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Thread: This is the story of my nightmare with SLE

  1. #11
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I, too, wish that we did not have to deal with doctors who dismiss us or try to make us think that we are losing our minds! But, in the meantime, we all help each other to learn how to stand up for their rights to be taken seriously, to be treated for their symptoms, and to be heard without pre-judgment and biases.
    Most of us, like you, had to learn how to stand up due to a health crisis. I hate that it takes this extreme before doctors will listen to us. Sadly, too often it does. But, I am adamant about each of us becoming knowledgeable about our disease and being our own health advocates.
    I have a co-pay also, but I am not charged for inoculations or injections. Perhaps it is our particular health plan. I know that my husband pays and exorbitant amount of money each month for our health coverage - it is obscene how much we have to pay! But, with my health issues, my husband says that he will just keep paying it because I need the coverage. He, of course, NEVER gets sick...so all of the medical bills are due to me
    :?
    I hope your day is relatively pain free and that you are able to enjoy your day.

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

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    Hi Saysusie,
    So far today I am painfree. I just came off of a low dose Prednisone and the Prednisone cleared up the rash on my feet almost immediately. Now the rash is back. I think that the Prednisone at lower doses helps me a lot, but my doctor does not like to perscribe Prednisone, because of the dangerous side affects. It is hard on the bones and heart is what he tells me. The Imuran slows the rash that I get on my hands and feet, but it does not clear them. I don't know. I can only do the best that I can do with this horrendous illness.

    For whatever reason my insurance charges me a big co-pay for the B12 shots if I get them in the office. I don't understand why, but the doctors office receptionist told me that they are not the ones charging the co-pay and that it is my insurance that is doing that. I um think that it will be a lot cheaper for us if I give myself the shots. I have a bad fear of needles big time, but I will have to overcome that somehow. I guess we have to do things in life at times that we don't like. I will overcome this and do ok. I have had to overcome a lot of things in my life and this is just another adjustment is all. I will be ok. Just say a little prayer for me ok.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #13
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Kathy,

    I've been reading your posts here, and I'm sorry you have been treated so terribly by so-callled "healthcare professionals". Most of us here have experienced the same bad treatment and lack of empathy from doctors. I cannot imagine being told to go out and get drunk by someone who has taken the hippocratic oath. That's absolutely wrong on so many levels. You also have spoken of your fear of needles. When I was in the Army, I saw friends who could endure the pain of a 20 mile roadmarch carrying a heavy pack and rifle, pass out at the sight of a needle. You are not alone in your fear of needles. I would be willing to bet, that once you get the first injection over with, you'll lose alot of, if not all your fear of needles. It's gotta be twice as frightening to have to learn how to give yourself an injection. You said that you stepped up and defended yourself out of desperation. I don't doubt that, but I think courage had alot to do with it as well. Dr's can be very intimidating, and it took guts to stand up and tell them you are not taking anymore BS from them. That courage will also get you through the needle ordeal. I think you will come to see needles as simply an inconvenience. Once you get past the first few times, those needles will be lose their power to frighten you. I've laid awake at night thinking about things I fear, and I'm really good at building up the fear to a level that just eats me up with worry. Once I face whatever it is I'm scared of, I look back and realize that I had made a mountain out of a mole hill. Hang in there, and know that you will get past this, and you'll be ok.

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    Hi Rob,

    I am working on my fear of needles and I will get it all worked out. I have also seen grown men pass out at the sight of a needle. Thank heavens that has never happened to me. I am going to get lessons from the doctor's office next month on how to do the injections on myself. I will overcome this fear and then be ok.

    There are some really sorry doctors out there and it is sad. I feel sad for the people that are going through a lot of the garbage with the doctors that will not listen to them. I had to learn how to speak right up and let the doctors know that I was not going to be put off ever again. I have a very good Rheumatologist now and he definitely listens to me. In fact he was shocked when he first saw me and stated that I have one of the most classic clear cut cases of Lupus that he had seen in years. Go figure. I guess I was just unlucky to get the jerks in the past. I had to get nasty to get listened to. I told the doctor that did the initial diagnosis that if he even dared to tell me that there was nothing wrong with me that he would not get paid and I told him that I wanted tested for Lupus as there is a long standing history of it in my family along with a host of other Auto-immune disorders. He agreed to test me for the Lupus and a Thyroid panel. The thyroid tests were normal, but all of the Lupus tests including the ANA were pos. My ANA titer was 1:360 speckle pattern. The Rheumatologist also diagnosed the Sjogrens with the Lupus. I was very glad to get a definitive diagnosis, so that I could get the proper treatment. The medications help a lot, but as you know there will always be flares along the way. Lupus is a cyclic diseasee with flares and remissions. I am doing ok today. God Bless

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  5. #15
    Saysusie's Avatar
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    Hi Kathy;
    I am happy to hear that you are having a pain-free day. Rob has given you some excellent advice and encouragement about giving yourself your B-12 shots. I just went to have mine today and, as usual, I had to do deep breathing, ask the nurse to give me a couple of minutes to prepare myself, clinch my teeth..pinch my arms, and finally said "do it!". UGGH!!
    As Rob said, you had the courage to stand up to your doctor, I agree that it will be that courage that helps you to administer your shots. I wish that we could be there to help you get through this...but we are always HERE!
    Best Of Luck :lol:

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

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    Hi Saysusie

    I am so glad that I found this place. I almost never talk to anyone about the Lupus, because a lot of people don't understand the illness and you know what I mean. I think that Lupus is one of the most mind boggling diseases ever. I feel like I can come here to get answers to questions that I may forget to ask my doctor. My husband is sympathetic, but he does not know that much about this illness either.

    I will do ok with the injections. I will just have to psych myself up to give myself the shot. I have met and beat other challenges and will manage this one too.

    God Bless
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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