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Thread: "Its been a frustrating journey"

  1. #1
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    Default "Its been a frustrating journey"

    Since the diagnosis of Lupus at age 17 (not to mention the 12ish months before hand when doctors couldnt figure out the problem) life has been a difficult task. Having to complete important exams literally days after being diagnosed, massive arguments due to the anger that high dose steroids cause, having a number of stays in hospital, losing contact with all your mates, not being able to do what you love, seeing everyone else you went to school with partying every week, plus the depressing fact of feeling ill everyday has all been one heck of a challenge.

    Hoping that at some point during 2011 the time comes when I am able to get my life back on track. I am now 19 and strongly have the belief I will improve dramatically. The infusion of Rituxan will hopefully help things stay in control, and also be able to drop back in Prednisolone which causes so many horrible effects (in my case)

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    Never give up on Hope. Yes, you've had a hard time. Try some healthy eating and exercise to the best of your ability. I for one feel better when I've been exercising and moving. You're only 19; I'm close to 63 now. I was shy so I never had many friends. Try to keep close to the ones who understand you; it helps to strength you.
    Find things that you can laugh about - that makes you feel better too. Seriousness drags us down.

    Listen or don't listen; make your own choices! That's really important; don't let the downers get you. That leads to bad things.


    Big cyber HUGS for you, youngling,
    Nonna

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    Here is to a wonderful 2011 for you! I hope this year is your best ever
    Mari

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

    ~Winston Churchill~







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    Wishing you the best of luck!!!!!!!!!!!!!! Hopeing you have a wonderful 2011!
    Gentle Hug's to you! 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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    I know how u feel. I was diagnosed at 17 as well... infact i spent my 17th birthday in the emergency room. Im about to turn 19 in a short while and have just finished school. It's a long road thats for sure.

    I hope 2011 will be better for you and that everything starts sorting itself out. Lupus really hurt my social life as well, but im definatley getting it back on track. I hope u do as well. You just have to make sure u stay positive.

    Well we are close in age so i will be around if u ever need to chat.. or just voice ur frustrations

    xx take care

    Hazel

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    I know how you feel too. I was diagnosed at 16 and the past 2 years have been rough. Friends dont always get it and its really frustrating but try explaining everything to them. I've kept the ones that cared enough to stick with me even when I pushed them all out. Im always hear if you want to talk as well =)

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    Morning,
    Hope 2011 is the year everything settles down for you.
    Like Noona I know how hard it is missing all the things you should be enjoying as a teenager,I'm also in my 60's. I got really ill at 17 and was'nt officaially diagnosed untill 19, missed out on overseas travell and other social events that had already been planned and felt very down and left out. I was put on Prenisolone big doses to start with but have been on maintainence dose of between 15 - 9mg a day for some years now. However I'm sure that once things settle for you, you'll pick yourself up and get on with life, believe me it will happen. Keeping busy and as active as you can is important keep close to those around you who will give you positive and happy support. You'll find this WHL family great for support wish it had been around years ago I would't have felt so isolated with this strange sounding condition.
    I'm also only to happy to talk should you want to
    Are you watching The Open? Hope that torrential rain does'nt get as far as Melbourne.
    Merrilyn

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    Default Much appreciated

    First of all can I say how good it feels to have a caring bunch of people that understand your situation. Cheers guys its very much appreciated, and its not just being typed to be nice, its a true thanks.

    A fair few of you were diagnosed early as well, so theres alot of understanding going on here which I like. Merrilyn I am certainly watching the aussie open, "CARN HEWITT!", Hazel its quite incredible how similiar our situation is, I was diagnosed very close to my 17th birthday and spent it having a kidney biopsy....no fun, however I hope the both of us get back to winning ways and im confident we will. Nonna I will do my best to eat well and stay fit, it certainly does make you feel better. Ritzbit, Diane, Tgal thanks for all the support.

    Luckily I have a good doc that understands me and my feelings. I hope for the very best outcomes for all of you.

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    you have been on quite the journey for such a young lady,

    i join you in wishing for a better 2011, and i am so glad that you found us. You are right, there are several young women here who try to juggle the demands on your life with the limitations of your illness. Keep taking your baby steps, and hopefully by the end of the year, you will look back and see that you have made giant steps along the way.
    Phyllis

    share a smile today

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    Mountaindreamer I am just informing you that I am a male haha, I certainly should have made that more clear seeing that Lupus is much more often a womens disease.

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