View Full Version : Hey there...

07-31-2009, 08:07 PM
Hello, I'm new here, ummm, and really not sure what to say. I guess I can kinda start with my history. I am a 16 year old girl, who might be suffering from lupus. The doctors aren't sure, but they say it is more than likely. It all started when I was born, i had a respitory infection , i began getting oral ulcers and infections in my fingers when i was two, after that i had multiple infections in all different systems of my body i had a positive ana of 1:160 which changed to 1: 640 within a short amount of time. I had increased thirst and slept more than the average child my age. I was on antibiotics, and they weren't sure what was wrong, but suddenly, when i was three, all symptoms dissapeared. Up untill recently we had no thoughts about it. I have regularly had the "butterfly rash" which I had mistaken for sunburn, in the last two years. All my life I have run fevers and I am often so sick that I cannot go to school. In my last quarter of school, we were doing the track unit, every day we ran atleast two miles. I have never been the best at PE and I figured that was why my joints hurt. One day, it got worse, to the point where I could barely run the laps, then my teacher forced me to do long jump and triple jump, it felt like someone was splintering my bones, and shoving up into the muscle, or like lightening was being shot through my legs. I couldn't walk, the pain was the worse I have ever experienced in my 16 years of life. I am still constantly thirsty, and sleep more than most teenagers. I am tired, and wear out easy, and i have headaches and severe joint and muscle pain.

I am going to the childrens hospital at Stanford in less than a week.

Honestly, I'm afraid.

07-31-2009, 08:52 PM
Don't be scared. We are here to hold your hand and help you and listen. There is also a teen forum on here where you will find others around your age who are experiencing these things too. Keep us posted about what happens at the hospital. :yes:

07-31-2009, 08:57 PM
Hi Jewleeuh, welcome to the site and don't be afraid. Good luck with everything at the hospital :cute:

08-01-2009, 09:56 AM
Hi Jewleeuh,

I'm Rob, I'm 41 and was diagnosed with Systemic Lupus nearly 6 years ago. I know how you are feeling right now. I know you are scared, I can understand that, I really can. If you do indeed have lupus, you can control it, manage it, and have a great life despite it. It's not set in stone that you will always feel as run down, and hurt as much as you are right now. With lifestyle changes and proper meds, many people really feel good again, and even some go into remission. There's always someone here, if you are scared, and need to talk, don't hesitate. Welcome to our group, and please make yourself at home!


P.S. If you are up late and worried, the Arcade here can be good for getting your mind off of things-be careful though, it can be addictive!

Angel Oliver
08-01-2009, 10:38 AM
Hello and welcome my friend.Im sorry to read about your pain and fatigue and the stress you are going through.Please know we are all here for you and will help you through this difficult time.I am Amanda aged 39 and love my chocolate and my little dog n cats. I am also being tested for Lupus like you. I am glad you have an appointment at the hospital they will look after you and help you with meds and tests.We are always here for a chat n a giggle and any advice you need. Just rest when you need too,which is allot for me also.When you feel you can do something,just take your time.Let us all know how the appointment goes.You are not alone.

Love n hugs Amanda.xxxxxx

08-02-2009, 08:57 AM
I know this is a frightening time for you. Hang in there. You need answers, and it sounds like you will be getting some, hopefully soon.

In the meantime, we are here for you. Please keep us posted.


08-02-2009, 01:21 PM
hi jeweleeuh,

i believe that if someone had tried to make me do the things that your PE teacher made you do, i would probably been suspended for decking the teacher.....you were so brave to complete those tasks that caused you such pain....i am sorry that you had to experience this.

i am glad that you are going to Stanford....i feel sure that they will be able to help you, get necessary testing completed, and get you started on treatment options.

i am also glad that you found us....this is truly a great group of people who are always ready to listen, advise, and sometimes send cyber hugs. Please make yourself at home, you can really learn a lot about living with lupus from the experienced members that we have.

best of luck to you, let us know what the drs. at Stanford say.

08-02-2009, 02:02 PM
Thakn you so much :D
I'm glad i could find support somewherejcg196
Thank you :]rob
Its always nice to know there is a helping hand close by
Thank you so much
By the way I did indeed try the arcade
I found out Mahjong is addictiveAngel Oliver
:D and to you too, thank you sooo much, your support is much appreciated.Pearl
I'm hanging on, I just keep trying to look for the bright side of things, and with everyone on this site, it makes it even easiermountaindreamer
It was really tough, for the next week after that, it felt like i was walking on splinters
I thought i was just a sissy, until i went to the doctors and they told me it was abnormal
Thanks for your support :D
Thank you all soooooo much. I am so glad I could find this place. I can already feel the warm supporty feeling coming from you all (If that makes any sense at all haha) I can't thank you enough for just being here for me, for the longest time I felt so alone in all the pain and fatigue, and now that I know there are others, it takes alot of weight off my chest. It means alot to me that you guys have taken the time to tell me your thoughts and show your support. I hope I can get to know some of you, because, I am trying to be positive about this and look at the bright side, and I know a friends always help.
I will make sure to keep you all updated ^_^
I'm leaving tomorrow morning
And I should have the results in a few weeks
Or however long test results take
And I may not know much about lupus at the moment
But if anyone needs me I am ALWAYS here for you
Don't be afraid to send me a message
I swear I don't bite :D
And i loveeeeeee people and making friends :]

08-03-2009, 04:27 AM
And I have decided writing blogs on this site is going to become my new favorite thing to do :]
Thank you all for inspiring me with your support,
I wrote something, that I know, atleast some of you, will be proud of.