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Thread: dying faster than I should....

  1. #11
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    Hello lornak
    I am so sorry too here you are so ill but you have too keep fighting and keep hope alive as you said you have a graduation to go too and a son and husband that needs you. Dont let one doctor tell you when he thinks you will die get a second opinion. Try a teaching hospital that takes patients with no insurance. There has to be something that can be done to get you on the right medication to get you back to feeling better. Call your governor,congressman any of these so called politicains that claim to have the peoples best interest. I know how it feels like when you want to give up. You feel like enough is enough already but like you i am also a mom so I have to keep fighting, crying and hanging in their until my time comes whenever that is . As for the advice on if you should tell yuor son I can only say that I lost my father six years ago and he took the decision away from me about how ill he really was so I was unable to say goodbye and that still hurts yeah I know he was protecting me because we were really close but damn it still hurts. Whatever decision you make only you know your son and if he can handle this . Hugs to you and your family and my prayers are with you. slim. ps kids are stronger than we give them credit for.

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  3. #12
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    I am sorry, that you have to go through this, it must be very hard.
    I have to agree, with alot of the answers you have gotten so far.
    Without a second or third opinion, I would not say anything to my son.

    But even with all the opinions of different docs, no one knows, what is actually going to happen and when.
    Because opinions are just that OPINIONS.

    I wish you all the best.

    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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    I just wanted to say thanks to all that posted. I do feel better about what the Dr. said to me and I will be waiting to tell me son till I get much worse.

    When it rains it pours------came home from the Dr. yesterday with a brace on my right arm. seems like my muscles and tendons are not working the way they should. cant lift or hold anything (typing sucks!!!). seems to me there is something else happening here, not just SLE. anyone else have this happening to them?

  6. #14
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    I don't know for sure, but that sounds neurological. I have that problem where I drop a lot of things cause I can't hold them. I see a neurologist to deal with it.

    As to the other, think good thoughts; faith and will are sometimes stronger than logic.

    Hugs
    Nonna

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    Wow Lornak,

    I just can't believe what I am reading. I agree with Marla and the others - I think it's pretty horrible of your doctor to put an expiration date on you like you are some carton of milk sitting on a shelf. How does he know? How can he practice medicine with no hope or optimism? He's just giving up on you and telling you to do the same? That angers me and makes me upset to think that he is treating you like this. And I have to wonder - if you did have insurance would your life be of more value to him? Would he be willing to put forth an effort into finding the right set of medications, excersizes, supplements, specialists and diet to help you live the fullest life possible? Is there no other doctor you can see? I don't know what part of PA you are in but there are so many good hospitals not to far from PA. Johns Hopkins, NYU, and so many others. Are there any you can go to and be seen with fresh eyes and a fresh sense of optimism because I agree with the previous statements - the doctors only have opinions and only God has the answers.

    As far as telling your son, I am not a parent and can't speak to that, but I can say as a child it makes me upset when my mom holds back health information from me because she thinks I can't handle it. She did that to me once in college because she didn't want to upset me before finals and I was more upset that she didn't seem to trust me enough to tell me or have enough faith in me that I would be able to handle the information. I don't know your son but I am not one of those fall-apart-at-the-seams sort of people who can't handle bad news. I'd much rather know what I am dealing with and then form a plan of attack.

    Whatever you do, you are in my thoughts and prayers.

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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  10. #16
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Lornack,

    I was just wondering how you are doing today. I hope you're having a good evening.

    Rob

  11. #17
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    Hi Lornack;
    I am glad to hear that you are feeling a bit better about what your doctor said. Although I have to agree with everyone who said that your doctor was very premature in making such a terminal diagnosis.
    I just wanted to tell you that, when I was diagnosed (1985), I was a very, very sick person. At that time, my doctor told me that I would probably not be alive by the end of the year because my symptoms were so critical and the medications were not working. Upon hearing this, the doctor and my husband became immediately involved in a very heated verbal altercation, after which, my HMO assigned me a new doctor the very next day. This new doctor happened to have just returned from a 4 week symposium on Lupus and started me on different medications, prepared an aggressive treatment plan for me, gave me a hopeful diagnosis and was very dedicated to giving me some semblance of a normal life. That was 25 YEARS AGO!! I have been downgraded to Mild Lupus and, because of his continued dedication, have remained in that status for more than 10 years.
    Please do not let one doctor's insensitive and uncaring diagnosis define you or your life. Do get a second opinion and make the decision, for yourself, that you are going to do everything possible to get control of your disease and to prove that doctor wrong.
    What you decide to do, with reference to your son, is such a personal matter and depends entirely upon what you feel is best for your family. I can only say that our children are, usually, much more resilient than we think that they are. If you do tell him, you may find that he is willing and ready to work with you to fight this diagnosis, manage this disease, and to live as well as you can.
    Do not give up..keep fighting, keep learning, keep insisting that all that can be done is done. We are here to help you learn what all of the possibilities are in order to help you help your doctor to work for you, not against you. I am keeping you and your family in my prayers and please know that you are not alone.

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

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  13. #18
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Lornak,

    You know, Saysusie's post reminded me of something in regards to Lupus and lifespans. My mother was diagnosed with SLE 22 years ago, and though she has had some tough times with flares over the years, she is still going strong at 73, and leads a very active life. If you count the fact that it's believed that she suffered from SLE for about ten years before the diagnosis, she has lived with SLE and thrived for 32 years! You should have hope, because there is hope for living with SLE, and my Mom is just one example of it. Go easy on yourself, and do what you feel is right with your son.

    Rob

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    Lornak,
    Rob's post made me think. I've been dealing with this since my 20's. I'm 62. As the others said, get a second opinion. Trust in the Lord to help you do what is best.

    Nonna

  15. #20
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    It is important to gage whether or not you are dying by the way you feel not by what another human being has told you. I have had the doctor tell me, while staring at my ANA titer of 1:1280, that there was nothing wrong with me. I asked well how come I feel like I am dying. anyway doctors are human beings and very flawed ones at that. there information comes from experts who are themselves flawed. If you feel you are decending fast then you must also know the answer to your own question. it is important to note that the very same hormone that works hard to normalize after stress response is also the one that prohibits the proliferation of T cells and supresses the immune system through its alkalizing action, cortisol. so save your cortisol and do not stress, try to just flow. this hormone is yours and you need it, dont give it to anyone.

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