View Full Version : I have just been diagnosed and I am scared

05-03-2005, 09:19 AM
Hello all,

My name is Lynette and I am a 19 year old Chinese American female that has just been diagnosed with Systemic Lupus. In my case my Lupus effects my kidneys and blood. I am currently on predisone and I just wanted to express that i am new and that i never knew that something like this could happen to me. Does anyone have any helpful advice? Thanks bunches :)

05-03-2005, 02:09 PM
Hi Lynette

Please read my topic on Diet and Prednisone. I was diagnosed 1 month ago.

When we find out we are scared and frightend. You are allowed to feel this way as it is a shock and you think how and why has this happenend to me?

Once you get over this stage, you need to fight and be positive. Remember don't let the disease contol you, you control the disease so you can lead a normal life!

This is wonderful forum to help each other and I am here to support you where I have information. Ask and post any questions you have.

What is your doctor called who is treating you? My first doctor was not good and this is why I am asking you.

Have you bought any books on the topic? I have 2 books Lupus Q&A - Everything you Need to know by Robert G Lahita MD and Robert H Phillips.

Lupus you can take charge of it by Victoria Scanlan Stefanakos.

Remember when you read these books you might get down but you need to know what to expect from Lupus. Just read a bit at a time. When I first read it, I use to get down but I want to know as much as possible so I know what to look out for and to try and control it. You are allowed to feel down but take it 1 day at a time.

I hope you have family to support you and friends!

Remember you can fight this thing and don't let it control you! You are 19 so you are young you have the rest of your life ahead of you.

Take care I wish you well.

06-16-2005, 02:57 PM
Hello everyone, my name's Omeee and I've recently been diagnosed with SLE. It kinda just happened out of the blue for me, one minute I was a 23 yr old, working 9-5 without a care in the world, the next, a patient so stiff, I couldn't even brush my own hair! (Even now just typing this I'm getting cramp in my hands) I don't quite understand what's happening to me but I'm not going to let it control me. I have to go to hospital every 2 weeks for treatment and then 10 days after that for my blood to be checked but hey that's my life for now. The lupus has affected my lungs and kidneys and I have a small amount of fluid around my heart now aswell which the doctors are monitoring. I haven't really had time to get depressed cos it all seems to have happened all at once (I'm still in shock) but having suffered from depression as a teenager, I'm aware that I could slip back under. I don't feel scared because I can feel what's happening inside my body but I do feel confused, I'm the only one in my family with this and they seem to have a harder time dealing with it than I do. I just want to chat to someone who understands, not so much about the physical pain (cos I'm coping with that, just about) but the mental stress that I can feel building up around me. Can anyone relate?

06-16-2005, 03:23 PM
Lynette, I'm new aswell so I know what you're going through. I don't really know what kind of advice you need but I do know not to believe the hype, you've just got to learn to listen to your body. (No-one knows you better than you). We've all been diagnosed with lupus yet none of us will have the same symptoms, it's weird how it affects us differently. I also take prednisolone plus a load of other drugs to go along with cyclophosamide treatment that I have every 2 weeks. I'm young too (well a little older than you at 23) If you want to chat to someone who's just as confused as you, I'm here to listen. Take care of yourself

06-16-2005, 04:39 PM
I'm not to bad off personally yet. I'm unemployed and afraid of trying to work. I have a distrust of the medical/ pharmaceutical industry and I'm poor now, so I haven't gone for diagnosis and would refuse treatment anyway. Currently I've changed my diet so that most of my protein is from fish with scales/ fins. I've read that fish helps with the pain a bit, and has always been touted as healthy, especially this kind. I also like hot spicy food, and capsaicin also helps with the pain. As in another thread on itching, I'm using urine skin therapy for the itching and rash. I've had to learn my joint limits, and think that maybe there is a diet to put this into remission. I'm not sure, and I plan to research a bit more, but I think the morning stiffness was alleviated by drinking a few beers the night before. The beer definetly helped me relax afer helping out at a teen hang as well. Not sure why it "might" have helped, but maybe it kept me restless in my sleep so my ankles didn't have the opportunity to stiffen, or because I usually wake up earlier after it. I've personally had nightmare experiences with vioxx, and naproxyn. Be very careful what you take.

06-17-2005, 12:26 PM
Hi Linette and everyone....I had been searching for a diagnosis for 2 1/2 years after having had a stroke with sed rate of 99. When doc told me 2 months ago what I had, I just sat on the examining table with my mouth open! Immediately I was afraid, but he just smiled and told me not to be. Easy enough for him to say, right? :shock: Well I did just what has already been recommended to you, and that is too read everything I could get my hands on. I found the most helpful to be "Lupus, You can take charge of it" by Victoria Stefanakos. I know you can find it at Barnes and Noble. It has lots of good suggestions and helpful hints, it is now my handbook. 8) Take care of yourself.

06-20-2005, 04:39 AM
I was diagnosed ten years ago, also with lupus in my kidneys (i was 15 at the time) It was a terribly scary experience , especially bcos no-one knew what ia was goin through, cos no-one in my family had it. I did'nt even know waht to expect from it.

So i know what it is u are going through!! Right know i am a qualified baker and finishing my degree in computer science!! So i know u can take charge of lupus and u will succeed. Just Don't lose heart.

Keep up the fight.

Peace and Blessings.

Feel free to mail me anytime u need someone to talk to.

07-06-2005, 07:44 AM
Hi all

I have returned to the UK after being diagnosed Lupus in New York at 40. I was made redundant on top of my illness. I am finding it hard to find a support group in Brighton, East Sussex, UK. If any one know's of one, please can you contact me. It would be nice to meet people rather then emails.

I wish you well.