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Thread: Not exactly what I wanted for christmas

  1. #11
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    Hi Snowbear,
    Welcome to the site. My name is Kathy and I have SLE Lupus. I am sorry to hear the way the doctors are treating you. Believe me you are not alone. A lot of us have been through the same thing and some are still going through it. You have to make the doctors listen to you or they will brush you off every single time and that is sad. Do you have Pernicious Anemia? Did they decide if you have a B12 deficiency? I am just wondering is all, because that is what I have also been diagnosed with last May.

    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.

  2. #12
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    Hello snowbear!!!!! I am so happy you have found us and you will be wrapped in love and support!!!! I am so sorry you are struggling with the doctors at this point. I wish I could tell you that gets easier , but it doesn't We have to be our own advocates 90% of the time and sometimes we have to educate the doctors Just keep your head up and keep pushing through this! We are all here for you!!! The brain fog is definatly something we all battle with :? I actually will put things I need in the fridge on purpose because that is where everything ends up :!: Hang in there and I am sending you happy thoughts and gentle hugs! Welcome :angel:

    :x-mas:
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  3. #13
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    I had to go for a schilling test last month - anyone else had that? - they handed me a large plastic bottle and told me it was going to be 'my new best friend for 24 hrs' so I asked if I was expected to take it to parties and what did it like to drink, but as i'm still waiting to see 'my favourite' :twisted: haematologist to get the results so the jury is still out on the b12 and pernicious anaemia. At this point nothing would surprise me. (well except a really helpful intelligent medic)

    it was nearly socks in the toaster and bread in the tumble dryer today because my daughter interrupted my train of thought... I think I shall try to remember that one for my autobiography.

    I'm still getting over the delight of going to my works do for a few minutes , using a stick to stop me keeling over, feeling like five day old semolina only to be told i looked 'blooming'. I feel worse than I ever have in my life and yet I have never 'bloomed' in my life before. This is such a puzzling illness. must be that lovely rosy facial blush I've been wearing. All natural too.

    Happy thoughts I'm trying to surround myself with those- I organised christmas, the tree is up, the food came by delivery as did the presents, the duck is on the freezer, santa is stashed at grandma's so the kids don't find the presents, the inlaws are in new zealand, I'm going to the theatre as my treat, and my husband likes cooking.

    if I can find a way to stop myself tearing the heads of loved ones when I'm too tired to think then it will be perfect. This is going to take a lot of work though. i keep finding myself feeling so angry. Mainly at me for not having the energy to do even little things.
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

  4. #14
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    Oh snowbear

    I'm all out of nerves for dealing with my brother. Johnny sad sack. I could just scream.

    He calls and goes on for three hours on the phone about family and the importance of it. Then he asks me for my other brothers phone number which I've given him many many times...well I finally snapped.

    In ten years he has NEVER called my brother or visited my aunts or uncles...grrrrrrrrrr.

    Now he has arrived for three weeks....and I've already had my fill of him. I really don't know how I'm going to get through xmass dinner with out shoving stuffing up his b um and shoving him in the oven.

    Sigh...fa la lala la lala la la

    Family... aint it grand...

    I promise to take care of myself over the holidays, to rest when I need to, step back when I need to, and not to stuff my brother in the oven cause santa doesn't smile kindly on that type of behavior :lilangel:
    Oh look ... a cookie

  5. #15
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    Quote Originally Posted by sits_inthe_corner
    Oh snowbear


    Now he has arrived for three weeks....and I've already had my fill of him. I really don't know how I'm going to get through xmass dinner with out shoving stuffing up his b um and shoving him in the oven.
    ah family, got to love them - nearly did that to my husband last night but it was a good job we were no where close to the fridge - he took us to London to the theatre last night but insisted on parking a mile from the theatre and then tried to walk in the wrong direction because he 'lived in london for years' and couldn't believe he was wrong. I had a hissy fit and hailed a cab.

    On the good side he is finally understanding just how difficult life is at the moment.
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

  6. #16
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    Gentle hugs to ya snowbear

    Hope you are not too sore today from your outing....and MERRY CHRISTMAS!
    Oh look ... a cookie

  7. #17
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    this is one of the few occasions when I'm glad not to be able to feel my feet (they go numb sometimes).

    Merry Christmas all (santa is due in just under two hours) and I'm off to bed
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

  8. #18
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    Oh Snowbear,

    I had a little chuckle at your post. Not funny...but sooooooooo funny! Merry Christmas and i hope you dont put him in the oven today hehehhehe. Hope you are feeling ok, i bet your are achy if you had to walk a distance, hope not though.

    Love Angel.xx

  9. #19
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    Merry Christmas Snowbear!!!!!

    :x-mas:
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  10. #20
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    santa was very good to me this year though he brought me lots of chocolates which my GP 'you must lower your cholesterol' will hate .

    I'm not sure I currently appreciate my Dad's gift though... a House DVD and t shirt with 'its never lupus on it'....

    :?
    'My doctor gave me six months to live, but when I couldn't pay the bill he gave me six months more.'

    Walter Matthau

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