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Thread: Lupus in Massachusetts

  1. #1
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    Default Lupus in Massachusetts

    Hi everyone,
    I'm 27 yrs old and was officially diagnosed almost exactly 2 years ago to the date (though I had symptoms for almost a year prior to then). My entire life turned upside down in the course of about a year. When I first developed the aches and pains in my joints and muscles, I was living with my boyfriend of 5 years in NYC while we both pursued our dreams of acting. I worked full time as the bookkeeper of a restaurant to pay the bills, while going on auditions and sending out headshots on the evenings and weekends. It was tough, but I was happy to be following my dream (even if it wasn't happening as quickly as I'd hoped).

    I developed terrible abdominal pain and was hospitalized 3 times (a total of 6 weeks) in the course of 6 months. I'm small to begin with, and I lost 20 lbs (dropping to a very weak 84 lbs) and ended up with a line in my arm to receive 16-hour daily infusions of calories at home for a month. I thought I was dying. Because they couldn't find the cause of my pain and steroids didn't work, I had exploratory surgery and had my appendix removed.

    My boyfriend decided he could not take care of me and would not put his career on hold to do so, so we ended up parting ways.

    Today I live at home with parents, work one day per week, am constantly tired and wear a pain patch 24/7. I takes lots of meds and see my doc in Boston monthly. I am actually much better than a year ago, but I still am seeking that miracle cure. I also struggle with depression. It's hard to be 27 and not know what you're going to do with your life, or even what you'll be able to do. All of my friends are out pursuing their careers, getting married, buying homes, having children. I see none of that in my near future. I guess that's why I'm here! I am hoping to learn how others have dealt with this issue. I see a therapist regularly, but it's not the same as hearing how someone else has gotten through it.

    So that's me. Sorry so long!

  2. #2
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    Welcome Ladybuggy! You will find that you connect with lots of others here with lupus. I too am 27 and I have lived with this disease since I was 11. It has brought many ups and downs but I have been very fortunate. I am sorry to hear that you have had a struggle with the lupus over the last 2 years. You are always going to have ups and downs with this disease, but keep a bright outlook on things. One day you just might get to persue your dream again. Keep the faith!

    I hope you will find this site very helpful! It is always nice to have others you can relate too. I hope to talk with you more in the future.

    Butterfly
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

  3. #3
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Ladybuggy
    I am truly sorry to hear how much you have struggled at such a young age. It is good that you are in therapy and that your parents are helping you. I imagine that it must be very hard to think that you have to give up your dreams and that your future looks bleak. But, also know that many people do, eventually, get to the point where their Lupus is manageable and they are then able to live relatively normal lives. Lupus affects each of us so differently that there is no reason, really, for you to predict a gloomy future for yourself.
    It is quite possible, if you continue to take good care of yourself, make the necessary lifestyle changes, follow your doctor's instructions and take your medications, that you may acheive a form of remission or, at least, be able to manage your lupus to the extent that it allows you to do some of the things that you want to do.
    In the meantime, you will always find someone here who understands what you are going through, who can give you advice, provide you with information, give you comfort, support and let you know that you are not alone!!
    Peace and Blessings
    Saysusie

  4. #4
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    Thank you for the warm welcome. I am really happy to have found this site.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    P.S. - I love your name "Ladybuggy". After being here for a while and reading some of our posts, you will know why :lol: :lol:

    Peace and Blessings
    Saysusie

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