Lupus~ the body killing itself.

27 Nov

I am still trying to read about Lupus because I vaguely remember learning about Lupus in school. I had my first patient this week with a serious flare of Lupus. I was shocked to find out that this disease is so debilitating, awful, ugly, painful, heartbreaking. The patient could not even swallow, the throat was inflamed with thrush, canker sores, and the mouth was inflamed with herpes sores. The patient could barely talk. The patient was paranoid, and exhibited signs of what appeared to be high dose steroid induced psychosis. The patient eventually went to the ICU and I am not sure what the outcome will be. I am just so disturbed by this disease and this experience for this patient and family. For more information about lupus click here. It can be just awful! It is the body killing itself.

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6 Responses to “Lupus~ the body killing itself.”

  1. Stephanie December 9, 2008 at 08:56 #

    Hi Jane, I’m Stephanie. I found this page through a Google Alert, and I just wanted to leave a quick comment. First of all, I want to start by saying that nursing is a very noble profession, and I don’t think that you all are really appreciated enough. My sister is currently studying to be a nurse, and she was terrified when I received my diagnosis of Lupus (SLE). I have yet to have a serious hospital-required flare, but the “small” ones are no walk in the park. My sister helps me shower when I have no energy or it is just too painful, helps me get dressed in the mornings, and has recently started performing the range of movement exercises to help with the stiffness in the mornings. When she isn’t around, my fiance does it all. From reading what you wrote, I can tell that you genuinely cared for that patient, and I know that meant a lot to him/her. Knowing that there are people out there that want to help, whether they are family or complete strangers like nurses and doctors, is a huge comfort.

  2. seejanenurse December 17, 2008 at 15:41 #

    I am happy to know that you have not been hospitalized for any SLE flares, but from what I have seen it can be life threatening. I am routing for you to manage the best that you can and if it ever comes to a hospital required flare just know that we are there to help. I cared for that patient alot and often wonder about the situation.

  3. SGethers December 18, 2008 at 05:06 #

    I’m moved by your caring statements about your profession and Lupus. I happen to be a registered nurse with Systemic Lupus. However, I am now disabled and practice minimally due to my illness. The problem I find with getting ill and having to go to the hospital is, believe it or not, NURSES! It’s frustrating and angering because many nurses are uneducated about this serious disease and they don’t realize the kind of pain we Lupies suffer from! I have had many nurses act as though my pain is not real and actually hesitate when it comes to medicating my pain.
    Then, once I tell them that I am a registered professional nurse and lose my patience, their whole attitude changes and then they start acting carefully and respectfully, as they should have from the very beginning!
    Lupus kills thousands of people all around the world every year and the last thing anyone with an incurable, painful disease is to be denied proper care and judgement from people who are just ignorant, either by choice or by design.
    Finally, people are listening and paying attention. Thank you for being one of them.
    Take care and I wish you a happy and long career in Nursing.

    • seejanenurse December 18, 2008 at 20:21 #

      Honestly before I cared for this patient I was not even aware how serious this disease is. I can imagine your experience, nurses really need more education and experience about lupus. I have been nursing for about 20 months before I had my first patient with lupus and I was so shocked. I think nurses need to be reminded sometimes to be non judgemental about pain and pain relief. Hang in there!

  4. Katie January 26, 2009 at 00:06 #

    Hi I came across this site when looking into nursing with lupus. I am 19 yrs old and was just diagnosed with lupus a few days ago after a horrible flare that I was hospitalized for. I have been sick my entire life and now that they have figured it out is kind of a relief but very scary at the same time. I am wondering if infection triggers a lot of you and if that makes it hard as a nurse. I know infection is definitely one of my lupus triggers and I wonder if that makes it more dangerous for me as a nurse. This is my dream and I want to do this but I guess as my parents keep telling me, my health is most important. I just wanna live each day to the fullest and get more advice on nursing with lupus if anyone has any insight it would be most appreciated. Even if it’s negative that’s fine I just want some advice! Thanks again!

    • seejanenurse January 26, 2009 at 21:32 #

      Katie,
      I replied via email 🙂

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