View Full Version : I'm a newbie.
04-07-2011, 02:00 PM
Hey, my name is Kayla. I just turned 15. About 2 months ago I started having extreme hip pains. So bad they'd wake me up in the middle of the night. So I waited a month to see if maybe I pulled a muscle or something. It was still the same so I finally told my mom about it. We went to the doctors and they drew blood, we figured I'd be anemic cause my mom is anemic.
Then the next week we went there they said I either have Lupus or the rhuematiod arthritis. Our specialist appoinment isn't until June. I don't think it's arthritis. Arthritis mainly is in the lower half of the body, sometimes the pain is just everywhere. It's like I constantly feel like I just did some huge workout. Then I was telling my boyfriend about how I felt so spaced out. Like I wasn't here. I told mom about it and thats how she found this place. She said it was brain fog. It keeps getting worse.
I'm kind of afraid getting these symptoms so young that I'm going to end up dying earlier. But then it doesn't really bother me.
I'm not the same either. I used to be all happy and outgoing. I still try to be but sometimes I just want to lay down and forget about everybody.
04-07-2011, 02:43 PM
Hey Kayla I'm glad that your mom found this site and that you've joined too =) I'm sorry to hear that you've been having such a hard time the past few months. I know how you feel. Lately especially with the feeling of being spaced out. Its the most aggravating thing right now and keeps me from getting anything done. I wouldn't worry about dying early, being diagnosed early in life just means you'll have to live with it longer =( I was 16 when I was diagnosed so I know how rough feeling sick all the sudden is. I also used to be happy and peppy and sometimes, even now, its hard to muster. You'll have good days and bad days but things will get better, especially once you know for sure what you have and are able to start medicine that will make you feel a lot better. Any time you need to talk I'm here to listen and I can answer questions =) Welcome to WHL!
Hi Kayla and welcome to WHL!! First off I want you to know that there is no way to know if you will end up dying earlier! With the right medications and learning about what things cause you to flare you could live to a ripe old age and not in constant pain! If you have to get Lupus or RA this is kind of a good time because for the first time in 50 years there are new medicines coming out!
Most of us found it helpful to have a place to talk where people really understood what we were going through. That is why they made this place. Saysusie and Conrad built this place so we wouldn't have to go through this on our own. We try to be more than just a forum. We are a family and you are now a part of that family. Please feel free to look through the old posts or start new ones. I look forward to getting to know you
04-07-2011, 06:42 PM
Brain fog is like my worst enemy. I feel bad when someone's telling me a story, and I just go off to I don't even know where. It just came out of nowhere. It's crazy. I can't wait to get on some medicine. Yesterday was actually a good day. I felt normal.
I just read an article recently about this new medication specifically made for lupus. It lasted good for awhile, but once it his 76 weeks the effects decreased on the body. :/ Thank you for making me feel so welcomed.
04-14-2011, 01:28 PM
Hi Kayla! Nice to meet you. Welcome to WHL. I am guessing that our new member Kayla'sMom is your mom? If so you have some good support there. As you can see you are far from alone on this site. There are several people, including Ritz, close to your age. Take a look around at all the forums and groups and feel free to jump feet in to any discussion. There's a whole thread on here in Laurie's Lounge about Brain Fog. If you read it, not only will you laugh till you cry, you will also probably recognize some of the crazy things we all do.
04-14-2011, 01:33 PM
You have deffinately found the right place for support,fun,listening whatever you feel like we are always here.I know its a scarey time and sorry you have been through so much already,but like Mari said with the right meds plenty of rest and lots of talking here all of it will help.Fog....yes i think we all have that here,someone talks to us we are away with the fairies thinking of something up there in space lol....i do it allot.Welcome and hope to chat soon.
lots of love
Is KaylasMom your mother? If so I am so happy that you have someone there to support you during this time. It is scary and there are tons of new things to learn but together ya'll can do it. We will be here for you as you go through this as well
05-17-2011, 01:43 PM
Welcome to WHL and it's nice to know your moms on here supporting you as well, that's the main concern besides we all supoorting one another, just join in with the threads mate and you'll soon know when we're going through bad days with the BRAIN itself, spelling mistakes left right and centre happen.
((Hugs Terri)) xxx
10-06-2011, 10:45 PM
Dont think that your going to die early. I know that there are plenty of people that got diagnosed with lupus that are teenagers and are now in college and have jobs. And when you start to get to learn about your sypmtoms a little more and know how to deal with them you are getting one step closer to having it under control. Always keep positive and do your best to stay with people and talk alot. I say that because when my sister is not talking to anyone she seems to progressively get into a worse mood as the evening goes on. But when i carry on a conversation with her she starts to light up and become all perky again. Welcome to WHL and i hope you stay a while and update us on how your doing!(BTW My sister was diagnosed with lupus about a year ago and im going off my experiences with her...)