View Full Version : newly diagnosed
07-11-2009, 08:33 PM
I am a newly diagnosed SLE fighter. I have battled with symptoms for longer than i could imagine. I am a 37 years old female, who is fighting daily to deal with this diagnosis. what advice would you give to a newly diagnosed person going through a terrible active period?
07-11-2009, 09:23 PM
I'm right there with you, my dear. It took me 16 years for a diagnosis!
Best thing you can do is to take care of yourself...make best friends with your rheumatologist, eat right, take lots of vitamins, rest when you can...and educate yourself. This board is a wealth of knowledge...you can find all sorts of tips and tricks on here and see what works for you.
The initial diagnosis is a hard time...expect to struggle physically and mentally with what is going on with you. It's a hard thing to stomach...but in time (it's taken me 3 months), you will learn what makes your body happy, and how to deal with flares. You'll still have your bad days...we all do...but you'll learn how to cope. That's so important to do.
Lastly but certainly not least, make sure you have a good support system. Family, friends, or anyone you can hold near and dear...educate them as well, so that they know what you are going through. Sometimes just having a shoulder to cry on can make all the difference. Know that we are always here with a knowing ear anytime you need us!
Welcome to the board...can't wait to get to know you better!!
07-12-2009, 06:59 AM
First I wanna welcome you with a big hug!!!!!!!! The diagnosis stage is one of the toughest with lupus. But now that you have a clear answer you should be fine. Now you can begin to get treated for the disease. Emotionally lupus is very debilitating on top of physically but the most important thing is to stay positive and try to keep your stress level down. I know its hard at time with everything else you have going on in your life. But as you live and learn more about yourself and the lupus you will find your own way to cope with things. Surround yourself around loving and caring people. Talk to us on the site if you have a question, dilemma or whatever. You will be just fine.
07-12-2009, 09:35 AM
Hello n welcome to the site. I know its so frustrating and scary, but just keep talking,we will help you through this,give advice,make you giggle,send you hugs to help you through it.
Always take any meds the doctor gives you.Rest where n when you need too.Cover up n use sunscreen.Eat a healthy diet if possible....im naughty cause i live for chocolate:valentine2::laughing-at-you: but hey,it keeps me going lol. We are all here for you,so you keep posting and we'll help you along.
07-12-2009, 11:15 AM
hi dasar rn,
welcome to this wonderful group of world-wide members. You will find so much knowledge and compassion here, and we are always here to help.
You have already been given great advice. I would just add to protect yourself from the sun and heat. There are several threads where we specically discuss sun protection, so make yourself at home and look around. If you have any questions, do not hesitate to ask us....we are always repeating ourselves, because we all suffer from lupus brain fog, and forget what we previously wrote.
take care, treat yourself as your number one priority, because you are.
07-12-2009, 11:25 AM
Hello and Welcome Dassar RN:
You've already taken a big step in coping with your diagnosis; participating in a support group and learning as much as you can about the disease. We here at WHL always advocate education, support, appropriate life-style changes, and being pro-active in your health care.
We are here to help you in any way that we can and you will find that, whenever you need assistance or information, there will always be someone here when you need us.
Welcome to our family and please know that you are not alone!
Peace and Blessings
07-12-2009, 02:45 PM
Hello dassar RN.... :wavey:
Just wanted to add my welcome to the bunch.
Sorry to hear you've just been diagnosed...I remember being diagnosed, 27 years ago for me. In remembering all that I went through, I would say the best thing you can do is realize that there will be many different feelings, emotions...that follow the initial diagnosis, and it's okay....even important....that you allow yourself to experience them in whatever order they come.
For me, I remember the shock, the feeling of being blindsided, of disbelief, and fear and uncertainty....and then throw in some anger, very, very intense anger. And the questioning....."why me?"....that's a very normal one. Heck, I even remember the denial phase. That one came later, after experiencing everything else, I decided that if I just ignored it and went on with my life....then somehow it wouldn't be true. Paid the price for that one...but I did come to find that it was a normal thing to feel when you've been handed any diagnosis.
Go ahead and allow yourself to feel whatever comes with your diagnosis....and to not feel one bit guilty for any thought or feeling you have as a result. I did a lot of questioning of myself as I moved through the different emotions that came with finding out I had Lupus. And, of course, this was a long time ago, so I didn't have the internet to come to and find a support group, to ask questions of others going through the same things. I muddled through mostly on my own.
And then a couple of years down the road, I learned that sometimes you'll move back through different stages of emotions, because there are still things that need resolving. For me, anger and jealousy (of healthy people) are ones I've returned to at various times over the years.
My main point in sharing this is to help you understand what took me years to realize.....that there are strong feelings and emotions that come in stages after your diagnosis, and we are all different, so the way that we, individually, work through those stages is completely normal for each of us. Allow yourself to feel....and grieve. And never feel like you have to "get over it" at any rate other than what is right for you.
A huge help for me along the way, was finding an amazing therapist (counselor) that allowed me to talk about my life with a Lupus diagnosis in a safe, compassionate, creatively helpful environment. It was a safe place where anything I felt about Lupus, or said about it, was okay and encouraged. And, of course, completely private. I spent a couple of years seeing my counselor and she helped me tremendously in dealing with the intense emotions, and in learning how to live a fulfilling life, in spite of my Lupus diagnosis.
The things that she helped me deal with, in turn, helped me learn how to be a better patient and a better advocate for my own health and happiness. And she helped me learn how to identify the biggest stressors in my daily life and reduce them drastically. That has made a huge difference in my day to day health.
I have been in remission for 16 years now....and I believe part of the reason is because I sought help from a mental health professional. The other part is because I was blessed with an extremely knowledgable, compasisonate doctor that I have had for all of those 27 years.....and because I am a fighter that will never, never give up. I have found a strength from within that I did not know was there....and I use it in my battle every day.
Look for yours......
07-13-2009, 06:52 AM
Sorry to hear of your diagnosis, it is a very difficult and confusing ordeal. But the diagnosis is the first step to getting back on track and feeling better.
One thing I would recommend is trying to stay active in some way shape or form. Even things like swimming and gentle yoga can work wonders!
Another is staying positive. There will be many rough patches, no doubt about that, but once your body adjusts to the new meds and you figure out the specific triggers for your flares (sun, stress, lack of sleep etc.) it will get better. And there is always hope for remission.
Another thing I would suggest is going to see a therapist. Just like your body will need attention so does your mind! This is a tough disease to deal with and therapy is a really great way to get your frustrations out about anything and everything that is bothering you. It's a wonderful stress reliever!
Hope this helps & good luck!
07-13-2009, 03:18 PM
Welcome to the site and so sorry you have been diagnosed with Lupus...SUCKS in a big way. Turns and changes everything not to mention dealing/coping with the pain. Best advice is to try to write down anything you feel or encounter that seems abnormal. Don't push yourself...what your mind says you can do your body will say you can't and listen to your body. Resting/sleeping I think is Key to recovery. Log on to this site as much as possible to vent and voice your concerns/mood/etc. You will find nothing but love, cyber friends, understanding, and support that other's without Lupus can't understand or comprehend what you are going through
07-14-2009, 11:00 AM
Welcome to our family;
You've been warmly welcomed and given excellent information and advice. I can't add much to what you've already received. I just wanted to make sure that I welcomed you also and to let you know that you are amongst people who understand and that you are never alone when you are with us.
Peace and Blessings
07-14-2009, 02:12 PM
Me? I am still learning as I go..what I believed today, changes tomorrow....so, really what have I learned? Adapt.
07-14-2009, 02:16 PM
"what i believed today changes tomorrow" so adapt. This should be the the opening statement for all Lupus Education mediums. Those few words say it all. thanks again oluwa
07-14-2009, 05:06 PM
hi there !
TRUST ME! i know what your going thru. when i was first going thru my diagnosis, i thought i was going to die.
i wasn't myself at all. i slept all the time, i was in pain...it would hurt to just life a finger.
i was swollen and just felt so weak all the time!
and the worst thing is, nobody could understand what i was going through!
but you just have to get it in your head that you will feel better sooN! those are the best words of encouragement i can give you.
because its true, eventually you will feel better. it just takes time.
i've now been diagnosed for 6 months, and i feel SO much better then i did back in December...
i hope you get better ASAP!
and keep me updatedd!!
07-17-2009, 05:07 PM
many thanks for the encouraging words received. It is greatly appreciated.