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rhianpalmerrhianpalmer Posts: 6
edited 12. May 2011, 16:42 in Young people's community
Hello everyone,
i am 17 years old and i have been diagnosed with lupus in my feet, knees and hips in both legs. i have only known for 7 weeks now and i am still getting test done. I have had a lot of trouble with it. i have been in a wheel chair because of it for 4 weeks. All my friends at school know but they don't know what it is like. At first they thought it was funny about the whole wheel chair thing as the didn't know about my problem. i live in Spain so the health care is a lot different compared to england but as far as i can they are amazing. When ever i have problems they take me for testing within a couple of weeks to see the specialist. When i got told that i had lupus i felt like i was the only person in the world that ever got told that. i felt so low that day. But my best friend has been great she has helped me out so much just been there to talk to and to make me laugh on my bad days. lately i have had a lot of bad days so there should be a good day coming up shouldn't there? if anyone has and advise then that would be great as im still in shock and dont know how to take it.

Thankyou! x

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Rhian :smile:

    Welcome to the forum. I am one of the oldies on here but saw your posting and that you had just joined. I do hope that you will find the forum of benefit, for many of us it is a lifeline, sharing good and bad with others that know where we are coming from. Sometimes this zone is a little quiet, the Living with Arthritis and Chitchat zone are usually fairly busy with people calling in.

    It is good to hear that you are getting good treatment in Spain. It is also great to hear that you have a good friend who listens and makes you laugh. Laughing is a brill medicine. Having one good friend is better than having many mediocre friends, don't you think?

    I have osteo arthritis (OA) so another kind of arthritis. Perhaps it may be a good idea if you post a message on the Helplines zone and ask them any questions you may have. They may be able to send you some literature if you feel that would be of help. You could also phone them but that may be expensive, as you live abroad.

    We all have our good, bad and utterly horrenduous days, that is how arthritis affects us, it can be so changeable, can't it? :roll: The idea seems to be to pace oneself but this is extremely difficult to do, isn't it? On a good day we do not wish to waste a moment and then we may suffer for it the next day or day after. :roll:

    Anyway, I have waffled on enough,

    Look after yourself,

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • rhianpalmerrhianpalmer Posts: 6
    edited 30. Nov -1, 00:00
    Hello Elna :grin:

    Thank you for welcoming me to forum, i do find it helpful as i didn't know there was some many people my age with lupus or arthritis till i joined. oh right i will have to cheak them out :smile:

    Yeah the treatment in Spain is really good and fast when you really need it.
    It is great having a good friend that you can talk to about anything and i do agree with what you say better to have one good friend then having a load of friends that you cant talk to.

    Oh right what is that like ? Yeah i will have to repost this on there. I would ring up but like you said it is probably really expensive as i live in Spain.

    Yeah today has been a lot better then it has been in a while. Yeah i have to pace my self a lot. I think its hard for me as i used to do horse ridding and i had to stop. But my mum said when i have a good day i can go and have a lesson. she just doesn't want me to hurt my self as my mum worries a lot.

    It doesn't matter it has helped a lot thank you for replying. I will do and you look after your self.

    Rhian x
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi again Rhian :grin:

    Yes, we mum's do worry a lot about our kiddies. Why not? Mine are now 30 and 32 but I still worry about them, when they are going through bad times, for whatever reason. My youngest, :lol: just turned 30 :lol: is a daddy now and I have a lovely, nearly three year old grandaughter. I remember well their teenage years though, sometimes not so good, but mostly OK!

    I am so pleased to hear that today has been a better day for you. You stick with your good friend. You are lucky to have her. I hope you tell her that sometimes. :smile: I also hope that you can continue with the horse-riding on your better days. :smile:

    You take care,
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • SaitenMarSaitenMar Posts: 24
    edited 30. Nov -1, 00:00
    Welcome Rhian,

    I to was told at one point when being diagnosed all those years ago that I had lupus, my reaction was more confusion at not knowing what lupus was. Eventually though I was diagnosed with rheumatoid arthritis (apparently symptoms are similar). It's difficult, growing up is hard enough as it is without a disease like lupus affecting you. You are lucky to have such a caring friend.

    It's difficult for people to understand, so you shouldn't get to upset when your other friends don't really understand what is happening to you. Try informing them with information or describing what your going through. That's the advice I'd give anyway.

    I agree with elnafinn, don't be afraid to ask questions. After all the wonderful individuals of this forum are probably going through the same things you are and feeling the same way you am. You can never ask enough questions! :smile: Pacing yourself is key with lupus and arthritis, there are days when you feel reasonably okay and try to fit in as much as you can without realising the affects it can have on you the next day or so.

    One lesson I'm learning is to not be ashamed of your condition. I spent a good four, five years ashamed of arthritis and what people thought of me. Might sound cheesy, but be happy with yourself and your body will feel the benefits.

    Again, Welcome.
    Joseph.
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