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  1. #1
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    Default Not Playing

    Im not playing this Lupus game today! Its my life and I should have choices! I used to have choices but now everyone else seems to have their say in what I do. If it isnt Dr's telling me what I must wear, where I am allowed to go, when I must eat so I can take the tablets they tell me I must take. It is my family, who I used to call every few days, now call me everyday to get a full health check, dont believe me if I say I am ok, go into full panic mode if I say I feel ill. Or my friends who complain at me for doing too much and then nagging that I dont see them more often. Or work being concerned about whether I am still able to work like I did before.
    If that wasnt bad enough all of a sudden my immune system decides it hates me and doesnt want me to have any fun! The last 2 holidays (vacations for you americans out there) I have ended up in hospital because of it. I am supposed to be going away this weekend but my body hurts and the pain from the pluersy is making every breath exhausting.
    Then we have the side effects from the drugs! The Steriods have made me gain 11kg (22 lbs!) since Easter!!! Yeah I know they keep me alive but I will be single forever if I get any fatter!!!!



    So today I have decided I am not playing! I am going to pretend I dont have Lupus. I have not put sun screen on. I have not eaten. I have not taken any tablets. I am not gonna rest. I am gonna wear silly high shoes. I am gonna pretend that I am a normal girl in her mid twentys!

    Yes I know this isnt wise but I have been doing all the right things and I still get sick so today Im not gonna!

  2. #2
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    Oh KTJ I understand how you feel. I was diagnosed with this disease at age 11, I'm now 27, and I know how you want to feel normal. It was so hard growing up not being able to go out to the pools with all my friends in the middle of the afternoon because there was no shade. My family has always been on top of me and how I am feeling. My mom calls me everyday, and while I love her it gets annoying because it's always, how are you feeling, did you call the doctor about this or that. I'm 27 and married and I just want to be left alone by her sometimes. Oh and the weight gain from the steroids. I've gained 25 lbs since being on them since January and it brings some depressing days. I use to be able to eat anything I wanted and now while I'm not gaining any more weight I'm having trouble getting rid of what is now there. I was pretty upset last night about my weight and my husband told me to stop focusing on that and enjoy life because I am feeling better and things could be worse for me than they are. And he is absolutely right, but still it can be hard. But acting like we don't have lupus can get us in trouble and I know that. I have not always been the best at taking my meds (especially when I had been in remission for so long) that I started feeling I wasn't sick. But once I got married, moved away, started my first job as a nurse on night shift and had to deal with my father almost being sent to Iraq with the U.S. Army the combo of not taking my meds everyday and stress took it's toll and sent me into a flare. So I went from one medication (prednisone) to at least 10. And I will be honest unless I am going to the beach I don't wear sunscreen nor a hat everyday. But I do limit my exposure to the sun only when I am in the car or walking into a store. I don't hang out in it.
    But I want to let you know that I hope you will be safe and think about being in denial even if just for one day about not having lupus and not taking your meds. We all want you to get and stay healthy because we all can relate to what you are going through. :lol:

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    Hi KTJ! I know the stuff I'm SUPPOSED to tell you (the take care of yourself, be careful to take your meds, etc. etc...) But I can tell by the sound of your post that you just need someone to agree with you - so I will! You go on and wear them silly shoes, and take a "holiday" from lupus for one day! Mental health is just as important as physical health and if you feel that strongly about it, then so be it! (Please, within reason though - LOL!) Maybe a compromise - Take your meds and still wear silly shoes and have a blast! I hope tomorrow is a better day for you. I think, above all, lupus is FRUSTRATING! See ya!

    Mitch

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    Thanks so much for your kind replys! It is so weird to have people out there who understand! I feel all warm and fuzzy!

    Just to let you know I stopped being quite so stubbourn and actually took all 16 tablets I should take at about 7pm when the pain was getting to me as well as starting to think logically that I might end up iller if I didnt take them.

    And today I am feeling ok about all this Lupus stuff again. Yeah, I dont want it but I have it. Things could be a lot worse. My body might not be as hot as it used to be but my mind is just as great (Modesty has always been my strong point!!!) and I think having to work around so many obstacles is actually helping me to be a lot wiser than many people my age.

    Who knows how I will feel tomorrow but today lifes cool again!
    8)

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    I wanna know..did you strut you stuff in them silly high shoes? I do hope that you did! Yes, once in a while, we all need to just scream as loud as we can "I'm mad as hell and I'm not gonna take this any more!" (lol, I'm sure many of you recognize that). As everyone told you, it is OK to be contrary once in a while (within reasonable limits..don't put your health at risk) and just do something wild, crazy and different.
    I am so happy that you are feeling better today, I hope that you can stay that way for a while. I wish you the very best :lol:

    Peace and Blessings
    Saysusie

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