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Thread: New, looking for answers

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    Default New, looking for answers

    Hello,

    I am a 25 year old woman who was recently diagnosed with SLE. i had brain surgery in March 2010 to fix vestibular vertigo caused by lupus. I am now dealing with lupus nephritis as well as severe chronic dry eye that actually sent me to the ER because of the pain. Along with these problems I have hypothyroidism and am hypoglycemic. My biggest struggle right now is trying to find a stress level that doesn't keep sending me into flares. Some of the symptoms that I am experiencing are dramatic hair loss, joint pain, heart palpitations, skin rashes and depression. I am looking forward to supporting and finding support from wonderful people like you that are going through some of the same struggles that I am.

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    Welcome Kim. I am so sorry that you have been having a hard time with your Lupus and other difficulites. I cannot offer any advice for you but I can offer you my support. There are quite a few people who use this forum who have also had difficulites like you, and when they come online they will be able to give you some advice. Take care

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    Hi klmkelly, and "Welcome" from here also. I'm relatively new to this too, though I'm much further into life than you, but can empathize with you. Like Linda From Australia, I don't have any advice, other than "take care of yourself and take your meds when you're supposed to, watch your diet, and be sure and wash behind your ears"... Sorry, my mom's influence peeking out of me there. Everyone here is sweet ('sides me) and ready to listen anytime... We'll be praying for you.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Kimkelly;
    Welcome to our family where you will, most certainly, find support and understanding. Dealing with stress is one of the most difficult things that we must do. But it is something that we have to find a way to do as it can seriously complicate our disease.
    The hair loss is, unfortunately, quite common with our disease and almost all of us have experienced it. Please know that, once the medications start to work, the hair will eventually grow back. This is the norm, rather than the exception. But, it is going to take some time. Elsewhere, on these forums, are threads written by many of our members talking about how they've dealt with their hair loss, advice about wigs, hats, scarves, etc. and suggestions on how to keep the remaining hair healthy until it regrows.
    The joint pains and skin rashes are indications that your Lupus is active right now. I do not know what medications you are taking right now, but I would venture to guess that some of them were prescribed to specifically deal with these symptoms. While waiting for your meds to take full effect, it is important that you stay out of the sun as much as possible and avoid places with fluorescent lighting. Also, try to get recuperative rest and listen to your body. Never push yourself!
    Depression is, also, a common symptom of the disease itself and can also be due to your emotional state due to the disease and how it has affected you. It is just as important that we care for our emotional state as we do our physical state. If you have someone that you can talk to (clergy, professional, family) please do so in order to help you with this part of your disease. In the meantime, we are here to listen to you, support you, understand you, and provide you with comfort and friendship. I am glad that you are here and that you decided to join our family.

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 07-24-2010 at 09:34 AM.
    Look For The Good and Praise It!

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    hi kimkelly,

    welcome to our family. Your description of your struggles are so familiar to many of us. My hair got really thin, but seems to be going through a stabilized period right now. I have noticed that if i go into a really bad flare, my skin rashes are escalated, and my hair loss increases. Also, these are the times when it is especially difficult to deal with the depression. The pain, flare symptoms etc, cause depression, and depression causes stress and thus escalates the other symptoms....seems like a vicious circle.

    Just remember to put yourself at the top of your priority list, listen to your body, and try not to "beat up on yourself".

    And, by all means, lean on us whenever you need a strong shoulder. We all deal with the unfairness and fright associated with lupus, we are here and ready to listen.
    Phyllis

    share a smile today

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    Thank you all for your kind comments! I look forward to being a part of your wonderful community!

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