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Thread: Finally a diagnosis!

  1. #1
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    Thumbs up Finally a diagnosis!

    Hello Everyone,

    Yesterday was the first time a doctor has said I have Lupus. My doctor wasn't available, so I saw the doctor covering for him. He was awesome too, which settles my nerves for any other times I may need to see a doctor when mine isn't available. He had read my doctors notes and said he wanted to refer me to a Rheumy. I told him that's what my doctor wanted to do too, so he said, "Great! I'll go check his notes and see who he wanted to send you to." My doctor didn't have anyone in mind, so it was off to the nurse's station for them to find someone. Unfortunately, a lot of doctors don't accept my insurance, so it took the nurse a while. When she finally found a doctor that does, they told her they would accept patients with Lupus, but they aren't for a lot of other diseases. They also said before they would accept me, they wanted to see my chart and all of the tests I had done. If they agree to take on my case, then they would call me to make an appointment. I got a call this morning from my doctor's nurse because the Rheumy wanted more blood tests done. I just got back from doing my blood, so now I have to wait. I hope they accept my case because I'm not on any medication right now. I'm in quite a bit of pain, but I'm sure the rest of you are as well! I know you all understand what I'm feeling at the moment, so it's nice to be able to come to a place to share, vent, and get a little encouragement that's sometimes lacking at home. I'm not saying my family is horrible or anything, but I don't think they fully grasp just what it's like. Sometimes my mom will plan a day of running around and I'll tell her I don't want to. She sometimes gets mad, so I have to explain that it's not that I don't want to go, it's that I can't go. With all of the running around she plans sometimes, I'm exhausted after 2-3 hours! I'm just hoping the Rheumy calls me soon and I can get an appointment as soon as possible. I'm functioning at about 20% right now, so I am feeling a bit sad and frustrated

    Thank you everyone who has answered my questions and given support! You are all awesome!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    great news

    a diagnosis is the first step in getting treatment.

    i hope things progress quickly for you.

    it is apparently not uncommon in the american system for doctors to pick and choose there patients.
    at least you know, when they accept you, that they want to treat you, and they will not think it is all in your head.

  3. #3
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    I had family that didn't understand until I sent them the story you can find on the Internet called the spoon theory.... Put in spoon theory and lupus you will find it. I found it opened up eir eyes so now they don't get angry they understand and ask how many spoons do you have before they go to the next shop etc.

    Hope this helps!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  4. #4
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I, too, hope that you are accepted by the rheumatologist. I am glad to hear that your doctor, and his stand-in, are both pro-active. That is a big step in getting appropriate treatment.
    I wish that you felt better and I hope that, once you are accepted (thinking positively), your treatment regimen will bring about some good days for you

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  5. #5
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    Thank you, steve.bryce!

    Definitely great news. Now that my doctor knows what I have, we can work on the next step.

    It's very common for specialty doctors to pick and choose because they have to pay for large amounts of liability insurance, etc., (I know in Hawaii they do) but that doesn't always help them if something should happen. Most doctors choose to stop practicing in their specialty and go back to internal medicine (or stop completely like some of the doctors that took care of my grandmother). It's unfortunate, but I don't blame them for their decision.

    Every single doctor I've seen prior to my current doctor all thought I was completely nuts. I knew one of the doctors labeled me as a hypochondriac on my chart because when I had switched doctors to get help for other symptoms those doctor would be nice to me, but as soon as he/she opened my chart, his/her demeanor changed drastically. That's when I knew they all thought I was just making things up. That's also when I stopped going to the doctor until I could switch insurance.

    Thank you for your support!

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  6. #6
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    Thank you, Desley!

    I tried the spoon theory before, but I don't think it sunk in. I think the whole shock of me being sick and how it's affecting me is still trying to settle in to their minds. It was fairly quickly that I got diagnosed, so I don't think they had time to really think about it and go through all of the emotions. Now that it's the holidays, I think they're even more distracted with trying to get presents and celebrate than they are thinking about me being sick. I want them to celebrate and enjoy everything, so I haven't brought it up much except to tell them I'm tired and I'll go sit outside and wait while they shop.

    But thank you for the advice! I'll try again once the holidays are through.

    Blessings, Love & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

  7. #7
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    Thank you, Saysusie!

    I'm still waiting for the Rheumatologist to call. I hope it's because they're still waiting on the results of my blood tests.

    I am super ecstatic (and surprised) how pro-active my doctor and his stand-in are. It completely amazes me. I went from horrible doctors that didn't care at all to doctors that are constantly trying to help. I'm just so happy to finally have someone on my side.

    Thank you! I'm staying positive also and looking forward to better days

    Blessings, Love, & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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    I am so glad you are getting answers and I hope that if this rheumy can help you, then he will call and take you. I got tired of my rheumy putting me off when I was in pain so I fired her but I admit I am hesitant to find a new one because everyone out there has their own opinion of what is going on. I have a pain management doctor who is handling my case well so for right now I am in a holding pattern. I will need my Plaquenil refilled soon though so I am going to have to make a decision before I run out or hope my GP will fill the meds. (He probably will)

  9. #9
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    Hello mdawncooper!

    Still waiting for the Rheumy to call, but keeping positive

    I can totally understand why you're hesitant to find a new Rheumy. I'm really hesitant about doctors as well, which is why I was completely surprised that my doctor and his stand-in were so pro-active. I'm glad to hear you have a pain management doctor at least. I would call your GP's office and ask if he would fill your prescription. It wouldn't hurt to ask and to let him know your situation. If he can't or won't fill it for you, then you can decide if you want to go back to that Rheumy or not. At least your decision will be a little easier to make. Good luck getting a refill!

    Blessings, Love, & Aloha,
    Ty
    "Kindness is just love with its work boots on"...

    "No man stands so tall as when he stoops to help a child." Abraham Lincoln

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