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Thread: Hello,new here and so scared after 7 yr's of doctors finaly a diagnosis cns lupus & s

  1. #21
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    I just wrote a really good reply for you Diane, but my computer froze and I lost everything. So I will start all over again.

    First of all you don’t need to apologise for your bad spelling. I will tell you about why I spell words differently to anyone else. We spell words differently in Australia, so I am always right and everyone else spells words wrong (Don’t you dare buy an Australian dictionary otherwise you will find out that I am actually a really bad speller sh sh sh you are not allowed to tell anyone about it otherwise my secret will get out)

    I have never been on METHOTREXATE so I can’t really help you there, but there are a lot of people on this forum who are on that medication. They will come along soon to give you some advice and share their experiences.

    It is good to grieve and cry for a period of time when you have been just diagnosed. I googled some stages of grief to help you though this difficult process.

    The Kübler-Ross model as described in Wikipedia is primarily for people who have been diagnosed with a terminal illness, please disregard any reference to dying as people with Lupus can be successfully treated which means having a diagnosis of Lupus is no longer a death sentence. Your life has certainly been made difficult now that you have a chronic illness, and you have every right to grieve your health, and the lifestyle that you are used to. I hope this article will help you to understand that the emotions you are feeling at the moment are very real, and is all part of the loss of your health.

    http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model

    The Kübler-Ross model, commonly known as the five stages of grief, was first introduced by Elisabeth Kübler-Ross in her 1969 book, On Death and Dying.[1]
    It describes, in five discrete stages, a process by which people deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss. In addition to this, her book brought mainstream awareness to the sensitivity required for better treatment of individuals who are dealing with a fatal disease.[2]
    The progression of states is:[2]

    1. Denial—"I feel fine."; "This can't be happening, not to me."
    Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind after death.

    2. Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
    Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.

    3. Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
    The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..."

    4. Depression—"I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
    During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect oneself from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.

    5. Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."
    In this last stage, the individual begins to come to terms with his mortality or that of his loved one.


    Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies and disasters.

    Kübler-Ross claimed these steps do not necessarily come in the order noted above, nor are all steps experienced by all patients, though she stated a person will always experience at least two. Often, people will experience several stages in a "roller coaster" effect—switching between two or more stages, returning to one or more several times before working through it.[2]
    Significantly, people experiencing (or caretakers observing) the stages should not force the process. The grief process is highly personal and should not be rushed, nor lengthened, on the basis of an individual's imposed time frame or opinion. One should merely be aware that the stages will be worked through and the ultimate stage of "Acceptance" will be reached.
    Last edited by Linda From Australia; 12-23-2010 at 06:18 AM.
    Diagnosed with Lupus - 22 June, 2010

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  3. #22
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    I am so sorry for what you are going through but it sounds like you have a really good doctor! You have one that is willing to accept that you have have something autoimmune going on even without the bloodwork showing it! That is rare and wonderful! I know you are down and depressed but this is good news. I know it is hard to see right now but you have a Dr. being aggressive with your illness to get it under control. I wish I was close enough to go to him!

    Rob has mentioned it before but I want to say it again: The net is a great thing but it can also be your worst enemy. Sometimes looking up the "what if's" of a disease can make you focus on them instead of on the positive side of what the meds and the treatment can do. I know it is difficult and that is why we are here for you but please try not to look at the "if this doesn't work" as it will only cause you stress. Stress is the last thing your body/mind need right now. It will make your flare worse which will make this harder to get under control. I know it seems as if I am asking a lot but I want you to give your body the best chance of getting better! Grieve, cry, vent and then get ready to fight this dang disease!

    Never forget that we are here for you. You are now part of our Lupus family and we will walk with you every step of the way.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hello Diane,
    You'll have to excuse any spelling's or mishaps where i'm concerned today as my head feels mashed in and carrying a right headache and refering spelling take no notice.
    Thank you for putting up what happened and letting we all know, it sounds disheartening when you go and nothing is showing in your blood but the blood does fluctuate bad with this condition and is a total nightmare to get positive results.
    I do hope the medication slows down your condition in what your suffering with, my skin specialist wanted me on presidone but when he checked my medication for my fits and depression it was a no go situation because of counter-reacting.
    With everything you've explained with what your going through i'd say you have SLE but lets just hope the tests for your skin show more results but i am sorry to hear you have diabetes that's a nightmare also, my mom had that bad and her family and they're forever checking me.

    Later today i shall actually check on what you've got so far, to understand it alot more.

    Do takecare mate and cry your heart out if it helps because i do now, more than i've ever done.

    Loads of luv Terri xxx

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  7. #24
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    Wonderful post Linda! Well said
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    hi diane,

    i remember how frightening it was when my dr. started talking to me about the different treatment options....i was petrified worrying about how far my disease had progressed. She sent me home to study imuran and methotrexate (MTX)...we talked about it, and she decided that i needed to go ahead with the mtx.

    i know of people who have used imuran for treatment, some saw positive results, and some did not. I can't tell you anything about it from experience. However, if you decide to try MTX, feel free to let me know, and i will help you with that medication. I do know that the shot form of mtx does not cause as severe stomach cramps as the pill form does. I don't know if Imuran dosage is the same as mtx, but i take my mtx shot once a week, and i feel pretty rotten the next day, then the next day i feel fine and am ready to go.

    Imuran and Methotrexate are both immune suppresent medications. They will slow down your immune system, thus, slow down the progression of your disease. I have been on MTX for about 2 years now, and i truly believe that it is working really well for me. I still have flares, but they don't last as long, and they don't come around as often. My rheumy keeps a close watch on my blood work, and so far, i have not had any serious problems.

    I don't take prednisone, but i have seen several members here who are put on 40 mg when they are in a bad flare. When your dr. starts to taper you off, it is imperative that you follow his/her directions. A slow taper will help keep you from going back into a flare.

    I hope you are feeling better today, and i wish you a merry christmas.
    Phyllis

    share a smile today

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    Merry christmas, Linda,Terri,Tgal & Phyllis
    Thank you linda for the wonderful post i realy needed that, Sure did help me to understand
    a lot. There are just no words to express how much it means to me & comfort you guy's
    have been to me through this whole scarry process & others on this forum!!!!!
    To walk with & help guide me and be by my side, and to know that im not alone in this
    process. I pray that you all have a pain free & wonderful christmas & a happy & well
    new year!!!
    Gentle Hug's & Love you all !!!!!! ~ 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.

  11. #27
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    Merry Christmas Diane. Have a wonderful day with limited pain.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hello Diane,
    That was so lovely what you put for Linda, tgal, phyllis plus myself.
    I realy hope your christmas as been a nice one and the pain and so on which your going through as eased abit at this time of season.

    Wishing you a Very nice Happy New Year [2011] and i realy do hope it's a good one for you one way or another.

    Hugs & Love Terri xxx

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    Diane;
    I just wanted to add my welcome to those you've already received. You have been well taken care of by the members here and you've been given some wonderful information, support and advice. There is not much more that I can add to what you've already received. I just wanted to make sure that I, also, welcomed you to our family and to let you know that you are never alone when you are here with us.

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

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  15. #30
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    Saysusie,
    Thank you so much for the warm welcome! And i am so glad to be a part this wonderful family.
    You all have been so much help to me! and i hope you have a great & blessed day!!
    love 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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