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Thread: D-Day

  1. #1
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    Default D-Day

    Hi again,

    Although I have already been diagnosed with Lupus, I am still awaiting blood results to determine the medication I will be placed on.

    I have my hospital appointment on Tuesday, to determine the severity of the lupus, and which mediciation I will start to take.

    In some ways I am thankful for it coming around, and to be able to take a step forward in preventing the pain that I have suffered for years. But on the other hand it feels like D-Day to me.

    I am still 18, and want to enjoy my life. I am constantly tired (although hoping the medication will help this). But I also understand that I will not be able to drink anymore due to the steriods that I will start to take.

    I'm finding it hard to come to terms with the fact that I am going to have to change so many different aspects of my life. It has been hard so far - but I have managed to pull through.

    I have a wonderful, understanding boyfriend, and a few close friends who have stuck by me over the last few months. But I have felt almost ashamed to tell the majority of my friendship group what I am going through, they just presume I don't want to go out, and my close friends regularly make excuses for me. Although they have stood by me I feel things may change over the next few months, and I don't know if I am ready for these changes.

    Sorry about the moan, but I'm not sure who to talk to as my boyfriend (who i normally talk to) just complains that he is doing his best, and to stop talking down about myself.

    I am just looking for some friendship and someone to talk to through these times. Any advice from anyone in similar situations would be amazing.

    Please help me
    Annie x

  2. #2
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    Default hi

    Oh Annie, we will all support you.I so understand what you wrote.I hope they give you the meds and you feel them helping you.I know you are 18 and you are scared of the future.But please just take it one day at a time.You have a wonderful boyfriend and now many many friends on here who will all be here for you.
    Friends,well,in my experience they all nearly dissapeared.I sometimes hear from them,every now n again.But you know what,im glad now,sad but glad they are not here.I realised they were not what i thought they were....even though i bet they think they are good friends.Where are they now? But this doesnt mean all people with friends experience the same.You may be surprised and they stay there for you.If not,you can make new friends.We are here no matter what.
    You are NOT moaning at all.Its so difficult to know what the future will bring,to change after living healthy.But it also doesnt mean its the end....look at it as a new beginning.New meds to help your pain,new friends here to chat to who fully understand and will not judge you.
    So welcome....and keep posting.xxxxxxx
    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

  3. #3
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    Default

    Welcome! I am so sorry you have to go through this at such a young age. I started getting sick when I was 21. I also had a hard time at that point because my friends still wanted to go out a party and my body just could not handle it. I suggest you do something with your friend on your own terms. Ask them over for a girls night and a slumber party. You can choose a series on tv to rent a h movie marathon! My best friend used to this when I was to sick to get out of bed. We watched the entire series of Sex in the City. It was a blast! You could also have game night at your house. This way you can be as comfortable as you can. Certain friends will come into our lives and go. Remember everyone comes into our lives for a reason and they may stay forever or leave after a period of time. The ones who stay are the friends you keep close to you and cherish. It is tough all around at times but it does get a bit easier to deal with. Just hang in there and hopefully you will get the medicine that is needed in order to make you comfortable. Keep us posted and remember that we are all here for you no mater what is going on in your life. There is so much support and unconditional love here!

    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  4. #4
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    Default

    Welcome to our site.
    You can first of all do whatever you want in moderation, you know your body the best occasionally drinking won't hurt you endless you have other issues. i can't speak for everyone but i have a glass of wine here and there and drink beer with my crabs and pizza. i don't have to take the steriods for now told dr. didn't want them yet will deal with it for now, but again thats what works for me.

    friends who love you for who you are will understand that you can't go out every nite, mind do. we get together at someone house instead that way if i want to come over in my sweats i can don't have to worry how i look with them. i don't rsvp to anything and they know that if i am there great but if not there ok, and i don't go to anything they have to pay for food or tickets just in case feel like crap that day.

    sounds like your boyfriend is understanding and that is great, just remember to communicate with him about everything so he gets the whole picture.

    you will meet all kinds of people here and make new friends here that understand how you feel.

    nice to meet you.
    Keep Smiling

  5. #5
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    Default

    Annie ,


    I know exactly waht u are going through, I was diagnosed with Lupus when I was 17. I used to want to drink and do all the stuff normal teenagers did, and for the most part i did. Lupus isnt the end of your life or social life although there are times when it feels that way. Things will get better, trust me. Stay positive and things will all work out soon.

    Love Chriss!
    Live, love, and most importantly be grateful!!

  6. #6
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    Default

    Hey Annie,
    I was diagnosed when i was 19, i understand what you are going through...
    Its so hard when everyone elses biggest problem is what they are going to wear the next night...i wish that was my biggest problem...
    I dont really think things have gotten that mich better for me yet, but i havent bee diagnosed that long...im positive that it will get better and when the right medications are sorted out everything will start to look up.
    As for the drinking, i still drank while i was on the prednisolone, just a glass or 2 of wine maybe 1-2 nights a week...not asa much as i used to, but i still enjoy it...You dont have to stop everything...
    Good luck xxxx
    *~* Monique *~*

  7. #7
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    Default

    hi, my name is maria about the predsione asked your doctor is you really need them . i don't take predsione becuase i started and the doc. didn't really help the only thing he said was take this and this and you well feek better i have a diffrent doctor ,she explain about the med. it was my choice if i what to take it or not .read on predsione before you take it

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