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Thread: help!

  1. #11
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    Default hi

    Oh just look how many friends you have now....you are so not alone.I too have 2 friends but unfortunately they live a few miles away and i dont really talk to them about me and illness...they have their own lives and seem so busy and active and living a fun life.But even though it looks like they live fab lives...you know everyone puts on some sort of front...its not as rosey as we imagine.Ive had friends who i thought were friends.They've all gone now..thank god,cause i now know they were not real friends to begin with.But you dont realise this until you really need them.But i joined here and now i have true friends who understand me and so truly care. Its hard to cope with what you are going through but its NOT the end.Now is your beginning.You will get answers to many questions you have in your head.You will get love and support and most of all understanding.You post anything...noone will judge...but will pick you up and help you along.We also have fun on here too. Many members here are or have been very sick.......but we laugh and cry together.Glad you found us. You should also mention to your Doctor just how low you feel.They will help you with talking sessions or meds which ever you feel comfy with.....or just talk to us....either way....your getting it out n not keeping things all bottled up...so that will help you allot. I like chocolate and talk about it allot....so just a warning

    love
    Angel.xxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  2. #12
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    hi dmott,

    so sorry you are having such a difficult time. I am very glad that you found us, because we all help each other when needed, and we all celebrate each other when warranted. this truly is a great place and i know you will find friends among our family of the sky.

    About the methotrexate, i am no expert because i just started 3 weeks ago, but my rheumy prescribes the the injection that i give myself once a week, and i really only feel bad for about a day....some have no problems, and some are only down about 1/2 day. you might want to talk to your dr. about changing.

    I wish there were magical words that could make the depression go away. One of my main coping techniques, is to change my goals....for example, where i used to go to the garden store and come home with trays and trays of flowers, i now come home with three individual flowers. I know that i don't have more than that in me, but it makes me so happy to get out and plant those 3 plants....in other words, we just have to change what has always been "normal". we learn to set new "normals".

    so sorry you are dealing with everything, and we will do our best to help you overcome some of the trials and frustrtions. feel free to jump in on any thread, please make yourself at home here.
    Phyllis

    share a smile today

  3. #13
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    Default

    All of us have our low points and or depression days. You aren't alone and when you feel down come on here and vent it all out to us cause we are here to help. Know that you aren't alone at all. I just a few days ago felt similar feelings to you about feeling like why keep fighting. Well remember that your family and 2 friends love you. The one that says that talking about being sick will just bring in the devil says to me that she is scared for you and is worried that bad things will happen faster if you keep bringing up being sick. That is my take on but i could be completely wrong. We all have our good days and our bad days and as you continue to read posts you will see that we all are in this togather so please feel free to talk about whatever you wish and vent away. I know it helps me to get things off my chest.
    Hugs
    Maria
    God Bless you always,

    Maria

  4. #14
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    Smile Help

    Hello!!!!! welcome to this site we all understand you trust me i believe that everyone that has lupus has good days and bad days, but what i do is that i don't thing about me having lupus just learn to live with it . in my mind i say every morning before i give thanks for been here to enjoy my family i control my lupus i will not let it control me . my mother told me that when i first go dignosis with this ugly diease . if you need a friend i will be here for you

    alot of hugs!!!!!
    maria

  5. #15
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    Welcome! Sometimes lupus is absolutely overwhelming. It is hard to be positive, and it is even harder to stay that way. Please know that this site is a wonderful place to find support, laughter, and understanding. We dont expect or care if you are positive or not because we have all been there. It is hard not to smile while here with these fun people. Hopefully, we will help bring positivity to your life. As for your friends that dont want to hear about your health, well maybe you should consider putting them in a different catergory in your life . . . accquaintances.
    A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!

  6. #16
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    Default thank you

    thank you for all the replies. This is a great site. It makes me feel so much better to be able to tak to people that know what you are going through. Thanks again for making me smile. Heres too a pain free week!!!

  7. #17
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    Default

    Hello Dmott,
    Welcome to the site. I have been on here for 2 weeks and already I have more answers than my doctor provided. Symptons others have or feelings. I totally understand what you are feeling and going through as does everyone else on here. Some days are better than others and the truth is we are not always positive or happy. Some of us post exactly what we are feeling and others try to be more supportive rather than negative. I try not to post negative things on here cause the world/people in it can be so mean and negative. I come to this site to find refuge and understanding. It is up to you how you want to be on here and know that no one judges you but reads and responds to you. I think the people on here UPLIFT and SUPPORT and for those days when we/you are just not feeling like going on/moving on/being strong/being positive...this is where you can assure that no one will ignore or brush you off.
    Don't EVER apologize for how or what you feel. I don't. Since being diagnosed with Lupus I think I am much more verbal about what I feel or how I feel to my co-workers/family/friends/x boyfriend. I am extremely graphic and let them know and I don't sugar coat anything.
    Be free to vent good/bad or indifferent.
    I hope you are doing and feeling better!

  8. #18
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    Default

    Yeaaay! You have had a pain free week?! That is awesome!!!!

    People who don't understand will sometimes think we are "feeling sorry for ourselves" or having a "pity party" when all we really need is to validated and acknowledged by SOMEONE.

    What this group has done for me is given me the forum to vent, be angry, question, without being dismissed or judged. Here we WILL be validated, acknowledged, and supported.

    It's not us against them, it is; if you haven't lived it, you could never understand this.

    I like how several here described it: we learn to live a new normal. Our moods, depressions, and overall outlook can be effected by lupus messing with our brain functions and often meds can help. Our own personal mental/spiritual challenges with lupus can be effected by how we formulate and accept our own new normals. (I confess I battle daily on this)

    I excitedly told my daughter in law yesterday that my new thyroid supplement has given me so much energy I have been able to do about 10 minutes of yard work a day! She looked at me with a blank look clueless as to what to think say or do lol...poor kid. Shortly later she insists I drive an hour and a half in terrible city traffic for mothers Day. HELLOOOOOOOOOOOOOOOOOOOOOOOO...have we met LOL?
    Ayah
    Believe in Tomorrow - Appreciate Today
    http://twitter.com/LupieAyah

  9. #19
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    hi ayah,

    i know exactly what you mean....last week, i was so excited because i had washed my car (can't remember the last time). Whenever I shared my excitement with anyone, there was always this awkward congratulations. But, I have not had anyone to respond by asking me to drive for 3 hours in city traffic....you are right, does she know you?
    Phyllis

    share a smile today

  10. #20
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    hi dmott.
    im ashley and im sixteen years old and have been diagnosed with SLE back in January of this year. i stay positive because i just look at the positive side of things. like, if i wouldn't have gone to the doctors to see what was wrong with me, back in december- i could have died. because i was in the very serious stage of lupus when i was admitted, i had fluid around my heart and lungs, my liver was enlarged, i was very very anemic and i was dropping pounds by the day.
    but now, im feeling great on the meds that i am on and i have a great team of doctors on my side, and my family and friends of course. if your friends aren't being positive towards you and if they don't help you manage your illness, just come on here and talk to us. trust me, everyone on here will put a smile on your face.
    you can't live life being depressed and lookin at the bad sides of things, you just have to be happy and think about the good things in life.
    please when you read this- reply to my page.
    i would love to talk to you about this.
    talk soon and take care!
    Ashley<3


    Quote Originally Posted by dmott View Post
    How does everyone stay so positive! I just started working again after losing my job of 16 years due to lupus. The lupus just gets me so depressed. I feel like it is not worth it to keep fighting. I only have two friends and one of them tells me to stop talking about being sick. She tells me that when I talk about it it brings the devil into my life. I am sorry but I feel so bad and dont have anyone to talk to. I have been reading alot of post and some of you are so positive and have a great outlook. How do you do it. Please help!
    I'm Not Crazy, I'm Just A Little Lupie!

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