View Full Version : I am soooo new to this site...HELP
03-12-2009, 02:19 PM
Hey...Im Cindi 23 yrs old and it will be 10 yrs in October since I have been diagnosed with Lupus....still dnt think that i have come to terms with it...find it still to this day to face facts that i cant do what i used to love doing....its hard to talk to family members or mates wen im feelin ill or down...so thought i would try this as my doc always tells me to talk to other lupus patients!!!
03-12-2009, 02:24 PM
Oh welcome Cindi ....you will see so many replies to this just you wait .
I am Angel.I have M.e and a few other things after a recent diagosis for Lupus was erm....well diagnosed too soon, before blood works.
We all understand the family and friends thing so dont worry now you are amongst friends. You ask away and we will all try and help you where we can.
Glad you found this thread. Sorry i did try and sort of show you but didnt suceed...foggy head :)
Anyway sending yoyu gentle hugs.
03-12-2009, 02:27 PM
Right in front of your screen to the right it says 'private messages' i have just sent you one.xxxxx
03-12-2009, 07:37 PM
welcome to the group....there are several young women here in their early 20s. So sorry that you have been living with this for so long. Please know that any of us will help anytime you need us. There are some very knowledgeable members who you will be able to get some very exact and helpful information.
anyway, welcome....glad you found us
03-12-2009, 08:53 PM
Welcome to our family forum. I have learned so much from others on this forum as well as support as we all know what each of us goes through on a daily basis.
I am so sorry to hear you were diagnosed so young!! That must have been very hard to deal with. I had a hard enough time at 39. I know what you are talking about not being able to do the things you used to. I think we will always miss the things we have done in the past. I have struggled with it and still do as I was an active and outdoors person; now 180 degrees later. I think we have to learn other hobbies to substitute for the things we can't do.
If you ever need anyone to talk to; we are here. Welcome and I hope you stay for a while.
03-13-2009, 03:02 AM
Hey....Thanx for the the messages they are sooo welcoming!!
Faith I am still finding it hard to deal with the fact that I cant participate in sports....I am studying Sports Science and Coaching and hope to be able to coach people with Lupus or similar disabilities....so that they can still be active in sports as I know if that i could still play a bit of sport it would make lupus alot easier for me to deal with.... would you know of any sort of sports clubs that are more suited for us....as i have been to many clubs but cant seem to either keep up with the normal clubs and the others are for either people in wheelchairs, hearing/visually impaired and have a learning difficulties!!! which i am finding really annoying at the moment and its really starting to get me down in the dumps!!!!
03-13-2009, 01:55 PM
some ideas for "light" sports include:
1. gentle yoga classes
2. local lupus foundation of american chapter...they might have some infor on that
3. I go to a gentle water exercise class
4. there might be some gentle dance classes
can't think of anything else, but wouldn't this be a great service for someone to organize....a way for us to find help with much needed physical activity.
i kind of giggle at the thought of all of us on a sports team. We would probably run to third base instead of first, we would have to substitute every 30 seconds because non of us can run for any longer, we would have to have medication time outs, we would probably forget what color our uniforms are, and cheer for the other team......:laugh:
oh well, makes for a smile today,
03-13-2009, 04:04 PM
What a visual, Phyllis! Thanks for the much needed grin today.
Oh, and welcome Cindi. You're in good company with us lupies!
03-13-2009, 06:25 PM
i am new at this site too.
just know that everyone on here is very welcoming and very helpful!!
&& its nice to finally have a place, where everyone understands what your going through, since i know that I dont personally know anyone else who has lupus...
i never even knew what lupus was until i was diagnosed with it to be honest!
anyways, just stopping by to say hello, and feel free to message me anytime you want to chat! :laugh:
03-13-2009, 06:27 PM
i forgot to add, that i dont let lupus take over my life.
i still am a cheerleader, through all of this!! i just know what my limits are and i know when i need to take a break, since you know we need alot of those hehe.
sick n tired
03-13-2009, 09:47 PM
Glad you found us...Welcome!!! :cute:Perhaps there are some sports that you can do...not full out at times, though.
Phyllis...:laugh: What a great laugh I had trying to imagine us all on a team...especially the forgetfullness and chearing for the other team.:laugh: