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Thread: A Tearful Hello

  1. #11
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    Quote Originally Posted by steve.bryce View Post
    welcome to our lupus family.

    yes it seems wrong to wait till september. ask your primary doc if he can start you on something.
    also ask one of your doctors about time off of work. stress leave or sick leave, untill you have a chance to get over this flare.

    I have asked for sick leave so I can get better....at least become halfway functional and they said "sure, but you are responsible for your health insurance which is $333 and some change a month" Are you serious? I won't be working...How am I supposed to pay that? SMH

  2. #12
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    In this area there are only 2 but the wait time is the same and they have very thick accents. I'm not trying to be rude but I like to have a conversation that flows with my doctors not one where I have to ask him or her to repeat themselves several times. I feel that I have a lot of miscommunication going on when it comes to accents. Not their fault...and I don't mean anything ugly by that. But perhaps I will have to give in and try to schedule with those 2 and see what happens.

    As far as a policy book...haaaaaaaahahaha. ha. ha. ha. Asking for one of those is like playing where's waldo. There is one lone policy book that management is constantly misplacing. I think their problem is when I work less than 32 hours in a week. The flares are so bad though, and I can't help it if one wants to put the smack down for 3 or 4 days straight. I told them it was going to be like this for awhile but it's falling on deaf ears. I am going to look into that FMLA paperwork, most definitely.

  3. #13
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by Glibby View Post
    Thank you for the welcome, Rob. I did call my PCP today and she stated I had to ask my pain management doc for any lupus meds. So, I called my PM doctor and they said I needed to see him to get a RX for anything even if it's not a narcotic...and well, there are no appointments at the moment and my next appointment is on June 8. *sigh* I was taking OTC anti-inflammatories and they did nothing but make my tummy hurt. I did find some indomethicin(sp?) in my medicine cabinet and took some today. It took the edge off but not by much.
    Your PCP could have prescribed you Plaquenil, my PCP writes me scripts for Lupus meds all the time. So, you get to sit around and suffer because nobody will lift a finger to help you. And Plaquenil isn't a pain med, it's an anti-malarial drug that works as a disease modifier for people with Lupus. The eventual result after having been on it long enough for most people is reduced pain because of reduced disease activity, but it's not a pain med. It's ridiculous that your PCP is in a position to help you, but won't.

    Yeah, the OTC meds like Aleve (Naproxen Sodium) can cause a stomach ache. I have to take them with food otherwise they tear me up.

    Rob

    PS-I wish you lived in my area, because I'd send you to see my PCP. When I first saw him, he was up front about never having treated a patient with Lupus before. He told me he wasn't well informed on the subject, but that by the time I see him again, he would change that. He actually cracked open the books and studied up. He really likes to work with his patients as if they are equals. There's got to be somebody in your area who will help you...
    Last edited by rob; 05-19-2011 at 04:20 AM.

  4. #14
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    Hello Glibby, And welcome to WHL! I too have also been in your shoes. You have found an
    exellent site for careing support and great information ,and you just vent and ramble any time you want i know i have. A lot of the other members have already given some wonderful advice and welcomeing. Im so sorry your pcp wont call you in a script for plaquenil, Im with Rob, in
    our area all we have to do is call the pcp and they will call in plaquenil, wish you're dr's would
    do the same and i hope someone cancels so you can get in sooner to see the pcp.
    Big Hug's to you!!!!! ~Diane~
    ~Where Hope Grow's, Miracle's Blossom~
    Diagnosed,
    (CNS) Vasculitis, Lupus, Neuro-Behcet's, Raynaud's, Fibromyalgia, Diabetes, Earley M.S., Buerger's Syndrome.

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    Glibby (05-19-2011)

  6. #15
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    Quote Originally Posted by rob View Post
    Your PCP could have prescribed you Plaquenil, my PCP writes me scripts for Lupus meds all the time. So, you get to sit around and suffer because nobody will lift a finger to help you. And Plaquenil isn't a pain med, it's an anti-malarial drug that works as a disease modifier for people with Lupus. The eventual result after having been on it long enough for most people is reduced pain because of reduced disease activity, but it's not a pain med. It's ridiculous that your PCP is in a position to help you, but won't.

    Yeah, the OTC meds like Aleve (Naproxen Sodium) can cause a stomach ache. I have to take them with food otherwise they tear me up.

    Rob

    PS-I wish you lived in my area, because I'd send you to see my PCP. When I first saw him, he was up front about never having treated a patient with Lupus before. He told me he wasn't well informed on the subject, but that by the time I see him again, he would change that. He actually cracked open the books and studied up. He really likes to work with his patients as if they are equals. There's got to be somebody in your area who will help you...
    I think the fact that my PCP acted like I was asking for a narcotic painkiller is what blew my mind yesterday. smh. She acts like she's scared of my pain management doctor for whatever reasons. I've only seen him 4 times but he seems like a good guy, very outgoing and positive. I believe he will prescribe the anti-malarial med when I see him but I was told yesterday that due to the nature of the practice I would either have to wait til my appointment in 3 weeks or they can call me if someone cancels their appointment. This is so frustrating!

  7. #16
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    sounds like you need a new primary care doctor.
    your pain management doctor sound like a suitable candidate.

    see the thread "preventative care" in "lauri's lounge" for information about primary doctors.

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    Glibby (05-19-2011)

  9. #17
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    Quote Originally Posted by steve.bryce View Post
    sounds like you need a new primary care doctor.
    your pain management doctor sound like a suitable candidate.

    see the thread "preventative care" in "lauri's lounge" for information about primary doctors.
    I am home from work today....still feel really bad. I've been sitting here seriously considering going back to my original PCP I had since I was a teenager. I ended up at this particular Dr. because she is open on Saturdays and it was convenient when I needed a weekend dr.'s note for work(before I knew what was wrong with me). I will definitely look at that thread. Thank you so much.

  10. #18
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    Hi Glibby,
    Welcome to WHL. You have gotten some great advice from the others here. I agree that you should ask to be prescribed Plaquenil right away, and prednisone or something that will help with the pain. It's a shame that you still have to wait until June, but at least that is batter than Sept.
    Learn as much as you can here, and then educate your PCP and your PM doc.
    Hugs,
    Marla

  11. #19
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Is there such thing as malpractice by neglect? If there isn't a law against it, there ought to be.

  12. #20
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    yes rob, there is. and quite a few lawyers have got rich off of it.
    hard to prove that someone, did know, or should have known, but could not be bothered.
    easy to assume, but hard to prove.

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