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Thread: New Diagnosis - Intro/ 20something Collegiate/Supersonic Woman

  1. #1
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    Cool New Diagnosis - Intro/ 20something Collegiate/Supersonic Woman

    Hello!
    Nice to "meet" you all and join these forums, I hope to learn a lot from you all in the time following and maybe I can even spread some knowledge of my own (i hope).

    LEARNING ABOUT MY LUPUS: A SERIES OF UNFORTUNATE EVENTS

    In late September my hair fell out, (gorgeous dreadlocks I had nurtured for almost 4 years) but I thought it was due to stress from a crappy job and bullying at school.

    Early October, I had woken up with a locked elbow that stayed locked for days my mom urged me to get bloodwork done and even though I thought she was trippin I did. My old physician had been transferred and a slightly rude, sassy, skeptical but (admittedly) smart doctor ordered the work. These tests showed the positive/high ANA and i was referred to a rheumy.

    Throughout October, my symptoms become more obvious so I investigate what ANA's imply and lupus appears to be the culprit. All my friends are skeptical, because I do have a reputation as a drama queen. But I can feel myself getting sicker, the pain, stiffness, memory fog, water retention, fatigue, locking joints start showing up.

    Late November, was the soonest I could see my rheumy for an eval/treat and she ordered more bloodwork but started off with a diagnosis of UCTD and started me on plaquenil (2, 200mg tablets daily).

    December 17th, I call in and get a call the same day from rheumy confirming Lupus. She says it's active, needs to be monitored closely but has not affected my kidneys (proved by my awesome urine :hehe.

    I joined this site to learn more about the illness that's going to stick with me for life.

    I can't be ignorant because I want a lot out of life and that's never going to change.

    I have a right to be happy and no excuse to let anything stand in the way of my completing my education, advancing that education, getting a job, helping the family that raised me and starting a family of my own.

    It's on Lupus, Oh...it's on.


    -Chillin, stress-killin and fulfillin.
    Parkvillepioneer

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Parkvillepioneer,

    Welcome to our group. Please make yourself at home!

    Rob

  3. #3
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    A positive attitude will take you a long way - it's good to see you have one!

    Learn all you can and take care of yourself...demand good medical care, maintain an open and honest relationship with your doctors.

    I also tend to "get up my fight" when it comes to stuff that is wrong with me (I train horses for a living and that "cowgirl up" attitude tends to leak into the rest of my life too)...I have found that that attitude works really well with short-term problems - not so much with long-term, chronic illness.

    Maintaining that "fight" attitude all the time is exhausting, and being locked in battle with your body is not always so productive (after all, that's what it's already doing to itself!). I have found that sometimes it helps to take more of a compassionate, care-taking attitude....I hate the disease, but I try to be gentle and loving to my body, and give it all the support it needs to keep as healthy as possible...I try to nurture it. Good food, lots of rest, and not pretending i am superwoman (well, most of the time!).

    Everybody is different, of course...but sometimes the most effective way to deal with this disease is to accommodate it and get around it instead of fighting it - a sort of diplomacy, if you will. I sort of think of it as a sleeping dragon inside me - there are things I can do to keep it asleep...getting rest, taking some medications, eating right (I have to stay away from gluten and dairy), etc. If I fight it head on and decide I am going to live life like I always have, damn the torpedoes, then the dragon wakes and I am in trouble.

    In any case, welcome to the community, and best of luck in your journey!

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