HoneyBee's blog: "Lupus Awareness"

As some of you know... I have Lupus. I am asked all the time what it is, how you get it, if it's contagious, if it is curable, etc. Lupus is a chronic inflammatory disease... an autoimmune disease. Auto means "self". Your immune system mistakes your own tissues for a virus or infection, and tries to destroy it. It can affect various parts of the body.... the skin, joints, blood, organs, etc.


Below is a link to a website with a lot of good information.... Click on the logo if you would like to know more about Lupus, or make a donation for Lupus research.

For those of you who wonder why I am always sick, complaining about my pains, etc....
Here is MY story:

I have almost died 3 times....
The first time was when I was 20, from blood clots....they started in my legs, and broke off into my lungs. The doctors didn't really do any tests, and just blamed the blood clots on smoking & birth control pills. So I stopped both, took blood thinners for about a year, and then got off of them.

The second time was about a year & a half later, I was back in the hospital with new blood clots in my legs & lungs. Back then, they just kept you in bed and gave you heparin for a week, and the clots turned into scar tissue. I have about 13 of them in my lungs, and my entire artery in my right leg is one big clot. I went back on blood thinners.

Then about 4 years ago, I started being sick, having pain & fevers, and losing weight....I was getting weaker each day, and sleeping more & more. I had some blood tests done, and they weren't sure what was going on, but knew something wasn't right....They did find out, however, that I had pneumonia, so I was given an antibiotic for it, and had more blood work done. The next day, I was vomiting blood & had a very bad bloody nose. So I went to the ER..... by then I was so weak that I couldn't walk, or even sign the admittance papers. While I was in the hospital, I was given tons of tests, x-rays, CT scans, biopsies, etc. They found that I was neutropenic (my white blood cells were extremely low), even though I had an infection... not only were my white cells low, but I was also anemic. My blood was 10 times thinner than it is supposed to be, and I was bleeding internally (drug interaction between my blood thinners & the antibiotic I took). As they were doing these tests, they found that I was dehydrated & hypokalemic (low potassium)....I had autoimmune hepatitis, pancreatitis, and an enlarged spleen. (I know there are other things that I'm forgetting....There were so many, and I was so out of it). It took them days & days of tests, and I laid there dying, waiting for them to figure out what was wrong. I stopped making blood, and had to have a transfusion. Finally one of the specialists took a gamble, and started treating me before they had a diagnosis. I was given steroids. I started to get better after awhile, and finally they found out I had Lupus. The steroids saved my life. They also found out that I have a protein C deficiency in my blood (caused by the Lupus), and that is why I get blood clots. I will be on blood thinners for life.

I went into remission not long after I was released from the hospital, and I stayed that way for about a year. Now I have been flaring again for about 3 years. It makes me lose hair.....makes my joints hurt some days....some days I am weak....some days I get a fever.... some days my feet swell up like balloons.... and for months I had a rash on my face. I have been anemic off & on over the last 4 years, and have had eye problems off & on. My spleen becomes enlarged from time to time. But it affects my lungs the most.... I have pleurisy (inflammation of the lining of the lungs) and it hurts to breath, cough, sneeze, laugh, lay down, etc. (and the pain radiates into my shoulders & neck). I've been in pain every day for the last 3 years. (Not to mention the headache I've had for about 15 years.) Lupus is so unpredictable....you just don't know what might be wrong the next day, or even a few hours from now.

I go to a lot of doctor appointments, I take a lot of medications (with some pretty shitty side effects, including making me susceptible to viruses or infections), I get a lot of blood tests, I can't be in the sun, and I am constantly in pain. Hopefully soon, my medication will be right, my blood tests will be good, and I will be in remission again. And hopefully next time I will stay that way for awhile!