Results 1 to 10 of 13

Thread: This is hard

Hybrid View

  1. #1
    Join Date
    Sep 2011
    Posts
    7
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default This is hard

    Hey everyone.. Let me introduce myself... everyone calls me marv... so thats what i will go by here... im 26 and male.... and i was diagnosed with SLE 2 years ago... but have not had any kind of support since then.. It is hard because I am in a very small minority of individuals with lupus.. ( young and male).... I guess I just needed some other people who can understand what I'm going through to talk to... Thanks

  2. #2
    Join Date
    Aug 2011
    Location
    CoMO
    Posts
    9
    Thanks
    13
    Thanked 2 Times in 2 Posts

    Default

    Hello Marv, & welcome to WHL. I just started on this forum and already I fill like I'm able to talk to ppl that either have lupus or know someone that is living with lupus. As far as support Im sorry u haven't had any, but since u joined this forum, immediately U will have more support than u thought u could ever have. Also ppl are understanding and helpful. Living with lupus & being diagnosed @ a young age can be difficult too grasp but there is hope despite all the obstacles U face. One again welcome (*^_^*)

  3. #3
    Join Date
    Sep 2011
    Posts
    7
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    i guess what makes it difficult is that being so young, i have not fully grasped the idea of being chronically ill... In my mind I am still indestructable... like most guys my age think... but my body tells a different story... the aches and pains never end.. and the constant fatigue is very hard to deal with... and thanks for the welcome

  4. #4
    Join Date
    Dec 2010
    Location
    Perth, Western Australia
    Posts
    92
    Blog Entries
    2
    Thanks
    3
    Thanked 34 Times in 21 Posts

    Default

    Hi Marv,
    Welcome!! I am sort of in the same boat as you, as far as being young and struggling with the reality of a chronic illness. I was diagnosed last year at 24 and one of the hardest things i still find is slowing down in my life to make sure i dont get sick again. I definitely feel it the next day after a hard night, so i've had to limit the number of hard nights these days!!
    You'll find so many people around here that will give you all the support you could need!
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

  5. #5
    Join Date
    Jun 2011
    Location
    Indiana, USA
    Posts
    288
    Blog Entries
    1
    Thanks
    73
    Thanked 113 Times in 86 Posts

    Default

    Hey Marv (:
    While I'm not dealing with being a male with Lupus, I am dealing with being young and living with a chronic illness - younger than you even. We have other members on our forum who are teenagers, trying to deal with all of this, and it's very hard. We also have some men here, too. Just no male young folks, hehe, sorry.
    It's a hard battle, to beginning to accept all of this. That your life wont ever be exactly the same as it has been, or maybe as you dreamed it would be. (I'm sure you never dreamed of having a chronic illness, hehe). We're all here to talk and help you through. It's important that you get the support you need and deserve, because you do need and deserve it. And it is oh so helpful, especially in hard times.

    So, anyhow, welcome to the forum. (: Feel free to join in on any conversations you'd like, and to talk, rant, let it all out, when you need to. We're here to listen and support you. We may not know exactly what it's like to be you, but we do know what it's like to be chronically ill, and that helps. The rest we make up for in hugs and laughter.
    Best.
    One day at a time, one breath at a time... We can get through this.

  6. #6
    Join Date
    Jul 2011
    Location
    suburban chicago
    Posts
    342
    Thanks
    232
    Thanked 121 Times in 96 Posts

    Default

    Hello Marv-
    I too am a man with lupus-welcome to the fraternity!
    I definetly understand the indestructible part-I'm 50 and still think/sometimes act like i'm still in high school. lol

    It does take a while to understand your limitations and I have found in many ways now that I am diagnosed and under doctors regular care and have been taking meds regularly that I am doing much better.

    Are you a chef ?-just curious

  7. #7
    Join Date
    Sep 2011
    Posts
    7
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Quote Originally Posted by n.mac View Post
    Hello Marv-


    Are you a chef ?-just curious
    Yes Im a chef. Cooking is my passion in life. The fr=irst time i cooked a meal I fell in love with it and never looked back.. im also an up and coming pharmacist. I am currently waitin for a school to accept me and continue my education. One other little quick fact about me.. I do not live in the United states... I live in the Caribbean.


    and as for Elo... no this is not exactly what i deam of or what i dreamt of when i was younger... In fact its wayyyyyyy offf.... Who ever is in charge of making a dream into reality really blew it this time lol....

    Thanks for all the welcomes... already i fell 100x better thn i did lastnight.... im not alone anymore.. thanks
    Last edited by chef marv; 09-15-2011 at 09:03 AM.

  8. #8
    Join Date
    Apr 2009
    Location
    Kentucky
    Posts
    1,165
    Thanks
    234
    Thanked 143 Times in 105 Posts

    Default

    There are some guys on here and occasionally a few younger guys get on but only when they aren't feeling the best. I was diagnosed 2 years ago when I was 16. Being young and sick sucks. Your not alone =) This is a wonderful place and I feel like everyone here understands and they are always there for you when you need them.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  9. #9
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,526
    Thanks
    1,548
    Thanked 1,743 Times in 1,212 Posts

    Default

    Hi and welcome to WHL! I know that this is difficult to have to deal with at any age but, for a young person, it must be even harder. The only thing that I want to say is that your life isn't over. Changed yes. Over no.

    If you get a chance talk to Rob. He is a male with Lupus and, like you, thought his life and dreams were over. He couldn't fly anymore and he had to close his company down. I know those were very difficult things to do. So, wanna know what he did? He changed the dream and now is racing cars!! Try not to be discouraged.
    Dreams change but they don't have to die.

    Welcome to our WHL family! We are so glad to have you and I look forward to getting to know you better
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •