you have to learn to adjust your life, slowing down is the hardest thing of someone like you; but that's one major thing you'll have to do. Organizing your priorities. Like I want to do this, so i can't do that today.

    Towards your friends, there's the spoon theory story to tell. I have brain fog when it comes to remembering where the links are posted; but I'm sure our great moderators can direct you. the threads and stickies are full of informations and all.

    Hugs and Good Calming Thoughts are being sent your way,

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

    wilsgurl (02-25-2011)

  4. #3
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    Good morning willsgurl. I know this is a scary time for you but Nonna is right about the stress. The more stress you are under the worse the flare will be. It use to irritate me when people said "don't get stressed" because I wanted to yell "how can I not stress when my life is falling apart" but I have come to understand that they were correct. Stress with Lupus makes a never ending circle of pain. We feel bad so we stress because we can't do what we did before. We can't do what we did before because stress causes us to flare. It simply isn't fair!

    As for your family and friends, the story that Nonna is talking about (The Spoon Theory) is what I used to explain things to my family and friends. This story can be found at and I am going to paste the link below

    I am not sure what symptoms you are having or what brought about your trips to the doctor but I want to remind you that Lupus is no longer a death sentence. It does mean there has to be some adjustments made in your life. Like you I was an over achiever and I have to tell you that this disease has meant changes to my life. It has not meant that my life is over though. Yours is not over either. You just have to adjust to a new normal.

    Luckily you took a great step in finding this place. There are wonderful people here that understand exactly what you are going through. You are no longer alone on this journey because you are now a member of our family and we always take care of each other

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

    ~Winston Churchill~

  5. #4
    Join Date
    Dec 2010
    Thanked 22 Times in 22 Posts


    Hi Wilsgurl,
    Welcome to WHL! Nonna, and Tgal have already given you some wonderful advice, So
    i would like to say i do know what your going through, as i went through the same
    feelings of being robbed of my old self, scared of what all lupus was going to do to me,
    and was like i was greeveing for my old self while trying to accept the new me and the new's
    that it was lupus. And trying to learn to do thing's different and adjust to the thought that i couldent run at a fast pace as i was use to doing.
    So try as best you can to take a deep breath, and take it one day at a time. Ive alway's
    been a hyper person, ran my own buissness worked 14-15 hour's a day in my buissness
    till we sold it. T he last 7 yr's ive been home a house wife love working in my yards all day and flower bed's till startrd getting sick on and off for the past 7 yrs and 3 yr's ago lupus & sjogrens
    totaly knocked me down in my track's. So i learned as much as i could about the diseases
    so to better help myself on what to do to help the lupus and not to do, to help keep flairs a bay best i can, along with some adjustment's in my life on how to work around it and with it.
    Sending you Gentle Hug's & Calming thought's!!!!!!! Diane,,
    ~Where Hope Grow's, Miracle's Blossom~
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

  6. #5
    Join Date
    Aug 2010
    West Midlands, UK
    Thanked 36 Times in 32 Posts


    Hello Wilsgurl,
    Welcome to our large family of the WHL and like Diane said Nonna & Tgal have welcomed you in a lovely way.

    Actually being robbed of your life is how SLE can make you feel but like Nonna said depression is the worst thing for it to make it come on more.
    You will feel like it's an hard task to get other's to understand only those with the Disease will actually know what your going through and you've come across a lovely group of people to understand you and help when your at your lowest.

    I definitley know how your feeling i'm 42 and was robbed of my life from 18yrs old and working the lot had to stop, i've had different illness's all linked to the condition but it's only been the last 2yrs they've told me i have it and was born with it after blood tests and x-rays but i am mentally satisfield now knowing what the underlining problem to everything else was but it does'nt stop the everyday of wakening and wondering what condition my body will feel like.

    There's so many threads to help you learn the condition and when your down just come on and chill out and let us know how your feeling, the worst thing is holding how you feel inside.

    ((Hugs)) Terri xxx
    Last edited by Peridot_Gem; 02-01-2011 at 11:22 AM.

  7. #6
    Join Date
    Dec 2008
    Blog Entries
    Thanked 94 Times in 83 Posts


    Welcome Wilsgirl,
    You have found a good forum here all compassionate people who can identify with some of whats happening.I know its a scarey time,but hang in there and rest when you can. I was once in a full time job,others here too.For me i had to give it up for a while,but for others ,some have gone back and happy like they used to be.So it isnt all doom n gloom.I used to be in a good job,travel the world,go out clubbing bla bla bla.For now i rest.But one day i'l go boogie again i know,because friends i met here have.You'll get through all this.Onnce you gain knowledge and chat to members you'll see life goes on,but just a little differently,slower pace.Hope this makes sense.Hope to chat with you soon.
    lots of love
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  8. #7
    Join Date
    Jun 2010
    Perth Western Australia
    Thanked 182 Times in 116 Posts


    I am just reading this thread for the first time. I wish I had answered ealier but I have been very sick with complications from an operation over 9 weeks ago, around the time that you posted this. I have not been able to be as active on the forum as I was previously, but I will make sure that I check as often as I can so you can get the support you need during this difficult time.

    Nonna suggested that I will be able to give you some advice on coping with Lupus and teaching, as I am also a teacher. Let me know some of the difficulties you are having and hopefully we can work out some solutions together.
    Diagnosed with Lupus - 22 June, 2010

  9. #8
    Join Date
    Feb 2011
    Thanked 366 Times in 316 Posts


    Hi Linda,
    Sorry to hear you've not been well and i hope your abit better now from your op and your help will do wonders mate.

    Luv Terri xxxx

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