tabathabroaden

Throwing the towell in.....

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Hi, I have been diagnosed with Lupus since 2002. I have experienced many challenges during this time. First off, my doctor who originally diagnosed the disease unfortunattely had a stroke and that started the long frustrating road of the doctor trail. Each doctor I see just seems to listen selectively or really quick to put me on additional meds. when I question, the answer is always, " well, we just dont know. My issues have escalated to the point where I have now lost my job. My current rheumys answer was "well, chalk it up and go on disability" I tried to explain to him that this isnt my goal and again my concerns were drowned out by his own personal opinions. I could continue all night long with the terrible experiences, but I will end it here and just say, ARHHHHG!!!! What am I supposed to do at this point, at the end of my rope!
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  1. Cathy's Avatar
    I would find another doctor. You need to see your doctor every 2 months for blood work and follow-up with meds. and care. As far as work girl suck it up for a year so you can get FMLA. Because we show no outside illness but a red rash no one will get it. If you are really in alot of pain maybe try to starte a part-time job. Dont give up. Write down a list of your concerns and dont let that doctor leave that room without getting answers. You do have the right to tell him if he dont treat up then referr you to someone who will. Get hooked up to a Lupus Center which are in some major cities. Lupus is on the raise they cant keep turning their backs on us anyone. I 100% understand all your anger towards others who are so stupid because "WILL YOU DONT LOOK SICK" and you feel like shit and they keep pushing and pushing and pushing. It's ok to break down, cry, stomp, yell and cuss. but you will get back up and fight again. Welcome to this roller coaster ride.
  2. tabathabroaden's Avatar
    Quote Originally Posted by Cathy
    I would find another doctor. You need to see your doctor every 2 months for blood work and follow-up with meds. and care. As far as work girl suck it up for a year so you can get FMLA. Because we show no outside illness but a red rash no one will get it. If you are really in alot of pain maybe try to starte a part-time job. Dont give up. Write down a list of your concerns and dont let that doctor leave that room without getting answers. You do have the right to tell him if he dont treat up then referr you to someone who will. Get hooked up to a Lupus Center which are in some major cities. Lupus is on the raise they cant keep turning their backs on us anyone. I 100% understand all your anger towards others who are so stupid because "WILL YOU DONT LOOK SICK" and you feel like shit and they keep pushing and pushing and pushing. It's ok to break down, cry, stomp, yell and cuss. but you will get back up and fight again. Welcome to this roller coaster ride.

    Cathy,
    Thank you for your response. I did find another doctor, he walked in the room, evaluated the swelling, asked me a few questions then left. He sent the nurse back in the room with scripts and told me to rest. I asked the nurse what did the doctor say and she said said you have Lupus. I thought to myself- DUH!!!...He wants you to take these and see him in days. So hear I am again. No job, no mney, no insurance, and scared! Oh yeah, I did have FMLA, but my doctor would only approve 8 hours per month, so in a flare, I exceeded that and I was fired. I dont want to give up but I am so tired. I am sick of the snickers and like you said, Oh, you look great! People have no idea what I feel like despite what I look like. I fear this has ran its coarse and im just about done!