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Thread: newly diagnosed

  1. #11
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    Thanks again for directing me to The Spoon Theory! It's such a wonderful analogy...and hopefully my family will FINALLY understand that I didn't, "catch Lupus," (no kidding, my grandmother claims my inability to leave my house some days and lack of energy, among other things, caused me to catch this disease! Crazy!

  2. #12
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    Hi and welcome to WHL.
    You are lucky, that you have a rheumy, that takes his time with you. Every time, I see mine, I spend about 30-45 minutes with him. That is very rare.
    We are all very grateful, that WHL exsists, it is a place where everybody understands, what we are going through. Because NOBODY who is healthy CAN understand.
    Good luck with your first rheumy visit, let us know, how it went.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    tgal (09-12-2012)

  4. #13
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    ... as for the needles, I still have to "watch" them stick me. It seems to make it "just a stick" like that. That's very tough to do when they're doing a shot in the backside... A nurse once told me long ago, "It only hurts goin' in. Now man up mister."... sigh...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  5. #14
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    Question Knowledge wanted....please help!

    Sorry I wasn't able to post after my 1st rheumy visit but things have been crazy and I've been crazy exhausted!! Had my 2nd rheumy appt this morning and it was interesting, to say the least I've been suffering with these weird & super painful headaches for about a year...that only hurt on the left side of my head for some reason...and I had a doozy this morning when I got to the doc's. For some reason my blood pressure, which is normally low (109/90ish on avg) was 148/104!! The nurse took it three times to be sure...is that normal for someone w/SLE & Tumid Lupus? My doc wound up sending me back to the Dracula wannabes for another round of an 11 tube blood draw, accompanied by a UA....then it was off to the diagnostic center (again...had chest X-ray 9/13) for a so- so fun (NOT!!!) mammogram....and I've got another round of biopsies scheduled on Tues afternoon on some of the new lesions that have popped up. Seems a bit like over-kill to me...can anyone tell me if all of this testing is normal? Oh yeah, and I'm supposed to make a neurology appt too....PLEASE, PLEASE HELP!

    Aloha,

    Chelle

  6. #15
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    it may sound funny......
    but lots of testing is good.

    lupus cannot be diagnosed by any positive test....
    it can only be diagnosed by ruling out lots of other options first.
    and then looking at the symptoms.

    the same goes for some of our secondary ailments.
    it may be lupus related......
    or it may be a primary complaint.
    the only way to tell often is by more testing.

    so lots of tests,may be your doctor being proactive....
    or he may just want you to help finance his next holiday.

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    SouthFLWahine (09-29-2012)

  8. #16
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    you're right, of course, about lots of testing being a good thing....i just hate feeling so out of control of what's happening & i definitely hate needles. i have awful veins for getting blood...they have to use the baby needles on me. actually had an anestesiologist stick me 17 times trying to start an iv before a surgery one time before he finally got one started in my ankle.

    i really appreciate your support btw, i've been trying to upload a profile photo but it won't upload. any ideas?
    Aloha!

    Chelle

  9. #17
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    Hi I am in south Florida too where exactly are ou?

  10. #18
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    Hi Wahine and welcome to the WHL forums. I think I'm a little too late for saying that though.

    I think all of us can relate to you when you say that you feel old. I know I can. I just hate it when my family gets annoyed with me every time I say that I'm tired and rest in bed for hours on end. Yeah, I know exactly what you're talking about.
    Living with Lupus Nephritis is not difficult but just a challenge.

  11. #19
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    Thanks for the welcome....it's never too late for that
    Aloha!

    Chelle

  12. #20
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    I'm in the Fort Lauderdale area. You?
    Aloha!

    Chelle

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