Today after a month of being diagnosed its all just hit me… I’ve been optimistic untill now I’ve been feeling crappy over the past few days and today it all came crashing down and everything’s hit me all at once 
I’m feeling so low about my diagnosis and its hard not to think about all the bad things that are happening and can happen in the future and how this is going to affect me for the rest of my life… I’m so depressed right now after being so positive for a month and I can’t deal with it I’m just so low and I don’t see a way out if this… I keep crying and can’t stop and I feel so ill with headaches and head problems with a foggy brain and I keep hallucinating things every now and then what is going on?? Could my crash today be neurological??
I think Morgan said it very well. I'm so sorry you are going through this, but we have all been at that same point. I was only 16 when I was diagnosed, previously very athletic and active. My world suddenly came crashing down. It will get better!!!!!!
Are you taking prednisone? That can be causing some of the hallucinations as well. I won't pretend your life will be the same as before, but you can get your lupus under control and be able to live a good life.
Make sure you educate yourself and become very aware of the things your body is telling you. Also make sure you have a good doctor who will listen to you. Making sure you are comfortable with the doctor treating you and you agree with the treatment course they want to take can make a world of difference in getting your symptoms under control.
Hang in there. It is okay for you to grieve. I still have days it is hard to be strong and keep going. Life is short, so enjoy it to the fullest. Make the most of your good days. Don't let the little things get to you. You aren't going crazy. Side effects from some of the medications can be worse than the illness. Sometimes it is a challenge to find out what works best for you.
We're all here for you if you have questions or need moral support. :)
Cayleigh, I totally understand what you are going through as all of us here have same experience. Just stay strong there, rest as much as you can. It is ok to feel frustrated but never giving up on yourself! All the pain and frustration will go away if you stay strong, believe me. I will pray for you.
Ditto to everything everyone has said to you. It is very difficult a lot of days. One of my pet peeves is people who compare themselves to me. They are sore from working out or working in the yard or something like that. I am amazed when they tell me they know just how I feel. NO, you don't I want to say. Depression is horrid anytime but with pain it becomes even worse. Try to be gentle with yourself and know there are lots of us who understand. Gentle hugs!
Cayleigh,
I went through that exact feeling and moment, morn the loss of your old life, but, embrace the new way of living and maintaining health.
Thanks everyone for all your advice it’s just so hard to get used to and I know I need to be patient I’m just such an impatient person and over the past few days I’ve been feeling so ill but I’ve managed to deal with it it’s just so hard at times… I’m glad I can talk to people who know what I’m going through 
you all keep me sane
Cayleigh,
I understand how you feel, and I went through a similar time and learning acceptance of this. I'm still new to this diagnosis, and also diagnosed with fibromyalgia now as well. Friday night was my son's last show choir performance - he's a senior. I've always volunteered, helped with snacks at practices and decorated outside their room and I had to give that all up this year - his last year because of my health and my surgery. I was in the front row of all of his performances though, hobbling in on crutches. I would have loved to do more, but I'm happy that I was able to do what I did.
Cayleigh....
There will be lots of up times and down times along the way, as you learn which medications work for YOU...and which don't...and which doctors you like and which you don't. The thing I've found most helpful is to just let yourself be whatever and however you ARE each day. Some days you will be strong and determined...and that is fine; some days you will be tired and weak and achy, and that is fine; some days you will be depressed, and scared, and sorry for yourself, and that is fine; some days you will be critical of doctors, yourself, and others, and that is also fine. In short...give yourself the right to be a human being who is imperfect AND perfect...sometimes very sick and other times not AS sick...and take it one day at a time. You will learn the rhythm of this disease...whether you want to or not...so the best thing I can think of...even when it is me...is to give myself the permission to be whatever I am each day...and know that no one day is a predicator of the next. Life is like a merry go round...and so is lupus. If you can do one..you can do the other. Best of fortune to you as you go...and just think...you will get to learn patience...something you yourself say you need. Hugs...an old lupus survivor.
Christy said:
Just a quick question, do you ever have circulation problems and your hands turn red with white blotchy spots? This is recently happening to me.
Thanks!
I have had that Christy...and sometimes my feet do as well. Usually they itch terribly either during this time...or as the blotches start to fade. So far its always gone away...and when I tell the Dr.s about it they usually say it sounds a bit like Reynauds which is still another immune disorder type thing. I have not had to have any special treatment for it yet...it just seems to come and go for no particular reason that I can attach to it...unless it could be when I am a bit more tired than usual. Hope yours stays as vague and fleeting as mine has so far. Best of luck.
I would be very interested in knowing more about the alternatives you have used for steroids.
Dobby
lone wolf said:
Hello Cayleigh: Be patient with your ups and downs. Life is certainly affected in so many ways with Lupus. I have been diagnosed sonce 1994, and have experienced many odd and frightening symptoms along the way. With a new diagnosis, I would advise you to study global approaches to auto-immune dysfunction; meaning medicine that comes to us from other countries. Don't let anyone tell you that these approaches are taboo. They are ancient with long track records, and have so much to offer those of us with lupus. I am 61 years old and have never taken a steriod, although the lupus that I experience can be severe at times. There are other ways to treat your dis-ease, and your mind as well. Find good teachers and good doctors who are interested in the whole person, and not just in chasing symptoms around. If you want mroe specifics, please let me know.
Be Well,
lone wolf
Ione wolf, I too would like to know about alternative treatments.
Christy said:
Just a quick question, do you ever have circulation problems and your hands turn red with white blotchy spots? This is recently happening to me.
Thanks!
Yes my hands do that too! They will also itch and peel! I have pictures on my page if you want to see them!
Deenie
Yes, this is called Raynaud's Phenomenon and happens to people with Lupus. Your blood vessels constrict (causing the white appearance) and then turn red/blue when the blood rushes back. This can be triggered by cold or stress. The best thing it to try and stay warm and run your hands under lukewarm water if it starts to happen again. Hope this helps!!!
Christy said:
Just a quick question, do you ever have circulation problems and your hands turn red with white blotchy spots? This is recently happening to me.
Thanks!
Hello, it is okay to feel this way!! But us “Living with Lupus”, special to ourself and our loved ones -not forgetting those that are here on this site. Smile. Take a deep breath just live for this moment of time!! Take time to feel the joy of what is here for you in and at this time , yes we all wish that this was not us-but make the best of the NOW time-in other words LIVE. Take and use every moment to the fullest , don’t let this STOP you from being yourself (even with the bad days ), remember that you have a say in who you are !! Smile. Yes depression do come with this Lupus stuff , sad to say but learning how to manage is the main factor with this. Monitor everything that you do , yes make a journal of everything day to day -even if the day is bad, list the things that you could do , the things that you need help with , how you felt after you did it, if you got tried while doing things , and also , how long it took you to do it. Just keep track of everything for about a month or two -depending on you (it may even take longer for ) , then , just keep tab , until you can put it into a cycle for you to do daily norm. Yes it is easy to say than to do -but you can cause we are fighters at our own will with the help of the higher power of GOD!!! Hang in there and keep your spirit high with Hope and Prayer…Beverly L.