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Thread: Scared.

  1. #1
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    Default Scared.

    So I found out I had lupus 2 years ago but i never really took it seriously or researched it much. i couldnt take meds consistently either. Now Im 22 and in my senior year of nursing and todays class was on lupus- i sat in the back of my class holding back tears staring straight down at my note packet. I now realize that im 22 and if my body feels horrible now how am I going to be 10 years from now. And since everybody has different degrees of symptoms i am terrified that ill never be able to have kids or the eventually my nervous system will be compromised. im so pissed that i got dealt such a shitty hand.

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    Hi amandanoel and welcome

    When it finally sinks in, it does hit like a ton of bricks. The good news is...lupus can go into remission. Life doesn't have to suck 24/7.

    Yes there are going to be some crappy hurtful and frustrating times. But there will be some good great and terrific times as well.

    We are not defined by lupus. Our lives are ours to live the best we are able too.

    Look around the board.

    Feel free to express yourself. We all have our turns at being frustrated and needing and understanding ear. We also take turns being the understanding ear :lol:

    Glad you found us.
    Oh look ... a cookie

  3. #3
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Amandanoel37,

    My name is Rob. I've been living with Lupus "officially" for almost five years now. I'm 40, but I believe I've been living with this since my late 20's. Lets just say it's been awhile. I was dealt a really bad hand, like you. There were some terrible, dark times, and I lost alot both personally, and health-wise. I wondered where I would be five, maybe ten years down the road. I didn't think I had a chance of anything resembling a good life.

    Today, I will not lie to you. It's hard sometimes. But, I'm alive, and I have things in my life that are fulfilling, even though my original plans for life got scrapped after the diagnosis. Yes, I have bad days. I also have plenty of good days. And I even have a few great days from time to time. I'm alive and I am thriving despite the disease, and the changes I've had to make to cope with it.

    Like SITC said, it can, and will hit like a load of bricks. How are you supposed to act when you learn you have an incurable, chronic, and sometimes fatal disease? You'll deal with it the best way you can at the time. For you, the best way to deal was to deny it, and ignore it the best way you know how. There's absolutely nothing wrong with your reaction to this. You are not the first person to hope that it will all just go away, that it's just a mistake.

    The fact that you have the courage, and yes, it takes courage to talk about this, even online, that you have the courage to talk about it says that you are ready to face it. You are facing it, and myself, and many other people here are living proof that you can manage, and live with Lupus. You can do this. I'm glad you chose to open up to us. You'll find nothing but understanding here, as we have all, at one point or another, been where you are now. Please, know that you are welcome here, and make yourself at home.

    Rob

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    I've tried denial too, but it didn't help.

    Not today when I have woken up with a rash again

    welcome to the board

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    Hi Amandanoel37,
    My name is Kathy and I also have Lupus (SLE). I will be 50 in December. I did not get diagnosed with the Lupus until I was 36 years old, but the Rheumatologist believes that I have had it since the age of 5. I understand how scared you are. I got very very ill before I managed to get it confirmed that I indeed have Lupus. I too wondered what the next 10 years would be like or if I would even be around. Well that was 14 years ago. You see though Lupus is cyclic. It tends to run in cycles. You will have good days and you will have not so good days. You will learn how to manage your illness. Just listen to your doctors and take the medications and make the adjustments that you need to make and you should do ok with it. God bless you hun and welcome to the forum.

    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.

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