Monday, May 23, 2011

I am the face of Lupus...

and you can't really tell, can you? That's because there are rarely outward signs of Lupus, and many other auto-immune diseases. It is a disease that lurks within attacking all those areas in my body it so chooses. Normally, the body creates antibodies when a threat appears to the body. With auto-immune diseases, the body creates Anti-Nuclear Antibodies (ANA) that attacks the GOOD antibodies AND anything else that is helpful (organs, blood, bones, vitamins, nutrients, babies... yeah, all that good stuff).

There is no cure and not a promising future. Lupus, as with many auto-immune diseases, shortens one's life. The dangling thread of hope is that the disease goes into remission. For a long time. Unfortunately, remission isn't a formulaic procedure. if I follow these steps and this treatment, then it gets under control. I wish it were so simple. In fact, remission is so dependent on a variety of possibilities and, even then, a patient could be doing everything right; have all pieces of the puzzle in place and the disease still roar out of control.

So, I'm in a flare. Trust me, it's not as exotic as it seems. In fact, it's frustrating, painful, inconvenient, exhausting and dangerous. Not necessarily in that order. A flare means the disease is not only actively destroying parts of my body but is overactive; so it's in hyper drive. This is dangerous because it can cause the same damage (or even death) at a faster rate than it is normally doing damage to organs. And I'm not just talking AN organ. It's got the entire buffet to choose from - kidneys, liver, skin, brain, heart, lungs, pancreas, connective tissue, muscles, skeletal system, etc. My body is in such a hyper active mode right now that the onset of my period (sorry for going there) puts my immune system into attack mode - with fever, body chills, etc. So bizarre!

I am concerned about the damage that could be occurring but no one can stop. I am concerned that when it's waging its war against my body, what permanent damage will I be left with. Yet, this.. this is the most troublesome component of having Lupus: how it effects our home life.

When the Lupus is active, it changes how I am as a wife and mom. I cannot do the same things I can when I'm not under attack. I do not have the same energy, attention or quality of care as I do when Lupus is in its cage. I am not me when it flares... and I can't STAND that! To see the quality of my home life, the interactions with my husband and children suffer at the hands of this dumb disease, truly breaks my heart because since I was in Kindergarten, all I've ever wanted to do was be a stay at home wife and mom ( I had a few other dreams here and there but this was my heart's desire). It makes me so sad to not be able to do the normal, everyday things I should/could/would do if I didn't have this limitation!

However, despite my frustration, I know I'm held in the palm of my Creator's hand. The Bible is very clear that we have bodies that are imperfect and will deteriorate and fade away. I actually discovered a blessing in my last flare-up some years ago. Instead of seeing it as the enemy (which is sometimes hard NOT to do), Lupus, or any disease, can be God's way of prompting us to change the pace of our life. It can be a friend who is forcing us to take it easy. It can be a wonderful way to remind us to slow down and spend more time taking care of ourselves and our loved ones. It is a wonderful way of creating healthy boundaries in one's life. I know that He is in control, not the Lupus. My temporary panic of learning I'm in a flare is being overcome with the reality to rest easy in His arms and listen to the promptings to let go and let God, once again.


  1. I am there with you. Even though they can't tell what my flare is caused by I understand. IT is time to take care of you. Enjoy the wonders of summer that our God has given us. I to am learning how to listen to God when it comes to listenting to my body. Always remember you only have so many spoons

  2. Aw, thanks, Cathy! I LOVE your spoons story and I told Chris and he got it. It is a great visual, even for me, to try to explain the debilitating exhaustion that overwhelms! May you bask in the rest that comes with summer! Thanks, friend!

  3. Oh, and I'd never thought I'd use the word "wonderful" and "lupus" in the same word but I can choose to be bitter or better over having a chronic illness. :)