View Full Version : Just diagnosed . .

06-19-2009, 02:50 PM

I was diagnosed with SLE about 3months ago, and I am still struggling to come to terms with it. Although the medication is helping, I am still getting bad flare ups the majorty of the time. I am 18, and want to be going out clubbing and enjoying life like my friends do instead of sitting at home in pain, or too tired to go out. I am also struggling to coming to terms with the diagnosis, despite support from friends and family, I still feel like I am alone.

Does anyone have any tips on dealing with lupus?? As I'm really struggling at the moment.

Annie x

06-19-2009, 08:28 PM
Hi Annie,
Im sort of im the same boat as you...im nearly 20, and i was diagnosed about a month ago. It is really hard to deal with, especially at our age when we want to be going out and having fun, just doing normal things....
Sorry, i cant really help with any tips, im still going through the 'acceptance' stage i guess you would call it, but if you want to talk i am more than happy :)

06-20-2009, 01:24 AM
Hi girls!

I was diagnosed shortly after I turned 22. I had a hard time because I was unable to go out and do things with all my friends. It was hard and I lost some friends. The good ones stuck it out with me. They came to me and made sure I had a good time even when I was stuck in bed. I feel very lucky for those friends. I just turned 30 and let me tell you, this to shall pass. Life will go on and it will get easier and easier to accept it.

I do have some suggestions for you to grasp what is goin
g on with your body and your life:

First, you may want to go and talk to a professional about your Lupus. I found someone who specializes in chronic illnesses and she was amazing! We addressed everything from dealing with pain, family and the complications of taking so much medicine. It really helped me and it gave me tools to use through out my life. I saw her for about a year.

Second, order some books! Read up on Lupus and medications you are taking. You are your own advocate and when you go to the doctor or you need to address something with your family, knowledge is the key! Here are a few suggestions for books:
The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace
Living with Lupus: The Complete Guide, Second Edition by Sheldon Paul Blau
Lupus: Everything You Need to Know By Robert G. Lahita

Another thing to remember is to keep talking. Do not get lost within yourself. Find a support group, talk to your family and find a group of friends who will listen to you. Talk to us on here.Just do not keep your thoughts, frustrations and feelings to yourself. It will not only mentally hurt you but it can cause you to flare up.

One idea I can pass down to you that will help you stay in contact with your friends is arranging special nights. Keep them low key and at your house. Create a movie night and have everyone bring their favorite movie and a snack. Once you do it once, make it a monthly event or even a weekly! Have parties where everyone has to bring a special dish. You can eat, laugh and just enjoy their company! You need to stay connected to the outside world and by inviting the outside world in, it will be easier on you and your body.

I hope some of this helped. Everyone has to find what fits them best and you will figure it out.....I promise! Just don't give up and remember you are not alone! There are lots of people who are in pain right now and struggling to deal with Lupus. Just keep your chin up and smile at least once every hour and you will see.....your frown will be turned upside down in no time at all!!!! :arms:

06-20-2009, 05:49 AM
hi annie,

danica gave you some great advice....i just love this group of knowledgeable and compassionate people who struggle every day but still find the strength to help each other.

did your dr. start you on Plaquenil, and how long have you been taking it? Many people get relief from Plaquenil, but it takes up to 6 months for it to work 100%, you might just need a little more time.

Also, i would suggest that you really protect yourself from the sun....if you are out in the sun during the day, this would cause your lupus to flare and keep you from enjoying evening activities.

good luck, keep talking to us, and we will help you.

Angel Oliver
06-20-2009, 07:16 AM
Hi Annie,

Just to say hello and welcome as everyone has given you some fab advice.We are all here to help you always.

lots of love

06-29-2009, 01:31 PM
I am 21 and just got diagnosed about two weeks ago. I got so sick i was sent to the hospital, but at least now i know what caused it. I dont know how to really cope with all of this. There is so much medicine and so many regulations - i feel i cant be a normal 21 year old. Its very overwhelming. Any advice would be helpful.


Angel Oliver
06-29-2009, 01:38 PM
Hello Day and welcome too.I think all the advice on this thread is fab.We are always here for you.Very scary time i know,but keep taking any medications you have been prescribed,rest when you need to and keep talking.

Sending you gentle hugs

06-29-2009, 06:06 PM
Sorry you received the diagnosis at such a young age. Danica gave you great advice. Mountaindreamer and Angel are two very special members (among many) who work hard to befriend new members and to make them feel at home. Hang in there. Learn as much as you can about lupus. Knowledge is a very powerful and empowering thing.

Stick around. You will find comfort and strength from the people you meet here on the forum.

Wishing you well.


06-29-2009, 06:46 PM
I think Danica gave you excellent advice. I was diagnosed with Lupu when I was 17. So I know exactly how you feel, Im 25 now and Ive been through the ups and downs and Ive also had my share of "fair weather friends". Boys that couldnt take being with a sick girl so they dumped me. I wen through the stage where I felt sorry for myself and even became angry. Ive been hospitalized and even been through Chemotherapy for lupus nephritis. If Im weirding you out Im sorry but im saying all of this to say that it does get better stay positive and surround yourself around positive and loving people. Lupus is very physically debilitating but its also very emotional so if you can keep your head up and stay positve you will be okay. When you first get diagnosed its tough because you are experiencing the side effects or the "flare " of lupus. But once it gets under control it gets better.

Prescriptions: cellcept, prednisone, spirnolactone, triamterzene/hctz, prilosec.

06-30-2009, 03:32 AM
Hello again, Annie. :cute:

I can relate to you. I started having symptoms at 16 (15 years ago...augh!), and when I hit 18, it was like..."okay, here I am, all sorts of hurting, and everyone else is having a good time." It ticked me off!! I also had no answers...so that was dually frustrating. Your good news is, you have a diagnosis. Yeah, Lupus sucks...but with meds and lifestyle changes, you can make your quality of life better. Remember that your rheumy is your best friend...take supplements, make dietary changes, reduce stress, exercise...just work on making Annie the best that she can be. Yes, you will still flare and have cruddy days...but you can lessen those with help. Give your meds time to kick in...and don't be afraid to let your rheumy know if they aren't helping. They can always try something else.

Try not to be frustrated. I know it's hard...we ALL do. Just live your one life, and work on taming the wolf. We are always here to help. You're in my prayers!