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New and so lost
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ewalton1532 posted:
Hello all,

I am new to this and I must say finding this support could not have come at a better time. I was diagnosed with lupus about 10 months ago and it has been quite a struggle. I have been on my own since I was 19 (22 now) and work full time to support myself. I am not close with my family and they do not know of my illness. Since my diagnosis I have been so lost and scared. I try and take care of myself the best I can but it just seems like I have no idea what I am doing. I feel so helpless and frustrated at times that I have so many questions that go unanswered. Not really sure where I intended to go with this post but I just wanted to say that this community has been a big help to me lately. It is good to feel not so alone I guess. Thank you.
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1stLadyDi responded:
Welcome. I don't know a whole lot about this chronic illness as I am just learning myself. I was diagnosed/confirmed with lupus about 1 year ago now, was taken aback by the diagnosis for a few months (almost in denial), then began searching for more info on the disease that was explained in layperson's terms. This is how I came to this support group and really appreciate it. While I do have family & others near to me, there is not much understanding, as most cannot relate, and/or are in denial (or want me to be) that I actually have lupus. If anything, it is comforting to know that I am not alone and oftentimes, I receive some practical advice that has been able to help me through this support. I pray that you are able to get the assistance that you desire, need, and deserve through others in this battle with you through this support group. God bless you, dear.
 
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lisaisweavebee responded:
Hi and Welcome!!

Glad you found us, but am sorry that you need us! Lupus just sucks, plain and simple. It is hard to handle at times, especially when you are first diagnosed. Feel free to ask any questions here and most often, one of us will know the answer or how to find the answer.

When I was first diagnosed, "The Lupus Book" by Daniel Wallace, M.D explained so much and helped me feel like I had some control. It explained what the disease was, what all the tests mean and what we as patients can do to help ourselves. I highly recommend it! I think the 4th edition is the latest version and costs around 20.00 or so. Well worth the money.

Hang in there and let us know how you are doing!

Lisa
 
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nancyj95 responded:
Welcome, and sorry you need to be here, but the help from others going through the same things is tremendous! I was diagnosed about 15 years ago and was blessed with understanding friends. Could never tell my mom, who was my only close family at the time-she was in a nursing home. I found the book Living with Lupus by Sheldon Paul Blau MD and Dodi Schultz a help to me.. It's written pretty much in laymen's terms. I don't know if there's a newer edition as the one I have is from 2005. Wishing you the best of luck and remember we are here!
Nancy
 
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Latina_B responded:
I understand where you are coming from. I was living by myself for a short while but couldn't anymore. You should be very proud of yourself that you can keep this up. But everyone has their limits, and that's when a support group like this comes in handy.

It's also good to hear that you are not in denial and you are WILLING to look for help and find more information about the disease that you have. As others have stated, you can read books people have written. I guess that is the easiest way to learn about it. I just looked it up on the web and on facebook.

Stand strong and don't give up. Just remember, you've gotten this far haven't you?
~FierCe AgainsT LuPuS~
 
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lupylisa44 responded:
Hi and Welcome!

We are glad you found us! This is a great place to ask questions, get support or to just vent. Please feel free to ask anything! I was diagnosed when I was 19 so I can relate to what it is like to have this disease at such a young age (that was 28 years ago!).
Not having any family support must be very hard for you! We are here for support if you need us!

Lupylisa
With love, with patience and with faith, we'll make our way.


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