RichieD - I totally get where you're coming from "I know what it is to suffer, I have pain and misery every day of my life. I feel compelled to speak out when I see someone headed for medical issues they could easily avoid. " And, I too, have severe allergies to "chemicals" especially those that burn. It sends me into an asthma attack of epic proportions.

But, I don't have the energy to try to tell others how to live their lives, so more power to ya! I barely have enough energy to get out of bed...and that's "iffy" most days.

I've often asked myself (and this is for RichieD, Kristina, and anyone else who cares to listen) if something I did or didn't do caused this...could I have avoided spinal cord damage, a stroke, severe joint damage and everything else that comes with this awful disease. Truth is, I don't think so. I know I could have worked on the stress part of my life better, but as I've mentioned before the US way of life doesn't lend itself to stress management. Not a cop-out, just the way I see things in retrospect. I was always a "health nut" and worked out at the gym at least five days a week. And still, this nearly killed me, and absolutely maimed and disabled me.

I blamed myself for a long time - what did I do? What didn't I do? But the truth is...Lupus was beyond my control. It was like a gun waiting to go off, then it did.

Thank you both for your comments.

I've done a lot of reading about lupus, and I took away the fact that it hits each person differently. For some people, especially younger women, it can be totally devastating and nobody knows why.

Fitness and a healthy lifestyle protects against many illnesses, but healthy people can still get sick. During the big flu epidemic of 1914 to 1918, the virus seemed to particularly target young, healthy adults. That was a terrible shock to those who thought disease only happened to old and weak people or young children.

Well, this is just way more then I ever thought it would be, I have to tell you its pretty cool it reaches people in the UK and that really makes me hopeful that maybe I will get better. For me I keep getting worse almost on a daily basis now.
The food has defiantly been a big key in my illness and I think if the doctors would get on these chat rooms, there is no way they could say diet has nothing to do with this but the sad thing is that its all hit and miss because it is effecting us all differently.
Recently I have been eating more milk products and I have a touch of lactose intolerance but it has never actually hurt me before, and this week I have had internal bleed and they have no idea why. They think it has something to do with inflammation of my intestines.
I really think this might kill me, does anyone know do people ever die from this?

Hello again Miranda,
I am so sorry what you go through right now and I have no idea what it could mean and please ask your doctors about it urgently. Do the doctors have an idea what it means? Does anything significantly show in your blood-tests? Is your body lacking any nutrition or anything else etc.?.
Over the years I have had to make many food-provisions and I had to think and calculate over a long time which vegetarian food to eat and which vegetarian food to avoid. This has always been very difficult and it still is, because the only thing I can rely on is my instict. Sometimes - out of the blue - I feel a fancy to eat a certain food i.e. beetroot-salad and then I buy a few fresh beetroots, cook them, let them cool and then I create a beetroot-salad and it has proved, over and over again, to be the right food at the right moment for me and obviously my body needed it. I have noticed - over many years - that it is vital to develop my instinct about what to eat or do, in order to survive with this SLE/MCTD...
For example, over many years I always drank milk as a little snack in-between meals if and when I became a little peckish.
But the milk-production has changed a lot over the years and my body can no longer tolerate any milk or any dairy-products ... Ever since I noticed that, I changed over to Almond-milk for everything, even in my cornflakes and coffee...
For me all this has been a long learning-process and very often I still have to think on my feet straight away ...
I wish you good luck and I do hope the doctors can help you to sort out your medical problem as soon as is possible.
I am thinking of you and I do wish you good luck with the doctors and hope for a quick diagnosis for your new flare-up-variation and I do hope the doctors can help you very quickly.
All the best wishes from Kristina.

Miranda - if you're talking about lupus (does anyone know if this can kill?) yes - it can and it does. It nearly killed me and I cannot emphasize that enough.

If you're talking about food allergies/sensitivities (can this kill me) yes, it can. I have a couple that are sure to "do me in". I've even thought about getting a tattoo in case I lose consciousness.

Have you been tested for celiac disease? I'm sure you know this already, and I found out the hard way, once you have one auto-immune disease it is quite likely you'll get another. It's possible you have celiac disease. I'd ask to be tested. It can cause serious internal bleeding in the intestines.

However, Lupus alone can cause internal bleeding - I've had that happen before on a fairly serious scale (2 pints of blood). Then I had my gall-bladder and spleen swell to dangerous sizes. They removed my gall bladder, and did a "wait and see" with high dose steroids for my spleen. The only reason they didn't take it as well was ...I hadn't signed a permission slip and had no-one there to do so.

Lupus nearly killed me more than once, and certainly maimed me. So, be careful and make sure your rheumy knows what's going on at all times.

(I know, easier said than done)

I have spoken to my family practice doctor where I live it is almost impossible to see a rheumy doctor it take me 3 months to see him every time so I find it easier to got to the family doctor and tell my rheumy later. My family doctor is so wonderful I think he might even be better then all the specialists of course I would never tell them that because they think they are the new aged gods and we should all bow before them LOL. My doctor thinks I have chronhs disease and yes I have been losing a ton of blood the nurse I talk to all the time scolded me as if I was a small child for waiting a few weeks to say something about bleeding as bad as I am, she said people end up in the hospital all the time for what is happening to me but I just get so tired of going to the doctors.
Yes I was referring to Lupus killing people I just wasn't sure if there have been people dying of this because I just cant believe that something this horrible isn't talked about more until I started getting sick I had only heard about it once and that was in college in a class.
I think if more people knew what this did to you and that normal health people get this for some unexplained reason maybe there would start to be more effort put towards finding a cure for this or at least a prevention but that is the little kid dreamer inside of me coming out.
Kristina1 I love almond milk and that does not effect me like cow milk. I am a girl though and when I get sad I always hit the ice cream hard and I pay dearly for it with tons of stomach pain and lets just put it this way no one wants to be around me after that. LOL

Thank you so much for sharing, and I would love that beetroot salad receipt. You don't have to give me your receipt but it does sound interesting I will have to scroll through my better homes and gardens receipt book and see what I can come up with.

Ps I wanted to apologize for my grammar. I always go back into my post and see all the comas and periods I left out, sorry if my writing confuses anyone.LOL

Oh don't apologize. If you're sitting upright or lying down and able to type - count that as a win!

Chron's - it's another issue that plagues some of the members of my family.

I still have that dream too: Lupus will be cured. But, you're right, nobody knows what it is.

I always say: "Lupus is like cancer, but cancer gets more respect."

I'm sorry you have Chrons in addition to Lupus. I have several A/I diseases. It gets tiring...my health and its management seems like a full time job with lots of overtime. So, I know what you mean when you say, "I get so tired of going to doctors". My doctors don't get it when I say, "I really didn't feel like coming to see you...I couldn't."

Get well...I hope you feel better soon.

PS Here's a new promo: http://www.lupus.org/action/know-lupus

We should never be fooled into thinking that lupus is some benign dysfunction of the human body. Even though there are a great many people who continue to work, stay physically active, and "manage" their lupus...that doesn't change the fact that some patients are severely impacted by this disease.

I'm fortunate that my illness, if it is lupus, is not completely disabling. It's often that way with seniors who have lupus. But I feel sad about those of you who are more deeply impacted and live in fear of what will happen next.

I hope somebody comes up with effective treatments for those of you who suffer the more severe manifestations of this terrible illness. Anything I can do to provide support or do online research, don't hesitate to ask me for my help.

Well said, RichieD.

Like any other disease - including cancer - there are different points on the spectrum. Like skin cancer - if caught early - it's no big deal. If not or it affects an organ - it's a really big deal.

Lupus is much the same: Some people only have "small" flares - that I'm sure don't feel small to them - that includes a fever, a rash and some joint pain. Others...well, we have seizures, joint swelling/immobilization/pain, pancreatitis (ouch and also deadly), brain swelling, permanent nerve damage, spinal column swelling, kidney involvement, and the list goes on....

It all depends on where we are on the spectrum of the disease. But, it's never a "small thing" or "no big deal" as it's so often been described to me by those who don't understand it.

Hello again Miranda,
here is my beetroot-recipy to try out: I usually cook the beetroot according to their size: smaller one's are cooked for about 45 minutes, bigger one's can take up to 90 minutes. After cooking them, I let them cool down and then I peel them carefully and cut them into thin slices. Then I mix into the beetrooot two spoonful of cider vinegar (cider vinegar is known to be very healthy for the heart) and one or two spoonfuls of Extra Virgin Olive Oil and then it is all mixed I and that is that.
Bon apptit and kind regards from
Kristina.