Results 1 to 6 of 6

Thread: hi, new to site

  1. #1
    Join Date
    Dec 2005
    Posts
    5
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default hi, new to site

    I hope I am doing this right. I am from a very small town in nevada. Medical care is 4 hours away. I was diagnosed with Lupus and Sjorgens syndrome in May of this year. It has been devastating to me and my family. We have to travel every other week for doctors. no one I know knows anything about lupus and they don't understand. I have 3 children and it is very hard at this point raising them. It is hard not to be depressed. I keep getting more and more medical tests run on me and it is so scary. I am having a hyperventalating breathing problem, any suggestions. I have a feeling its stress causing it, I hope so because I'm afraid to get any more bad news. thanks for listening

  2. #2
    Join Date
    Mar 2005
    Location
    Tallahassee
    Posts
    231
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Welcome! I'm sorry you are having a rough time. It probably is stress on the breathing problems, and you are right it IS hard not to get majorly depressed with this. Just try to rest and relax as best you can. 4 hours for medical care? YIKES. It's bad enough when you are in your town I hope they figure out a course of action for you soon and get all the preliminary testing over with, so you can have some semblance of a normal life. {{HUG}} You've come to a great site for support and information.
    Not sure how old your children are but I highly recommend games. We have collected quite the library of board and card games because it is something I can lay down and rest but still play and spend time with my 7 year old. {{HUG}} Good luck!

  3. #3
    Join Date
    Dec 2005
    Location
    Nebraska
    Posts
    42
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Welcome Shan:

    I hope that you can get all of your testing done and get on your way to recovering from some of the symptoms you are having now!!!

    Best wishes to you and your family!!!
    ~*~Shannon~*~

    "And in the end, it's not the years in your life that count. It's the life in your years."
    -Abraham Lincoln

  4. #4
    Join Date
    Jul 2005
    Location
    Iowa
    Posts
    143
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Welcome. You have found a great place where you will get a lot of support and information. I can relate to living in a small town. I live in southern Iowa and have to travel over an hour to see any specialists in Des Moines. I have 2 kids (eight and four) and went through terrible guilt for a long time about feeling too sick to do much with them. I've been sick for a little over 2 years and am slowly adjusting to it, although I still go through times when I feel depressed about all that has changed and everything I've had to give up since I've gotten sick. I have learned to be with my kids in a different way now such as cuddling in bed or on the couch or reading or drawing together.

    I know how hard it can be to try to deal with being sick and all that goes along with it and it can be very scary too. I hope you have a good doctor that you feel comfortable with - that can make a big difference. ANy questions or worries or frustrations you have, feel free to post them here. You are among people who truly understand what you are going through. It's really hard for people who don't have lupus to relate. Take care and I'm glad you decided to post here.

  5. #5
    Join Date
    Dec 2005
    Posts
    5
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    JUST WANTED TO THANK ALL OF YOU WHO REPLIED. IT WILL BE A GREAT HELP TO ME TO BE ON THIS SITE. I HAVE BEEN READING ALL YOUR FORUMS AND I AM INSPIRED BY ALL OF YOU. I AM LUCKY BECAUSE I HAVE A WONDERFUL HUSBAND WHO HELPS ME SO MUCH AND I KNOW HOW HARD THIS IS FOR HIM. MY KIDS ARE 12, 5,AND 3. I JUST HOPE I GET THE CHANCE TO RAISE THEM. SOMETIMES I FEEL SO BAD THAT IT SEEMS LIKE I WILL DIE SOON, BUT READING SOME OF YOU GUYS GIVES ME SOME HOPE FOR THE FUTURE. WOMEN FROM MY CHURCH HAVE REALLY HELPED ME. I THOUGHT THAT I HAD NO FRIENDS ANYMORE. MOST PEOPLE FIND IT TO HARD TO DEAL WITH SOMEONE WHO IS ILL, BUT THE WOMEN FROM MY CHURCH HAVE REALLY SHOWN ME LOVE FOR OTHERS. I HOPE I CAN ONLY DO THE SAME FOR SOMEONE ELSE. THANKS SO MUCH AGAIN FOR LISTENING!

  6. #6
    Join Date
    Oct 2004
    Location
    Illinois
    Posts
    955
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Shan, it sounds like you're finding local support and also our support here. Keep reading and learning as well - go to lupus.org and other wonderful sites to learn. that will hlep those docs help you - and help you help yourself.

    Lupus doesn't have to be a death sentence. Most of us live relatively normal lives, and just as long as those without lupus. Granted, we may move a bit slower, smell the roses and enjoy the breeze on our faces because of it. (but wear a hat with a wide brim so you avoid the sun!)

    Hugs of welcome, dear!

Posting Permissions

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