So what exactly is Lupus, anyway?

12 Jul

Let me start with this:  Lupus is different for everyone.  It is characterized by flares that can come on very quickly.  Random things can happen and hurt when you are in a flare.  This is why lots of people feel crazy before they know it is Lupus.

Lupus is an autoimmune disease.  This means that your body starts attacking itself.  For Lupus, it is not usually a fatal disease.  20 years ago, it was a different story.  But now Lupus is detected in the blood and the organ failure that used to occur can  be held off.

Lupus can affect many different organs, and therefore, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus are:

  • extreme fatigue
  • headaches
  • painful or swollen joints
  • fever
  • anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • swelling (edema) in feet, legs, hands, and/or around eyes
  • pain in chest on deep breathing (pleurisy)
  • butterfly-shaped rash across cheeks and nose
  • sun- or light-sensitivity (photosensitivity)
  • hair loss
  • abnormal blood clotting
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • mouth or nose ulcers

One of the hard parts of Lupus is that you don’t look all that sick. So people sometimes have a hard time understanding that you are not exaggerating your symptoms.  All of the symptoms above are just a byproduct of the damage going on inside. Your liver, heart, lungs, skin, etc… are at risk. Stupid body!  Attacking itself?!?!

Lupus patients are told to pretty much stay out of the sun. If you know me well, you know I LOVE the sun…I love heat, I love Texas weather.  This year has been very different.  Even last summer I was miserable.  I hardly ever went to the pool with the kids b/c it was torturous.  This made no sense to me at the time.  Yet another thing I chalked up to being a lazy mom.  Now I understand. Literally, within a few seconds of walking in to the sun, I feel completely zapped of all energy.  I am instantly overheating.  And all I can think of is finding the nearest air conditioner.  My kids have learned they better bring a blanket in the car or else they will freeze.  I BLAST the a/c at all times.

*** a side note…interesting, I think: a few months ago, I called Lucky and asked what he did to the A/C in the car.  It felt soooo cold and soooo good.  I wondered if he got it fixed (not that it was broken) or had coolant added or something.  He told me no.  I asked if he had noticed how good it felt.  Again, no.  The next week I was sitting in the office and the air came on.  The vent points straight to the computer desk.  I just stuck my head up and let the air pour all over me.  Again, I called Luck and asked him why the air was so much colder and felt so good.  Again, nothing.  He had not done anything or noticed anything.  Then later, I was getting something out of the fridge and the cold air felt so amazing, I stuck my head in.  Ahhhh, sweet relief from the heat.  At that point I realized something was up.  So I took my temp.  Low and behold, fever!  I pretty much have fever every day.  I can’t remember a day without fever.  So don’t be surprised if you see me right in front of a vent acting like a dog with it’s head stuck out of a car window.  It is the best feeling on earth.  And another thing.  Before we found out about Lupus, Luck bought me a fan to stick right outside of the shower.  As soon as I open the shower door, I just stand there and attempt to cool off.  It stays pointed on me a I dry my hair and get dressed, as well.  I sweat SO badly that I can’t cool off after showering.  It was the best b-day gift ever!  I thought i was just getting old and hormonal!  But no, Lupus strikes again!  I love how hindsight is 20/20!  Oh, and all of our fellow Sunday School folks: now you and I both understand why you are all shivering and I am parked in front of the vent fanning myself and sweating!***

Treatment for Lupus usually involves steroids such as prednisone. Which is why most Lupus patients are chubby.  Steroids make people puffy and a good bit heavier.  They make shirts for Lupus patients that say, “I may be fat, but my organs work!”  Gotta laugh about it or else you will cry!  Also, an antimalaria drug is used.  Odd, right? And a whole host of other things.

My immune system is way over active right now.  So the idea is to slow your immune system down. This makes me much more susceptible to catching colds and such.  And it takes longer to fight things off.  So here is a word of caution:  if you are sick, I am gonna stay away!

Okay, that is all for now 🙂  Please feel free to ask questions.  I am still learning about this disease.  There is a place on my blog under my pic where you can ask questions…so feel free.  I am reading lots of books on this and am learning a ton.  But still so much to learn!

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