Hi Torig,
So sorry to hear about your news.
I can offer a little help for you (very little, but.....)
Correct...there is No cure. I was diagnosed with SLE in 1984, so I've had it for quite awhile. There are two types...Discoid, and Systemic. I have the later. That simply means that it can involve any or all systems within the body.
Discoid is the lucky one if you can call it that.....it mostly affects the epidermis, and a tell tale sign is the reddish mask across the bridge of the nose, and on the chest. The kicker is you can actually have both or it can decide to go back and forth on you.
It is a disease of the autoimmune system where your immune system attacks connective tissue in your body that it no longer recognizes. It can also come from chemical exposure, or hereditary.
In my case I feel it came from heavy Agent Orange exposure in Viet Nam, but the VA does not recognize that as one to the known diseases resulting from that lovely chemical, so I am in limbo as far as that's concerned.
Now, what can you do?
Well for one ...do exercise, you will notice it is that it seems impossible to want to put yourself through that, but believe me it helps. I've had bone involvement (which was the most painful I've experienced), skin, muscle, ligaments, and the most scary I've experienced was kidney....(that is the one you want to never ignore) which is usually the cause of most Lupus fatalities. I was lucking in that I actually went into remission before it won
. And yes you can go into remission!
Unfortunately it can come back when it want to
Take your anti-inflammatory meds that you are prescribed, be careful of steroids, and resist those if you can. Take some Glucosime/Chondroitin (I may have misspelled) daily. I take about 3000 mg. a day. And if not already prescribed you probably need an anti-depressant. All of this helps!
Having lived with this unwelcome visitor for a long time I can tell you that everyday is a battle (that and GD will get you cup of coffee for a quarter), but you can have good days, and get lucky ever so often. My longest remission was five years. I'm back to muscle and bone involvement now, but I do exercise, and it does help. I have days where I feel as though I've got the flu (sometimes I've really had it), and sometimes it just feels like I've been worked over by a hammer.
There are support groups out there too!
If I can help you PM me (I don't know if you can yet since I haven't make that many posts yet), and I can maybe lend some light on the subject.
The last thing is that it is livable, you can live a full life with it, but you must not ignore symptoms, especially kidney.
But my way of coping is simply not wanting to let it get to me.
You will notice that it is an insidious disease in that everyone will tell you that you look great! But inside you feel like crap, so don't let that get you down either, just smile and go on.......
