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Thread: new to lupus

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    Red face new to lupus

    Hi,
    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

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    Hi
    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,
    Nonna

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    wilsgurl (02-25-2011)

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    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 butyoudontlooksick.com and I am going to paste the link below

    http://www.butyoudontlooksick.com/ar...e-miserandino/

    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
    Mari

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

    ~Winston Churchill~







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    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~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    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.

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    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
    Amandaxxxxxx
    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

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    Thanks so much for your support, guys. I'm i in the midst of a flare up and I feel horrible, but I'm staying positive that this, too, shall pass.

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    Hi Wilsgurl,
    Your welcome to our support as we all know what your going through.

    Sorry to hear your going through a flare up as they can be annoying besides depressing, at the moment i've got one on my neck that hit me last week and come afternoon or teatime the itching and scratching i do is like someone posessed.

    I wish you all the best with it mate & try and enjoy your weekend.

    Hugs Terri xxx

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    Unhappy Is depression a part of this????

    I've been feeling really depressed over the past few days about what Lupus has done to my physical appearance. My appearance has always been most important to me, and although I have SLE, my skin looks horrible. I've had acne breakouts that have left scars on my face, the prednisone has me puffy, but my hair has finally started growing back. The worst thing was when my grandmother asked me what happened to my skin because I used to have smooth, pretty skin. She doesn't know I have Lupus, so I played it off as stress. It was a really hurtful thing and I feel this is a curse. Is this kind of depression normal for Lupus patients? I know this is one of the symptoms of Lupus.

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    Hi Wilsgurl,

    As you already know depression is a part of this lovely disease. Part of it is from the disease itself and some of it is from the meds. What makes us depressed is as individual as we all. Our appearance, financial situation, loss of family and friends... the list goes on and on. You need to get with your doctor and let him know what you are feeling. He/she will work with you to try and overcome that part of this disease.

    Also, always remember that we are here for you also
    Mari

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

    ~Winston Churchill~







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