Lupus and Me

I get very fatigued, yet have insomnia at the same time. Probably why I am fatigued. It's hard to sleep when you hurt all over and can't even toss and turn because it is too painful.

I've always been weak.

I ache all over. My muscles. My bones. My joints.

No fever. Occasionally a little. Not much. Mostly none.

Skin rashes in bad and inconvenient places.

Occasional stomach discomfort.

Hardly any headaches. Normal in that regard, I guess.

No dizziness.

Chest pain during high stress activities or incidents. Definite shortness of breath.

Occasional vomiting with indigestion from you know where, much like symptoms from gall bladder attacks. Same MO.

Skin tenderness, like being sunburned where there is no sunburn on thighs and scalp.

Steady, but very very light hair loss. Enough to have to clean the bathtub out after washing -- about 5 to 10 strands each time.

Dry eye syndrome. I thought my vision loss was age...but the dry eye part is not age.

I feel as if my whole body is swollen, like you feel when your blood pressure shoots through the roof, only I don't have any high blood pressure -- mostly in the mornings as I wake up, and during high stress incidents and activities.

This is my life with Lupus. This is why I sought to be tested for everything to find out what was wrong with me, to make SURE it was just age -- which now I know it is not.

And, it is also why I have always avoided anything stress-related. I have always felt this when stressed -- but never to the extent that it stayed with me until lately. I always said I was allergic to stress. Now I know how true that is.

It is also why I have been saying that I was addicted to endorphins. Anything that provides my body with endorphins makes me feel physically more "alive".

Yes, Exercise is good for me. But it is hard to exercise when no matter how much you exercise, the pain won't go away. You just feel more "awake" and "alert" and have more energy, but the pain is still there. All the symptoms are still there. And, exercising irritates that and makes you feel worse, but makes you feel better at the same time.

That's why when I worked jobs where I had to be physically active, I pushed myself hard, but when I got home I collapsed and didn't want to move until I had to go to work again. It is also why I always sought jobs away from sitting at a desk -- because I knew I needed the exercise, and money is a motivator.

I drive now. Not enough exercise. I can't wait until the pool opens up again.

And, no, it is NOT in our head.

It is listed among the top debilitating diseases with the Social Security Administration because it is REAL.

Failure to treat it as a disease, with the right medications and therapy, can lead to massive heart failure, Kidney failure, numerous brain failures among a myriad of other more physical problems.

What is happening in my body is that my body is allergic to itself. My immune system is attacking my own body. That is why it is labeled as an "auto-immune" disease.

It is not contagious. It is not as deadly as AIDS nor can it be transmitted in any way. It is just there. The cause could be genetic, environmental or something else. No one knows exactly why it happens. And, it effects different people differently, which is why some are completely debilitated, and some live as normal a life as possible for years. I think I am one of the latter. However, over time and as we age, the symptoms will progress to critical. It is the natural flow of the disease -- which is why it took me so long to be diagnosed.

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