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Thread: What is your "new normal"?

  1. #11
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    What is the difference between Mild and Severe Lupus?
    Are there concrete distinctions or definitions?
    Would my doctor be able to tell me which one I have?


    When someone has Severe Lupus, does it hit them all at once, or does it gradually get more severe over the years?

  2. #12
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    Severe Lupus usually invovles the internal organs (as well as fatigue, skin rashes, sun sensitivity etc.) and manifests in symptoms such as pericarditis (heart), pulmonary hypertension (lungs), lupus nephritis (kidney), to just name a few. Yes, your doctor will know, based upon what parts of your body are involved and what organs are involved, if you have severe or mild lupus. Mild lupus may manifest itself by skin rashes, chronic and debilitating fatigue, hair loss, mouth and nose ulcers, etc.
    No, not all of us develop severe lupus all at once. The maddening thing about Lupus is that our symptoms change, they come and go and many of our symptoms take time to develop. Some of us find out we have lupus after we've suffered from severe internal involvement. There is no way to distinctly say how any of our lupus symptoms will evolve. For some of us, it takes years before we develop serious symptoms, some of us never develop serious symptoms and some of us start out with serious symptoms! That is why getting a final diagnosis is so difficult and such a lenghty process for many of us!
    Elesewhere in these forums are discussions about the tests that doctors will run to determine which, if any, internal organs are involved and how much they have been affected. Perhaps after reading those and comparing them with the tests you have taken, you may have a better understanding of what your doctors are looking for and weather or not your lupus is severe or mild.
    I wish you the very best
    Peace and Blessings
    Saysusie

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    Default My normal

    I'd say my new normal is a lot like Saysusie's. I lost my job and I am trying to work at home doing websites, although it isn't quite paying the bills yet. One thing that really irks me is when people find out I have Lupus and they say they know someone with it who lives a normal life and Lupus does not really affect them day to day. It's like I am blowing it out of proportion when I can't get out of the bed the next day after shopping at Walmart for an hour. Some people just don't get it that Lupus affects some people differently than others. Thank goodness for this forum because it is the only place that relates and makes me feel half way sane!

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    TammyR is right on the money, especially when she was talking about people knowing someone who has lupus and leads a "normal life". Whenever I hear that it just makes me cringe! Lupus affects all of us so differently that some of us will have mild symptoms and others of us will have severe symptoms and everywhere in between. For me I don't have a "normal" pattern. My symptoms change so frequently that its impossible to have a new normal. What I do have is the knowledge that I have to plan out my day and everything that I do, I have to pace myself and prioritize everything. I never used to be a "list person", but now I live by lists they help me SO much. Some things on my list may not get done, but oh well. I do my best and i've learned that i have to be happy with that.

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    Tammy and Ruth, you're so right. It's frustrating to hear someone tell me about someone they know who has lupus and that person's life is so normal, no one would even know they were sick. They don't understand how many different shapes and sizes lupus comes in. They may not know what it takes for that person to appear "normal" to them. And, they don't know what that person might have gone through earlier or might go through down the road. I have a few close friends who understand (my boss is one, thank you God!) As for others - I'm pretty tired of explaining. I just try to focus on not making my life about my illness, and I look outward as much as I can. It helps me, and I think it makes it easier for my family.
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Default Great question!

    This is exactly what I have been dealing with myself. I have been sick most of my life, even before diagnosis, due to an extremely rare genetic condition. So normal has never been normal for me. But since diagnosis I was forced to drop out of graduate school and quit my job. I'm constantly in and out of the hospital and most days I have trouble with doing most of my errands before getting too tired. I was also forced to move back in with my parents so they can take care of me especially when I'm doing my infusions. I wonder if it will get better or if possibly I might even get back to the way I was before I got sick from Lupus. It might not have been great but I would definately trade everything to have it back! Being 25 and back with my parents is difficult and I'm about 6 hours away from all of my friends. I don't know if I will ever come to a point where I consider this normal. Right now I think I would just take feeling even a tiny bit better over a new normal. I wish everyone luck in finding a new normal or even getting the old one back!

    ~Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

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    Brandie;
    Just a curious question. You said that being 25 and having to live with your parents so that they can take care of you is difficult. May I ask what makes it difficult? This is just a personal question for me :lol:

    Saysusie

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    Even though I am totally grateful that I have them to fall back on I'm still having issues. Mainly, it's me trying to assert autonomy and be an adult and them babying me. I feel like I'm back in high school compared to living by myself. Don't get me wrong I love them for all that they do but sometimes I long to be back on my own. The fact that that probably won't happen any time soon doesn't help. I know this sounds like I'm wining and I don't mean it that way. I just would like to be treated more like the adult I am and less like a sick puppy that needs taking care of. I have talked them about it and it has gotten much better with my dad but my mom says she doesn't see how she is doing it and gets angry. I guess because I have been down lately it probably seems much worse than it actually is...everything seems bigger when your down! But like I said I'm lucky to have them because I know others of us out there who aren't that lucky. I pray for them and all us every night. Thank you for your kind words on my other post--it made me feel better to hear your story!

    ~Brandie
    "Success is not measured by what a man accomplishes, but by the courage with which he has maintained the struggle against overwhelming odds." -- Charles Lindbergh

  9. #19
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    Thank you so much for answering my question and for being so open and honest in your answer. It was really important for me to understand your side and your point of view on this issue!

    Again...thank you :lol:
    And you are most welcome (regarding my answer to your other post). I am glad that it helped you a bit.
    I wish you the very best!

    Peace and Blessings
    Saysusie

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    Hmmm... Well at first I thought it all started because I was in the process of weaning our last child. I was tired and mega achy all the time... then I got this weird rash everwhere...went to the doc and they ran lots of blood work...to come back with a + for SLE...

    I guess new "normal" for me is
    Get up...try and shake off the aches and pains...get downstairs. Feed the girls make lunches...take my pills. I then need to just sit for a bit before I can get the rest of the day off to a start.

    I do the same stuff. House work and all. I also try and nap whenever I can ( usually when DH gets home from work) then I get up make dinner and that is it. I find I now need to get to bed between 8-9 30 at the latest or I am buggered.

    I schedual my doc appts to work with my Husbands work schedual...he likes to come with me to ask ??? too.

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