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Thread: too young !!!!

  1. #1
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    Default too young !!!!

    I was diagnosed today withthe results of my blood work. My mind is racing. .... I'm too young with so much to live for. I've been married for 2 years and have a 2 year old and a 2 month old. I've been seen a rhemie yet. will on thurs. Does the medicine make life normal again? Please let me know. :shock:
    cas

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    Default

    Cas;

    Welcome to a place where we all understand what you're going through!

    I too felt like my world was ending when I got the diagnosis, I suspect many of us do. But in my case that was about 3 years ago, and I'm still working full time, still doing most everything (some things a bit slower) and still plan on living til I'm 80 or so.

    For me, plaquenil (an antimalarial that many of us, if not most of us, take) was a godsend. it really made a difference in how I felt. So meds can be very helpful, you may end up on a variety of things - possibly prednisone, possibly a pain med, etc. It takes a while for all of it to sort out.

    One thing - watch you sun exposure. I'm as far north as you, and know that it isn't as strong this time of year, but even so, cover up. Wear a hat. Wear sunscreen. The sun is not our friend! It can bring on a flare, cause worsening of symptoms, cause rashes. You can still be active out of doors IF YOU PLAN.

    Hug your hubby and your babies, and realize that most of us (80-90%) live a normal life span.

    And stay with us here - we understand!

  3. #3
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    Default

    I know exactly how you feel... I think that normal becomes a relative term... I'm not sure life ever goes back to the normal you knew before all of this started... But, you kind of create a NEW definition of normal... Just like you kind of create a NEW definition of a "good day"... I also often feel like I am too young to have to think about things like doctors and pills and being too tired, and possibly (but not probably) DEATH!!! I mean, we should still be in the "invincible" stage of our lives, shouldn't we? Not feeling like we're 80... But, you have to take the days that are good, and remember you AREN'T 80, and that the prognosis is really very good... And try to remember that on the bad days... I have trouble doing that myself, sometimes... If you need to vent or anything I have a great set of ears... So do many people on this board!!!

    I hope you feel better, soon!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    I really apprieciate the support. These past few days I have been a little bit nerve wrecking. My dreams are sending me all types messages, what ifs..., and possible outcomes. I just been really nervous because I have sooo much to live for and sooo much more to do. I hope to stay the same self assured and confident person that I was 6 months ago. I just never seen this coming.
    cas

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    hi cassy,
    i'm sorry to hear about your diagnosis...i'm 25 and i got diagnosed with lupus early march of this year...a month after i had my second baby! it definitely was not easy...i can totally understand where you're coming from!! but i do have to say, the meds help tremendously...i'm on 3 different kinds of meds - plaquenil, prednisone and cellcept...they are working very well and my rheumy is happy with how my lupus is doing! he said that it's very stable and seem to be helping with my kidney (they thought it was affecting my kidney, when i first got diagnosed!)
    anyway, as much as i hate taking meds...you kinda have to change your perspective a bit once you have lupus...meds isn't that bad after all...as long as it helps, you just have to do what you got to do, right?
    and remember, it's okay if you have bad days...i feel awful sometimes when i don't have the energy to play or entertain my 3 year old and 9 month old...but you know what, it's okay...just make it up to them on your good days
    well, take it easy...it's not gonna help to worry about it...i know it's easier said than done...i still stress about it sometimes but try to take care of yourself...things will get better...God bless!!
    May God bless you all!

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    Hon, I understand how you feel! My daughter was diagnose on june 1 of this year with SLE. She turned 13 on july 1.
    My daughter has had a tough blow thrown at her, and it isn't fair that young people like you, or anyone for that matter, get lupus. But, we can't change what is, we can however change the way we look at our tomorrows.
    You will have a new normal to base yourself with. You will have great days, and they will last longer than the bad !!
    Everyone on this site is wonderful, helpful, generous and loving. You will find encouragement and support, I promise.
    Smiling uses less muscles than frowning.
    Love, Mommymc

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    Default wanted to share my story...

    Hi everyone,

    Although I am not newly diagnosed, a friend at work found this website and recommended it to me, so I thought I'd poke around. To Cass, the worst thing you can do for yourself is worry about how you're going to live your life now. I am 24, and I was first unofficially diagnosed by my pediatrician at 11. My symptoms have peaks and valleys...I have good years and bad years...I won't get into my life story right now, but here are some things that have helped me:

    (1) Yoga. It has AMAZING benefits. If you want to know more, please ask. I could talk about it forever and don't want to bore those who aren't interested.

    (2) Eat healthy, drink lots of water, walk a lot, and make sure you get enough rest. I can't stress these enough. My bad days are a lot worse (and a lot more frequent) when I'm lacking in one of the above.

    (3) Like hatlady said, please wear sunscreen. I ignored this one for a long time, and the sun has made me VERY ill in the past. You can have a normal and safe life in the sun if you wear sunscreen (I've been to Israel twice and did not get sick either time).

    (4) Know that you're not alone, and try not to dwell on the negatives. Yes, it's unfair. And yes, it's difficult. But we can either hate everyone for not understanding and not having to deal with the same things we do, or we can love ourselves, take care of ourselves, and enjoy our lives. I find a lot more joy and appreciation in things (like waking up and feeling good) than I think I would otherwise. That doesn't mean I don't have bad days, they are aplenty. But I know that when I'm conscious of my attitude it makes things a little easier. I wish I would have had a forum like this when I was first diagnosed.

    Anyway, back to work for me now...please do not hesitate to ask me questions or anything, I'm more than happy to share.

    I honor all of you...have a day

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